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Wednesday, January 6, 2010 8:47 PM CST
HAPPY NEW YEAR!
Hope all is well with everyone. Life in the Frisone household is still chaos! Not only did we have the usual craziness of the holidays but both Rocco and Guiseppe had surgery! On 12/18 Rocco had a hypospadius repair, whereby, a birth defect was corrected. We spent one night in the hospital and came home with a double diaper, about 50-100 stitches, and catheter for a week. Guiseppe had a pretty involved knee surgery on 12/22. He dislocated his patella playing rugby last spring. The surgeon split his shin bone vertically, took cartilage to support his knee cap, then put in 2 stainless steel screws (a few loose ones from his head!) Dr. Fleissner also took some cartilage from the lower part of Guiseppe's thigh bone to pack around the patella to keep it in place. He reattached the patellar tendon. He is in a large brace to keep him from bending his knee. His thigh has completely atrophied from being immobile. His 6" incision is healing. It has been difficult getting around since he is back to school.
It was great to get Christmas cards and catch up on how folks are doing. There seems little time to visit. We even received cookies and a fruit basket! Yum!
We always have sports. Dom is having a great season wrestling. He has 12 pins so far this year. Five were at a tournament last Saturday, all in one day!
Sophia and Maria are playing soccer.
I waited until the night before to sign up for swimming lessons for Mario. Wouldn't you know he cut his finger with a potato peeler a few hours before his lesson was to start. In order for that flap of skin to re-adhere, he could not be in the water for an hour! So he missed his first lesson.
Gotta go. Hope to hear from more faithful friends. I'll try not to wait so long to write again.
Thursday, October 15, 2009 01:18 AM CDT
It seems a redundant refrain but I cannot believe how the time is evaporating. I do not remember being so busy since Frankie was sick. I have to remind myself now how badly I wanted to do the mundane tasks at home when we were stuck in the hospital for weeks. School, chores, and sports seem all consuming. 5 of the kids are playing a fall sport. Now that some of their seasons are ending I'm hoping to regroup. Mark and I are showing our age! We just cannot keep up like we used to do.
Anthony has made a full recovery. No more seizures and the headaches are finally gone. I cannot say he is "taking it easy." With ROTC and 17 credits, he is working the hardest he has ever worked in his life. He seems to be handling it as well as can be expected. I think this experience will help him plan for the next semester, maybe spreading some classes out in the summer.
After several weeks Angelo has recooperated from his surgery. He had some 30+ stitches removed last week and getting around better. The surgeon was pleased with the outcome.
Guiseppe is having a good football season as middle linebacker. Hoban is 5-2 so far this year. His classes are going better. He cannot wait to be done with high school.
Gina seems to be adjusting well to high school. Her honors classes require much studying but she appears to be keeping up. The 1st quarter closes this week.
Maria continues training her dog, Heidi. Her traveling soccer team just finished in 2nd place in her league. She is working hard on her school work: improving her math skills and attempting Spanish.
Dominic's football season just ended. Every week he is covered with bruises but he loves the sport. He also plays middle linebacker on defense and running back on offense. We are benefitting as he is perfecting his cooking skills.
Sophia plays soccer with such intensity. She will finish her last game Sunday but it will not be long before indoor season starts. If she would only apply that tenacity to improving her character, we would be in good shape.
Mario played his first season of flag football. By his last game he learned to block well on offense and follow the guy with the ball on defense. (He also played middle linebacker.) His favorite thing to do is tinker. He will spend hours milling around the back yard, fixing things, or playing with Legos. He has a wry sense of humor for a 6yo.
Rocco is an absolute joy. He is good natured and spoiled by all. One cannot help being attracted to his infectious smile. We all melt. He is attentive to all that is happening around him. He is not to eager to spend time in the chair or crib but there is no lack of people to accomidate him!
Did not mean to drone on like a boring Christmas letter but did want to share a little of what is happening since I am able to write so seldom.
Frankie has been on my mind so much lately. I do not know why. It is not her birthday. I found some photos that show her spunky personality. I get calls at work from kids who were born around the same time as she was. What would she be like at 5 years old? She would adore Rocco. She loved babies! I have not been able to return to Dussell Farm where I took the kids and Nurse Cindy to see the pumpkins, gourds, and fall mums. I have gorgeous pictures from that trip that break my heart still today. My mind still has a hard time reconciling that she was once here but now is gone.
Please pray for the Gmerek family. Gloria is a co-worker who was amazingly supportive when Frankie was sick. We worked night shift together for years. Her encouragement kept me moving along when I did not think I had the strength to make it through another day. Her granddaughter, Allison, who is also a congenital heart, has been in Cleveland Clinic for weeks. She has had a rough time of it and not doing as well as expected. Their family have been through the typical roller coaster ride that just feels unbearable at times. Please keep them in your prayers.
Tuesday, September 15, 2009 11:30 AM CDT
Update on Anthony
Kept in ICU Friday night for observation. Had no other seizures but very painful headaches, high blood pressure, and low heart rates. Discharged Saturday afternoon with pain medicine. Vomited from severe headache. Got him settled in the dorm. He slept. We filled his script. Started to feel better so we returned home Saturday night. He rested Sunday.
I went to work Sunday with a migraine and totally drained emotionally. We have a new phone system that I had to learn. Thanks to a co-worker who helped me through the shift with breakfast a heating pad, I made it through the day. Sophia and Maria had soccer games that night.
Monday morning Angelo, our oldest, had surgery to remove a cyst from his tailbone. It was much larger than was thought so he came home with a JP drain. He seems to be handling the pain pretty well. The drain will stay in all week untill we see the surgeon next Tuesday.
The major from Xavier ROTC just called again saying they were taking Anthony back to ER. He did make it to class today but a headache came on so suddenly and so severely that he was unable to stand up. Awaiting information.
1:30 pm Anthony just called. CT and blood work were repeated to ensure there are no changes since the weekend. Saw neurologist again. Still attributing pain to spinal tap. Feeling better with some medicine given intravenously. Being dicharged with another script. Going back to the dorm to rest.
Friday, September 11, 2009 4:16 PM CDT
This morning we received a call from a major from Xavier ROTC stating Anthony passed out and was on his way to the hospital by squad. Initially it sounded like dehydration. Some time later I spoke with the nurse taking care of him. She asked if I were on my way. She was concerned about how he was acting neurologically. He had IV fluid but did not respond as they thought he should. Mark and I took a private plane down to Cincinnati. ROTC personnel picked us up to take us to the hospital.
Anthony seized in front of the ER physician and nurse. He had an MRI and CT. He was evaluated by the stroke doctors. He had a lumbar puncture to test his spinal fluid. He was tested for H1N1 (Xavier has a significant outbreak.) No fever or other signs of illness. No brain bleed or evidence of stroke. His spinal fluid was clear with no white or red cells. He does not think he has flu or meningitis. He is oriented but not totally normal. He has frontal headaches and keeps his eyes closed but can talk. He has persistent weakness that is unexplained. He has been admitted to ICU and will see another neurologist Thankfully the worst things have been ruled out.
Again we have had tremendous support from family and friends to make it all work.
Wednesday, August 26, 2009 2:33 PM CDT
Today Francesca would have been 5 years old! We started the day with mass. We are beginning the plans for the garden at her gravesite. Mom bought a giant purple mum. We are planning all purple flowers.
My youngest brother was reflecting his relationship with Frankie and shared some of his thoughts in this letter.
August, 25th 2009
Francesca,
We miss you. I miss you. Sometimes your face, your smile can be so clearly visible & other times it seems I struggle to remember what you look like. One thing I never forget is the feeling on my shoulder as you patted it in affirmation that last Easter Sunday you experienced on earth. Wow… Easter. What a perfect day for a Francesca memory.
Francesca, do you remember hearing us at your funeral celebration? Your great uncle Phil encouraged us to tell stories of you… our Good Friday stories & our Easter Sunday stories… so many stories to be told & retold.
Yet there is pain in the fact that OUR stories continue.
It can seem to us that your story is over, in the past tense, a distant memory. But you know as well as anybody: nothing could be further from the truth.
You are Present to us.
It might take a profound act of faith to believe it, but I believe that you are even MORE present to us than you ever could be before. You are no longer limited as we are by those pesky realities of “time” and “space”, you are no longer constrained by those heart-wrenching feeding tubs, IVs or machines.
You are Present to us.
Just yesterday, you were present to me and my mom as we grieved the heartache of hurt and damaged family relationships. As e began to see relationships as nothing but fragile & delicate, you reminded me in that abrupt manner of yours “That’s not true”
Instead, you offered yourself as a model for all relationships, especially those most intimate family relationships. As you stayed there with me, present to me, I reflected on your image & my time with you on earth. I remembered my very first thought as I saw you for the first time. You had survived, but the fight wasn’t over. You laid there in the hospital as a stain glass window, allowing us to see just how fragile life is… Which was the same point Mom & I came to about relationships, how delicate they are, not ever too be taken for granted. But “Wait!” you say again… “There is more…” I remembered what could easily be called my “2nd thought” at the time of your birth, except this thought came almost simultaneously with the first. You had survived! You laid there in the hospital with the strength of a Giant Redwood, demonstrating to us just how resilient life is…
It is in times like this that I pray for such strength, such resilience. When our relationships seem nothing but fragile, remind me just how strong the bonds of family are. When my actions or words hurt the one I love most, remind me just how strong the bonds of marriage are. When my own life seems to fragile to go on… Remind me of you… Remind me that, like Jesus, your story doesn’t end on Good Friday & that like me, like all of us… Your story isn’t over…
Francesca… Pray for us…
Love,
Your Uncle Mike
Thursday, July 9, 2009 7:24 AM CDT
I apologize for not being able to update. I have not been on the computer at all for the last five weeks. I have 576 unread emails. Hope I did not miss anything important!
Rocco is doing OK. He nurses well and often. His face is filling out and he has the characteristic Frisone thighs: short, full, and powerful. He makes constant noises like a creaky door, not so endearing at night. He is up often but that is typical of this age. I am trying to enjoy this stage because it will pass quickly. I'll be chasing him around in no time. He actually rolled over at 6 days! He can work his way across the bed and lifts his head unassisted. The kids are learning to hold him properly. He does not last long in the crib. It's a good thing he does well in the car because it feels like we spend a good deal of time driving around.
Angelo is still working at the YMCA. He takes good care of our yard. Hopefully, getting his drivers license soon.
Anthony is spending his last days of "freedom" visiting friends, working out, and learning to sew. Mrs. Jordan, a woman from church, a lifesaver to us, is teaching him.
Guiseppe is recooperating from knee surgery from an injury he sustained in rugby. He should be well enough to play his last year of football.
Gina just finished summer gym at Hoban. She attended JAM (a program that fulfills all her service hours required by Hoban.) She worked at a camp for disabled kids the last 3 days. It was very hard not to talk to her all that time. She will be attending MED camp next week at NEOUCOM to help her decide whether to pursue a career in medicine.
Maria has taken a bigger role in helping out since Gina has been gone so much. She is busy with her dog, Heidi, a Wiemeriner. She takes her to dog class and may eventually compete with her. Maria is inbetween soccer seasons but has been asked to compete in swim team at the YMCA. I don't think that will win out over soccer but we will see. She and Gina will be helping out at our church festival this weekend.
Dominic and Sophia are in tournaments for baseball and softball respectively.
Mario is enjoying just playing at the ballfields and riding his bike. He is getting taller all the time.
Mark had knee surgery yesterday. His meniscus was torn in two places and the arthritis was pretty advanced. Hopefully, getting that cleaned up will increase mobility and lessen the pain.
I have to gear up to go back to work soon. I am not ready but thankfully am well enough.
"In his kindness God called you to his eternal glory by means of Jesus Christ. After you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation. All power is his forever and ever." 1 Peter 5:10-11
Thursday, June 4, 2009 7:12 AM CDT
This is Gina Frisone speaking with a special announcement.
LADIES AND GENTLEMEN, THE BABY HAS BEEN BORN, I REPEAT, THE BABY HAS BEEN BORN! I HAVE A NEW BABY BROTHER!!!!
On June 1, 2009 at 5:54 pm, Rocco Vincenzo (ViN-CHEN-ZO) Frisone was born. He weighs 7 pounds, 8 ounces, (A nice round number) and is 20 inches long. He has loads of black-brown hair and eyes that look like they belong to a cow. He also has feet the size of Texas, with toes to match.
Oh and, guess what! I was there for the birth! Now a lot of people are asking me what it was like. For all you questionnaires, I can sum it up in one sentence. If it were any more wonderful, I'd have screamed for joy, and any more horrible I'd have to undergo some serious therapy.
Mom and Rocco were resting comfortably in the hospital for the past two days, but now they're home:) Another weird thing about Rocco. When he was in the hospital, he didn't cry much after the birth. Mom said his mellow behavior is probably going to last as long as I would if I took a vow of silence. She was right. When he came home yesterday, he gave a few lusty howls when he woke up from his nap. Ah well. At least it means he has healthy lungs!
But he really is a good kid. He looks a lot like Pudge (Mario to you) and Frankie. He has a round head and little button nose and full lips. He looks cute as it is, but he looks positively adorable when he opens his eyes (Which isn't often.) They're big and dark brown, but he only opens them every so often, 'cause he doesn't like the light I guess.
Uh, oh. There goes his lusty howl again. I better go help Mom. This is Gina Frisone, signing out.
Friday, May 29, 2009 4:35 AM CDT
Baby news
I went for my weekly appointment with the midwife on Wednesday. I had gotten increasingly uncomfortable over the last 24hrs. My abdominal measurement was 2cm smaller than the week before. I knew the baby did not shrink. Last week I was 1cm dilated and head down. He actually turned sideways! His head was on my L side, his spine across the top of my abdomen, his bottom on my R side, and feet down. Thursday I went for an ultrasound. He had flipped again. Unfortunately, still sideways (transverse) but his head was now on my R and bottom on my L, spine still up. Because he is so active, trying to turn him may not be effective. I am 38 weeks. So the current plan is to go to the hospital early Monday morning, sample the amniotic fluid to test for lung maturity. If lungs are mature, the doctor would attempt to turn the baby head down, break my water so he stays in that position, and deliver vaginally. If lungs are mature and the physician is unable to turn him, I would have a C-section. The only way we would not have a baby Monday is if the lungs are not mature, which is unlikely but the test will let us know for sure. The danger in waiting to induce would be that if my water broke prematurely, the baby's umbilical cord could be compressed causing distress. I would have to have an emergency C-section after getting to the hospital by squad. Not a favorable senario for baby.
Thankfully, we had a big celebration for Anthony's high school graduation last Sunday. We just show up to the ceremony this Sunday. All the work was done last week, to my relief.
Although I am not as ready as I would like to be, we have this weekend to pull it all together. My most challenging task is to not overdo it so my membranes stay intake till Monday.
Thanks for your continued prayers and support.
"Trust in Him at all times, O people. Pour out your hearts to him, for God is our refuge." Psalm 62:8
Sunday, May 18, 2009 00:25 PM CDT
Thanks to those who keep checking this site despite my infrequent/sporatic writings. I need a secretary! It brings me great joy to hear from folks who continue to keep in touch even though Frankie has been gone for two years.
Finally, finally, finally Francesca's grave stone has been set at the cemetary. It gives me some relief and closure to have it in place. The process consumed so much time, effort, and energy but it is finally done! Sometime between Anthony's graduation and this baby's birth we plan to put in a big bed of purple flowers around the stone so that there is continuous color from spring to fall.
Last Monday, Guiseppe came home from Virginia Beach where he participated in a steel drum competition. Hoban took second place missing first by 2 points to a school of music. He said it was a great experience. Thursday after returning, he had a concert at school. They sounded amazing, playing very difficult material.
Gina was confirmed by our new bishop on Tuesday. I cannot wait to see what she will do being fully renewed by the Holy Spirit!
Wednesday, Dominic and Sophia had ball games.
Thursday was Guiseppe's concert, Maria played soccer in Medina and we had many household repairs done. The bedrooms are getting painted and the roof repaired due to an ice leak back in January.
Friday Mario had his tonsils out. He had trouble initially getting comfortable but he has been a real trouper taking his medicine and drinking like he should.
Saturday Gina volunteered at Angelfood ministry at our church. Guiseppe was in a rugby tournament, Sophia in a softball tournament, and another repairman came to build shelves in basement.
Sunday was church, a visit from my sister who lives in Columbus, Maria's soccer game in Wadsworth, and Anthony had honor's night. Immediately after that I went to work for the night.
I only have 3 weeks left in the pregnancy. Things are still going well. Wednesday I will be checked more thoroughly and weekly from now on.
Anthony has exams this week. I believe he is done on Wednesday. His party will be Sunday. We should finish school with my homeschoolers this week and do IOWA testing next week.
Never a dull moment but much for which to be thankful!
Sunday, May 3, 2009 1:25 AM CDT
Ashamedly, I have not written in so long. I have not had time to sit down much less in front of the computer. I miss the connection with all the wonderful folks who cared for Frankie and those who have supported us so faithfully.
There are so many important things going on in the midst of the everyday craziness. Sophia made her First Communion the Sunday after Easter. Gina will be confirmed May 12th. She is just finishing her preparation. Anthony is finishing all the details for his ROTC scholarship and was in the play, South Pacific, the last weekend in April. My jaw hung open the entire play. To see my 220 lb. senior doing cartwheels across the stage. He sang and danced for the first time. It was just too much to believe. The show was spectacular. Another brilliant creation by Brother Philip Smith. He is taking the steel drum band to Virginia Beach Thursday where Guiseppe and clan will perform in front of 30,000 people in a national competition. Brother expects to win.
Dominic is catching for his baseball team. Much improved this year. Hitting well and throwing with more accuracy. He loves the plays at the plate just like Anthony did at his age.
After soccer in the fall, wrestling this winter, Sophia is trying her hand at softball for the first time this spring. The coach pitch team was full so Mark moved her up. She is playing with girls 2 years older and holding her own. She can throw as well as Dom and hits most of what is thrown at her. We will see how she holds up once the games start.
Maria has started her spring outdoor session of soccer. In the game today she made the game-winning goal at the last minute to win 4-3. Mark was quite proud.
After 2 strep infections and contracting mono at the end of March, Mario has to have his tonsils removed. He is scheduled for surgery May 15th. The only thing he is looking forward to is a week out of school!
Gina is working hard to wrap her school work for the year. She is my right arm and keeps me sane with her pleasant demeaner and all the help she provides.
I feel like I am sprinting a marathon. I have been working at the hospital so much more lately and trying not to drop anything at home. The pregnancy is still going well. My husband says I look like I swallowed the nose cone of a 747! The baby is not allowed to come until after Anthony's high school graduation, May 30th. His party is the Sunday before so if we can make it through the actual ceremony we should be good!
I am eternally grateful to all who continue to support us. Your comments are like water in the desert. I am getting testy in these last weeks of my pregnancy. Your notes give me the boost I need to stay positive.
"The glory of friendship is not the outstretched hand, nor the kindly smile, nor the joy of companionship; it is the spiritual inspiration that comes to one when he discovers that someone else believes in him and is willing to trust him." Ralph Waldo Emerson
Sunday, April 12, 2009 7:36 AM CDT
HAPPY EASTER!
It is through Jesus' victory over death that gives us hope. The thought of being reunited with Francesca has kept me alive these last two years. I have busied myself into a frantic pace to help lesson the pain. My mind still cannot wrap itself around the fact that she was here and now is is gone. Spring is full of many of the things she loved. The birds continue to visit and we recall the delight in her face when she saw them; face pressed to the window in complete awe and excitement.
Spring is a reminder of the new life she has now. She is free from the broken body that did not serve her well. She is in the presence of God, in no more pain, in the paradise of heaven.
For us still mucking around on earth without her, it is of some consolation when the hurt of losing her flames again. It still does not compare to the agony of Christ on Good Friday. I am glad that reminder is fresh. We suffer in good company.
Two years since her death. It sounds incredibly short compared to what it feels like since we held her last. Pictures of her still fill our house. Her ornry smile still makes us laugh. No amount of activity can fill the hole in a mother's soul but pouring my entire self into the other children is again a small consolation. Anthony commemorated her anniversary by getting a tatoo of her handprint on his chest. Although that is not what I would have chosen for him to do, it is hard to be mad. All the children continue to grieve in their own way. Some are doing better than others. It is hard to see them in pain with an inability to rectify the situation. We spend extra time on the couch together, hugging and telling funny stories, recalling Frankie's antics.
We have made it through another milestone. One step closer to being together again.
Frankie, save a place for me!
Friday, March 27, 2009 8:05 AM CDT
Please pray for the family Jeff Buskey who passed away Wed night. He was in his early 40s and leaves a wife and 4 children.
THERE WILL BE A DAY by Jeremy Camp
"I try to hold on to this world with everything I have
But I feel the weight of what it brings, and the hurt that tries to grab
The many trials that seem to never end, His word declares this truth,
that we will enter in this rest with wonders anew
But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering
(Chorus)
There will be a day with no more tears, no more pain, and no more fears
There will be a day when the burdens of this place, will be no more, we'll see Jesus face to face
But until that day, we'll hold on to you always
I know the journey seems so long
You feel you're walking on your own
But there has never been a step
Where you've walked out all alone
(chorus)
Troubled soul don't lose your heart
Cause joy and peace he brings
And the beauty that's in store
Outweighs the hurt of life's sting
I can't wait until that day where the very one I've lived for always will wipe away the sorrow that I've faced
To touch the scars that rescued me from a life of shame and misery this is why this is why I sing"
Sunday, March 15, 2009 12:58 PM CDT
The days are so full. It is hard to stay on top of all the details. I have been working 2 days a week for awhile now. I am fortunate to be able to pick up extra hours but am becoming further behind at home. The preganancy is going so fast. I passed my glucose test. I have not had as much time to exercise and am starting to slow down. The baby is very active and the children love to feel him kick. My co-workers had a baby shower for two of us that are expecting. We both received some cute outfits! The boys clothes have gotten cuter than when I was buying for my older boys. My favorite gift is a blue and gold sweatshirt that says "Mommy of 10." Not something one sees everyday! I am so grateful for the generosity and thoughtfulness of so many. We have been through so many ups and downs in company of so many great people.
Last week Gina and I registered her for classes at Hoban High School(where the boys attend.) She tested so well on her entrance exam she was placed in all honors classes. She has a rigorous schedule but if anyone could do it, she could. I will miss her terribly. We have had an amazing experience all these years homeschooling. I hate to give that all up. I hope to maintain the same closeness that we share but know it will never be the same. I pray that she keeps her head on straight and can handle the challenges ahead.
As Frankie's anniversary approaches I think of her more often. This second year has gone by much faster than the first. The memories that devastated me in the beginning just trip me up from time to time. There are lots of triggers at work: an ambulance backing up to ER; The pharmacy where we were so often is right by the time clock where I punch in. Where it used to feel like a bomb was falling on me, now is a tug at my heart that triggers that longing but not the feeling of being unable to function. There are days when I still cannot believe she is gone and cannot stand the feeling of not being able to hold her or be close to her. I keep her blanket at my bedside and snuggle with it when I feel at my worst. Once we start setting things up for the new baby I am sure some wounds will be reopened. But we will do what we must to press on. No one would be happier about a new baby than her! I just wish she were here to share in her brother's life.
Thursday, February 19, 2009 11:00 PM CST
Since I have been picking up extra shifts at work I have been finding little time to write. The pace does not seem to slow down. I am slowing down but there is no lack of things to do. Dominic (9yrs old) qualified for states in wrestling. Unfortunately he got croup a few days before. Mark still took him to the tournament. He lost twice because he was weak and having difficulty breathing. He lost about 5lbs in just a few days. He is doing better and on to baseball! Batting cages started this week. We finished the first session of swimming lessons. The kids did well. Mario is hilarious. Having never taken structured lessons before he adapted well and became quite comfortable in the water. His teacher was great. There were all boys in the class. They wore a flotation device on their backs. Mario looked as relaxed as could be, floating on his back. The only thing missing was an iced tea.
Maria and Gina are still playing indoor soccer. Sophia finished wrestling much earlier. Anthony has had a concussion and will be out for the rest of the season. He has had some great opportunities at school. He just went to lunch at Tangiers Restaurant to hear a journalist speaking. He is working on a big service project to benefit a homeless veteran shelter. He is in the spring musical (as is Guiseppe). He is in an electronic music class writing songs. I was able to hear some of his work at parent teacher conferences last week. He has had an amazing high school experience. He has been accepted to Xavier University in Cincinnati where he will attend on a full ROTC scholarship. He is very excited. It has many if not all the things he was looking for in a school. As one will be leaving another will be coming. At least we will have the summer together.
The pregnancy is going along uneventfully. Starting to get uncomfortable at times but at 24 weeks, that comes with the territory. I think of Frankie all the time. She would have been something as a big sister. She loved babies so much! She was a busy-body at church, wanting to make her rounds to see them all. When we would bribe her to eat we would say "Take a bite for Baby Connor or Baby James" (her cousins). Often she would.
I made a collage of pictures for each child. When we could not hang them all, I put them in the front room where she spent so much time. It is still painful to look at hers. Some when she was such a sick little baby. One when Sr. Jordan held her for the first time. Another after nurse Betty put her hair in pigtails. She was so cute! (and ornery). Hopefully, she will continue to advocate on our behalf until we can be together again someday.
Wednesday, February 4, 2009 11:06 PM EST
Although we are clipping along at the usual frantic pace, things are going well overall. I had an ultrasound at 20 weeks. I went to a high-risk specialist to get an extra good look at the baby's organs, especially the heart. He easily saw 4 chambers and searched for a defect associated with Downs. Everything looks good. 2 kidneys, healthy heart, intact spine, etc. Although the tech and the doc had differing opinions on the gender, a second peak revealed we are having our 6th boy. The pregnancy is going along smoothly.
Last week I thought of Sr. Jordan. She would always get a laugh out of the craziness of our household. Last Thursday, I came home from working all night. Anthony and Guiseppe had the car stuck in a snow drift in the driveway and were late for school. The roof was leaking into the dining room which ended up being torn out later in the day. We lost power to our oven. I managed a 20 minute nap in between repairmen. But when it was all said and done, schoolwork was finished, we pinch-hit with the crock pot for dinner, and everyone was well cared for. I could almost hear Jordan laughing from heaven and I had to laugh, too.
Yesterday, after swimming lessons and dinner I was taking Maria to agility class for our Weimaraner puppy. Sophia and I were driving home. Amazing Grace came on the radio. I told her I wanted that played at my funeral. She then asked if I were the "wretch" she heard about in the song.
Tuesday, January 20, 2009 8:48 AM CST
Hello fellow countrymen,
Just wanted to give you an update on the pregnancy! Actually, Mom says this is the best she's ever felt this far into it. She has also become a exercise fanatic. She goes to the YMCA at least five times a week for 45 min periods. When she's not lifting, she's on the eliptical, when she's not on the eliptical, she's swimming. It has become her pet project to see how far and long she can swim. Her latest record is 45 laps (a mile is 36 laps, by the way). Mom claims the whole exercising thing is why she's feeling so good.
Only down side is that she drags me along with her. Just kidding. Actually, the exercising isn't so bad to me, just not the running part. When I run on a treadmill, I feel like a hamster in a wheel.
But enough about me. The most unfortunate Anthony asked Mom what the big deal about being pregnant was and why women acted like it was such a big deal.
"I mean, it can't be as bad as they make it out to be." He had said "And by the way, what is an epidural?"
The poor soul. Mom described the many painful and tortuous moments a pregnant woman felt and the many annoyances she put up with. Like having to lay on your side for months, or what it felt like to have child squirming around inside of you and making its complaints heard. Needless to say, Anthony left thoroughly glad he was a male.
(For those of you who don't know what an epidural is, look it up in a dictionary or ask someone who recently had a child. You might want the dictionary, it'll be less descriptive!)
Anyway, Mom has been getting many calls from friends of hers who are either pregnant or recently had a child, all of which have funny stories. One the friends who was pregnant overheard the nurse talking to the doctor and referring to her as the 'geriatric patient' because she was over forty. The pregnant friend, needless to say, had a few words with the doctor about the rude nurse.
Uh-oh. Mom is calling me to do some more school work. I better get on it. Be-de-be-de-be-de That's all Folks!
Love,
Gina Frisone
Tuesday, January 20, 2009 8:31 AM CST
Hello fellow countrymen,
Just wanted to give you an update on the pregnancy! Actually, Mom says this is the best she's ever felt this far into the pregnancy. She has also become a exercise fanatic. She goes to the YMCA at least five times a week for 45 min periods. When she's not lifting, she's running, when she's not running, she's swimming. It has become her pet project to see how far and long she can swim. Her latest record is 45 laps (a mile is 36 laps, by the way). Mom claims the whole exercising thing is why she's feeling so good.
Only down side is that she drags me along with her. Just kidding. Actually, the exercising isn't so bad to me, just not the running part. When I run on a treadmill, I feel like a hamster in a wheel.
But enough about me. The most unfortunate Anthony asked Mom what the big deal about being pregnant was and why women acted like it was such a big deal.
"I mean, it can't be as bad as they make it out to be." He had said "And by the way, what is an epidural?"
The poor soul. Mom described the many painful and tortuous moments a pregnant woman felt and the many annoyances she put up with. Like having to lay on your side for months, or what it felt like to have child squirming around inside of you and making its complaints heard. Needless to say, Anthony left thoroughly glad he was a male.
(For those of you who don't know what an epidural is, look it up in a dictionary or ask someone who recently had a child. You might want the dictionary, it'll be less descriptive!)
Anyway, Mom has been getting many calls from friends of hers who are either pregnant or recently had a child, all of which have funny stories. One the friends who was pregnant overheard the nurse talking to the doctor and referring to her as the 'geriatric patient' because she was over forty. The pregnant friend, needless to say, had a few words with the doctor about the rude nurse.
Uh-oh. Mom is calling me to do some more school work. I better get on it. Be-de-be-de-be-de That's all Folks!
Love,
Gina Frisone
Tuesday, January 13, 2009 10:53 PM CST
There are a myriad of factors that goes into mourning the loss of a child, especially in a family our size. Although many of the children seemed to cope well, there are remnants of emotion that still surface.
Tonight I did our bedtime ritual then headed back downstairs to finish cleaing, Mario came with tears down his face. I was frustrated because we brushed teeth, had a drink, read a story, etc. and he is out of bed. He finally told me that he was missing Frankie. He cried for 20min. He just said he was sad. I sat with him for a long time. Nothing seemed to comfort him. He eventually fell asleep.
Keep us in your prayers.
Sunday, January 11, 2009 1:07 AM CST
REMEMBRANCE TALK 3008 - ending
One has to release dreams of the future of this beloved son or daughter. Letting go of fear to cautiously rebuild and re-enter the world is necessary.
The vice on the heart eventually eases up ever so slightly. The gaping hole in your chest starts to heal and you find your breath again. The lead apron that slows every movement gets a little lighter with time. The agonizing memories of suffering are replaced with those of happier times. After some time you can say her name without a flood of tears. The searing anger turns to sadness. I am not sure the yearning to be together ever ends but it no longer consumes every waking thought. One moves from the accomplishment of just rising from the bed in the morning to managing a few tasks. Over time one is able to fulfill more duties, when the grief does not rob all one's energy. After a long while, one dares to see a spark of joy in his life. Laughter feels less strange. One can eventually venture out and begin to carry on "normal" conversations. Like a baby learning to walk, we learn to live in this altered world without our child.
I stand with you tonight to give you hope. You can survive but you must choose to do the work. Although painful it does bring the promise of a new tomorrow. A pang of emptiness will continue to visit. Moving through the devastation and on to rebuilding is not a betrayal of our child’s memory; it is a way to honor him or her. As I continue to discern my place in this world and search for some meaning in this tragedy, I pray that I may be as brave as my daughter was and can touch lives in a positive way as she did.
Tuesday, January 6, 2009 7:57 AM CST
Hello Everyone!
This is Gina Frisone live!...Well, not really. I'm here with my co-host Dominic Frisone. Mom sent us here to post the newest on her remembrance talk. So I don't know how long we have before she cuts us off. Oh hold on, shes calling us. Be right back!......Okay! We're back, and don't think that I can't here that groaning in the background! Now I now that you really want to here about the family but we need to do a special brodcast featuring our co-host so heeeeres Dom!
Hi Guys! Now I know you want to know about the family life but I need to ask something from you guys first. As a late Christmas present we children are trying to send Mom to a spa! Now we already have the money, but we need to now where some good places are to send her. So just post some names and addresses, but no places where getting your nails painted costs, like, $50. So just post your suggestions on the Guest book and we can give mom that SPA TRIP! Now back to Gina
Thanks Dom! Now I know you're all just clamoring for some family news and I got some- MOM IS GOING TO HAVE A BABY!!! Hold on a sec, I need to calm myself down...Okay. All good. Mom told us kids about the begining of December and she told the inlaws at Christmas so Im allowed to post it here. We've already decided what gender and name we want the baby to have. We want it to be a girl (When I say 'we' I mean all the females in the house.) and we want her name to be Isabella Luchia Frisone. I just love how that name rolls off the tongue. But not everyone agrees. Just a couple days ago, Mario showed me a picture he had drawn with one big stick person and a little stick person. "Who is that?" I asked him.
"That's me and Max." Mario said
"Who is Max?"
"The new baby."
"Uh, Mario, what's that swirly thing in the background?"
"Oh, that's a tornado."
"Uh, why did you draw a tornado?"
"Because I like the swirlies and its fun to draw."
Cute Huh? The next day he said he wanted the baby named Cody and yesterday he wanted it named Troy. Dad said every child of ours has to have an Italian name or else. Well it is now 9:36 AM and I better get on my school before Mom decides to bring up some very medival ways of torture. Just yesterday she was threatening to have me drawn and quartered so we gotta go. See'ya!
REMBRANCE TALK- Part 4
Unfamiliar with feeing so vulnerable, men struggle to keep tidal waves of emotion at bay. Women work to keep swells of anger and resentment from eclipsing all relationships until the “what if” questions subside. The suffering is so profound, one may shut others out – erect barriers of protection to compensate for the intense hurt. Perceptions may be skewed.
I wanted to talk to my husband about the child we shared. He did not. He boxed up his emotions; put them on a high shelf, rarely to be opened again. He engrossed himself in his work. Although I thought this was unhealthy, I gave him a wide berth to grieve however he decided. It was incredibly painful and disturbing not to be able to share my sorrow with my husband but my sadness was upsetting to him. From my reading I knew this was a very common response that men have when they experience a loss of this magnitude. I chose to talk with friends. I sought out the advice of a bereavement counselor. I continued journaling on Caringbridge. I gained support of the people who wrote back. I read inspiring books like the Chicken Soup of the Soul series. I watched movies of those who overcame great tragedies. I forced myself to exercise, even if it was just walking outside. In the early days I felt like I wore a lead jacket with matching lead boots. The slightest things took monumental effort. Doing things for pleasure seemed unimaginable. How does one rebuild his life with a gaping hole in his chest where his heart used to be? Many told me things will get better with time. It was not helpful when I was fighting for every breath, struggling through each hour. But it did turn out to be true.
In an attempt to glean anything positive from my unfathomable loss I clung to every comment about how others benefited from knowing my daughter. In her short life she moved people to pray more, to appreciate their health. Her perseverance during her suffering inspired others through their difficult circumstances. Although other’s comments did not answer all my questions, I found comfort in their worlds as I strived to stabilize my world. As one emerges into a new identity, it involves a gradual process of letting go.
Wednesday, December 24, 2008 11:38 PM CST
In the flurry of holiday activities, may the wonder of Christmas be yours.
In the noise of hectic days, may the peace of Christ be with you.
In the darkest nights of the year, may the light of Christ shine through.
Thank you for your prayers and support all year long.
Best wishes for blessed and peaceful holiday!
Mark, Jean, and family
Tuesday, December 23, 2008 4:57 PM CST
Part 3
Christmas and holidays show up every year regardless of how you feel. “Holidays remind you with terrible acuteness of all you have lost.” Each family’s loss is unique. One has to decide whether to keep old traditions or try something new. Open discussions with other family members about what to do can be helpful. Our first Christmas without Francesca was especially painful. First it was only 4 months after her death. Secondly, last Christmas she had been so well! She so enjoyed the company, the excitement of the gathering. She wore a pretty dress and twirled for everyone. She enthusiastically played with the new toys. She was the hit of the night. It was two weeks before her 3rd heart surgery that eventually led to her demise. The following Christmas I begged my husband to take a trip. The memories relentlessly bombarded me. I wanted to do anything but our normal routine. The torturous, heart-wrenching pain, from which I had not recovered, returned in full force. I longed to get away. The children were upset. They were hurting but longed for the familiarity of traditions. So I went through the motions completely devoid of joy. It was incredibly painful. I sought the advice of others who have survived the first holiday after a loss. Nothing healed the hurt but some things were helpful. I viewed it as taking baby steps in my recovery.
I worked hard on to improve. Baby steps seemed lame. I fought a constant battle within. I made myself do things that I thought would benefit my body or soul, combating the severe lethargy that overwhelmed me. Because Francesca’s last hospitalization spanned 3 months, the other children were desperate for my attention. My entire family looked to me to make it all better. I was having difficulty surviving, how could I fix this once intact family that now seemed destroyed? Since the younger kids were bouncing back a little more quickly, I sought opportunities where they could have fun and I could just exist. I drug myself to their ball games or to go swimming. They were too busy to notice how bad I felt, they were having fun, the fresh air did me good; even though I was not very good company or up for much conversation.
Ever so slowly, going through the motions led me to a place where I could have a conversation without crying. I could tolerate being in public for short snippets. I underestimated how long grieving would take and how much energy it demanded. I read several book on the loss of a child. I found it helpful to know what I was facing, helped me understand my feelings and better identify my needs. It was helpful knowing the difficulties I was facing in my marriage were typical. We have heard the threatening statistics about marriages that fail after the death of a child. Men and women have so many differences in how they handle emotions in general, adding a loss of this magnitude can make the burden of communicating so much more work. Men and women proceed through the stages of grief at different rates. The needs of each gender are not the same.
After such a loss nothing makes sense. Emotions are erratic, thought processes are unreliable. These factors make it difficult to process the circumstances much less be compassionate and understanding to a spouse. Men are supposed to be strong, in control, and fix everything. Women are typically empathetic and keep the family united. Normal stereotypes are shattered after this monumental loss.
Tuesday, December 16, 2008 7:57 AM CST
Last night we attended the fall sports banquet for Hoban Football. Many spoke of the great season the boys had. Anthony won the "Bull Dog" award for overcoming the difficulties of his hospitalizations, etc. to keep playing. I think it will be a night the boys will remember for a long time. Hoban will be graduating 33 seniors this year. Plans for next season are already in the works.
REMEMBRANCE SERVICE - Akron Childrens Hospital 2008
Part 2
In a book called The Worst Loss, Barbara Rosof described it well in her description of acute grief. In the midst of acute grief you cannot concentrate or make decisions. Reading a newspaper is beyond you. Memory fails; you forget the simplest things. Thoughts of your child crowd out everything else in your mind. Every chore and act you perform evokes memories of her. Every person you meet, every place you go floods you with reminders of their presence and of your loss. You see her in the next aisle in the supermarket, at the movies, in a car passing you. These experiences of mistaken identity, of seeing your child, can be so intense, feel so real, that they make parents fear they are going crazy. You are hard at work. Your mind is actively intensely engaged in the hardest work that human beings must ever do: coming to terms with loss…the essential work of grieving is the facing, day by day, memory by memory, the new awful reality that your child is gone. “When you are flooded with memories, when you think you see her on the street, when you cannot think clearly, cannot remember the simplest thing: Remember you are not crazy – you are at work. “Like a computer churning away at a huge, complex equation, your mind has focused all its energies on the painful, multifaceted, exhausting work of grieving. You don’t thing or remember well simply because all your processing capacity is in use. There isn’t enough left over for the requirements of routine concentration and memory.”
The first several months are the most agonizing, as your head tries to wrap around this new reality. Even though I believe my daughter is in heaven and suffers no more, I could not bear the terrible pain of our separation. Although I believe we will be reunited some day, I did not want to wait that long. One day I sat in the driveway of the library waiting for traffic to pass. I saw a huge MAC truck coming down the road. For a split second, I thought about pulling out in front it to end my misery so I could be with my daughter again. My conscience took over and I restrained myself.
Getting up in the morning was a major accomplishment for me. I did not care about anything, but when I would look in the faces of my other children, every bit as valuable as Francesca; I was motivated to try harder. They still needed to eat, go to the doctor, and go to school. When I returned home from being gone for 3 months, everything was a mess. Every closet disorganized, laundry backed up, the kids’ behavior out-of-line. It was all so overwhelming. I hated myself for being so impaired. They needed me to be well, to nurse them back to good health but I was hurting the most. I cried everyday for months. The exhausting work of grieving zapped my strength, the stubborn fog in my head kept me from thinking clearly.
I read a description that helped me be more realistic about my emotional recovery. “When you cannot function at the level you usually expect of yourself, it hurts. It is easy to fall into scolding yourself, feeling inadequate. The fact is that for now you are inadequate. You may need to remind yourself that if you had suffered a physical injury as severe as your emotional wound, you would be in ICU. You would not expect a person in intensive care to be fully herself or particularly available to the rest of her family. You expect an ICU patient to accept her limitations, not push herself, and give her body a chance to heal. Your injury is severe and pervasive. You will need to lower your expectations of yourself. You must give your heart time to heal.” (The Worst Loss)
Ever so slowly I moved through just existing, to bare minimal functioning, and after months of effort – to higher level functioning. Although I continued to be impatient about my slow progress, I learned what I was experiencing was normal and necessary.
Thursday, December 11, 2008 12:55 AM CST
Tuesday night was a beautiful service. The adult hand bell choir played many wonderful songs. The poems and songs were carefully chosen and meaningful. The sanctuary of a very large church was filled with gifts from bereaved parents to needy children. I am glad I did not know ahead of time that there were going to be 500 people in attendance! My knees nearly buckled as I descended that podium. Thanks to your prayers, I had no major screw-ups.
Several people I spoke with afterwards stated they had been coming for years and years. Although emotional, the service was very meaningful.
I will post my talk over the next couple of days. Some of it may look familiar.
REMEMBRANCE SERVICE –Akron Childrens Hospital 12/9/08
We gather together tonight to remember our children. It is a position few of us expected to be in and will be coping with for the rest of our lives. Hopefully, we can draw strength from each other as we remember our child’s uniqueness.
“Whether we had some warning or our child was taken suddenly: the death of a child is a loss like no other. Parents experience the symptoms of grief more intensely and for far longer than any other loss. For the child’s siblings, their family is never the same.” (The Worst Loss)
Losing a child is something you do not “get over.” “It goes against the natural order of things to bury one’s child. Our comfortable, secure lives, our innocence, all were shattered with the deaths of our children. Now our reality is upside down, inside out and far removed from what we thought it would be.” (Beyond Tears by Ellen Mitchell)
Many of us had the difficult task of fighting a courageous battle for our child’s life. Now we are faced with the unwanted challenge of learning to live a life without them.
Initially one is in shock: the body’s reflex to protect us from the unthinkable reality that our child is truly gone. Numbness sets in to keep us from feeling the true totality of the searing pain. As our mind and body start to assimilate reality we may fade in and out of denial. We hope it was a bad dream, a terrible mistake, a misunderstanding. Denial may bring desperate comfort before the long work of grieving begins.
1.
My ninth and youngest child, Francesca, was diagnosed in utero with a constellation of congenital heart defects so complex few children survive. I spent the rest of my pregnancy agonizing over the details of her birth, trying to prepare as best I could. She had her first open heart surgery the day she was born. She persevered through one nail-biting admission after another, far surpassing everyone’s expectations. Home oxygen, tube feeds, pulse oximeter, many meds, frequent admissions, and her tenuous condition demanded my attention and that of all who cared for her. She developed a feisty personality with a sense of humor and intellect far beyond a typical child her age. She was 2yo going into her 3rd heart surgery. She fell prey to many complications that resulted in a 3month admission. She endured endless procedures and a torturous fluid restriction. She was home only a few days when she threw a fatal blood clot to her lung, on April 10, 2007. We were shocked and devastated. I was thrust into a deep dark hole from which I had no idea how to emerge. The fog would not clear from my brain. I was pummeled with memories. I felt an ache so intense I did not want to survive.
I would awaken in the night. I listen for the whir of her tube feed pump, the beat of the pulse oximeter, the steady rhythm of her breathing. Nothing. Silence. No chubby hands to hold through the crib rail. No cheerful voice to greet me in the morning. For the first time in 17 years there was no baby in our house. The night she died I rocked her body for hours knowing I would never hold her again. I constantly clung to the blanket from that night; the blanket that last cradled her body. I carried it constantly to ease the ache of my empty arms.
(to be continued)
Tuesday, December 9, 2008 6:18 AM CST
"Even the most tragic happenings will turned into good for those who love the Lord and are His Children. Our spiritual rearing is moved along by difficulties we face and the mountains we climb." Dorothy Kelley Patterson
Last Thursday I left to pick up Mario and Sophia from school. I received a call from home saying Gina cut her thumb. When I examined it, there was a lot of bleeding and the cut was slightly gaping. Unfortunately, she cut it across the knuckle. So off to the ER we went! We should have our own private room and physician by now. We got to the suture room relatively quickly but as the tech was cleaning it, he thought the tendon looked severed. An orthopedic resident was called to look at it. The good news is that it was only a 50 ear. Any more would have required surgery! So she was stitched and splinted. We saw the attending ortho doc, Dr. Riley, yesterday. The splint has to stay on a month so the tendon can heal properly. No soccer or swimming for a while. She is actually doing very well, considering.
Tonight I speak at the rememberance service at Akron Childrens. Please, pray that God will give me the words to comfort other grieving parents.
Thursday, November 27, 2008 5:18 AM CST
HAPPY THANKSGIVING!
The pace does not seem to slow down. It is just replaced with new things. My boys who play for Hoban finally lost in the final four last Friday. It was a brutal night to play. They seem contented with their season, going further than most thought they would. Mark, who has been the linebacker coach, will be relieved to be able to focus more on work. I think, overall, it was a bonding experience, just very time consuming.
Dominic (9yo) and Mario (5yo) have begun wrestling. At the first practice coach asked if Sophia (7yo) could stay. This is the first year he has not had a girl. She has been practicing ever since and loving it. Mark has not decided whether to let her go to the meets but she is beating all the boys in her weight class!
Gina and Maria are playing indoor soccer once a week and are taking swimming lessons. They are a joy to teach and doing well in their studies. I couldn't accomplish all that I do around the house without their help.
Monday we had 20 senior football players over for dinner. They devoured 7 lbs of pasta, 7 loaves of bread, a huge roaster pan of sauce, 2 cakes, and 20 cream puffs! Everyone seemed to have a good time. Thanks to Mom and Mrs. Jordan for helping pull it off. The house cleaning we did for that night put us in good shape for Thanksgiving. We will be hosting Mark's family today. It is always good to get together since everyone is so busy. It makes me think of my grandmother who worked so hard so we could enjoy a delicious meal and fellowship together. I know her spirit will be present as we invite each guest into our home. She would be happy that we are carrying on some of her traditions.
Early this morning we will be attending a big fundraiser for Mark's agency, called the Brunch Bunch. Thanks Debby Missimi for all your efforts in making it so successful!
Frankie occupies my thoughts continuously around the holidays. She enjoyed the company, the excitement, and the abundant love that was given her by family and friends. I try to replace the pain of her loss with the happy memories and focus on how amply we are blessed.
The artist of this song, written many years after the death of his young wife, shows his focus on his blessings.
BEYOND MEASURE by Jeremy Camp
The fog has finally cleared to see,
The beautiful life you’ve given me
To feel the breeze of my newborn’s gentle breath
With one to walk hand in hand,
To share this life that you have planned
It’s like a storybook with dreams
That are meant to see every next step is an extraordinary scene
[CHORUS]
I know that I’ve been,
Given more than beyond measure,
I come alive when,
I see beyond my fears
I know that I’ve been given more than earthly treasure,
I come alive when
I’ve broken down and given you control
I’ve faced a great tragedy,
But have seen the works of what you bring
A display of faith that you give,
I don’t know if I will ever understand
The depth of what it is you’ve done inside,
But I know that I will won’t find any worth apart from you
Everything that I have
Has been given so unselfishly
And shown that even when I don’t deserve
You always show the fullness of your love
Monday, November 17, 2008 3:01 AM CST
It has been another whirlwind week for us. Hoban beat Tallmadge to make it to the final four in the state playoffs. Who would have thought? I believe that I am the only mother with 2 boys starting. It is quite an adventure. I hope they stay safe as they play 2 hours away this Friday night.
Please pray for me. I have been asked to speak at the remembrance service this year at Akron Childrens Hospital on Dec 9th. I am currently writing my talk. I want to be a source of hope for other grieving parents.
Happy Birthday Mom! Thanks for being a continual source of encouragement to me; As are all the folks who write on this website. You will never know how much I am encouraged by your messages. It is so nice that you have stayed on with us through this whole ordeal. We are truly blessed.
Peace,
Jean
Tuesday, November 4, 2008 4:24 AM CST
Life just will not slow down. Another crazy week at the Frisone house. Last Tuesday I returned to the ER with Anthony. He was having severe chest pain which made it difficult to breathe. The pain was most intense in the exact area of his heart. Tests were run. We were called to come in the next day for an echocardiogram. Thankfully, all looks normal with his heart. After 2 days of bedrest and motrin around the clock, he felt better. He returned to school Thursday. Parent-teacher conferences were that afternoon. He had a great first quarter in school. He was able to attend the playoff game Friday night, although he did not play as much. Hoban beat Warren and are advancing in the playoffs. Anthony is feeling better. The docs are calling it costochondritis - an irritation and swelling of the joints that connect the ribs to the breastbone.
Sunday, the girls and I attended a memorial service for children that have passed away who were cared for at the Cleveland Clinic. I was able to see Frankie's cardiologist, Dr. Arruda and other staff that cared for her. Parents shared displays of photos of their child after a meaningful ceremony. Going through all those photos reminded me of how fiesty she was and how good she looked despite her many trials. We wore purple in her honor, remembering the purple tulip story. I can tell that I am growing stronger. I am in a different place than I was last year. No one knows how to grieve well. Initially, one focuses on surviving a day in excruciating pain. The vice on the heart eventually eases up ever so slightly. The gaping hole in your chest starts to heal and you find your breath again. The lead apron that slows every movement gets a little lighter with time. The agonizing memories of suffering are replaced with those of happier times. After some time you can say her name without a flood of tears. The searing anger turns to sadness. I am not sure the yearning to be together ever ends but it no longer consumes every waking thought. One moves from the accomplishment of just rising from the bed in the morning to managing a few tasks. Over time one is able to fufill more duties, when the grief does not rob all one's energy. After a long while, one dares to see a spark of joy in his life. Laughter feels less strange. One can eventually venture out and begin to carry on "normal" conversations. Like a baby learning to walk, we learn to live in this altered world without our child.
Wednesday, October 8, 2008 11:54 PM CDT
Monday, Anthony and I had the privilege of going to Cincinnati to visit Xavier, a college in which he is interested. The sweetest part was that his classmate was flying down and invited us to go! We left in the morning and returned before dinner. There is a great deal he likes about this particular school but we are going to check out some other options before he starts applying.
It is ironic to be "college shopping" then come home and finish coloring with the kindergartener and everything in-between. There are others with a bigger spread than I have and many moms who understand the challenges of all the different ages. The pace never seems to slow.
You know you're a big family when...
...people count the number of your children out loud when you're in public
...people ask, "Are they all yours?"
...you start counting your children when you're out in public
...you have at least three bunk beds set up in your home
...almost everyone you know has less children than you do
...people say, "Wow! How do you manage?"
...people ask you, out of the blue, if you are Mormon or Catholic.
...you buy your pots and pans in the restaurant supply store
...supposed "family size" food portions seem awfully small
...you complain, "Doesn't anyone make large dining tables anymore?"
...you outgrow your mini-van
...you've heard "Don't you know what causes that?" more times than you'd care to remember
...you've forgotten what it's like to be alone anywhere else but in the bathroom
...your children never run out of playmates among their siblings
...everything you buy is in bulk
...people ask, "Don't you get overwhelmed?"
...you and your husband can no longer hold each child's hand while crossing the street
...it takes a wonderfully long time to hug and kiss everybody
...one of your children looks wistfully at the newborn and asks you, "Can't you have another baby really soon? I hardly get to hold this one because everybody else is taking turns."
...you realize that few houses are designed with your family in mind
...people ask you if you've ever accidentally left any of your children behind
...life around your family never seems boring or dull
...your tent is the largest one in any campground
...you feel sorry for people with only two children
...you sometimes wonder what on earth mothers with only two children do with all their spare time
...whenever you set your dining table, it looks like it used to look when you were expecting lots of company
...you read a cookbook and joke, "They call these meals? Sounds like a little snack to me."
...your gratitude at the abundance of God's blessing moves you to tears unexpectedly
...you start thinking of yourself as "rich in children"
...you secretly think that life in your family might possibly be a much more joyous adventure than life in smaller families
...you are vastly amused at much modern parenting advice, realizing that it is unnecessary, impossible, impractical, or simply silly to try to apply it in a large family setting
...it seems as if you pack more stuff going on a short trip than some people pack when moving their entire household
...you and your husband laugh, "And to think that when we got married, we wanted only four children!"
"Where no oxen are, the manger is clean, but much increase comes by the strength of the ox." Proverbs 14:4
Friday, September 26, 2008 5:13 PM CDT
Anthony has recovered and jumped back into his schedule. Thanks for your prayers. He and Guiseppe are starting in the game tonight (Hoban vs. Holy Name) so I took a few minutes to write before running over to watch them play. The fall weather is perfect for a football game. The home school group is doing their fall hikes in the metroparks on Fridays which are a real treat, too. Life is ridiculously busy but we are combining exercise and stress management to make life tolerable. You know you are a busy mom when you're matching socks at the soccer game. I paired 4 buckets of socks while watching Maria play last night. I am gone every night and it is hard to get it all done.
I am trying to enjoy each stage that the children are in. We only have a few months before Anthony will be leaving for college. As tough as the teen years are, at least he still comes home at night. Although Mario says kindergarten is boring, he seems to be adjusting alright.
Love is not a feeling; Happiness is a feeling.
Love is not an emotion; anger is an emotion.
Love is not a state; confusion is a state.
Love can include feeling and emotion and leave you in a state..but love is, at heart, a decision.
Love sees the imperfections, sins, and failings and says, "I still choose to love you" ~ Mark Hart - Blessed are the Bored in Spirit
Tuesday, September 16, 2008 12:32 AM CDT
Last night Anthony was admitted to Akron Childrens Hospital. He started with sore throat on Friday. By Monday morning he could not talk or eat. We saw his doctor. Strep negative, preliminary mono was negative. She started Anthony on antibiotics waiting for the long term strep to come back. He had Tylenol with Codeine for pain. He continued to get worse throughout the day until he felt like his throat was closing and could not even swallow his own saliva. We went to the emergency room which was an absolute zoo! We were finally seen after waiting a few hours. An IV was started he received antibiotics, steroids, and pain meds. By 2 am we were admitted to 6200. We got a few hours sleep. By morning he was feeling better. He was able to say a few words. I was gone from 0630 to 0830. By the time I returned he was talking sentences and able to swallow. The ear, nose, and throat doctor said we came just in time. The CT showed a pocket of infection behind his R tonsil. We caught the infection before it was encapsulated, therefore, avoiding the need surgery and a longer recovery. The current plan is to stay another night continuing the antibiotics, pain meds, and steroids IV. He continues to get better with time.
Unfortunately it is his 18th birthday today.
Thanks again for your prayers and support.
Tuesday, September 9, 2008 10:36 PM CDT
It has been one of those weeks where I seem to see Frankie's face frequently. Just a reminder of how long healing takes and how much longer we have to go. It is like being caught in a web; trying to move forward in some capacity but trapped in not wanting to leave the past behind. It is a dichotomy to try to heal a wound so large while trying to function in the everyday. Sometimes my mind cannot still wrap around the simple fact that she was here and now she is not. I once read it is like walking with a "heart-limp." I don't even know what healthy grieving is supposed to look like.
I often get frustrated with myself, like I should not be feeling down at this point. Just like with everything else if I am not taking time for prayer, exercise, reading, breathing, etc. I am going to get burned out. I heard recently if the devil cannot derail our faith, he will keep us distracted with busyness. If I do not have a regular source reminding me of an eternal perspective, it is easy to get derailed. Sr. Jordan used to do that for me. I still am trying to reconcile a loving God and all this suffering. Sometimes it is a struggle to keep believing that everything is going to be OK. This song gave me some comfort.
"By Your Side" by 10th Avenue North
Why are you striving these days?
Why are you trying to earn grace?
Why are you crying, let me lift up your face.
Just don't turn away
Why are you looking for love?
Are you still searching as if I am not enough
Where will you go child? Tell me where will you run?
To where will you run?
CHORUS
I will be by your side whenever you are falling
Dead of night whenever you are calling
Please don't fight these hands that are holding you
My hands are holding you...
'Cause I love you
I want you to know
that I love you
I'll never let you go
Monday, September 1, 2008 9:24 PM CDT
Thank you for your kind messages. It has been hard to be without internet for weeks. Cable man coming out tomorrow.
I survived her birthday. It is so difficult to think about what could have been. I desperately miss her mischievous smile and her chubby hand in mine. Her sense of humor kept us all laughing. There is a gaping hole in our family. I don't take as many pictures anymore. They will forever be incomplete. There are wounds that will never go away. I only hope to have continued healing for each family member. It is still rough but not as raw as last year. Mark and I celebrated 20 years of wedded bliss! Lots of memories. Lots of ups and downs. We spent our anniversary at the football field (where else?) watching Dominic play in the pouring rain. He had Field's only 2 touchdowns and multiple game-saving tackles. So the day ended on a good note. The pace never seems to slow. With 5 kids in sports there is something nearly everyday. We are trying to get into a groove with the new school schedules. Reluctantly, I enrolled Mario in kindergarten at St Joseph School where Sophia attends second grade. We have 2 at Hoban High School and I am homeschooling Gina, Maria, and Dom (8th, 6th, and 4th grade respectively). Angelo graduated from high school in May and is looking for work. No time to be idle. It is a constant juggling act. Many memories still pull at my heart but there is no time to dwell or to meditate. Hoping that time will somehow realign our world that has been turned upside down. I pray that the anger, bitterness,heartache and resentment will fade being replaced with the memories when our family was happy and whole.
Your prayers and support are life-giving. Thank you for coming alongside and infusing us with encouragement. We are blessed.
Friday, August 15, 2008 1:34 AM CDT
"Some things seemed so usual on that remembered day.
The sun arose, the birds awoke, and kids came out to play.
For most of us, the hours passed much like the days before.
We lost ourselves in busyness and rushed from task to chore.
It was not for you, my friend, for April 10, 2007 will always be the day God said to Francesca, 'Come home and dwell with me.'
Yes, on this day, you lost someone you loved with all your heart.
And with this truth, the world you knew abruptly fell apart.
How fleeting was the moment that stilled this life so dear.
Yet, how profound the impact on you left mourning here.
Time offered no rehearsal for your feelings of goodbye.
Whether sudden or expected, loss begs the question,'why?'
Some say God sends His children here with special tasks to do, then calls them to Him, one by one, when all their work is through.
Others feel, 'Thy will was done,' in life's eternal plan.
And when we enter heaven's gates, we'll finally understand.
Still, you might find little solace in the why behind your sorrow.
The one you love is gone from here, and this changes not tomorrow.
If loss comes, too, with tragedy, it's harder even still
to believe such pain was preference, much less anybody's will.
With this, your heart does lead you along a path of grief, where you gather precious memories, and through tears you find relief.
The pace at which you travel is yours to set and share with those on whom you'll count to listen, talk, and care.
You may wish yourself to hurry and believe your mourning through, but pain from loss prefers to stay and make a home in you.
And there it will become a friend who gently helps you cross into a life that finds new meaning from your encounter with such loss.
This healing happens slowly over weeks and months and years. And even then, there will be days when memories call fresh tears.
A song, a scent, or photograph keeps your heart in touch with all that you so treasured in the one you miss so much.
Yet, a time will come eventually when the pain of where you've been makes room within your heart for hope in life again.
Then may the joys of every day create memories for your heart like precious gifts sent full of love from the one who did depart.
May you sense your loved one's spirit on a lazy sunshine day and know the one you miss delights to watch you laugh and play.
May you recall that radiant smile in the sparkle of a star and know it's shining extra bright to find you from afar.
May you hear your beloved's laughter in the misty falling rain and know that tears from heaven fall from eyes that share your pain.
May you feel your loved one's touch when mild breezes blow to caress your cheek and whisper soft, 'I still walk with you, you know.'"
THE GIFT OF A MEMORY by Marianne Richmond
Tuesday, August 5, 2008 1:17 AM CDT
As we continue to adjust to life without Francesca, we are presented with more challenges. Life is full of ups and downs. It is hard to be fluent and flexible. Whether it is just circumstances of having a big family or just getting older or the marks of deep grief, I am trying to meet the challenges of each day. We have been blessed by the generosity and caring of so many. Hundreds of people helped shoulder our trials. I am so grateful.
I finally have mustered enough energy to attack the clutter in our home. I did nothing last summer but exist. I have a lot of catching up to do. With each bag of clothing or toys I collect, it feels like we are losing weight. The sense of order clears the mind and brings a sense of hope and accomplishment. It is a true race against the clock to see if I can finish before school starts. I am keeping all kind of crazy hours to get it done. Thanks to all my years of working nights, I can get by with little sleep and work efficiently without interruption in the wee hours.
Thanks for your continued prayers and concern. The whole family is still trying to stabilize from the loss of one so loved.
For everything there is a season,
And a time for every matter under heaven:
A time to be born, and a time to die;
A time to plant, and a time to pluck up what is
planted;
A time to kill, and a time to heal;
A time to break down, and a time to build up;
A time to weep, and a time to laugh;
A time to mourn, and a time to dance;
A time to throw away stones, and a time to gather
stones together;
A time to embrace, And a time to refrain from
embracing;
A time to seek, and a time to lose;
A time to keep, and a time to throw away;
A time to tear, and a time to sew;
A time to keep silence, and a time to speak;
A time to love, and a time to hate,
A time for war, and a time for peace.
Ecclesiastes 3:1-8
Monday, July 21, 2008 6:01 AM CDT
I have not been able to write for so long. We have had internet troubles, there was a problem with the cable that has now been repaired. Thanks to Mark's brother, Brian, we were able to go to Tennessee on a houseboat. We spent the week with Mark's family. Everyone pitched in to prepare the meals and make things happen. It was a challange to keep the kids safe and fed since Mark did not go. The kids seemed to have a good time.
The family is still in great need of healing. Some of the kids' grief has intensified instead of waned. They are bitter about what happened to Francesca and our family. I pray somehow that God's healing power can break through.
Friday, July 4, 2008 7:33 PM CDT
A PRAYER FOR HELP IN DIFFICULT TIMES
Lord I give thanks to You in all things because I know that You reign in the midst of them. I know that when I pass through waging waters, You will be with me and the river will not flow over me. When I walk through the fire, I will not be burned. Nor will the flame touch me (Isaiah 43:1-2). That's because You are a good God and have sent Your Holy Spirit to be my Comforter and Helper in the midst of difficult times.
Lord, I wait for You today. I put my hope in Your Word and ask that You would fill me afresh with Your Holy Spirit and wash away all anxiety or doubt. Shine Your light into any dark corner of my soul that needs to be exposed. I don't want my impatience or lack of trust to stand in the way of all You desire to do in my life at this time. I realize that no matter how difficult life gets, as long as I cling to You I am moving forward on the path you have for me. Help me to wait on You and not grow impatient with my circumstances simply because my timetable does not coincide with Yours. Help me to understand Your ways and not give in to discouragement. Strengthen my faith to depend on Your perfect timing for my life. Help me to rest in You and be content with where I am right now.At the same time, I ask you to heal, restore, redeem, transform, and bring new life to my situation. Teach me what I need to learn and help me get beyond this time successfully so I can rise above the storm to Your place of perfect peace. Amen
Tuesday, July 1, 2008 3:25 PM CDT
"Into the bleakest winters of our souls, Lord, you are tiptoeing on tiny infant feet to find us. May we drop whatever we're doing and accept this gesture of a baby so small it may get overlooked in our frantic search for something massive and overwhelming. Remind us that it is not you who demands lavish celebrations and strobe-lit displays of faith. Rather, you ask only that we have the faith of a mustard seed and willingness to let a small hand take ours. We are ready."
Friday, June 27, 2008 4:10 AM CDT
I am reading a book that brings some comfort because the authors have all experienced the death of a child. It is unfortunate what we have in common but they describe the experience very articulately.
Beyond Tears by Ellen Mitchell
"There are certain truisms in life. One of them is that it goes against the natural order of things to bury one's child. However, as bereaved mothers we can no longer believe in natural order. Our comfortable, secure lives, our innocence, all were shattered with the deaths of our children. Now our reality is upside down, inside out and far removed from what we thought it would be.
Each day is a learning experience in a course we never signed up for, in a life we never anticipated. Along the way, we have each acquired some degree of healing, and we have reached a point in the road where we can now share what we have endured. We hope our stories will shed some light for others who find themselves walking the same dark path.
This, then, is a book that no one ever envisions needing. It talks of how we wake each day and pass the hours when there seems scant reason to do so. It tells of how we go on when it seems pointless, and it explores ways in which we manage to exist when our lives seem hollow."
Sunday, June 22, 2008 8:17 AM CDT
We have had so much trouble with our Internet, I have had difficulty getting on. Thank you for your notes of encouragement. It means more than you know.
Now that school is over, I have been taking on some huge projects around the house. I did not accomplish much of anything last summer, so there is much more work to be done. I have interspersed some fun things for the kids but it takes time away from completing these tasks. If I am successful in getting these things done, we will be in much better shape as we go into the next school year.
I have been reading more about Steven Curtis Chapman since his daughter died in May. I was fortunate enough to take the girls to see him in concert last October. I appreciate his music because his lyrics are so thoughtful. He had 3 children then adopted 3 more girls from China. The youngest was accidentally hit in their driveway just after her 5th birthday. There are hundreds of pictures of their family on his website. With all he has going on, he still found time to be present to his children. He wrote the song "Cinderella" even before she passed away. If you have never heard it. Go to his website (stevencurtischapman.com) and watch the video.It is very moving.
On one of his video blogs, he talked about how it had been a difficult day. He opened to a resource that had daily readings from the bible and it gave him encouragement. The one he was referring to follows:
O my God, my soul is cast down within me.
THOU wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the LORD for ever: for in the LORD JEHOVAH is everlasting strength.
Cast thy burden upon the LORD, and he shall sustain thee.--He hath not despised nor abhorred the affliction of the afflicted; neither hath he hid his face from him; but when he cried unto him, he heard.--Is any among you afflicted? let him pray.
Let not your heart be troubled, neither let it be afraid.--Take no thought for your life, what ye shall eat, or what ye shall drink; nor yet for your body, what ye shall put on. Behold the fowls of the air: for they sow not, neither do they reap, nor gather into barns; yet your heavenly Father feedeth them. Are ye not much better than they?--Be not faithless, but believing.--Lo, I am with you always.
PSA. 42. 6. Is. 26. 3, 4. Ps. 55. 22.--
Ps. 22. 24.--Ja. 5. 13. John 14. 27.--
Mat. 6. 25, 26.--John 20. 27.--Mat. 28. 20.
Sunday, June 8, 2008 0:53 AM CDT
I have had an increasingly difficult time putting my feelings to words. Partly because there is so much range of emotion. Life without Frankie is still so hard. The gut-wrenching, raw pain of the initial days and weeks has eased. Life is full of events that are bittersweet. Many, many things remind me of her, sad that she cannot physically share in what the kids are doing; imagining what she would look like now. The ache of empty arms comes and goes as I am caught in the fast current and pace of this life. It is moving on, like it or not. Yet forward progress is good. The kids should keep growing. This contributes to the conflict, having one foot in the past while trying to keep up with what is now. All I have are memories. For someone who has created such a sleep debt and have faltering recall, this is not comforting. I have the promise of seeing her in the future but it seems an eternity away, and resurrects the pain of her not being here now.
Although I am more functional than a year ago, I am a maimed and crippled version of my former self. I lack the energy and optimism that valiantly carried me through trials before. The lead coat of emotion I wore a year ago has lessened to just weights in my shoes. I cling to a God who has given and taken away; so many unanswered questions. Many a mother would gladly give their life for their child, but to live after their child has gone is a greater sacrifice. I feel less resilient when new trials come which understandably is part of life. The trials of today are minuscule compared to the hardship of what we experienced when she was so ill. So the battle rages on, mentally, physically, emotionally. The soul does not heal quickly. My impatience mounts because I cannot accomplish what I used to but it is the reality of today.
LOVE, LAUGHTER AND GRATITUDE
"We are forever indebted to those who have stood by us when we needed not only someone to lean upon, but someone to pick up up when we so often stumbled and fell. Were it not for extraordinary people, we might never again have experienced laughter. They are, of course, first and foremost family and friends. To a great extent the extraordinary people who have restored us to love and laughter are similarly our bereaved friends. They understood precisely what it was that we were feeling and continue to feel this day. Sometimes the people to whom we owe a debt of gratitude are people we barely knew, or at least did not know well; people who simply stepped forward and knew instinctively how to less our burden...And so with time and a great deal of help, we have learned to laugh again... surely not with the degree of abandon, spontaneity, and joyousness we once knew, but laugh we do on occasion...Outward expressions of enjoyment by the bereaved can produce some complex emotions both in ourselves and those who see us laughing out loud, or so it seems, at least to us. At first the newly bereaved is offended at hearing other bereaved people laugh. But laughing is a good thing. It's really like crying. We can laugh with the same pain in our laughter as we used to let out in our crying.
Love never left our lives throughout this terrible ordeal. It was there all the while, hidden beneath our tears and behind our broken hearts, quietly waiting to show itself once we grew strong enough to allow it to emerge once again...There is often an inner voice tearing at us and telling us we oughtn't to enjoy a beautiful landscape or a new adventure because our child cannot do the same. Each of us experiences that odd guilt. We do not know how to rid ourselves of it, but we do know its presence becomes less overwhelming with time. It doesn't go away, but it does wane somewhat. Perhaps that is only because we learn to accept it and live with it. What it amounts to is whatever occurs in our lives, while it may bring us some degree of happiness, is always muted, it has lost its color and its ability to make us completely forget our loss. We do not possess the same passion for living that we once had."
from Beyond Tears by Ellen Mitchell
Friday, May 30, 2008 9:48 AM CDT
I have been in a rut for sometime. No major catastrophes. Just an accumulation of things that get me down. I am more functional than a year ago. I just miss Frankie so much. Every chubby-cheeked brown eyed girl pulls at my heart. We found a book we had made for her at her last Christmas, with her picture in the center. My arms ache to hold her again. There is nothing that really satisfies that yearning. So you just move on, in a hollow, joyless way. You want to feel better. You want to be clear thinking, present, appropriately celebratory for all the events that keep happening. But you feel like an impostor in your own body, longing for old times that are impossible to live again. So you try to make new memories but everything is incomplete and empty without her. I feel guilty for being down when we are abundantly blessed.
"When we lose a child so young, we live on with a myriad of memories. Sometimes these memories evoke intense joy- sometimes. intense pain. But, we can think of countless experiences we will never have with our child, and the pain of this realization is excruciating. Our child, for whom we wanted everything, will live only in our memories and in our love."
Facing the Ultimate Loss by Robert Marx
Sunday, May 18, 2008 4:05 PM CDT
I had knee surgery last Monday to repair multiple tears in the pad that cushions my leg bones. All went well as can be expected. I was not very good at getting everything done before I was on crutches, I certainly not winning any awards for House Beautiful this week but everyone is pitching in. We are managing with help of friends, too. One of the greatest gifts of this week is having more time to read to the children. One of the books that was assigned in our curriculum was the "Endless Steppe". A story of a Jewish girl who was exiled to Siberia from her home in Poland during the WWII. Nothing like a little perspective to quell a pity party. Reading great literature together has been the highlight to our homeschooling experience. It adds depth to our relationship, broadens perspective, and is a great time for bonding.
There are plenty of people for which to offer up my discomfort and the inconvenience caused by my lack of mobility.
Please pray for fellow heart friend, Gabriel Johnston, who will be traveling back to Boston Childrens this week. Learn more at caringbridge.org/ny/gabrieldavid
"If we could see, if we could know, we often say,
but God in love a veil does throw across our way.
We cannot see what lies before, and so we cling to Him the more.
He leads us till this life is o'er, trust and obey."
Sunday, May 11, 2008 10:28 PM CDT
HAPPY MOTHER'S DAY to all
I got this from Sawyer Tolbert's website. He was Frankie's roommate at the University of Michigan ICU. He is a darling little boy who has had a rough time of it. A little spit fire with terrific parents.
This is for the mother's...
(Each mother that I've known)
Whose greatest hope was someday...
To have children of her own.
For the ones who proudly rocked their dolls...
And kissed them each goodnight...
This is for the mother's...
Who were told..."Something's not right".
This is for the mother...
Who... when faced with such a trial..
Sits beside her child's bed...
Just praying all the while...
For mom's who learned of patience...
In a way that no one should...
For the mother's who know sometimes...
Life can be misunderstood.
When dreams of all the "oohs" and "ahhs"...
As doting friends arrive....
Become instead...a battle....
To help their child thrive.
This is for the mother's...
Who refuse to face defeat...
Who become their child's advocate...
Who teach their child to eat...
Appointments fill their busy lives...
It's time to go again...
With feeding pumps, and specialists...
A tank of oxygen.
As people stop...to take a look...
Just wondering...what's wrong?
I've seen that look, a hundred times...
"You must be very strong".
The oohs and ahhs...don't matter...
Now life seems much more clear...
I'm lucky I'm his mother....
I'm blessed that he's still here.
This is for the mother....
Whose shaking hands release...
The child that she loves so much...
(And then she prays for peace)
"We will take good care of him"...
The nurse says carefully....
This mother's thoughts are simple...
"Lord bring him back to me...
His life no longer in her hands...
She wonders what's in store...
This is for the mother....
Who has been there before.
This is for the mother....
Whose worst fear comes to light....
"Were still not certain what went wrong...."
"We'll watch her through the night."
For mother's who sit powerless...
Praying...please let her survive...
For mother's who must go on somehow...
When their miracle doesn't arrive.
As some wake up on Mother's day...
To kisses, cards and laughs...
Other's have just memories...
and well worn photographs.
This is for the mother....
Who knows that it's a treasure....
To have a child...love a child...
Their is no greater pleasure.
For runny eggs and blackened toast....
Arranged upon a tray....
With a bunch of wilted dandelions...
"Mom does it taste okay"?
For every busy restauraunt...
And every crowded mall....
The words...."I love you mama" are...
The greatest gift of all.
written by Braeden Husted's mommy
Tuesday, May 6, 2008 11:10 PM CDT
I have been having a rough week. Tripped up by very minor irritations. My brain refuses to cooperate. I have slipped back into a fog that makes it hard to function well. I am plagued by frequent headaches. I am on a "losing streak". I have lost some very significant things in the last week. As I began to slip into pity party mode, I got a dose of reality when I went to work tonight. There was my co-worker, Lucy, who is battling cancer. Not a complaint, just cheerfully doing her job. I don't know how she does it but she has maintained a positive attitude through it all. That's all I needed to get things into perspective.
I came across a prayer as the kids and I were learning about Our Lady of Guadalupe. Her words to Juan Diego,
"Hear, and let it penetrate into your heart - let nothing discourage you, nothing depress you. Let nothing alter your heart or your countenance. Also, do not fear any illness or vexation, anxiety or pain. Am I not here who am your mother? Are you not under my shadow and protection?
Am I not your fountain of Life? Are you not in the folds of my mantle, in the crossing of my arms? Is there anything else you need?"
In thanksgiving for God's loving kindness. Looking forward to better days ahead.
Friday, May 2, 2008 8:51 AM CDT
I came across this poem while preparing a talk. It is one of my favorites.
The Race
by D. H. Groberg
Whenever I start to hang my head in front of failure’s face,
my downward fall is broken by the memory of a race.
A children’s race, young boys, young men; how I remember well,
excitement sure, but also fear, it wasn’t hard to tell.
They all lined up so full of hope, each thought to win that race
or tie for first, or if not that, at least take second place.
Their parents watched from off the side, each cheering for their son,
and each boy hoped to show his folks that he would be the one.
The whistle blew and off they flew, like chariots of fire,
to win, to be the hero there, was each young boy’s desire.
One boy in particular, whose dad was in the crowd,
was running in the lead and thought “My dad will be so proud.”
But as he speeded down the field and crossed a shallow dip,
the little boy who thought he’d win, lost his step and slipped.
Trying hard to catch himself, his arms flew everyplace,
and midst the laughter of the crowd he fell flat on his face.
As he fell, his hope fell too; he couldn’t win it now.
Humiliated, he just wished to disappear somehow.
But as he fell his dad stood up and showed his anxious face,
which to the boy so clearly said, “Get up and win that race!”
He quickly rose, no damage done, behind a bit that’s all,
and ran with all his mind and might to make up for his fall.
So anxious to restore himself, to catch up and to win,
his mind went faster than his legs. He slipped and fell again.
He wished that he had quit before with only one disgrace.
“I’m hopeless as a runner now, I shouldn’t try to race.”
But through the laughing crowd he searched and found his father’s face
with a steady look that said again, “Get up and win that race!”
So he jumped up to try again, ten yards behind the last.
“If I’m to gain those yards,” he thought, “I’ve got to run real fast!”
Exceeding everything he had, he regained eight, then ten...
but trying hard to catch the lead, he slipped and fell again.
Defeat! He lay there silently. A tear dropped from his eye.
“There’s no sense running anymore! Three strikes I’m out! Why try?
I’ve lost, so what’s the use?” he thought. “I’ll live with my disgrace.”
But then he thought about his dad, who soon he’d have to face.
Get up!” the echo urged him on, “Get up and take your place!
You were not meant for failure here! Get up and win that race!”
So, up he rose to run once more, refusing to forfeit,
and he resolved that win or lose, at least he wouldn’t quit.
So far behind the others now, the most he’d ever been,
still he gave it all he had and ran like he could win.
Three times he’d fallen stumbling, three times he rose again.
Too far behind to hope to win, he still ran to the end.
They cheered another boy who crossed the line and won first place,
head high and proud and happy -- no falling, no disgrace.
But, when the fallen youngster crossed the line, in last place,
the crowd gave him a greater cheer for finishing the race.
And even though he came in last with head bowed low, unproud,
you would have thought he’d won the race, to listen to the crowd.
And to his dad he sadly said, “I didn’t do so well.”
“To me, you won,” his father said. “You rose each time you fell.”
And now when things seem dark and bleak and difficult to face,
the memory of that little boy helps me in my own race.
For all of life is like that race, with ups and downs and all.
And all you have to do to win is rise each time you fall.
And when depression and despair shout loudly in my face,
another voice within me says, “Get up and win that race!”
Wednesday, April 30, 2008 5:47 AM CDT
Still struggling to put some order into our lives with a brain that does not work right and an aging body that refuses to cooperate. I realize our house can be like Grand Central Station with all the activities we are involved in but too many important things are being missed. I was not able to reach out to many people like I intended on Francesa's anniversary. I am grateful to so many for carrying us through her illness and the long difficult months after her death. It is the relationships that matter, not material things, status, or the activities in which we partake.
Speaking of relationships: two of my most favorite people have birthdays this week. My uncle Phil was April 27th and my best friend, Germaine Wilson, is today. Mamie is the most loyal friend one could have. She was incredibly helpful throughout Francesca's hospitalizations. She helped keep me organized and on track ( a very difficult task!) Please, say a prayer for them both. I am very lucky to have them.
Monday, April 28, 2008 0:04 AM CDT
Openness is a risk,
growth is its reward,
and God's grace makes it all possible.
Patsy Clairmont
Friday, April 25, 2008 10:24 PM CDT
"Blessed is the man who trusts in the Lord, whose
hope is the Lord. He is like a tree planted beside the water that stretches out its roots to the stream: It fears not the heat when it comes, its leaves stay green; in the
year of the drought it shows no distress, but still bears fruit."
Jeremiah 17:7-8
Wednesday, April 23, 2008 5:03 AM CDT
On Sunday, we went to a Methodist church in support of one of Mark's friends who was preaching that day. I was moved to tears throughout the service on many occasions. In the beginning, all were asked if we remember as children volunteering, with hands raised, to be picked for a dodgeball team. "Pick me, pick me!" Do we go with such enthusiasm when God is looking for folks to carry out his will?
There were songs of worship speaking of God's greatness but also of our surrender. Do I surrender all? This message spoke right to my heart. With surrendering comes great sacrifice. I know I have been holding back. There are many difficulties involved with having a big family and being open to life. Although I do not feel called to have another child, after losing something more dear than my own life, I could ask, 'What do you want from me now?' God uses it all for the good; all of Frankie's suffering, all my trials. One cannot fathom how God could use the life of a small child to influence many. How much more could he advance the kingdom with a willing adult?
"Fear is useless; what is needed is trust." Mark 5:36
Monday, April 21, 2008 5:42 AM CDT
"God is not a deceiver that he should offer to support
us, and then, when we lean upon Him, should slip
away from us." St. Augustine
Sometimes God is not readily apparent in our need, so we fear that He is not with us and we place no hope in Him. However, the fact may be that we are not looking for Him hidden in the wrappings of our suffering. Dare we look, we will find Him attentive to our need, patiently providing every grace we need. He desires only that we search and
find that He is there and His grace is sufficient.
Tuesday, April 15, 2008 9:52 PM CDT
Thursday, Mom, Maria, and I went up to Cleveland Clinic to visit the good folks that took care of Francesca. Many came out to see us. We shared Frankie stories. It was a good way to spend her anniversary in the company of people who appreciated what a character she was. Whomever I meet from now on will not have the opportunity of knowing Frankie (this side of heaven). I do not have to explain anything to this group. From open heart surgery, the day she was born, through the multiple admissions and life threatening complications, they were there to witness it all. They know the fiesty perseverance, the precocious sense of humor. Everyone was gracious and warm.
When I went to pick up the other kids from my friend, Kathy's house, our homeschool group had put together a whole basket full of summer-fun goodies for the kids in honor of Frankie's anniversary. Thanks everyone!
When I got home there was a stack of cards commemorating the special day. I was so touched, not only did folks remember but took the time to write, and that they all got there that day! It was nice.
The next day we witnessed a full rainbow in front of our house, from beginning to end, all of the colors. It was beautiful!
Thursday, April 10, 2008 7:17 AM CDT
Save a Place for me by Matthew West
Don't be mad if I cry
It just hurts so bad sometimes
'Cause everyday it's sinking in
And I have to say goodbye all over again
You know I bet it feels good to have the weight of this world off your shoulders now
I'm dreaming of the day when I'm finally there with you
Save a place for me
Save a place for me
I'll be there soon
I'll be there soon
Save a place for me
Save some grace for me
I'll be there soon
I'll be there soon
I have asked the question why
But I guess the answer's for another time
So instead I'll pray with every tear
And be thankful for the time I had you here
And I wanna live my life just like you did
Make the most of my time just like you did
And I wanna make my home up in the sky
Just like you did
Oh, but until I get there
Until I get there
Save a place for me
Save a place for me
I'll be there soon
I'll be there soon
Save a place for me
Save some grace for me
I'll be there soon
I'll be there soon
Tuesday, April 8, 2008 23:21 PM CDT
52 weeks
Whew! We made it! If anyone told me a year ago I would be still standing today, I would not have believed you. Thanks to the hundreds of people who have called, written, emailed, sent gifts, PRAYED, and literally carried us through the last year. It is nice to pause, step back, and contemplate the progress the family has made. We are far from where I want to be but we have not self destructed yet.
Mom planned a special overnight last Friday; a way to commemorate this special time in a pleasant way. She took me to the Inn at Brandywine Falls where we were met by my sister Christie (T for short), my sisters-in-law Debbie and Julie. We had dinner together, talked late into the night, and had a wonderful breakfast together. Mom had many special touches - purple tulips for all! After the girls returned to Columbus, Mom and I went to Our Lady of Sorrows Church. We spent some time praying and reflecting. We stopped at a bookstore before we departed for home. It was great to spend a day with such loving, joy-filled people at a slower pace than usual. We told stories about Frankie. Debbie gave me a beautiful mother's bracelet with all the kid's birthstones and a special angel charm by Frankie's gem. I love it!
Sunday there was a fantastic mass said for Francesca at Our Lady of the Elms.(Sr. Jordan's old home) The nuns were so gracious. Gina read a reading. Uncle Phil celebrated the mass in his usual amazing fashion. Even the kitchen help came out to see how the kids had grown. Many of our family gathered in her name. So many memories of our many visits with Sister Jordan! She would take the little ones for rides in her wheel chair. We would do puzzles, discuss books, or talk for hours! Jordan had this device that would grab things from the floor. Frankie loved it. Frankie's fascination made Jordan laugh. Jordan was enthralled by the childrens' uniqueness. She inspired us all. The Elms was where we celebrated Francesca's baptism with family. Lots of great stories, many memories. It was great to visit with the nuns again. It was another wonderful way to remember Francesca.
Thursday, April 3, 2008 8:38 AM CDT
51 weeks
As the birds congregate on the front lawn I picture Frankie standing before the window enthusiastically signing the word for bird. She would be so excited to see them gather and was entranced as they dug for worms or fluttered about. So many reminders of her. Every dark eyed toddler makes me do a double take. As we cleaned up from a recent flood in the basement I washed her stuffed Barney. As I squeeze the blanket that last held her body, I grasp for anything, ANYTHING that makes me feel close to her as the pain of her loss intensifies again. Every effort I make to commemorate her life seems so feeble but next week Maria and I are going to Cleveland Clinic on the anniversary of her death, to be with the people who cared for Frankie so passionately. No matter how I fight, I cannot make time slow down or speed up. Whether I busy myself to stop the memories from coming or let them come like an avalanche, it does not bring her back. There is no escaping the loss. There is only learning how to deal with it. It is like losing your vision or becoming paralyzed, it changes you to the core. I feel off balance and have lost motivation to do so many things. Everything in life becomes difficult, even the things that used to be easy or fun. If not for the prayers and support of so many amazing people we surely would not have made it thus far.
"He died for us to give us life, and to give us hope, He rose."
Wednesday, March 26, 2008 11:12 AM CDT
50 weeks
Life has gotten increasingly busy again and my ability to deal with it is waning. The holiday, college visits and plans, illness, kids' activities, and most certainly Frankie's approaching anniversary has me struggling again. Reflecting on this time last year, we had 5 precious days home before she returned to the hospital Easter weekend. Those days were hardly peaceful but were a welcomed change from the hospital environment. Her oxygen demand increased greatly over the course of those days (from 1/4 liters to 2 1/2 liters). She had no CXR when we were admitted that weekend. I wonder now if she had already thrown the clot that killed her. Would it have been diagnosed with a CXR? I have played the "What if" game over and over for a year. Nevertheless, we were discharged Sunday afternoon. Mark's family gathered at our home for Easter dinner. Little did we know it would be the last time most of them would see her alive. She died two days later. We knew she was in bad shape but the doctors never let on her death was imminent. I do not think they knew either.
At Francesca's funeral, Uncle Phil spoke of the Good Friday and Easter Sunday experiences we had with her. It is so hard to describe the joy she brought to our lives even though life was so hard and she suffered so much. We had a symbiotic relationship. We kept each other going. When I watched what she endured or looked in those big, brown eyes there was little I would not do. Life is so different now. Sometimes it feels like one long Calvary walk with a big heavy cross. If my life was not full of Simons and Veronicas I would not get up after falling. Focusing on the hope promised at the end of the journey is reason to keep going especially when I do not feel like it.
As always I can find inspiration in music.
"Rise Up" by Third Day
Well, I was there when you were torn apart
Now a piece of you is gone
Somehow you wish that you could only find
A little strength to carry on
You've tried so hard to make it on your own
That your heart has come undone
So I am here to prove that I alone
Have the power to overcome
Don't let your heart be troubled
This world will never keep you down
It will never keep you down
So rise up, my friend
No, this will never be the end
So rise up, my friend
And live again
I didn't want you to feel this way
It's not what life was meant to be
And so for you, my friend, I'll take your shame
You can give it all to me
'Cause you've wrestled demons every day
And they've dragged you to your knees
But in your weakness you will learn to find
That I will always be your strength
In life or in death
Through joy or regret
And all of the secret things you have done
No matter what comes, my friend
Nothing can keep you from the love of God
Wednesday, March 19, 2008 7:58 AM CDT
49 weeks
"God whispers to us in our pleasures
Speaks to us in our conscience
but shouts to us in our pain.
It is His megaphone to rouse a deaf world."
C.S. Lewis
Tuesday, March 11, 2008 9:18 PM CDT
48 weeks
We enjoyed being snowed in this weekend. It was nice to not have to be anywhere. The kids had a ball in the deep snow. There was lots of hugs and hot chocolate.
Maria is doing much better. Her activity is more normal; still working on her energy level. Mark is following up with a physician.
Sunday night I fell going down some stairs and really injured the knee I had surgery on two years ago. Nothing like crutches to make one appreciate normal activity. If it does not improve soon, I'll have to go back to the orthopedic doctor.
What It Means - Jeremy Camp
I’ve been here a thousand times before...
Face down on the floor
Wondering how I even reached this place again
[PRECHORUS]
But you’ve shown so endlessly,
How your love pours over me,
No picture can re-create the beauty that I see
[CHORUS]
Show me what it means,
To live my life a sacrifice,
If only I would realize how much
It took to pay the price,
I know I’d always give,
Everything to you
I want this world to always see
Your perfect majesty,
Reflecting from my life this brilliant poetry
[PRECHORUS]
Written all over this place,
The signs of all creation that you breathed,
Words can’t even state how much you mean to me
CHORUS
I want to face my very crime,
Of not always giving all of mine,
But I can feel the hope you bring to me
CHORUS
Tuesday, March 4, 2008 3:59 AM CST
47 weeks
Maria ever so slowly is regaining some energy. She has lost some weight, is still somewhat weak, but staying awake longer each day.
Recently I was able to attend a concert with some of the kids. Mom bought tickets for Gina and Dom's birthday present. Sophie went in Maria's place. My sister, Christie, (we call her T) also drove from Columbus to join us for the event. It was the kind of thing that I would dream about doing from Frankie's hospital room if we ever got out of there. Life gets so complicated and busy it never seems to be a good time to go. I probably would not have done it without the prompting of my family.
The kids had a blast. Anyone who has known Gina since she was little knows she enjoys a good time. She was in Mark's brother's wedding when she was 5 years old. By the end of the night she had made friends with the band, tore her dress dancing, and was the center of attention with her black sunglasses.
Each artist had a different style. The night opened up with budding new artist, Matthew West. Anyone who listens to the local radio station 95.5 The Fish, has heard his music. His first big hit was "More" focusing on God's love for us. During intermission, I took Dominic for a walk in the concourse. Beside the table of CDs stood Matthew West signing autographs. We were not prepared. We had nothing to sign. They were selling the words to "More" in a booklet form so I quickly purchased one. Dom gave it to him to have it signed. What a great first concert experience for Dominic.
Jeremy Camp was next. He has been around for awhile and has many hits. This very young man spoke of the death of his wife and how he grew from that experience. Tobymac ended the night with an amazing array of instruments and dancing. Everyone was on their feet for the rest of the night. The music was great, the message even better.
I purchased the newest CD from each artist. Gina has already choreographed a song with the kids from Tobymac. They have listened over and over to them already.
Matthew West's latest CD "Something to Say" does not have a bad song on it. It is fun and uplifting. He had an operation on his vocal cords and was unable to speak for 2 months! This CD is a result of God bringing him through that difficult experience.
SOMETHING TO SAY
Wake up, 7:32 AM
Can’t believe it’s time to do it over again
Yesterday, it took all that you had
And you’re wonderin’ if you’ll ever get it back
But the whole wide world is waiting for
Waiting for you to step out that door
Come on and let your life be heard today
You got something to say
If you’re livin’, if you’re breathin’
You got something to say
And you know if your heart is beatin’
You got something to say
And no one can say it like you do
God is love and love speaks through
You got it, you got it
You got something to say
Yeah, yeah
Something to say
Yeah, oh
Listen up, I got a question here
Would anybody miss you if you disappeared?
Well your life is the song that you sing
And the whole wide world is listening
Well the answer to the question is
You were created, your life is a gift and
The lights are shining on you today, ‘cause
You got something to say
If you’re livin’, if you’re breathin’
You got something to say
And you know if your heart is beatin’
You got something to say
And no one can say it like you do
God is love and love speaks through
You got it, you got it
You got something to say
Yeah
You got something to say
Come on, come on, yeah
Sing na na na na na na na na
Na na na na na na
Na na na na na, yeah
Listen up, I got a question here
Would anybody miss you if you disappeared?
Well your life is the song that you sing
And the whole wide world is listening
Oh
You got something to say
And no one can say it like you do
God is love and love speaks through
You got it, you got it
You got something to say
Yeah
Something to say
Come on, come on, yeah
And the world is listening now
And the lights are shining down
Shining down on you today, ‘cause
You got something to say
So just say it
Wednesday, February 27, 2008 5:06 AM CST
46 weeks
Snow days are not as fun as they used to be. It can be challenging to have everyone home. I do not usually let the kids I am schooling have off just for the weather because there are plenty of occasions where we need the time. We sure got tons of good packing snow. My dear friend, Jane Martin, came over with her two little boys and built a large igloo in the front yard. The little kids had a blast. It was just what they needed while I took Maria to see the pediatrician and a surgeon.
The doctor thinks if it is not mono, it is a virus just like it. The lab work is not showing anything concerning. Monday she was so weak she could not walk from outpatient lab to radiology. Yesterday, she had more energy. She did not take a morning nap, her joint pain was decreased. She was wiped out after the doctors appointments but hopefully she will do better and better.
She has had a lump growing in her L chest for several weeks. We followed up with the surgeon yesterday. One in every 500 girls has one side develop early and before the other side. He does not think it is anything serious.
Francecsa must be advocating on our behalf, telling our Lord of our many needs. She has a way of getting one's attention. She used to do with me: "Mom...Mom...JEAN!"
"Lord Jesus come to us and to our loved one this day and at this time, and show us that your healing touch has never lost its ancient power. This we ask for thy love's sake. Amen." William Barclay
Monday, February 25, 2008 5:09 AM CST
Mark still has some health concerns that need follow up. Please respect his privacy by not approaching him with questions. He has started medicine for his high blood pressure. He needs to follow up with a doctor this week. Still having chest pain. May need more tests.
Maria has not been herself for a few weeks. Seen in the office last week. Started on antibiotics for ear infection but has severe lethargy, poor appetite, looks bad. She is having blood work and chest xray this morning.
Your prayers and concern are always appreciated.
"Feels Like" by Jeremy Camp
I fail in every single way
But every time I hear you say
"Faithful one, come in to this place
the place of rest where you belong,"
I anticipate the final day when
I fall into your warm embrace,
With everything that I've been through
Nothing else compares
[CHORUS]
And it feels like,
All these tears are coming through,
When I think of everything you do
And it feels like all this joy is bleeding through,
When I think of seeing you
I complicate this very state of resting in what you create,
Nothing goes out your control,
You've given me this very soul,
You cared enough to take my place,
And have given me unending grace,
I know that you know every need that's my security
All your ways are so mysterious never far your ear to hear us
I'll never thirst from this drink that you give when you are near
Friday, February 22, 2008 6:01 AM CST
5pm update Mark is home. Tests results are negative for heart problems. Has high blood pressure. Being treated with medicine.
Mark was admitted last night at Akron General for chest pain. Apparently he has been having it for awhile and yesterday it lasted longer. He happened to tell me about it and I made him get checked out.
DO NOT CALL HIM, ASK HIM ABOUT, EVEN LEAD ON THAT YOU KNOW ANYTHING ABOUT IT!!!! He is already angry with me for making him go. He wants no attention drawn to himself especially if it turns out to be not heart related. The preliminary tests look OK. He will have a stress this am and go from there.
I started off Gina's birthday with a family trip to the dentist and ended with a trip to the ER. Boy, to I know how to make a birthday special! Two years in a row I have managed to not celebrate in a way she deserves. All just in time for my monthly migraines to kick in. By the end of the day I looked worse than Mark.
Thanks for your continued prayers and support.
"Setbacks are given to ordinary men to make them extraordinary."
Tuesday, February 19, 2008 2:33 AM CST
45 weeks
I have been pondering the contents of my latest read: Secrets About Life Every Woman Should Know. Author Barbara De Angelis discusses ways to find more contentment in life. Some of it was a little "new age" for me but I tried to keep an open mind and can usually glean a few new insights. She outlines 10 secrets about approaching change and difficulties in life, the role of fear, overcoming obstacles, criteria by which we judge ourselves, relationships, opportunities for growth, and the importance of love.
The points that impacted me the most were:
Change is inevitable, so stop resisting. Go for maximum growth. Things won't always feel stable.
Change is uncomfortable but does not mean it is not beneficial.
Our interpretation of what happens to us, not the events themselves, that make us happy or sad. What I do makes it positive or negative.
All obstacles are lessons in disguise. Honor them and learn from them. It is not actually the obstacle but what it is uncovering in me that is difficult. Obstacles show where you are stuck, what you are avoiding. Inescapable pain forces you to wake up and deal with it.
Fear is a device of the mind designed to protect the self from pain but often robs us of our passion, steals our aliveness, keeps us from taking risks or realizing our dreams. Make courage bigger than fear.
Some concepts were more difficult than others For example, you must love yourself before you give or receive love. She discusses how we have these secret conditions for loving yourself. I will love myself when... I weigh a certain amount, the kids behave a certain way, I achieve certain status, etc. We often flunk our own tests resulting in a poor self concept. If we stop measuring ourselves by our achievements and more by our personal growth, we can have more success on the inside despite what happens on the outside.
The principle I pondered the most was the 10th: Whatever the question, love is the answer. Initially I thought; how annoyingly trite, how redundant, how vague. What does this really mean anyway? I listened to the tape a second time.
"Whatever my worries, whatever my challenges, I needed to bring love to them. Every situation needs more love not less love. More compassion not less compassion. More acceptance not less acceptance. We are being asked to love ourselves no matter what we are going through; to love others no matter how they challenge us. To love the situations we are faced with no matter how much we feel like resisting them. It is love that will be our secret doorway to contentment. Learning to bring love to every encounter will change the experience of people who cross your path. Learning to see yourself with love will create true inner peace."
The more I thought about it, the more it began to make sense. Although I have great love for my children, love is not as free flowing when it comes to myself. I do have high expectations, maybe even impossible expectations according to Barbara's criteria. I have not exactly experienced inner peace or joy for some time. Maybe a swift kick in the pants or pulling myself up by my bootstraps is not the most effective way to go. But to love myself even when I am not pleased with where I am? When I wish I were doing better? When I resent my current circumstances? That sounds a little wimpy. But railing against the world does not bring my daughter back. Being hard on myself does not restore my joy, it actually robs joy from others around me. So it is time to try something else. Loving others, especially my children, used to come so naturally. Everything takes colossal effort now but is worthwhile, nonetheless.
The author concludes:
Love your past by accepting and blessing it. Love your present by surrendering and not resisting it. You will expect love in the future. Turn within. Recall experiences that bring out your love. Focus on it Bathe in it. It will start to flow. How can you rediscover your natural joy in being alive? Love. View the world as a lover sees it, more brilliantly, seeing the beauty in everything.
Love is always there. It is the healing underneath your pain. It is the seed of hope planted in your despair. It is the longing for union cloaked in your loneliness. It is the soft voice that calls in the darkness beckoning you forward. What is there to do then but to love? Love is waiting to embrace you, to dazzle you, to heal you, to enlighten you, to adore you in so many miraculous and unexpected ways.
Wednesday, February 13, 2008 4:11 AM CST
44 weeks
My brain still struggles to wrap around all that has happened and is evolving. Last year at this time Francesca was stuck in Michigan. Her body not reacting positively to the myriad of interventions attempted to improve her condition. She would have just gotten the long term catheter placed for dialysis and went for a PIC line for IV therapy. It was so difficult to watch her suffer while being separated from the other children. Sophia just had a birthday. I am still living the consequences of not being present for such a long time.
In the book "When Your World is Coming Apart" author Donald Morgan writes: "Surely my world would not be coming apart if I were a person of greater faith, ability, or wisdom...Authentic faith does not protect the believer from times of crisis but our faith gives us the resources to deal with it."
"How can we get it together when our world is falling apart? For one thing we can take cover. That's how many react to trauma in their lives. They close their eyes, close their minds, close their hearts. They react as children might when frightened in bed at night, pulling the covers up over their heads and hoping whatever it is will go away. But that's escape! That's running from life. That's refusing to face reality and deal with it positively.
There are a variety of escapes. Resignation is one- simply giving up. Hedonism is another- losing ourselves through drugs or alcohol. We only get ourselves in deeper. We risk losing all control over life. Denial is yet another form of taking cover. We deny that whatever it is that has happened to us has in fact happened. We can also develop unlovely qualities of harshness and bitterness. We grow hardened, grim, bitter, and self pitying. We become singularly unpleasant to have around... Defeatism is invariable unhealthy and impotent.
But if we refuse to take cover, if we decide this is no way to deal with life, we can discover! We can turn our lives into an era of discovery. We can become explorers of our world and of life and of ourselves! We can experience the meaning of God's words in Hosea: I will make the dale of Trouble a door of Hope.(Hosea 2:15)
We can discover life's true values. Maybe we need this experience to come to our senses, sort out our priorities, learn what life is all about. Let things go along without trials, without tribulations, and we have a way of getting fat with ease and shallow with good times. We devote ourselves and our energies to the wrong things and find satisfaction in the wrong ways. But when our world is coming apart, we can discover life's true values.
We can discover our true strengths. We can discover things about ourselves, good and beautiful things, that maybe we didn't know we possessed...When we are put to the test, we can come to know who we are, who God made us to be, those special and distinctive things that shape this something called self...
We can discover God, who made us, gave us life, who gave us all we love, who is the Source of our being and the Goal of our striving, without whom at the center of our lives and the highest priority of our living, nothing finally comes out right. We can discover God, not as a remote and philosophical belief to which we occasionally and reverently tip our hats, but as a present Reality and a constant Help.
If, rather than take cover, we discover -life's true values, our strengths, ourselves, our God, and His plan for us - then we can recover! We can move on, with our lives finding a new form, taking a new shape, so that the black coal becomes the stunning diamond - a treasure!
Sunday, February 10, 2008 5:29 AM CST
I hope to use this journey through Lent to experience some changes for the better. I heard this beautiful song about how God is with us through the changing seasons.
Every Season by Nicole Nordeman
Every evening sky, an invitation
To trace the patterned stars
And early in July, a celebration
For freedom that is ours
And I notice You
In children’s games
In those who watch them from the shade
Every drop of sun is full of fun and wonder
You are summer
And even when the trees have just surrendered
To the harvest time
Forfeiting their leaves in late September
And sending us inside
Still I notice You when change begins
And I am braced for colder winds
I will offer thanks for what has been and was to come
You are autumn
And everything in time and under heaven
Finally falls asleep
Wrapped in blankets white, all creation
Shivers underneath
And still I notice you
When branches crack
And in my breath on frosted glass
Even now in death, You open doors for life to enter
You are winter
And everything that’s new has bravely surfaced
Teaching us to breathe
What was frozen through is newly purposed
Turning all things green
So it is with You
And how You make me new
With every season’s change
And so it will be
As You are re-creating me
Summer, autumn, winter, spring
Tuesday, February 5, 2008 4:27 AM CST
43 weeks
In my quest to be better functioning, I have come to some conclusions. If I were in an accident that crushed my pelvis or legs, it would take months of therapy to learn to walk again, if ever. If I were badly burned, my skin may be able to be repaired after several operations but I would be forever scarred. Currently, my wounds are are less noticeable, they are invisible - but still in need of rehabilitation. I will make progress, then suffer setbacks. I will have to relearn things I already knew and just have to do it over again with a significant part of my life missing. I need to learn to reclaim joy again.
In Patsy Clairmont’s Book Finding God in the Broken Places she writes “We need someone who can fix our broken places, spackle our perspective, and give us reason to laugh. God sent Jesus as a Redeemer to do just that – to redeem the shards of our lives and create a stained-glass perspective. When we realize we’re broken and acknowledge Jesus as our Redeemer, then the cruising blows of life do not destroy us. Instead, we see through our repaired eyes ‘the goodness of the Lord in the land of the living’ (Psalm 27:13). Then we live with hope, we dance more often, we laugh more deeply, and we are not surprised by the fact that life is all cracked up. In the end, the discovery of self is not nearly as much about who we are as about Whose we are."
Please pray for Angie Mudd who has been a huge support of our family since Frankie was born. She came to the house, helped with dishes, house cleaning or whatever needed done. She treats my kids like her own grandchildren even though she has 5 kids of her own and several grandchildren. She loved Frankie deeply. She is recovering from a heart attack.
Long time family friend, Linda Defrange, has been diagnosed with breast cancer and having a difficult recovery from surgery. She has prayed fervently for our family. I would like to return the favor.
Give me back the joy of your salvation, and a willing spirit sustain in me. Psalm 51:14
Sunday, February 3, 2008 2:02 PM CST
More from "Hour of Gold, Hour of Lead" from Anne Morrow Lindbergh
Journal entry 9/17/1932
A terrible effort to get back to North Haven and to live the same life. And we can't do it. Partly because the very essence of our old life was its being taken for granted. We want really to get back in to our old selves, and we can't. It's like trying to get back into your old clothes; they don't fit.
9/25/1932
The wind howls at night. I think of last winter. I will never accept it - cannot accept it or get used to it or get past it. It is not like a death - not like Daddy - which I knew would happen sometime. It is not a "normal" sorrow. Back of it is always 'It need not have happened,' and that is a torture. I suppose I can only swallow it whole. It will not be absorbed but always be there, and always hurting like something in your eyes. Nature does not absorb it but gradually provides a protective covering which numbs the sharp pain, but you are always conscious of it.
9/27/1932
I felt last night bitterly and passionately that I had lived too much in the last few years, had lived to intensely, been too sad and too happy. That I had felt too much. That life was too precious - much too precious. I want to be delivered from that feeling...
It isn't for the moment you are struck that you need courage but for the long uphill climb back to sanity and faith and security.
Saturday, February 2, 2008 5:28 AM CST
One of the books I have been reading is "Hour of Gold, Hour of Lead" by Anne Morrow Lindbergh. I have found her to be a fascinating person. Although there are many contrasting aspects to our lives: we live in different time periods, she lost her oldest child, she was in her twenties at the time, her child was murdered, she lived a very public, affluent lifestyle there are still many similarities to the emotional side of losing a child. She writes:
"I think, ananlyzing it, that women take and conquer sorrow differently from men. They take it willingly, with open arms they blend and merge it into every part of their lives; it is diffused and spread into every fiber, and they build from that and with that. While men take the concentrated bitter dose at one draught and then try to forget - start to work at something objective and entirely separate...I wake each morning (even when I do not dream) with the vague feeling that I have been close to the baby all night. I go to bed thinking of him - so vividly I almost see him - and then continue unconsciously in sleep. It is good, for by day he is getting further and further away - even the clothes, now I have looked at them three or four times, have lost his presence."
"Feel so weak spiritually-no stength in me. My mind and spirit unanchored and tossed about, insecure and terrified so easily, as if anything could topple me over. Dreadful feeling, on brink of lack of control."
"I feel that I have taken and taken and taken and not given anything back. Perhaps I can't give anything now. It is as though all of us close to this had lost our faith and once it was smashed we were vulnerable - anything could happen. As though your faith, a beautiful shimmering armor of glass, protected you infallibly as long as it was whole. But it's so fragile - once it's gone to pieces you have nothing."
"The world we talked about was so cruel and shifting, no one and nothing in the world to pin one's faith to. I felt weary and discouraged yet conscious of my own faith pushing up stubbornly again like a weed that has been plucked out over and over - and always bobs back."
Anne Morrow Lindbergh
"After great pain a formal feeling comes
The nerves sit ceremonious like tombs;
The stiff heart questions was it He that bore?
And yesterday - or centuries before?
This is the hour of lead
Remembered if outlived
As freezing persons recollect
The snow-
First chill, then stupor, then
The letting go."
Emily Dickenson
Tuesday, January 29, 2008 6:28 AM CST
42 weeks
One of the reasons why I am struggling emotionally is thinking about being back in Michigan at this time last year. Ten days after open heart surgery, Francesca's kidneys failed and had to be put on dialysis. I remember the nephrology fellow telling me. I looked at him like he had two heads. I refused to believe it until I heard it from the attending. We were then plunged into the world of kidney function. We became acquainted with the composition of the different dialysis solutions and methods. Mark would recheck the nurses' math computation sheets, looking for errors. (He found them often!) The catheters that are used to give peritoneal dialysis (where the fluid is put in the belly cavity) are temporary. Most children's kidneys "wake up" so that they do not need the catheter for very long. Each day she did not have function the worse chance a child has to recover. She ended up with 3 temporary catheters before going to surgery for a catheter that could be used longer term.
Throughout Francesca's life I had the support of a long time co-worker named Gloria. We worked together years ago when the toddler and infant units combined at Akron Childrens. We ended up at telephone triage together and worked night shift for years. Gloria was like my second mom. She was always there to listen and support me. Her sense of humor is unrivaled. She always remembers and celebrates special days with cards and treats. When Frankie was sick, there were so many nights I was driving to work in tears, so exhausted I did not know how I was going to make it. She would have coffee ready and a word to encourage me. She literally kept me sane through that period of time.
Unfortunately, she knows what it is like to know a heart patient. Dr. Bove saved her granddaughter's life when she was small. Allison, who is now 12yrs old, is back in Ann Arbor for another surgery. Thinking of them being there is sending me down a bunny hole. It is not a parent-friendly place to be. There is little privacy. Parents are forced to leave often. It is very difficult. Keep the Gmerek family in your prayers.
Sunday, January 27, 2008 9:59 PM CST
Just when all seems hopeless, prayer lifts me like an ocean. A sturdy craft, prayer doesn't hide from pain, but uses it like the force of the sea to move me to a new place of insight, patience, courage, and sympathy. Always, it is God's hand beneath the surface holding me up.
Hope swells my sail.
James Montgomery
Thursday, January 24, 2008 4:40 AM CST
The days have gotten so difficult. Moral is low in the house. It feels like little joy and all work. Everyone looks to me to "rally the troops" but I am tapped, too. I LOVED the stories of Frankie. They always give me a boost.
"If there are many persecutions,
there are many testings
where there are many crowns of victory
there are many trials of strength.
It is then to your advantage if there are many persecutors;
among many persecutors you may more easily find a path to victory."
St. Ambrose
Tuesday, January 22, 2008 4:38 AM CST
41 weeks
Thanks for sharing the memories of Francesca. Reading those does boost my spirits. She did and said so many funny things. Her life was full of appointments and procedures. Fortunately, although she may not realize it, therapies and injections were often given in our home. Others sacrifice helped protect her from infection but made it so even our home was not always a safe place. She always exercised her opinion in no uncertain terms! Her illness did make it possible to meet so many wonderful people. I cherish those relationships.
In my quest to function better, I have been reading a fair amount of books from the library. One particular author appeared recurrently: Jack Canfield. Jack and his co-author Mark Victor Hansen wrote the "Chicken Soup for the Soul" books. He tells a fascinating story of the progression from his humble beginnings to a very successful author. He and I share the same goal in life - to empower others. When I went to the library web site, 149 books came up under his name. There a myriad of chicken soup books for all kinds of souls. The stories are great! I selected the audio versions so I could listen while I wash dishes or fold laundry. Even the kids joined in. There are several on DVD where either the stories are acted out or the actual people are speaking. Very inspiring!
Jack went on to write several books that can be applied to bettering your life from a business perspective or to realize your dreams. I checked out "The Success Principles", a phenomenal step by step approach to go from "where you are now, to where you want to be." I found it to be very practical and were able to apply somethings right away. For example, reading a book a week, especially great works. I love to read but have not made it a priority to read at that pace. He brings up so many terrific ideas that I did not think of or were to scared to try. He speaks of how to pick a mentor or talking to successful people in your field of interest. I would have a blast speaking to people I have admired for years. I would be challenged beyond my comfort zone to speak publicly or to think of writing that book. Jack's concepts made it possible to at least consider that goal.
Don't hesitate to check out some "Chicken Soup" from your local library and encourage your soul today!
Saturday, January 19, 2008 4:47 AM CST
The "grief bombs" have been flying again this week. I feel like a Vietnam vet who cannot escape the events of his past. Random bombardment of previous experiences invading the present. I am sliding, fighting, falling back down the mountainside of grief back into the pit of despair. Formerly an optimistic, rise-above-all kind of person, I am trapped in a cage of negative emotion. I can see all of my blessings through the bars. I can see those who have circumstances far worse than mine. Nevertheless, I cannot seem to break through. Is this all part of the year of firsts? Or is it something more? I poured my heart and soul into Frankie's care but there was something symbiotic in our relationship. Her feisty spirit was engaging. Her wit was far beyond her years. Exhausted though I was, holding her was therapeutic for the both of us.
It is not as if I don't have another avenue for my affection. There are other needy children in the house. There is no lack of things to do here. I just cannot seem to get in the right routine to make it all run smoothly.
I miss her so much.
If anyone has a memory of an experience with Francesca, I would love to hear it.
Tuesday, January 15, 2008 8:53 PM CST
40 weeks
At this time last year, Mark, Francesca, and I were in Michigan. We had our last meal together as a family at Mike's Place in Kent then we went our separate ways. Four of the kids went to stay with my brother in Columbus, some stayed home, and we departed for the University of Michigan. Frankie had a long day of pre-op testing. Uncle Phil and Mark's parents met us in Ann Arbor. We had dinner at Red Lobster. The management were so taken with Frankie, they made her a card and offered to give her a free dinner if we ever came back to the restaurant. We were all anxious for the following day; the big surgery that was to fix her malformed heart for good. We were told to anticipate about a 2 week stay. I knew to at least double that amount of time but I was trying to remain as optimistic as the surgeon, Dr. Bove. He seemed so confident that he could obtain a good repair, although it would be an extremely complex and long operation.
It was impossible to know what was to unfold in the coming months but I wish we could choose differently now.
Saturday, January 12, 2008 4:48 AM CST
"The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome. The hilltop hour would not be half so wonderful if there were no dark valleys to traverse."
Hellen Keller
Wednesday, January 9, 2008 5:03 AM CST
39 weeks
39 weeks is how long I carried Francesca before I was induced. As I wait with anticipation for a birth of a different kind (a way to honor her memory best) I am reflecting on the day she was born. I transferred my OB care soon after her heart condition was diagnosed. I had several fetal echos with the pediatric cardiologist, Dr. Younoszai, and met with the high risk OB. I inquired about if there were any nurse midwives on staff to assist with the delivery. The OB made a note to have one there. I made everyone nervous because of the number of children I had. We all knew that Francesca needed open heart surgery the day she was born, so no one wanted me delivering anywhere else but the Clinic. Since I lived an hour away, the induction was scheduled a week before my due date. The Friday before my induction I received a phone call from Dr. Younoszai who told me there was a problem. Dr. Roger Mee, the world famous cardiac surgeon who would perform Frankie's operation was having surgery himself; his retina detached. He would never recover in time for Frankie's delivery. We had to come up that day for appointments anyway. We met with Dr. Mee's partner, Dr. Duncan, who was taking over all of Mee's patients and was wiling and able to do the surgery. We knew Frankie had less than a 10% chance of surviving with Dr. Mee's expertise. We were devastated. Our appointments ended late afternoon. Instead of fighting rush hour traffic Mark and I decided to go to Little Italy to attempt to find a solution. We happened upon Guarinos restaurant. We were greeted warmly by the owner, Nancy Phillips, and her daughter, Rachael, who was also pregnant. Since it was her first child, she had lots of questions. As we conversed, they learned this would be our 9th child and the concerns that we were facing about her health. We ended up with a fabulous free dinner and are, to this day, still treated like family. Whenever Frankie would be admitted for a long time, the kids would come up and we would go to dinner there.
We decided to stay at the Cleveland Clinic rather than go elsewhere at the late date. I was admitted the night of August 25, 2004. I was already 2-3 cm dilated without being in active labor, as is my pattern. My IV was inserted and the pitocin started so that she would be delivered by morning and the long surgery could commence. By 5am nothing was happening. I could not understand. A little bit of pit usually gets me going quite nicely. As I pushed my IV pole to the bathroom I discovered that the pitocin was not infusing into the main IV fluid. It was dripping on the floor. Once it was actually connect properly, things started to move along. Unfortunately, the doctor who had followed me all summer was going off call at 7 am. I had not delivered yet. Thankfully, the nurse midwife, Linda Bloom, stayed over to deliver Francesca. The whole neonatal team was ready. The room was crowded with people ready to spring into action but she allowed Mark, my mother-in-law, and my uncle Phil, the priest, to be present for the final part of the delivery. They were positioned behind me. I was carefully draped so nothing was revealed. Frankie came out, Linda placed her in my arms for precious seconds. Uncle Phil baptized her over my shoulder. Linda did not cut the cord. She felt the pulse in the cord, as it began to weaken, she signaled to me that it was time to go. Francesca was whisked away to be evaluated and worked on. Within hours she was intubated and taken to the OR. The surgery was about 7hrs long. A weary Dr. Duncan appeared in my room later. He felt confident about the results but the next 72hrs were critical.
To make a long story short, she made it through one thing after another to go home three weeks later. It was the beginning of our relationship with many good folks: at Cleveland Clinic and the Johnstons to name a few. At the same time Debbie Johnston and her family were fighting for her son's Gabriel's life.
39 weeks I carried Francesca and I did not know if she would survive.
39 weeks without her and I did not know if I would survive.
I am starting this year full of hope. Hope that I will gain focus, that our story may impact others, that our children will move past their difficulties to also make a difference, that Francesca's life may motivate others to persevere through their suffering for a higher purpose.
Sunday, January 6, 2008 11:36 AM CST
Just when I was looking forward to starting the year without illness and hospitals, Mario (4yo.) gave us quite a scare. The day after New Years he started complaining of R hip pain rather acutely. It grew severe rather quickly. By morning he could not walk and he had fever. We were seen at the pediatrician's office and sent to Akron Children’s for an ultrasound of his hip. It showed he had fluid around the joint. Now we had to rule out infection vs. toxic synovitis (where the joint is inflamed but will resolve on its own.) After X-rays, tests, and hours of waiting we were allowed to go home for the night. Mario and I returned to see the orthopedic surgeon the next day. By then he had more range of motion and seemed to be improving. Although he still has a low grade fever, it most likely is the synovitis. We are greatly relieved. As I sat in the surgery waiting room with other parents, I flashed back to the hours of waiting when Francesca was in surgery. Although none of them were having open hearts. Nonetheless, the uncertainty and apprehension were evident. It further ingrained my desire to help others. I pray that my role will take more focus as the year unfolds.
"A life of faith...enables us to see God in everything and it holds the mind in a state of readiness for whatever may be his will."
Francois Fenelon
Tuesday, January 1, 2008 0:43 AM CST
38 weeks
As we close the door of this difficult year may we leave behind the baggage of pain, loss, disillusionment, and despair - shed it like old skin. May we emerge into 2008 bringing the good memories and the spirit of Francesca. Let it resurrect a new me, one full of hope - a person who can make a difference, like she did. I want to be a one who can empower people to dig down deep, discern what they want out of life, overcome all obstacles, and achieve their dreams. I would like to spend a lifetime doing just that. Francesca inspired me to push far beyond what I thought was possible. I would like to honor her memory by helping others.
Friday, December 28, 2007 2:20 AM CST
I found this on another caringbridge site. It describes things so perfectly.
A Pair of Shoes
I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day, I wear them and each day, I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them. I get funny looks wearing these shoes. They are looks of sympathy. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes. To learn how awful my shoes are might make them uncomfortable. To truly understand these you must walk in them. But once you put them on , you can never take them off. I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women are like me and ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No woman deserves to wear these shoes. Yet, because of these shoes, I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I will forever walk in the shoes of woman who has lost a child.
-author unknown
Tuesday, December 25, 2007 3:46 AM CST
37 weeks since Francesca's death
The presents are laid out for the kids. I was more prepared than usual but the holiday is strangely empty. I found myself clutching a baby doll or stuffed animal often. After 18 years of raising kids, there is no baby in our house.
I enjoyed the weekend with my siblings. Their relaxed, friendly banter lifted my spirits. I feel loved, supported, and affirmed. They always have something positive to say. We do not get together as often as we like so we appreciate the time we have together.
I can't stop thinking about last year's Christmas when Francesca was so well. Those were great times. I came across some old movies of her second birthday. It was great to hear her voice again; to watch her mannerisms; to chuckle at the funny things she did.
I asked a co-worker how she got through the first Christmas without her husband. She had people send memories of him and filled his stocking with the slips of paper. Christmas morning she read them to her 2 grown children. They reread them each year. If anyone would again share a memory of Francesca I would do the same for my children. It can be about anything she did or said or that you observed.
A friend gave me this letter:
Dearest Mommy, Daddy, Angelo, Anthony, Guiseppe, Gina, Maria, Dominic, Sophia, and Mario
'Tis Christmas in Heaven, What a beautiful sight!
It's so peaceful here; Everything is all right.
The crib is adorne with the brilliance of stars,
Wisemen have come from Venus and Mars.
I've met all our dear ones who preceded us here;
The reunion was lovely an event full of cheer.
And tonight we'll all gather in reverence we'll kneel,
For the Babe in the cradle up in Heaven is Real;
I think of my family that I left behind
And I pray that your Christmas is as blessed as mine
Please shed no more tears for my soul is at rest,
Just love one another, Live life to its best.
Yes, It's Christmas in Heaven, So I've heard them say,
Yet, Christmas in Heaven happens everyday.
Love, Frankie
Saturday, December 22, 2007 5:16 AM CST
"It is impossible for the human mind to fathom our infinite God in His totality. But He reveals His nature in pictures, images of what He is like and who He is. The Bible is filled with powerful illustrations of God—He is strong as a fortress, a shield, a rock; yet He is graceful and beautiful as the wings of a dove. And there is one image that speaks more powerfully than any other.
God is our Father.
No image could be more universally appreciated than that of a parent. The love from our parents, or the lack thereof, does so much to forge our image of who we are and how we see the world. He is the heavenly representation of the wonderful parents we have, or even the missing source of nurturing love we so desperately long for."
from todayintheword.com
I have been greatly encouraged through the kindness of others and your continued prayers.
May God's love touch you in a powerful way to give you the strength for whatever difficulties you are currently facing. Only through God can we experience peace in the busyness of this season.
Wednesday, December 19, 2007 4:58 AM CST
Nothing like Max Lucado to help add perspective to the real reason for this season:
"It happened in a most remarkable moment... a moment like no other. For through that segment of time a spectacular thing occurred.
God became a man. Divinity arrived. Heaven opened herself and placed her most precious one in a human womb.
The omnipotent, in one instant, became flesh and blood. The one who was larger than the universe became a microscopic embryo. And he who sustains the world with a word chose to be dependent upon the nourishment of a young girl.
God had come near.
He came, not as a flash of light or as an unapproachable conqueror, but as one whose first cries were heard by a peasant girl and a sleepy carpenter. Mary and Joseph were anything but royal. Yet heaven entrusted its greatest treasure to these simple parents. It began in a manger, this momentous moment in time. He looked anything but a king. His face, prunishand red. His cry, still the helpless and piercing cry of a dependent baby.
Majesty in the midst of the mundane. Holiness in the filth of sheep manure and sweat. This baby had overseen the universe. These rags keeping him warm were the orbes of eternity. His golden throne room had been abandoned in favor of a dirty sheep pen. And worshiping angels had been replaced with kind but bewildered shepherds.
Curious, this royal throne room. No tapestries covering the windows. No velvet garments on the courtiers. No golden scepter or glittering crown. curious, the sounds in the court. Cows munching, hooves crunching, a mother humming, a babe nursing.
It could have begun anywhere, the story of the king. But, curiously, it began in a manger. Step into the doorway, peek through the window.
He is here!"
from The Gift for All People
Tuesday, December 18, 2007 5:01 AM CST
36 weeks
As I struggle through this first holiday without Francesca, I have become aware that I may slip but not fall. There is a safety net of prayer and support that encourages me to keep going. My mother gave me many gifts as a child but faith has been the best. I have a God who is bigger than any dilema I face, who loves me even when I fail, who does not count the number of times I fall but when I get up, and has sent me support in my darkest hours.
Please continue to pray for Luke Haskell and the family of baby Magie who passed away on Dec 12th.
more later
new pictures
Sunday, December 16, 2007 4:15 AM CST
I find myself less functional lately; slipping back to the weeks after Frankie's death. I am distracted, distant, not sleeping, cannot get organized. The trickle down effect is that I am not at the top of my game with the kids. I am not always right there to end the squabbles before they escalate. Everyone becomes more irritible at a time when we need to be working together. We look less like the holy family and more like a reality TV show.
I called my uncle, Fr. Phil Pritt, the other day. He has great perspective and is an excellent listener. He has been not only one of the greatest blessings throughout the ordeal with Frankie, but the most solid, reliable male figure in my life. Uncle Phil not only baptized my siblings and me but had all my sacraments and those of my children. He was there for me after my father died (I was 8 years old), when Francesca was diagnosed (when I was 21 weeks pregnant), baptized her in the delivery room, came with us to Michigan for her surgery, visited often at Cleveland Clinic, was there the day she died, and had the most amazing funeral celebration one could have.
He compared my trials to that of the Blessed Mother. I know she can identify with so many things I have experienced. The challenges and questions raised by her pregnancy, trying to protect the life of her child, feeling unworthy and unable to care for such a child, seeing her child suffer greatly despite knowing a heavenly reward. The night she died, I held Francesca in my arms as she left this earth. Mary held Jesus after He was taken off the cross. She knows. She knows! The sword of sorrow has pierced her heart many times. I am not alone.
I want to be about getting ready for Jesus' coming this year, not about the busyness and the details. I have not done a good job with that. Maybe Mary did not feel prepared either. I pray that we all know what to do to ready ourselves for His coming.
new photos
Thursday, December 13, 2007 5:31 AM CST
"Perhaps you went to bed last night thinking about the overdue bills, the lack of finances, the problematic people you have to face. This morning you woke up.
Did you give thanks?
Maybe your back is out, maybe your leg is broken, your head is stopped up or your eye is swollen. So you are in pain. You are in fear. You are in an uncomfortable state.
But did you give thanks?
You may be alone, heartbroken, confused, or disappointed. The issue still remains:
Did you give thanks?
Let's put is this way: You can think, you can feel. You are alive. You have a brain, a life, an idea. All of this means that some way, someday, you can do better. So
Did you give thanks?
If you didn't you probably forgot that when the praise goes up, the blessings go down. That should be enough to inspire you to be thankful."
from Faith in the Valley by Iyanla Vanzant
Tuesday, December 11, 2007 4:37 AM CST
35 weeks
"His purpose in all of this is that they should seek after God, and perhaps feel their way toward him and find him - though he is not far from any one of us."
Acts17:27
"The Lord is always there for you, waiting to fill your life with encouragement and affirmation, waiting mercifully to restore your soul. He does it through the words of Scripture, through the soft whisper of His Holy Spirit, and especially through the people who love, accept, and support you.
When I've felt that I'm not close to God, I realize that I'm the one who has move away, not God. We can always step back into His presence by expressing our thanks to Him for all He has done for us.
Even though these are difficult days for us, I've found that there's always something to be thankful for: a nurse with a smile, a phone call from someone who is dear to me, medicine that is helping me get well, a doctor who gives me assurance that everthing's going to be okay. God has little helpers everywhere who perform acts of encouragement for my hurting soul. I want to appreciate all that they do to encourage me each day.
Father God, I don't want You to go very far from me. I really need to know that You are close by. Your assurances mean a lot to me at this time. You are truly my strength during these difficult days."
from Minute Meditations for Healing and Hope by Emilie Barnes
I received a phone call yesterday for an anonymous gift for 2 1/2 hours of house cleaning! I was able to schedule it before Christmas. THANK YOU! THANK YOU! THANK YOU! What a great surprise and a much needed service.
Please keep praying for the children in Boston Childrens Hospital. See caringbridge.org/visit/lukehaskell
new photos
Sunday, December 9, 2007 4:20 AM CST
The Valley of Character
“The reward you receive for a job well done is getting a bigger, harder job to do. Many of us believe that once we demonstrate how strong, how good, how smart we are, life should give us a break. We believe that we should be “home free.” Nothing could be further than the truth about the way life works.
The tree’s strongest branches and deepest roots are those that have withstood the heavy winds and stormy weather, season after season. You must never become tired of reaching, stretching, growing, and becoming better and better. The old folks called it ‘moving from glory to glory.’ You must always, always keep in mind the more you can do and the more you know, the more you will be called upon.
Yes, you have a right to be tired. Yes, you are entitled to a much deserved rest. Once you get rested – get ready – life is going to bring you a big task to perform, a deep mystery to resolve, and a greater victory than you have ever had before.”
From Faith in the Valley by Iyanla Vanzant
I am going to attempt to change the photos more often but I am technologically challenged. Also the current ones are of last Christmas.
Friday, December 7, 2007 2:22 PM CST
I heard this song while driving today. It seemed appropriate for how I am feeling but focuses on the power of God to change things for the better.
RESURRECTION by Nicol Sponberg
I'm at a loss for words, there's nothing to say
I sit in silence wondering what led me to this place
How did my heart become so lifeless and cold
Where did the passion go?
When all my efforts seem like chasing wind
I've used up all my strength and there's nothing left to give
I've lost the feeling and I'm down to the core
I can't fake it anymore.
chorus:
Here I am at the end I'm in need of resurrection
Only You can take this empty shell and raise it from the dead
What I've lost to the world what seems far beyond redemption
You can take the pieces in Your hand and make me whole again, again
You speak and all creation falls to its knees
You raise Your hand and calm the waves of the raging sea
You have a way of turning winter to spring
Make something beautiful out of all this suffering
chorus 2:
Here I am once again I'm in need of resurrection
Only You can take this empty shell and raise it from the dead
What I've lost to the world what seems far beyond redemption
You can take the pieces in Your hand and make me whole again, again
You have a way of turning winter to spring
Make something beautiful out of all this suffering
chorus
Thursday, December 6, 2007 3:14 PM CST
Spirit of Life, we gather in the protective shelter of your love and Spirit that keeps unfolding in our lives. We come with searching questions, unresolved questions, and thoughts that are not clear. Yet we remember that we are free to clear out the cobwebs of closed minds and outworn ideas, and free to cleanse ourselves and be renewed. Sitting here with a common bond that gently unites us, we savor the memories of our special children. Together we search out new beginnings with wonder and with awe. Some of us are tired, some are resltess, some are in deep pain, some are in deep peace, and some of us don't know how we feel. Help us to be present to one another and to anoint each other with light and energy. We lift our lives to the Ever-Present Light, and invite the flame of divine love to blaze through us. We seek the courage and commitment to let the winds of peace and hope blow through us. We trust the vision of the smile on future's face and we trust your Presence among us. Amen.
Please continue to pray for Luke Haskell. He is now off the ventilator but has contracted two serious infections.
(Adapted from Doris El. Blesoff.)
Thursday, December 6, 2007 3:14 PM CST
Spirit of Life, we gather in the protective shelter of your love and Spirit that keeps unfolding in our lives. We come with searching questions, unresolved questions, and thoughts that are not clear. Yet we remember that we are free to clear out the cobwebs of closed minds and outworn ideas, and free to cleanse ourselves and be renewed. Sitting here with a common bond that gently unites us, we savor the memories of our special children. Together we search out new beginnings with wonder and with awe. Some of us are tired, some are resltess, some are in deep pain, some are in deep peace, and some of us don't know how we feel. Help us to be present to one another and to anoint each other with light and energy. We lift our lives to the Ever-Present Light, and invite the flame of divine love to blaze through us. We seek the courage and commitment to let the winds of peace and hope blow through us. We trust the vision of the smile on future's face and we trust your Presence among us. Amen.
Please continue to pray for Luke Haskell. He is now off the ventilator but has contracted two serious infections.
(Adapted from Doris El. Blesoff.)
Wednesday, December 5, 2007 2:45 PM CST
Gina, Maria, and I attended a remberance service that Akron Childrens organized to remember, not only children who have died this year, but also children who have passed away in years past. Knute Larson, from the Chapel, welcomed us, offering hope. That was one of the reasons I came. To remember and gain hope. I have hope that I will see Frankie again but what I need now is hope that this desperate, agonizing pain will go away. A bereaved mother spoke last night. Her 2 1/2 year old son died fifteen years ago. The pain is still evident in her voice and in her soul. She spoke of being in a deep dark place and her journey from there. She talked of the trials and victories in that time. I found some similarities in our experiences and was comforted to know that the setbacks are not permanent. The analogy she used was climbing out of a deep hole using threads/ropes that she received from others. By tying them together eventually she was able to pull herself out. She did describe times when she fell back down. That is where I am currently. Although I have not digressed to the fog of the first few weeks, I have limited function again. I am more irritable, less organized, more depressed. The kids’ behavior immediately deteriorates creating a downward spiral. The timing stinks with the increased demands of the holidays. I know others have made it through and I will, too. I wish for ways to honor Frankie's memory. I will continue to be grateful for my many blessings.
This was in the pamphlet for the service last night:
"We Remember Them"
At the rising of the sun and at its going down
We remember them
At the blowing of the wind and in the chill of winter
We remember them
At the opening of the buds and in the rebirth of spring
We remember them
At the blueness of the skies and in the warmth of summer
We remember them
At the rustling of the leaves and in the beauty of autumn
We remember them
At the beginning of the year and when it ends
We remember them
As long as we live, they too will live, for they are now a part of us.
When we are weary and in need of strength
We remember them
When we are lost and sick at heart
We remember them
When we have joy we crave to share
We remember them
When we have decisions that are difficult to make
We remember them
When we have achievements that are based on theirs
We remember them
As long as we live, they too will live, for they are now a part of us.
As we remember them.
From Gates of Prayer,
Reformed Judaism Prayer book
Tuesday, December 4, 2007 1:08 PM CST
33 weeks
As much as I would like to avoid the holiday, it is indeed coming. Many are full of holiday cheer, busily preparing for Christmas. Although I am not quite Ebenezer, I am not able to join with the carolers. I have so many memories of last Christmas, my heart is breaking all over again. Francesca was doing so well. Finally, she was growing; tasting food with encouragement; talking articulately. She would get impatient with me if I did not come right away. She would call, "Mom, Mom, JEAN!"
Sunday we attended a party at the Italian club like we do every year. It is the time I take our family picture; the one shown in the photo section of this web site. It was the last picture we had taken together. Doing the same traditions are still meaningful to the children but extremely painful/sad/empty for me.
I recently found a paper that contained recipes for different calories of formula. Frankie gave us fits with her many feeding issues. The dietician at Cleveland Clinic was excellent but Frankie kept her on her toes. She called Frankie her "Little Dumpling". Christina was one of the amazing people who helped us so much with one aspect of Frankie's complicated care.
more later
Wednesday, November 28, 2007 3:54 AM CST
33 weeks
This day last year Francesca was headed to the cath lab at Cleveland Clinic. It was a scheduled procedure, unlike the emergent ones, in anticipation of her upcoming surgery in January. She had been well for many months so we had not been inpatient for some time. When we arrived on the floor, one would of thought she was Norm from "Cheers". Many staff members of M40 yelled her name as they recognized her. They commented on how big she had gotten. As word spread others came to see her, relieved that she was doing well, and "catch up" with what was going on in our family. It was our home away from home. Our second family. Many fought valiantly for her life, risking vunlerability because those who allowed themselves to get attached will be forever changed. They cheered with us, cried with us, walked with us, encouraged us. She was known to give people fits. She would make the docs think about her on their time off; Some would come in early or stay late. She made people appreciate the health of their own children. She inspired those who watched her fight one battle after another. She encouraged collaboration among the different services that cared for her. We met many amazing people in our time there and find myself thinking of them often.
We can't seem to stay out of the ER. Dominic made another visit early Sunday morning for croup. Even at 8 years old, he could not shake the stridor that was giving him grief despite getting steroids in the office the day before. He still is not well but breathing easier. He happened to be in the room that Frankie occupied the day before she died. We were sent there to get urine and blood cultures because she was running a temperature. The memories keep flashing back. I guess it is better than not remembering at all. I am getting stronger everytime I have to go down there.
"No good work comes from unrest.
Unrest, fear, anger, or sadness may motivate us. These feelings are sometimes intended to compel action. But our best work emerges after these feelings have been replaced by peace.
We will not accomplish our task any sooner, or any better, by performing it out of a sense of urgency, fear, anger or sadness.
Let go of unrest. Let peace fill the void. We do not have to forfeit our power, our God-given personal power - or our peace - to do the work as we are called upon to do today. We will be given all the power we need to do what we are meant to do, when it is time.
Let peace come first. Then proceed. The task will get done, naturally and on time.
Today, I will get peaceful first, and let my work and life emerge from that base."
The Language of Letting Go
Daily Meditations For Codependents
Harper Collins Publishers, 1990
Saturday, November 24, 2007 5:44 AM CST
On Thanksgiving morning there is a big fund raiser where some of the proceeds benefit the agency that Mark runs. It was started years ago by the Missimi family in their restaurant where I used to go as a kid. It has become so big it has to be held in a large hall. Mr. Missimi passed away this past summer but his son and daughter, who have been participating for years, are carrying on the tradition in his name. It was Debby that took my favorite picture of Francesca, sitting in my lap at Brunch Bunch, just last year. I have turned it into my best stationary. Anyone who receives a note from me will know to which photo I am referring. It was in that same hall that we had Francesca's first birthday bash! After a long and fretful first year, she was doing well. After tremendous support from the community during that time, we wanted everyone to celebrate her health with us. So we rented that hall, had the food catered, had balloons and the works. It was a grand time. Although my memory often fails me, the kindness of others will not be forgotten.
In the theme of thanksgiving:
O God,
who has set us in a world of soaring beauty,
and profound mystery. . .
who has enclosed our years within the eternal context
of fragrant spring mornings,
and sparkling winter nights. . .
who has granted us, over the years,
the lilt of lively companionship,
the provocation of ideas and personalities,
the sheer, clear point of joy
in creating a thing of loveliness,
or of excellence,
the steady, solid support of friendships tried, and tested. . .
we thank you.
Above all we thank you,
for the first flowing of conscience.
We look back,
and we recognize, in ourselves,
the dawning of a conviction that life is not simply
a random series of opportunities and disappointments.
We look back,
and we acknowledge that our life has been a gift,
a gift to be accepted - savoured,
a gift to be lived out,
fully lived out between the twin poles of freedom
and responsibility.
And now we step forward in this freedom and this responsibility.,
Free in the knowledge of how little is really essential.
Responsible in the conviction of how much is desperately needed.
Help us, living God,
to maintain this tension,
this heart-rending,
heart-healing tension.
And in all this grant us grace:
that elusive tenderness
that blesses all it touches,
that lightens every load,
that sings in every song
and dances in every step;
that grace which is the flame of love,
leaping up in our hearts,
and setting our lives afire.
Amen
--Barrie Shepherd - from: Alive Now, May/June 1974)
Tuesday, November 20, 2007 3:28 AM CST
32 weeks
I have crawled, scratched, and clawed through the last eight months without my daughter. Some days are dark and depressing. Some days filled with hope. Everyday I have the love of my Savior that lovingly cradles and comforts my child until we are reunited. Some days I have concrete shoes trying to climb mountains. Other days the loving acts of others makes life go more smoothly. Since I am easily inspired and I desire to be more positive, I have been borrowing great books on tape from the library. It makes the early morning laundry and the late night dishes infinitely easier. I am getting a much needed attitude adjustment.
Here is a prayer from Faith in the Valley by Iyanla Vanzant:
Dear God,
Please remind me that my days are numbered. Teach me that my time here in this life is precious so that I will not waste it. Help me to recognize how precious every moment is so I will spend it doing those things that will bring me closer to you. In the time I have left, please, teach me how to serve you, Dear God, to give joyously, share willingly, love totally. Remind me that I cannot serve in greed, doubt, fear, or anger. Fill my soul with your light so that your bountiful blessings will shine through my soul into the world. Each day that I awake I pray that you will be present in all of my thoughts, my words, and all of my deeds. I ask that every moment that I have left in this life be a channel through which some measure of your love and light may reach those for whom I come in contact.
Many thanks to all those who prayed for Guiseppe. It was a powerful and moving retreat for him. Hopefully it will be reflected in his behavior and he can channel that new found energy to change the world in a positive way.
Tuesday, November 13, 2007 4:30 AM CST
31 weeks
I have had more "grief bombs" than I have had in awhile. I thought I was doing pretty well but have had a difficult time lately. It started early Friday morning. I awoke clutching her blanket, picturing her crib next to my bed imagined things as they used to be: the whir of her tube feed running all night, the red light of her pulse oximeter bouncing with her heart rate, her chubby hands coming through the side rails of the crib to grasp mine, her sweet voice calling my name. Every morning when I would pack up her equipment and take her downstairs she would always say, "Bye, bye Daddy" whether Mark was awake or not. No matter how tired or ill she was, she always said it. She used to love to snuggle between us, playing games with the covers. She had a mischievous smile and an infectious giggle. I was always amazed that she could laugh after all she had been through.
Later, I took the kids on a hike with the home school group. The day was gorgeous. The leaves were beautiful. It is exactly the kind of thing I imagined doing with the kids when Frankie and I were trapped in the hospital for so long. Yet instead of being able to thoroughly enjoy it; it creates longing for her. I wish we could share it together. Am I never satisfied? The very thing I longed for and now I am discontent? As breathtaking as the nature we observed, how much better is her view. What must be her surroundings now?
Saturday Gina was playing in a soccer game indoors and was hit in the head with the ball at close range. I did not think much of it at first but I went down to check on her and she could not see out of the bottom half of her right eye. We ended up spending the next 4 hours in the emergency room. Akron Children's is where Frankie died and it is very hard for me to be there. Gina is my brightest child. I was frightened that she was going to lose her vision. I am already anxious, I hate being down there, then a chopper flies overhead as the staff is doing Gina's vital signs. I felt like a Vietnam vet having flashbacks. Frankie and I flew from Michigan to Cleveland when she was still very ill. I was pelted with memories from that trip and the night she died. I pictured her motionless body as they worked on her trying to get IV access, intubating her, etc. I thought I was going to lose my mind. We were then told all the rooms in ER were full. That "mother tiger" started to come out again. I was concerned that without knowing what was wrong with Gina, that she could not afford to wait. If her retina were affected, we would not have time to waste. It is hard to be calm when all those emotions are raging inside. I did speak up, tactfully. There were some patients going to be leaving soon. She was eventually seen and her retina was OK. We left feeling absolutely exhausted even though it was not very late. We followed up with the eye doctor and he has cleared her with no limitations. Her vision is pretty much back to normal. Thank God!
Another story in the life of an active large family. Sr. Jordan would have gotten a kick out of that one.
All of us who have lost a child have a choice to make as we attempt to move on without them. We will be forever changed. It is hard not to get lost in bitterness or drown in depression. Rabbi Harold Kushner writes in his book "When Bad Things Happen to Good People":
I am a more sensitive person, a more effective pastor, a more sympathetic counselor because of Aaron's life and death that I would ever have been without it. And I would give up all of those gains in a second if I could have my son back. If I could choose, I would forgo all the spiritual growth and depth which has come my way because of our experiences, and be what I was fifteen years ago, an average rabbi, an indifferent counselor, helping some people and unable to help others, and the father of a bright happy boy. But I cannot chose.
I cannot chose to bring my daughter back but I can chose to honor her by pressing on with gratitude for all that I do possess.
Tuesday, November 6, 2007 5:07 AM CST
30 weeks
Sunday there was a memorial service at the Cleveland Clinic for children who have died this past year. It was held in a beautiful building with carefully chosen music and readings. The following was read at the service:
May we discover through pain and torment the strength to live with grace and humor.
May we discover through doubt and anguish the strength to live with dignity and holiness.
Be with me, Most Holy God, and do not take my unhappiness to heart.
I know you are there but I cannot see past my sorrows and tears.
As the blown grass lifts, let me rise from sorrow with quiet eyes, knowing your way is wise.
Let me straighten after pain, as a tree straightens after rain, shining and lovely again.
May we discover through suffering and fear the strength to move toward healing.
May it come to pass that we be restored to health and vigor. May life grant us wellness of mind, body, and spirit.
Work within me, Eternal Light, to guide me through these dark days and bring your light to my life so that I may see your goodness even in my mourning. May we find in this transformation and passage moments of meaning, opportunities of love, and the deep and gracious calm that comes when we allow ourselves to move on.
Saturday, November 3, 2007 5:15 AM CDT
Last night, at our church, there was an All Souls Day mass to remember those who have passed away this last year. Francesca's picture was displayed with others whose families gathered together. This was printed on the back of the booklet that contained the names of those remembered:
"So many people see in death nothing but a cruel separation from loved ones. Even good and religious people make that mistake at times.
In death there is certainly the very real pain and sorrow of physical separation. But it is equally true that our loved ones remain with us. They do not just go off to some dark and distant place. They simply continue into eternal life. We do not see them because we are still in the darkness of the world; but their spiritual eyes, filled with the light of heaven, are always watching us as they wait for the day when we shall share their perfect joy. We are born for heaven, and we end this life to begin our life of endless happiness.
Our loved ones have not been destroyed by death but rather been given life! A life with power to know fully and to love perfectly. They are always present to us, loving us more than ever.
The tears that dampen our eyes are tears of homesickness and longing; but it is we who are away from home not them! One day we too shall enter the doorway of our eternal home and be greeted by those who have gone before us. For us who believe, death is a preparation for eternal union with God and those we love in joy and peace."
Wisdom 3:1-3
"But the souls of the just are in the hand of God and no torment shall touch them. They seemed, in the view of the foolish, to be dead; and their passing away was thought an affliction and their going forth from us, utter destruction. But they are in peace."
Please continue to pray for Luke Haskell, 6yo, who had open heart surgery in Boston, September 17th. He is still in the hospital, having a hard time. www.caringbridge.org/visit/lukehaskell
Tuesday, October 30, 2007 4:27 AM CDT
29 weeks
It was another weekend loaded with activities but memories of Francesca kept surfacing. The kids had "trick or treat". Many folks get enthusiastic about this event but it has never been my favorite activity. This year was even worse. All day long I kept picturing her in her princess costume, being pulled around in the wagon, just last year. She was not always the most patient child. She would wrap you with her magic wand if she did not get her way or you were not moving fast enough! She would even want to borrow a weapon from Mario's pirate costume which did not exactly go with the theme of her delicate wings and airy, flowing dress.
I had to take Anthony to a friend's house to finish filming a movie on which they are working. I had to drive by the pumpkin patch where we went with Frankie and the kids last year. She has so much fun. She was so happy and well! I could not stop the tears from flowing. Anthony noticed and inquired. He shared that for him it seemed like years since Frankie has passed away but it really has not been that long. I worry how this whole experience will effect them all but have to continually surrender it to God. If nothing else these last few years have been an extensive exercise in surrendering. Resistance and surrender are at the heart of Christian life. I wrestle as if I actually think I am the one in control. As a parent I have many examples of how I must appear to God at times. I have been the rambunctious toddler kicking and screaming; the obedient child, doing as I was told; the rebellious teen railing against the world in frustration that my needs are not being met but really just in short sightedness just cannot visualize how God is with me at every moment.
In the book God Came Near, author Max Lucado writes: "At first I didn't recognize him. I guess I was expecting someone in a flowing frock with silky-white hands. But it was he. The lion. The Judean Lion. He walked out from among the dense trees of theology and ritual and lay down in a brief clearing. In his paw was a wound and in his mane were stains of blood. But there was a royalty about him that silenced even the breeze in the trees.
Bloodstained royalty. A God with tears. A creator with a heart. God became earth's mockery to save is children.
How absurd to think that such nobility would go to such poverty to share such a treasure with such thankless souls.
But he did.
In fact, the only thing more absurd than the gift is our stubborn unwillingness to receive it."
Monday, October 29, 2007 4:27 AM CDT
I have been blessed with the gift of amazing music that has kept hope alive through tough times and continually reminded me of God's presence through the trials. This group, THIRD DAY, has many great songs that have kept me hanging on.
"Rise Up"
Well, I was there when you were torn apart
Now a piece of you is gone
Somehow you wish that you could only find
A little strength to carry on
You've tried so hard to make it on your own
That your heart has come undone
So I am here to prove that I alone
Have the power to overcome
Don't let your heart be troubled
This world will never keep you down
It will never keep you down
So rise up, my friend
No, this will never be the end
So rise up, my friend
And live again
I didn't want you to feel this way
It's not what life was meant to be
And so for you, my friend, I'll take your shame
You can give it all to me
'Cause you've wrestled demons every day
And they've dragged you to your knees
But in your weakness you will learn to find
That I will always be your strength
In life or in death
Through joy or regret
And all of the secret things you have done
No matter what comes, my friend
Nothing can keep you from the love of God
Wednesday, October 24, 2007 7:07 PM CDT
28 weeks
I am again feeling the many highs and lows of this journey. Now seven months without Francesca has left much time for pondering. So much to be thankful for: the beauty of fall, the health of my other children, the many privileges afforded us that live in this country but I still get stuck in the everyday struggles. Is it a fallacy to think I could "get it all done" on any given day? Where is the time to enjoy the sweetness of my children, linger long enough to watch the sun set, or saunter down a path to see the leaves changing? Conversely, everything moves at a breakneck pace, unable savor the simple things. A great friend of mine, another mother of nine, often jokes that dinner time is more like "slopping the hogs" than eating a leisurely meal together. After all, what did I expect, I have 3 teenagers, I am told. I did expect more. This is certainly not where I thought I would be at this stage of my life. There is much to learn from this experience. As this gaping hole in my chest continues to heal, I have been consistently comforted by those in the body of Christ. I have not been abandoned by God however difficult the circumstance. Like the purple bulbs I sunk in the ground today, God is working in the underground of our souls. The fertility of the soil depends on our willingness to trust and obey His will. The hardest lesson for me is to wait for the spring when that bloom will burst forth after a long winter. Winters are unpleasant but necessary part of life. As I offer up everything to God, from my deepest sorrow to the mundane and repetitive chores I perform daily for my family, God blesses it all. May I never fail to keep sight of that no matter what happens in the course of a day, especially the days when I wonder if my efforts make a difference. They do to God.
"If you stand up and be counted, from time to time you may get yourself knocked down. But remember this: a man flattened by an opponent can get up again. A man flattened by conformity stays down for good."
Thomas J. Watson, Jr.
Friday, October 19, 2007 4:30 AM CDT
27 weeks
In the months since Francesca has died I have finally been able to move from the middle of the road of life where I was being run over and have made it to the curb. In the early days I was so devastated, I could not help myself. Every time I would so much as lift my head another event would just knock me down until I did not want to get up anymore. Now that I have made it to the sidelines, thinking that life is still going on at the speed of light all around me, I have attempted on some levels to re-enter but my mind is still trying to make sense of it all. No matter what I am able to accomplish, it has this empty feeling attached to it. Especially the fun things create this yearning because Frankie is not here. Does one just grow accustomed to the discontent? Does it fade over time? I remember the horrible fog of the early weeks. I have progressed somewhat, I am accomplishing more but there are several things that are stumbling blocks. I often feel like a Vietnam vet who is having flashbacks. It takes very little to trigger the flow of memories: seeing the van that delivered her home health supplies, Cleveland Clinic advertisements, an ambulance, Akron Children's where she died. A whole string of memories will start to play: her chubby face crying for a drink, her pleading with the nurse during a dressing change "Easy, easy" she would remind the nurse as she took of the adhesive; intubation, chest tubes; long nights trying to sleep on the window sill away from the other kids. Trying to learn the lingo to keep abreast of what was going on inside her complicated body, frustrated with the constant changing personnel that made it difficult to follow her trends.
As we watched the Indians play the Boston Red Sox the other night I thought, how can I be watching a ball game when children like Luke Haskell are fighting for their lives in Boston and hospitals all over? It just does not seem right. When we were at the University of Michigan for Frankie's surgery in January, I literally did not go outside for 5 weeks! I forgot what it was like to drive in a car, breathe outside air. I did not know what was going on in the world, every ounce of energy went into helping her survive and supporting the kids at home. I yearned to be back home, in my own bed, all together again. Now that I have the opportunity to do many things, I cannot reconcile it in my head. Even praying does not seem enough. So I will ask all of you to pray again for all those languishing in hospitals, unsure of their child's future, holding on to hope that everything will be OK. Pray that they will have the strength they need to persevere and that their children will be comforted.
I continue to be touched by your kind words in person, your notes in the mail, or your entries on the website. I am truly grateful. I know that through those prayers I will figure out my role in helping these families.
"Nothing in this world can take the place of persistence. Talent will not; nothing is more common than unsuccessful people with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan 'press on' has solved and always will solve the problems of the human race."
Calvin Coolidge
Thursday, October 11, 2007 4:46 AM CDT
The dedication of the Sr. Jordan Peace Garden was a wonderful tribute to the woman who provided more than just a meal to those that came to Kent Social Services. The landscaper is an amazing young man who took on the project, selected every plant with great care. All are fragrant to draw birds, butterflies, and hummingbirds. He specifically showed me the passion flower (representative of Jesus' passion) that is now in bloom. It is the most unique flower I have ever seen, difficult to describe, amazingly delicate and purple! There are stone benches in which to sit and pebble paths so senior citizens can have a shorter route to walk when coming for lunch. It will be a serene place to meditate and reflect. I was invited back in the spring when all the purple tulips will be blooming in honor of Francesca!
By special request for Linda Lauck I will post my words about Sr. Jordan.
There are those who open their hearts to others …
Who never think twice about giving of themselves.
They are the wonderful warmhearted people
who make all the difference in our lives.
I think this describes Sr. Jordan.
We first met when my 3 oldest boys were very small and she was working out of cramped quarters of the first Center of Hope building. Little did I know that meeting would develop into a life changing friendship that would see us through many ups and down in my life.
Jordan was complex
She was kind but not compromising
Brilliant but not proud
Strong willed but not impossible
She commanded respect without demanding it
She was outspoken but not verbose
Spiritual but not pious
Responsible but unpredictable
Tough but loving
She welcomed all without judgment
Always giving all that she had
She could coax a dollar from the stingiest donor
She could stretch a dollar better than anyone I know
She could make a meal out of others’ leftovers
She could organize a workforce
Rally a community
She summoned ones’ gifts whatever they were
When Sr. Jordan called – YOU CAME!
Sr. Jordan gave me one of the greatest gifts a young mother craves – encouragement!
As I was struggling with the responsibilities of rearing many small ones, she recognized my want to serve God by raising conscientious children. When I felt like I was falling short, she praised me for the things I did well.
She howled about the stories of calamity that happened on any given day: toys that clogged the toilet, when Angelo shot off the fire extinguishers, the peanut butter and jelly sandwich in the VCR. Her laughter was contagious and I would walk away chuckling instead of feeling drained.
She took the desires of my heart
fanned the feeble flame into a burning desire to do all things well;
To serve God in the everyday and the ordinary.
The relationship she had with my children is something memorable.
Gina will always remember her as the nun who swore on occasion.
She always wanted to know what new vocabulary words the children learned recently; what each of them were studying. She loved them as individuals. She challenged them to work hard and fostered a love for learning by her own example. My daughter memorized a particularly long poem by Henry Wadsworth Longfellow to recite for her but Sister already knew the words herself. Jordan had a way of commanding respect – not with a ruler but with her integrity. If she heard any hint of disrespect in the boys’ voices, she called them on it. What mother would not like that kind of back up?
Jordan was one of the wisest, smartest people I have come across. I have never known anyone who could talk intelligently on so many topics. She was always quick with a bible verse or a quote from a saint or author to inspire or instruct. No matter what serious topics we discussed, there was usually food involved and we always got around to laughing.
We were better off for having been together.
How many of you have had a similar experience?
Jordan lived the gospel message.
She had a way of drawing others together especially around the table.
She knew that a special fellowship developed when one breaks bread together.
She did not care what denomination from which you came and ministered to those with no faith at all. Those who worked with her in the various programs she developed were often changed. Those who came to get community service hours often stayed after serving their sentence. She taught us much about the judgment of others.
She encouraged us to work together and eat together. At her hot meal program, there was no division between the workers and those being served.
She stood for all things good. She worked passionately for the poor and was a champion for their dignity. She felt they should have choices like everyone else. She protested injustice and violence of all forms. How fitting this be called a Peace Garden.
Jordan was constantly giving but the greatest gift she gave was herself. Her physical presence is sorely missed.
Sr. Jordan has deeply influenced this community and left her mark on our hearts. Even if we do not possess the wisdom, eloquence, or intelligence of Jordan, she still is calling us to make a difference with whatever gifts we have; one person at a time.
Tuesday, October 9, 2007 8:15 AM CDT
25 weeks
Today a memorial garden will be dedicated to Sr. Jordan Haddad, Francesca's namesake and godmother. My husband asked me to speak because we were so close. In preparing my talk I reflected on our time together. She was such an inspiration to me. She lived out her life in service to others. She had a brilliant mind and was a lover of learning. She fought passionately for the poor and was a champion for their dignity. I was greatly blessed by our friendship and wished we had more time together. Our world needs more heroes like her.
She helped me so much when Francesca was diagnosed in utero with congenital heart disease and given a very poor prognosis. Only Sr. Jordan could make something good out of that bad news. She told me I would raise a saint for God. Even in my grief I felt I was doing something noble. That perspective helped me to persevere through all that was to come. I did not know that when I named Frankie after her that she would develop the same fiesty spirit. All those who cared for Frankie knew of it. All those who knew Jordan could not deny it. She was not someone one wanted to cross! She channeled that passion into healthy pursuits. I do not know of many people who live out the gospel message better than Sr. Jordan did. She was known to give the coat off her back. She thought the poor deserve choices, like the rest of us. She was quoted,"We don't serve food; we serve people. We care for them in ways that are caring, generous and open."
Sr. Jordan was a prayer warrior like no other. She would rally the troops at the convent frequently for Francesca and our family. If one looks far back enough in the journal of this website, one will find words of encouragement from her.
There is so much more to say about her but I will stop for now. We will remember Sr. Jordan as the Peace Garden is dedicated to her memory and Francesca who died on a Tuesday. May their legacy live on in our hearts and in all that we do.
The Beatitudes describe Sr. Jordan's life so well.
"Blessed are the the poor in spirit, for theirs is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they who hunger and thirst for righteousness, for they will be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.
Blessed are they who are persecuted for the sake of righteousness, for theirs is the kingdom of heaven.
Rejoice and be glad, for your reward will be great in heaven." Matt 6:3-12
We rejoice with you both today.
Wednesday, October 3, 2007 4:23 AM CDT
25 weeks
I took 4 of the kids to the Cleveland Zoo to work on a classification project for Gina's science. It was not crowded and the weather was nice. We went with friends which made it more enjoyable and challenged me to be more upbeat. For the first time in nearly 18 years there is no diaper bag to pack, no stroller to push. The trip should be infinitely easier without juggling these items but just felt strangely empty. I could not help but notice the pregnant moms or new moms with their small children. Wasn't it just yesterday that I was taking the three oldest boys on these field trips? I could not stop thinking about how Frankie would have loved the animals or to climb on the playground. When my brother, Mike, got married in Toledo, we went to the zoo there. We have pictures of her petting goats and riding the train. She would have marveled at the baby rhino or been fascinated at the different species of birds. The kids seemed to enjoy it all. Even Dom's neckbrace did not seem to inhibit his activity. Mario commented when we were observing the seals. There were some swimming in the water and a rather large one on the shore with just its tail in the water. He figured that was the mama seal because "moms do not like to swim. They just like to put their feet in the water while their children are swimming."
We did not have time to make it over to Cleveland Clinic. The girls had a soccer game, I had to pick up Sophia, make dinner, etc. Still thinking fondly of all the folks who took good care of us while we were there.
Continue to keep Luke Haskell and his family in your prayers.
"Alone we can do so little; together we can do so much." Hellen Keller
Sunday, September 30, 2007 7:45 AM CDT
A trip to the emergency room by squad was not what I had planned for my Saturday afternoon. Dominic (8yo) was playing football. Had many long runs and several tackles. With thirty seconds left in the game his opponent grabbed his face mask and torked his head around. He lay motionless on the field with severe pain down his spine. Although he could wiggle his fingers and toes, his coach (who is a parametic) thought it would be best to get checked out. So we came to Akron Childrens by squad. I could not help but think of the ride I took 6 months ago, grateful that Dom was not critically ill but unnerving nonetheless. As the ambulance backed into the ER, I pictured Frankie on the stretcher, unresponsive. As we walked through the familiar hallways memories flooded back, as I tried to keep composed. Dominic was scared and hurting so I tried to be brave for him. His coach faithfully stayed with us and conveyed important information about the injury. By the time he left, I was doing better. We eventually got Xrays that ruled out anything broken. He was still very uncomfortable even after motrin so he remains in a neck immobilizer until we see an orthopedic doctor. Did I mention it was homecoming for Hoban? Never a dull moment. Nothing like Caringbridge to bring things back in perspective. We learned of a another child who is currently at Boston Childrens for heart surgery on Gabriel Johnston's webpage, a child we met at Cleveland Clinic. It is his 4th operation, a very complex repair, and he is having a difficult recovery. Please pray for 6 year old Luke Haskell. Read more about his story on caringbridge.org/visit/lukehaskell.
As always, thanks for your continued support.
"It's hard to beat a person who never gives up." Babe Ruth
Tuesday, September 25, 2007 5:09 AM CDT
24 weeks
Another week flown by, full of places to be and things to have done. I have learned one of the most important things in life is relationships with people. Deep connections with those near and far is what matters. This website was initially created to keep others informed about Francesca. Additionally, it has united many and literally saved me from despair. When folks would say, "God does not give you more than you can bear," I thought He was pushing His luck on many occasions. But He has sent the grace to deal with each day and many amazing people whose kindness has kept us going through the worst of times.
As Gina and Maria were working on a writing assignment, we were reflecting on many of the events since Francesca's birth. Maria wrote of her unique experiences as a 8-10 year old who was able to participate in Francesca's medical care in such a big way. Gina described, in her creative way, what life was like from the point in time when Frankie and I were being transferred by survival flight from University of Michigan to Cleveland Clinic mid February. I allowed myself to review some of what we have been through as a family. At times taking it day by day was too much. Minute by minute seemed difficult. Nevertheless, at least two of my children appear to have emerged undamaged. I continue to pray for healing as a family because each of the children have had different experiences as a result of the enormous amount of time and energy it took to care for Francesca.
I continue to enjoy even short comments from others. So do not stop writing! Yesterday, I received in the mail a package of tulip bulbs from an anonymous sender just named "Prayer warrior". I am guessing we will see many purple tulips in the spring. What an analogy to consider when I am impatient for change to take place: one must wait through a season of winter to see the tiny shoots appear in the spring; that will eventually bloom into something beautiful.
Wednesday, September 19, 2007 9:05 PM CDT
23 weeks
Our Internet has been down again. We are finally back on line. I miss being able to read other's entries when I cannot get on. The weeks are passing quickly. The pace has not slowed a bit. I spoke with the grief counselor about how much Francesca is still on my mind. She pointed out that the kids do not know what I am thinking about. My presence at their games is what makes the biggest difference. All the new experiences we are having this fall are bittersweet. I would never be able to be so involved in the kids' activities if Frankie were still alive. So as much as I love seeing them play, it is mixed with a deep sadness I cannot describe. Fall is my favorite season with it's cooler but still sunny days. I consciously make myself go over all the things I am grateful for but my heart has not healed enough to rejoice in them. We are accomplishing more each week but I am very displeased about where I am personally. Still struggling to be some "new and improved" version of myself. Still waiting for optimism and fortitude to return. Until that time I will thank God for the faithful friends who continue to pray us through our difficulties despite their own trials.
"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1
Wednesday, September 12, 2007 3:47 AM CDT
22 weeks
As a mother of a big family, I have always struggled with "how to get it all done." It has become increasingly harder without my usual enthusiasm and drive. I am less resilient and being flexible takes so much effort. Everything takes more effort. Some of the brain fog has lifted only to be replaced by more details of which to keep track.
As the kids and I prayed Tuesday morning, we meditated on the sorrowful mysteries: The Agony in the Garden, The Scouring at the Pillar, The Crowning of Thorns, Carrying the Cross, The Crucifixion. It puts my situation into perspective. Jesus' suffering and Mary's broken heart witnessing it all inspires me to keep moving forward to something better. I pray that God will use this experience for the good; that He will fill this crater inside me where my heart used to be, with something better than before. In my mind I can understand how this process takes so much time but now I just want to be free from the pain of missing her. It is like an undercurrent, always present under my skin. When I am trying to accomplish much, it surfaces, sometimes sabotaging my efforts. I don't want the kids to notice. They are moving on. When I take them to their games and there stands the playground where she played just last year. Other parents pushing their strollers; their child another year older. No more stroller for me.
There is a pumpkin farm in Brimfield where I took the little kids, Frankie, and Nurse Cindy last autumn. They had so much fun looking at the fall displays. It hurts to go past there now. The color of the mums are a little less vibrant this year. The kids deserve to have experiences like that but I'm just not up for it this time. My creativity is gone. I lack initiative. I feel drug along, trying to keep up with all that is going on.
Prayer keeps it all in perspective and gives hope. Just looking at the long list of those that sign in the website. Who could ask for better friends? Each week that passes is time closer to a new work in me and a moment closer to being together with Frankie again.
"Be firm and steadfast! Do not fear or be dismayed, for the Lord, your God, is with you wherever you go."Joshua 1:9
Tuesday, September 4, 2007 10:25 PM CDT
21 weeks
I had to step back from the trials that were bringing me down and be grateful for all the ways we have been blessed: the health of the other children, the choice to home school or send them to school, incredibly supportive family and friends, steady employment, a safe environment in which to live. This weekend, while at my mom's, my uncle shared how he has been praying for us. He is has an incredibly difficult schedule now but manages to stay kind, positive, and loving. His mother-in-law also spoke to me and had a big impact because she has also lost a child. She told me to pray to Frankie as a saint, to advocate for our family. She must have spoke directly in her Daddy's ear because it was the best couple of days we had in awhile. Mark has no idea what an impact he has on the dynamics of the family. The kids ate up the positive attention and the whole house was more harmonious than usual (like old times). It made it feel possible that we could be a real family again and gave us hope of healing. I pray that the positive trend will continue.
Thanks to all who continue to share Frankie stories. It helps me immensely.
"May your unfailing love rest upon us, O Lord, even as we put our hope in you." Psalms 33:22
Friday, August 31, 2007 2:59 PM CDT
Despite the beautiful weather and the return to school, I am slipping back into the deep dark hole unable to shake the feelings of despair. I was unprepared for the effects of her birthday but I have no other explanation for the backslide. The grief has zapped my much-needed energy and I am left with nothing but the prayers of others. It is a miracle that after 5 months people still remember and care to keep in touch. With all this support things have to get better. I am disappointed in myself that I cannot rise to the occasion, totally impatient with how long grieving takes. I wish I could just do it in private and get back to being my old self. I used to be optimistic and able to rise to the most difficult tasks. I have not been able to let go of the vision of what we had and am devastated by the state of our family currently. I have lowered expectations of myself and the kids. It just feels like a free fall since Frankie died. Nothing is as it should be. I enrolled Sophia into St Joes. Another big "let go". It was not working out being teacher and mom. I think she will do fine in school and I will continue to try to figure out what she needs from me as mom. I have 4 in school and 4 at home. Hopefully, schooling will go well for everyone. The teenager issues are also draining. The timing is not the best but such is life. If God is greatest when we are weakest, He should be having a field day! I wish I could just learn what He wants me to and get on with it.
"Reworking what matters inevitably brings times when you feel utterly adrift. The old assumptions no longer work. New structures are not yet in place. You do not know what your life holds. All you know for certain is that your child is gone and, with her, the shape of your future. Each of these parents speak of periods of intense despair in the course of their rebuilding. Each of them at some point considered suicide. Their pain was so great and their way through it was so far from clear that dying seemed easier than living...This experience, of feeling the worst in the midst of efforts to change, we also fear it because change always means stepping into the unknown."
The Worst Loss by Barbara Rosof
Tuesday, August 28, 2007 8:29 PM CDT
20 weeks
This weekend was one filled with emotion and memories. I once again have succumbed to the sadness that was so prevalent in the early weeks following her death. We had such high hopes for this year's birthday festivities but truly anything we could orchestrate here would not compare to the celestial celebration she is having in heaven. It is hard not being part of it. Living life without her is ten times the pain of childbirth, relived repeatedly. I so enjoyed the entries others added, reminding me of things she used to do. She was such a pistol from early on to her last miserable days. She had a sense of humor far beyond her years as her nurses could testify. She loved a good joke and was stubbornly involved in many of them. Just as she called nurse Debbi "Cindy" (another nurse's name) she called my mom Debbie for awhile. She purposefully would not say "Grandma" for weeks. I miss her smile, her infectious giggle, her chubby hands, her soft cheeks, her big brown eyes that danced with mischief, her dark hair that had crazy curls. Almost as much as my heart breaks, my arms ache to hold her again; to rock her late into the night with her soft music on. It's been 5 months but it feels like 5 years since I've held her.
All the reading I've done thus far discusses the ways people change after the death of a child. Maybe it it to soon to tell but the only changes in me so far have been negative. I hate the person I have become: weak despite lessening responsibilities, irritable and angry at times. I lack my optimistic attitude when I could tackle any obstacle ahead of me. I cannot shake the lingering depression at times despite being abundantly blessed by a community of people who have supported us in every way. If our experience is like that of other parents who have lost children, there is still hope.
Judith Bernstein writes "If anything is to be learned from the journeys of these many families, it is a lesson of hope. The lesson teaches that we rebound slowly, over many years and decades. Unlike the river whose course always seeks the lowest level, the human spirit seems consistently to seek a higher plain. We find that meaning and purpose have evolved out of the chaos of our devastation. If I can come to any generalizations, I would say that I saw strength of character emerge. I saw what I can only call a more mature sense of values. We have reordered our priorities and put in perspective what is really important to us in life... Having known pain, we are more attuned to it in others. We have gained confidence from knowing that we have survived hell. Having dwelled in the darkness, we appreciate the light. Living with the sadness that is always background music, the strains of a beautiful melody now sound all the more poignant. We have learned humility, to take what life has to offer and to make of it the very best we can. We know that we can never trust what is ahead but that we have the courage to face whatever it may be."
There is much about our situation that I do not understand. I do know that God is not finished with us yet nor will He leave us alone in this valley.
Friday, August 24, 2007 8:45 PM CDT
I found myself slipping under a rather large current of grief as the weekend approached. Francesca would turn 3 years old on Sunday. I thought I was handling things OK but the waves are coming strong and steady now. I had fond memories of her first birthday. After a long and trying year in the hospital, we decided to celebrate in a big way. She had survived and overcame so many obstacles. We rented a hall, had the food catered, and celebrated the victory of the moment. We were grateful for all those who helped us get through her first year. It was a community celebration!
How much I wanted that for this birthday after all that she went through this winter. But it was not meant to be.
For her birthday, I would love to hear a memory or story that anyone has involving her.
"There is wide variability in the amount of time bereaved parents need before they can resume pleasurable activities. And the kinds of activities are carefully selected. Pleasure is a triple-edged sword. First, having fun evokes a measure of guilt, the feeling that it is unseemly to feel good after your child has died. Secondly, grief is a connection to the deceased child. As you relinquish grief, you also loosen the link with that child. The child becomes a little further from reach. Thirdly, pleasurable occasions trigger longing. The most wonderful occasion is occasion for missing the child who is no longer a part of the family festivity. Happiness is never again without longing. It is never again pure... Seeing other people casually enjoying life is in stark contrast to their internal heaviness. I recall going to a restaurant, hearing music and watching people dancing, feeling as if everyone else was made of feathers and I was made of lead. Other parents told me they feared going to church where the sight of intact families with healthy children aroused such envy and longing." from When the Bough Breaks.
Tuesday, August 21, 2007 10:07 PM CDT
19 weeks
The grief bombs come less often but still come. Today, Mario had found Francesa's little kitchen she had gotten for Christmas. He was playing TV chef and cooking up a concoction for us. We would serve the play food on the animal paper plates. I remembered the last time the kids sat with Francesca eating pretend food. She loved doing anything with them.
I sat in church on Sunday wishing for some signs of normalcy. Still grappling for what that is supposed to look like, not liking what I currently see. The readings and the songs seemed to meet me where I am. When will things level out? At least we are not in life or death crisis everyday but it does feel like crisis often. So many decisions to make, I never know what the right thing is. I hold out hope that God will restore our family somehow.
Stand By Me
When the storms of life are raging, Lord stand by me
When the current pulls me under, Lord stand by me
When the rising waters toss me like a ship upon the sea
You who rule the wind and water, Lord stand by me
Refrain
Stand by me, stand by me
Lift me up from the restless sea
When I am lost, when love can't be found
When no one cares, Lord, stand by me
In the midst of persecution, Lord stand by me
When my enemies surround me, Lord stand by me
When thy tyrant wields his terror and the armies wage their might,
When the darkness overwhelms me Lord, stand by me
Tuesday, August 21, 2007 10:07 PM CDT
19 weeks
The grief bombs come less often but still come. Today, Mario had found Francesa's little kitchen she had gotten for Christmas. He was playing TV chef and cooking up a concoction for us. We would serve the play food on the animal paper plates. I remembered the last time the kids sat with Francesca eating pretend food. She loved doing anything with them.
I sat in church on Sunday wishing for some signs of normalcy. Still grappling for what that is supposed to look like, not liking what I currently see. The readings and the songs seemed to meet me where I am. When will things level out? At least we are not in life or death crisis everyday but it does feel like crisis often. So many decisions to make, I never know what the right thing is. I hold out hope that God will restore our family somehow.
Stand By Me
When the storms of life are raging, Lord stand by me
When the current pulls me under, Lord stand by me
When the rising waters toss me like a ship upon the sea
You who rule the wind and water, Lord stand by me
Refrain
Stand by me, stand by me
Lift me up from the restless sea
When I am lost, when love can't be found
When no one cares, Lord, stand by me
In the midst of persecution, Lord stand by me
When my enemies surround me, Lord stand by me
When thy tyrant wields his terror and the armies wage their might,
When the darkness overwhelms me Lord, stand by me
Sunday, August 19, 2007 7:43 AM CDT
Praise You in This Storm
words by Mark Hall/music by Mark Hall and Bernie Herms
Casting Crowns
I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.
Chorus:
And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm
I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away
Chorus
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
Chorus
Saturday, August 18, 2007 10:57 AM CDT
Citizens, lend me your ears!
After a long summer hiatus, I have returned!
All right, all right, calm down. I shall be signing autographs later. Mom wanted me to write again, so how could I resist!
O.k., seriously now, I have finished my calculations and examinations on teenage boys and I can sum it all up in one sentence, weird, and completely from a different planet, Mars perhaps.
Well, now what should I talk about? Hmmm lets see, I talked about teenagers and I did my whole queen of Rome gig so now what? For those of you who are saying 'Well what's going on at home?' I have to be honest with you, not much.
You might think that from my mother's very from the depths of her heart writing that we are going on a emotional rollercoaster, but I honestly don't see it.
Sure the occasional outbursts from the teenagers are severely annoying but I'm not all that troubled by them. But seeing as she's the mother, I can see how that would be a lot more troublesome.
Sure, maybe the other kids are on that emotional ride that Mom often talks about, but I don't think I am. If they do they don't talk to me about it (And I can't exactly blame them!).
Well that's all I have to talk about, so Gina Frisone, signing off!
Tuesday, August 14, 2007 9:07 PM CDT
18 weeks
Sometimes life feels about as calm as the movie Perfect
Storm. Life with 3 teenage boys on the heels of this tragegy is nothing less tumultuous as waves converging at the same time. Our little "boat of life" is getting tossed pretty radically. Everyone remains pretty needy. I sometimes feel helpless in rescuing all. The greatest difference is that we have not gone under. With continued prayers, there is still hope of recovering.
"I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always. Christ will be exalted in my body, whether by life or by death."
Phillipians 1:20
Friday, August 10, 2007 2:42 PM CDT
While in Michigan a nurse lent me the movie "Something the Lord Made". It was originally made for HBO, highlighting the process of how the BT shunt came to be and the advent of open heart surgery. (Francesca had two such shunts placed in two separate surgeries). It is a fascinating story involving the perseverance of a female cardiologist (Helen Taussig), a male surgeon (Alfred Blalock), and his male, black assistant(Vivien Thomas). All had to overcome extreme hardship and criticism to accomplish what they did. I recently read another book about Dr. Taussig specifically, called "To Heal the Heart of a Child: Helen Taussig M.D. by Joyce Baldwin." She overcame dyslexia and gender discrimination to get through medical school. Not many women went to medical school in the 1930s much less specialize in cardiology. It was by her thorough study of children's' malformed hearts and much cajoling on her part to get Dr. Blalock to consider a repair that could correct many different defects. Children all over the country and the world soon came for treatment. She was a fascinating person and dedicated her life to helping others. She was key in spreading the word about the side effects of thalidomide. She soon began to lose her hearing and could not detect the murmurs through her stethoscope so she taught herself to detect the vibrations through touch. She could often detect a murmur better that someone who could hear perfectly. The story of her life was inspiring and a testament to what one can do with his God-given gifts.
I continue to find comfort in the book "When the Bough Breaks". The author discusses how children are effected by the loss of a sibling but in the case of a child with special needs, there are greater implications. Even though I was doing the best I could to take care of everyone, there were needs that went unmet. Even though I am home and focusing on those things now, there are many ramifications that are difficult to face. I pray that God will continue to heal our family from the pain of losing Francesca and fill the gaps of my shortcomings.
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”
Eleanor Roosevelt
Tuesday, August 7, 2007 9:48 PM CDT
17 weeks
The "grief bombs" still come but I am getting stronger. I went by Mike's Place the other day. It is the restaurant where we had our last meal as a family the day we left for Michigan for her surgery in January. Mark's brother joined us with his two little girls. Frankie loved to play with them. She was sooooo happy and well. I have a picture of her sitting in a huge throne with her two cousins in the back room of the restaurant. She chatted away as everyone ate. No one knew what to expect. We then departed on our separate ways. My mom took the kids to Columbus to stay with my brother. Mark, Frankie, and I left for Ann Arbor. Little did I know that I would not see the little kids again for 5 weeks or that she would never be that happy again.
Today I was driving in the pouring rain. I had a flashback of our many nail biting drives in the winter weather up to Cleveland Clinic. I wondered if I just looked into the back seat, if she would be there in her car seat, connected to her oxygen tank, looking back with those big brown eyes. What would I give just to have her there, even for a minute. It was not meant to be.
I spend enormous amounts of time reflecting on everything from decisions I've made, the state of life I am in, motherhood of a large family, etc. Motherhood at 41 is an interesting place to be. I am old enough to have some history to analyze but with my youngest being 4, have a many years in which to improve. I know there are many lessons that God still is teaching me. The more I read, the more I realize there is so much to learn; not just about grieving but about living.
In the words of Ronald Knapp from Beyond Endurance:
"Those parents who have managed to recover some meaning tend to develop a sense of omnipotence and invulnerability relative to life's other hardships. They come to feel that there are simply no obstacles that they cannot overcome. They believe that they have met the ultimate challenge to their own survival and they have conquered it. In the process of rebuilding, it tends to become obvious that the survivor has indeed encountered the ultimate tragedy and has survived."
Thank you for your prayers as we continue to adapt to our loss and be open to a future different than we planned.
"Because my heart was embittered and my soul was pierced, I was stupid and understood not; I was like a brute beast in your presence. Yet with you I shall always be; you have hold of my right hand; With your counsel you guide me, and in the end you will receive me in glory." Psalm 73:21-24
Friday, August 3, 2007 6:18 AM CDT
The visit to Cleveland did bring some closure for me. It also gave me a reason to go. I find I am a slave to our schedule instead of master of it. I have a deep connection with those that worked with Francesca and if it were not for the distance I would find a way to volunteer at the Clinic. As I begin to sort things out, I pray that I will know in what way I can be used to help other families. There is no way to accurately describe what it is like to go through an experience when your child is so sick especially when the time spans a period of years.
The books I have been reading are very helpful. When the authors describe what other parents endure, I don't feel like I am going crazy. I underestimated the time and effort it takes to grieve such a loss and had no idea how to do it well. In "When the Bough Breaks" Judith Bernstein describes so accurately the anguish parents feel. Additionally, she illustrates the work that has to be done. "The emotional journey people take to regain equilibrium, to be able to once again to feel good and value life, to reform themselves so that their loss is somehow integrated into the fiber of their existence - that is the process of mourning...People don't recover; they adapt. They alter their values, attitudes, perceptions, relationships, and beliefs, with the result that they are substantially different from the people they once were. Mourning, integration, adaptation. These are learning processes. Rape victims need to learn to live in a world in which rapists exist. They need to learn how to live with vulnerability, relearn how to trust, and so on and so on. The bereaved parent has to come to terms with a world in which it is possible for children to die, a world of different hopes and dreams, a world of muted sunsets. The victim never sees life through the same lens again." She goes on to describe the process of grieving and mourning so accurately. It gave some structure to what I am experiencing instead of this tidal wave of emotion and foggy confusion. "Grief can only be described as a time of craziness when all the rules that govern life are suspended, when coping mechanisms that used to work no longer do, when the foundation and rhythm of your days are shattered into an unrecognizable crazy-quilt. No one gets an instruction booklet about how to deal emotionally with the death of any loved one, let alone the death of one's child; it's too unthinkable."
Every prayer, card, website entry, and book I read is a support to get me through another part of this journey to better days, to greater strength, to a new "normal". Thanks for being there for me and my family.
(Job asked,)"...Should we accept only good things from the hand of God and never anything bad?" So in all this, Job said nothing wrong." Job 2:10
Wednesday, August 1, 2007 6:00 AM CDT
16 weeks
Monday afternoon I went up to Cleveland Clinic for the first time since Francesca passed away. My body swirled with emotions as I was flooded with memories from the time of her tumultuous birth to the last day Maria and drove in the snow slicked streets early Easter weekend when she was very ill. My mind played back flashes of so many different experiences. We spent so much time there. My in-laws graciously drove me up but as we stood in the cafeteria I nearly had a panic attack as a wave of hundreds of thoughts hit me all at once. How many cups of coffee I drank, taking the kids to Subway, the time Dominic chocked on his sandwich and I had to do the Heimlich right in the cafeteria, the last time Frankie ate vanilla ice cream at McDonald's, how she would pick at my Chili Lime Salad from the Mexican restaurant. I had no stroller, no wagon with my baby. That was the biggest "grief bomb" in awhile. We made it back to the 4th floor where our meeting would be. I went to the ICU and visited a few folks. Such kind people. Again brought back memories as early as when she was born. Withing hours of her birth on the 6th floor, she was in the OR on the 4th floor. The ICU is adjacent to the OR where she spent several of her first weeks and several admissions after that. Her tiny body attached to the ventilator and about 12 syringe pumps with various medicines. It is a terrifying sight. Many, many hours wringing hands in worry, heads bowed in prayer over her bed, sleeping on a window sill so I could be close by.
I saw the room where she spent her last 6 weeks. It was occupied by another baby. I pictured Frankie sitting up with her pig tails watching Barney but it was not to be. I had a good cry with one of the nurse practitioners who had known Frankie. I then made my way to the meeting to discuss Francesca's autopsy results with her cardiologist, Dr. Arruda. Dr. Mumtaz (surgeon) and Dr. Weiss (intensivist) was also there.
She explained that a clot had formed in the superior vena cava, the large vein that brings blood back to the heart from the upper part of the body. It did not totally occlude the vessel but a part may have broken off and lodged in the upper lobe of her R lung. When a clot blocks blood flow to an area the surrounding tissue dies and bacteria can grow. They did culture bacteria from that area post mortem that was not present in her blood stream the day before she died. They were also able to see that her pulmonary veins (the veins that bring blood from the lungs to the left side of the heart) were either blocked off or very narrowed also indicating progression of her disease. There was evidence throughout her lungs of pulmonary hypertension as a result of the narrowing that was not present in January when she had surgery. At this point in time there is no cure for the progressive narrowing of the pulmonary veins. That is why the diagnosis of TAPVR is usually fatal. We were lucky to have as much time as we did with her. I am grateful to have been in the care of such loving professionals. Dr. Arruda not only came to the funeral, she dried 3 roses that Maria had given her then and framed them to present to me Monday. Dr. Mumtaz asked for a button with Frankie's picture. It was a very good meeting but exhausting.
Mom watched the kids while I was in Cleveland and my sister was up visiting so we all spent the night together. It was good just to hang out. The kids had fun playing. This was another important step in the grieving process.
"You chart the path ahead of me... Every moment you know where I am." Psalm 139:3
Saturday, July 28, 2007 1:22 PM CDT
I spoke with a grief counselor yesterday about my difficulties in processing my grief; my desire to think more clearly and be more present to my children. She said many things that were helpful. She said that the "grief bombs" will still continue to come for quite awhile. What a great description. As I am going through my day then "bam" the washcloth, a photo, a Barney toy, child's sunglasses: some obscure reminder that we are not together. The pain washes over me again. Yesterday it was driving by a place where we used to serve lunch with Sr. Jordan. The thoughts of our time together there made me miss her all the more; knowing she would know how to help, just what to say.
When I asked what was reasonable to expect of myself, she said just getting up in the morning. Everything after that is an accomplishment. I was going about it the wrong way. I would look at my "to do" list and see what I did not accomplish and become frustrated. She also said 90% of my energy goes to grieving. I have 10% left to do what I need to do. If that is true no wonder I am not doing well. My brain is still trying to make sense of this situation and as much as I don't like it, it will just take more time.
Every now and then I feel pangs of passion returning. The same feeling that made me get up and speak at Francesca's funeral. I know one day that passion to make something good come out of this will lead to something big. For now, thanks to all who have been a light to get me through this tunnel.
Another great song by Third Day.
"Tunnel"
I won't pretend to know what you're thinking
I can't begin to know what you're going through
I won't deny the pain that you're feeling
But I'm gonna try and give a little hope to you
Just remember what I've told you
There's so much you're living for
There's a light at the end of this tunnel
There's a light at the end of this tunnel
For you, for you
There's a light at the end of this tunnel
Shinin' bright at the end of this tunnel
For you, for you
So keep holdin' on
You've got your disappointments and sorrows
You ought to share the weight of that load with me
Then you will find that the light of tomorrow
Brings a new life for your eyes to see
So remember what I've told you
There's so much you're living for
Thursday, July 26, 2007 5:13 PM CDT
I find myself attempting some projects that have been eating at me for awhile. Mark got me an ipod for Christmas and I filled it with great contemporary Christian music and also some classical. When Frankie was in the hospital she could listen to some Bach to help her relax!
Today I was determined to work down the basement and get all the laundry done completely. I was working on tidying things in between throwing loads in. The music on the ipod was keeping me motivated as I was tackling things. I found a washcloth of Frankies and had a complete breakdown. I was flooded with memories. It is like a hot searing pain reopening a fresh wound. I miss her so much. I do not know how to proceed. It is a clumsy process. I want to be functional but get tripped up as I try to go through my day. One of the songs I was listening to was a great reminder of how God will renew all situations. It's even better if you can hear the song.
Steven Curtis Chapman - "All Things New" Lyrics
1. All Things New
You spoke and made the sunrise, to light up the very first day
You breathed across the water, and started the very first wave
It was You
You intoduced Your glory, to every living creature on earth
And they started singing, the first song to ever be heard
They sang for You
You make all things new
You make all things new
Then the world was broken, fallen and battered and scarred
You took the hopeless, the life, wasted, ruined and marred
And made it new
You make all things new
You make all things new
You redeem and You transform
You renew and You restore
You make all things new
You make all things new
And forever we will watch and worship You
You turn winter into spring
You take every living thing
And You breathe Your breath of life into it over and over again
You made the sunrise, day after day after day
But there's a morning coming, when old things will all pass away
And everyone will see
You make all things new
You make all things new
Come redeem and come transform
Come renew and come restore
You make all things new
You make all things new
And forever we will watch and worship You
Now and forever You are making all things new
You're making all things new
Hallelujah...
Tuesday, July 24, 2007 5:56 AM CDT
15 weeks
Sometimes it seems life is just as hard as when Francesca was alive, just emptier without her. There was something about her magnetic personality. we brought out the best in each other. Although tired all the time, I could do anything when she was around. Now I feel like a car just keeps running me over. Every time I get up, it backs over me again until I just want to lay there and not get up. The family dynamics are complicated and messy. Maria awoke from a dream yesterday where Frankie was calling her name, "Mia, Mia!" She dreamt Frankie got to come home from the hospital and she was well enough to play together. Just like old times. Maria was subdued all day. She misses her so much. The older boys are still calloused. Dom was once so sweet, now acts like a teenager himself. I miss old times, too. Not sure what a new normal is supposed to look like.
One of Francesca's nurses, Deb, gave me a devotional book by the same author of 90 minutes in Heaven. Don Piper writes "For me, the saddest word in the English language is hopeless. It means we give up; we stop trying, we can't or won't put the effort into fighting. I also believe that hopeless isn't part of God's vocabulary.
Yet hopelessness seems to abound at certain times. After great tragedies such as hurricanes, tsunamis, or the killing of soldiers in war, the level of hope declines. But it is during times of hardship and suffering that we need hope the most, for when we have an "all-is-lost" attitude we truly are lost.
This truth is vividly illustrated in the classic book Man's Search for Meaning by Viktor Frankl. After World War II, Frankl wrote of his experiences in a Nazi concentration camp. One of the things that struck me when I read the book twenty years ago was that between Christmas of 1944 and New Year's Day (the last year of World War II), more prisoners died that at any previous time, Frankl said it wasn't because they worked harder or that their food supplies had been cut, or even because of diseases in the camps. The problem was that all of them heard rumors and knew the end of the war was near. They lived with the expectation that they would be liberated before Christmas. AS the days passed and they received no encouraging news that the Allied Forces would be there soon, many prisoners became discouraged. They lost hope. As each many lost hope, he stopped fighting to live, and within days, he died. When one prisoner lost hope, that was bad enough, but one man's dejection infected another and soon that negative, hopeless attitude spread like an epidemic.
What Frankl realized, and what we need to see today, is that we can't stop tragedy from striking , and we can't just tell people, "Stop that! Think positive! Stop whining!" What we have to do is help them find a reason to live, or to focus on a future goal of some kind.
The psalmist expressed this same idea:"For you have been my hope, O Sovereign Lord, my confidence since my youth. From birth I have relied on you..." (Psalm 71:5-6)
Hope. A reason to live. The French term raison d'etre means a reason for existing or a justification for living. That's the secret. As long as we have a reason, we can take the next step. And the next. And the next.
God of all hope, forgive me when I become discouraged or want to give up. Deliver me from self-pity and renew my hope. Enable me to see that I can not only make it through the troubles of today, but you give me hope and comfort to make it each day. Amen."
Monday, July 23, 2007 3:37 AM CDT
I am beginning to feel like the darkness/heaviness is lifting just a little. I still cry everyday and the family is not doing as well as I would like. We did make it through dinner with company without major catastrophe. It was work to pull it off but our guests were well worth it. We had great conversations and deepened our friendship. For me connection with people is what it is all about. Not much else matters.
Maria and I cry everytime this song by Mark Harris comes on the radio. I picture Francesca happy in heaven. The yearning to be with her is stronger than any emotion I have ever felt, but apparently my work is here for now. Thank you for your continued prayers.
WISH YOU WERE HERE
I wanted to tell you how closely I've kept
The memories of you in my heart
And all of the lifetimes that we had to share
Live even though we're apart
But don't cry for me
'Cause I'm finally free
(Chorus)
To run with the angels
On streets made of gold
To listen to stories of saints new and old
To worship our Maker
That's where I'll be
When you finally find me
No don't you be weary cause waiting for you
Are wonders that you've never known
Just hold on to Jesus, reach out for his hands
And one day They'll welcome you home
And that's when you'll be
Finally free
Finally free
(Chorus)
I wish you were here, I wish you were here
And all of the dreams that you treasure
Will soon come together
And that's when your sorrow will find tomorrow
And you will rise again
(Chorus)
We'll run with the angels on streets made of gold
We'll listen to stories of saints new and old
We'll worship our maker that's where we'll be
When you finally find me
I wish you were here
Wednesday, July 18, 2007 8:48 AM CDT
As a result of others prayers the momentum is shifting. More is getting done at home in anticipation of having some company. I feel up to the challenge. The boys invited some teachers over for dinner. We will see how it goes. Mark has been out of town all week. He should return home today, also.
"Don't worry, because I am with you. Don't be afraid, because I am you God I will make you strong and will help you; I will support you with my right hand that saves you... I am the Lord you God, who holds your right hand, and I tell you, "Don't be afraid. I will help you." Isaiah 41:10,13
Tuesday, July 17, 2007 6:02 AM CDT
14 weeks
I get mad at myself because I cannot shed this lead blanket that accompanies me everyday. I have been through adversity before but am having such a difficult time staying positive. I am not good company sometimes. Others feel sad when they see that I am not happy. People have been kind and talk to me anyway. I am so fortunate that so many people care. In the little bits of time that I have been able to read there are other parents who have fog for a brain, are afraid to be in public in case they are prone to cry unexpectedly. At times I am my own worst enemy. I have always had high expectations for myself. Now I feel intense urgency to improve for the sake of the kids but have difficulty making simple decisions about where to take them when I have the opportunity. I get anxious about the plans I had to get the house in order before school started. I have trouble being spontaneous or flexible, to accommodate the older boys desire to do things all the time. I have spent so much time running the older boys around, it leaves less time to focus on the younger children. For someone who could get up early everyday and hit the ground running with plans for a full day, I feel I accomplish less now.
In the book The Worst Loss, Barbara Rosof talks about the inability to function. "When you cannot function at the level you usually expect of yourself, it hurts. It is easy to fall into scolding yourself, feeling inadequate. The fact is that for now you are inadequate. You may need to remind yourself, that if you'd suffered a physical injury as severe as your emotional wound, you'd be in the ICU. You wouldn't expect a person in intensive care to be fully herself or particularly available to the rest of her family. You expect an ICU patient to accept her limitations, not push herself, give her body a chance to heal. Your injury is severe and pervasive. You need to lower your expectations of yourself. You must give your heart time and opportunity to heal." This helped me in some ways because it does adequately describe how I feel. I have given it some time. I don't expect to be completely done grieving, I just need to be more functional. Just like when Frankie was ill. It did not matter if I were exhausted; if her regime was difficult. That drive deep inside as a mother pushes you beyond the normal limitations. I feel that desire for my other children but the drive has been disabled. So they get the shaft again. Stuck with a mom who can't get it together. I pray the God will fill in the gaps until I can be myself again. That they will one day forgive my limitations.
"I know that you can do all things, and that no purpose of yours can be hindered." Job 42:2
I believe that God will restore our family one day. I know we will get out of this valley eventually. I pray for the patience to let this unfold and that we do what God wills for us.
Thursday, July 12, 2007 4:57 AM CDT
Today marks one year since Sr. Jordan passed away. Boy do I miss her dearly. When we would go visit, it was the next best thing to sitting at the feet of Jesus. She was so wise and so smart. She was feisty but loving. She adored the children almost as much as me. She could not wait to hear the next hilarious story of calamity. She would laugh about the PB and J in the VCR or Angelo unleashing the fire extinguishers on my clean laundry when he was in kindergarten. She wanted to hear the poetry the girls were memorizing or what new vocabulary the boys had mastered. She inspired without lecturing. I could never figure out why someone so accomplished was so taken with our family. She was a mother's best advocate. She was on the boys' case if she heard any hint of disrespect in their tone of voice. We all walked away being more appreciative of each other after visiting with her. When I felt like a failure as a mother, she would tell me all the things I was doing right. She was the best support when Francesca was diagnosed. She had a way of viewing things that recognized the difficulty of the situation but in a positive light. She was not one to sugar-coat things but could help me out of the hardest dilemas. Even Mark deeply respected her. He's hard to impress. She would call to remind him what a wonderful wife he had. That I could live off a compliment from him for 6 months, so he better do it once in awhile! I'll just have to tap into her reserve today. When I think about all that have joined her in heaven the last year, I feel like I'm missing the party. I am grateful that Sr. Jordan, Mr. Missimi, and Francesca's suffering has been relieved. I can picture Frankie as part of the welcoming committee. A friend's daughter miscarried recently. It comforted me to know that Frankie will especially watch over the babies. She could not help herself around babies. That is one of the hardest parts about being in church is all the little ones whom she loved to visit. She would jump off my lap in the "cry room" and say, "Go see Baby Sophia" or whomever happened to be in there. She would talk about their dolls, books, and tippy cups. She would see what they were wearing and what color shoes they had on. She talked for weeks about the time she fed Baby Connor his bottle. He even came to she her in the hospital. She put her arm around him even though she did not feel well. She loved him so much.
I miss you Frankie and Sr. Jordan. Help me to be patient until we can be together again. Jordan lend me your wisdom since you have all the answers now.
"My child, if you accept my words and treasure up my commandments within you, making your ear attentive to wisdom and inclining your heart to understanding; if you indeed cry out for insight, and raise your voice for understanding; if you seek it like silver, and search for it as for hidden treasures - then you will understand the fear of the Lord and find the knowledge of God. For the Lord gives wisdom; from his mouth come knowledge and understanding; he stores up sound wisdom for the upright; he is a shield to those who walk blamelessly, guarding the paths of justice and preserving the way of his faithful ones. Then you will understand righteousness and justice and equity, every good path for wisdom will come into you heart, and knowledge will be pleasant to your soul. Proverbs 2:1-10
Monday, July 9, 2007 2:50 AM CDT
We took a last minute trip to Washington D.C., an attempt at a vacation before football season starts. Guiseppe's birthday is the 4th of July. We saw fireworks at the Washington Monument with a half a million other travelers. Even in the majesty of monuments, the beauty of the art work, the glory of the grand architecture, I cannot shake this depression that grips me like a straight jacket. I stood in awe at the richness and depth that the city had to offer but it was no match for the heaviness in my heart. I remember being stuck in the hospital for so long, dreaming of such a day when we can do "normal" things together as a family. There is nothing normal and we barely feel like a family anymore. Things that should come natural now take monumental effort. I am a broken shell of the person I used to be, trapped in a spiral of negativity, weighted by a noose of grief, desperate to break free and be highly functional again. The children need me to be at the top of my game, the urgency of the situation blares at me daily. As we stood at the feet of those great men in D.C., I was inspired by their courage and perseverance. They had to endure much hardship and personal trials during their lifetime but achieved great things. I may settle for a clean house and happy children (not in that order)!
In the end of Patsy Clairmont's book she writes:"The valley isn't easy or fair. Justice comes later, after Christ's return. We shouldn't expect ease and fairness to permeate our existence until we hear the trump of God at Christ's return.
I'm grateful that every once in a while we're invited to a mountaintop experience that floods us anew with a chorus of hope so we can maintain a wider perspective. Of course, we need to be aware that even the trek to the top of a peak holds treachery. I don't know of any climbers who reach the pinnacle without paying a price. Bumps, bruises, cuts, broken bones, frostbite, sunburn, sprains. Yet somehow, once atop the mountain, the price seems to fade in light of the view's splendor."
Your prayers and notes of support are a lifeline out of this quagmire. Thank you.
Tuesday, June 26, 2007 5:31 AM CDT
11 weeks
Sometimes I imagine Francesca's face before me but her image zooms away from my outstretched arms like a surreal dream. I am frantically chasing her but can never hold her again. I panic as if I will forget things about her as more time elapses since she was here. That is also another reason I will never tire of hearing stories or memories from others who knew or worked with her.
It has been 11 weeks since she died. The same amount of time that she spent in the hospital this last time. We went to the University of Michigan for surgery on Jan 16th thinking we would be there for 2 weeks and she would be fixed. Five weeks later, we were flying by helicopter to Cleveland Clinic for another six weeks. She never recovered to the happy girl she once was. She was miserable. In order to survive all the ups and downs I did not let myself think what life would be like without her. I am not sure what I would have done different. I cherished her with my whole heart and soul but I was not prepared for her to be gone.
In Patsy Clairmont's book "Dry Bones" she talks about being a candle-bearer for others; light holders as we partner with Christ to bring illumination to those around us, that we might offer them the hope He has given us. His word becomes our headlamp, showing us the next step to take and reminding us that we aren't alone, even in the valley of the shadow of death... Imagine what a difference one small candle makes in a dark room. Imagine what impact we can make while living in this dark world.
Thank you for bringing light to me in this time of darkness. Through your prayers, notes of encouragement, kind words at work, church, or even at Dominic's baseball games I know I am not alone in the valley.
"Your word is a lamp unto my feet and a light to my path." Psalm 119:105
Monday, June 25, 2007 4:55 AM CDT
I had the privilege of attending the Women of Faith conference in Cleveland on Friday and Saturday. My dear friend, Debbie Tatro, planned the trip to the last detail. She invited my mom and her mother, Judy Krieger, another loving person that has served our family faithfully throughout Francesca's illness. Women of Faith is a group of dynamic, accomplished women who share how God has worked in their lives despite tragedy. I was amazed that they could find humor in their circumstances and are they funny! I have not laughed like that in a long time. Many of the women are older, seasoned by life, and could speak from a wealth of experience. It will take weeks to process all that was said. They all wrote books, too. I look forward to sharing all that I learn with you. All the resources from the conference can be found on the Women of Faith website.
I was looking forward to the conference all week. As Friday came, I could not stop crying. Everything reminded me of Frankie. I packed my bag for Cleveland but this time it was not to go to the Clinic. I was going for a different reason. The fact that I have not gone before was because I could not leave her. Everything I do now: exercise, travel, have a cleaner house, am diaper-free, are all reminders that she is not here.
The speakers talked of broken dreams; of life not turning out the way we planned but also of God's grace, His love, and His dreams that are so much bigger than mine. I came away with new insights and renewed hope that things will get better. I have struggled with how to return to the joy that once in my life. Patsy Clairmont is probably my favorite speaker. She is so funny and insightful. Her latest book, "Dancing Bones" refers to the passage in Ezekiel about dry bones. Even if it looks like a hopeless, lifeless situation to me, God can breathe life into it.
"Hope is a buoy to help keep our heads above the waterline of reality. Yet, when we depend on it to be our protection against difficulties, we deflate hope, and it becomes a weighted sinker that drags down our faith. Hope does not announce that life is safe, therefore, we will be; instead, it whispers that Christ is our safety in the midst of harsh reality." from Dancing Bones.
Wednesday, June 20, 2007 5:23 AM CDT
10 weeks
The pain of grieving the death of a child is a long haul, work for a lifetime. After the initial fog dissipated, the real pain sets in. How does one go on when severed from something in which one is integrally connected? Francesca's tenuous condition demanded special attention. In addition to running a household for a large family, I had to build in ways to keep her meds and feedings on time. I learned the subtle clues, specific only to her, when I knew to get help. Even in the hospital, and we were at some excellent centers, there is no one staff member that stayed with her 24/7. It was my duty to share information specific to her idiosyncrasies with the ever changing players. That kind of intensity, that attention to detail was not part of my nature. I was nonchalant in my approach to many things but the well being of a child is good motivation to change.
The intensity of her care made it so few people could step in as my substitute. The responsibility grew more burdensome because she had little margin for error. When she got to the point of sleeping little, the possibility of making a mistake grew with my lack of sleep. That created more anxiety that aggravated the situation.
That was one of the things that have made her loss more difficult to accept. Another is that although she had not been well since January, I do not think any one expected her to die as she did. Her original diagnosis was very poor. What she had been through was excruciating but there was something about her feisty spirit that convinced others that she was better than she actually was. There was something about her magnetic personality that drew you in body and soul. It was nearly impossible to hold anything back from her. It is hard to describe but those who cared for her know what I mean. That is why the loss is more devastating because part of our hearts went with her. There is a deafening silence, a gaping hole in this world without her. How could a two year old have such an impact?
Sometimes I wish for some kind of sign from her. In my mind I know that heaven is the best place for her but I long for something to soothe the pain in my heart. What I do have is the connection with those who knew her, cared for her, and loved her as I did. Hearing from you and the impact she had on your lives somehow makes me feel connected to her again. I am so fortunate to have so many caring people to carry this burden with me; to pray for our broken family; to relive memories of Francesca. Others have been crushed by the astronomical cost of medical care in addition to losing a child. We have been spared. Many have lost more than one child or multiple family members. We live in a home that is safe and secure with everything we need. I am grateful for these things and your continued support.
Rejoice in hope. Endure in affliction. Persevere in prayer. Romans 12:12
Tuesday, June 12, 2007 5:33 AM CDT
9 weeks
The pain is still raw. A single object can send a flood of memories transporting me to another time when she was still here. It can be at home, while we are out, without notice. The memories are triggered without warning. I stand there in pool of mental images that evaporates and she disappears like a mirage in the desert. I am left with that deep sadness that I cannot hide from others. My family notices the most. My husband is frustrated that he cannot make me feel better. It makes them feel heavy when they otherwise would not. When I see her picture it is if she is behind plate glass. I can see her but not touch her. I grieve all over again. One day I hope the memories will make me smile. Right now, it is all too painful.
There is still a tremendous amount of work to do in the house and with the kids. They are all grieving differently. It has effected their personalities and ability to cope with everyday things. There is not the sense of working together that we once had. It is quite the opposite. I feel like a woman who owned a beautiful pearl necklace and wore it proudly around my neck. Someone cut the string that held them all together and I have been running wildly trying to gather up the precious pearls as they bounce in different directions.
I know that the pain will lesson one day. The kids will learn to cope. We are comforted by many who still care and pray. Many people tell me they do not know what to say. Just conveying concern brings me relief. One does not have to be eloquent, articulate, or profound.
We were in the hospital so long this winter, I did not get all the kids well checks done. My wonderful pediatrician, Dr. Susan Vargo, saw 4 of them yesterday in one visit. She has been so amazing during this whole ordeal. If we needed anything with Frankie, the entire office was very accommodating. Dr. Vargo acted like she had all day. She wanted to know how everyone was doing. She could not be kinder. Before we left she told me that when she was in 7th grade, her sister died of a congenital heart defect at 4 years old. There were 7 children in the family. I have not stopped thinking about that. They survived. Dr. Vargo went on to become an extraordinary physician. She was about Gina's age. Gina wants to be a doctor. Could we get to the point of being functional again? Could she realize such a dream? Could some good come out of this devastating experience? It did for Don Piper who wrote 90 Minutes in Heaven. Maybe it will for us, too.
Please pray for Gabriel Johnston, a little boy we met at Cleveland Clinic back when Frankie was born. He is having open heart surgery today in Boston. He, like Frankie, is having a biventricular repair, a very complicated surgery that will leave him with two ventricles instead of one. Although there can be more risks involved, the long-term outcomes are supposed to be better. Deb and Rick are separated from their other 4 children while Gabe is in the hospital. You can track his progress at his site caringbridge.org/ny/gabrieldavid.
Thank you for your continued support.
Tuesday, June 5, 2007 10:23 AM CDT
Today is 8 weeks since Francesca's death. I was helping Dominic with his verse for this week.
"In my father's house are many rooms; if it were not so, I would have told you I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." John 14:2-3
Thursday, May 31, 2007 5:06 AM CDT
My spirits have been lifted somewhat in the last few days. I am sure it is from all of your prayers. I am so fortunate to have so many people who care enough to follow along with what is going on with our family, often it is not pretty! I am so touched when folks take the time to write.
Although I am reassured of the joy Francesca is experiencing in heaven, I have to fill the gap of time from now until I can share that with her. One of the realizations that I gained from reading 90 Minutes in Heaven was that my life has a purpose. There will be people I can help here on earth as a result of what I have been through. If I can learn to kick and scratch and claw through another day without my baby that may inspire another to do the same. One look in the eyes of a mother who has been there and few words may be necessary.
Deb Johnston did that for me. I met the Johnston family at the Cleveland Clinic when Francesca was born 8/26/04. Gabriel had already had surgery before we got there and although we stayed for 3 weeks, he remained long after we left. Gabriel is the youngest of 5 children and traveled from the Buffalo area to have open heart surgery by Dr. Roger Mee. What was supposed to be a one week admission turned out to be a NINE week admission! He did finally go home and recovered. When I would be feeling badly I would go to caringbridge.org/ny/gabrieldavid and look at his sweet face and he would always cheer me up. As Francesca's last admission dragged on and on I thought of Gabriel's mom, Deb, EVERY DAY. I knew if they got through it, we could. We have prayed for each other many times in the last few years, being kindred spirits in the fight for our children's lives. I ask you all to join in prayer as Gabriel is about to have his third open heart surgery; this time in Boston. It is an indescribable burden that a parent carries. Trying to make life threatening decisions for a child whose condition is so rare there are not many children for which to compare. Even if the heart defect is more common, there is no guarantee that things will go smoothly. There is always risk of complications. When we were in Michigan I would check the guestbook. Just seeing Deb's name alone gave me great comfort. Just hearing from someone who has been there is reassuring. That does not mean one has to have a chronically ill child to understand or support another. The support from our community kept us afloat for all these months. I know to have hope that things will get better gives me the endurance to get to tomorrow. I need to be about the business of healing, putting the pieces of this family together, and seeing what else God has in mind until the time He has appointed for me be rejoined with my daughter again.
Monday, May 28, 2007 1:24 PM CDT
It was good for me to retype the words from Frankie's funeral because I ought to take my own advice. I was so moved by all I learned from her. So many lessons that God was teaching me came to fruition at the week of her death, I was so motivated to share. Few things motivate me now. So much has changed in the six weeks since her death. There is no denying the fact that she is gone. Even normal things take monumental effort and my heart is not in it.
It is like when Tom Hanks tried to get off the island in "Cast Away" the tidal wave just crashed on his feeble raft, scraped him on the coral reef, and left him bleeding and discouraged on the beach. He screamed out in frustration at the frutility of it all.
There is an ache deep in my soul, a thirst that cannot be quenched, a fire that cannot be quelled, an emptiness that cannot be filled. No matter what I do I cannot escape the reminders that she is not physically here. I cannot shake the deep sadness of trying to go on without her. I feel guilty because I have much to be thankful for but there are days I cannot stop crying.
A friend gave me the book "90 Minutes in Heaven" by Don Piper. I devoured it in one weekend. It is a true story of a man who was killed in a auto accident and went to heaven. He described what heaven is like. It is amazing. I am already comforted to known that Francesca is there. What he describes is much of what I already believe but in more detail.
Incredibly, he comes back to life after being dead for 90 minutes. How disillusioning to have seen heaven then come back to earth to face years of constant pain. Things that were also helpful are how he worked through depression, great physical pain, helplessness/accepting help, anger/frustration of not getting answers. He spoke of how people thought of him as a hero but he was not. How people prayed him back to life and through his ordeal. He often wondered why God brought him back. Some of the reasons are evident to him now but he knows that God is not finished with him yet. Another thing we had in common was that we both kept thinking about how things used to be. We have to come up with a new "normal." I have no idea what that is supposed to look like but I know pity-party mode is not really working.
One of the most difficult things is being patient, through incredible pain, while God is maturing me and teaching me lessons. In my humanness I get fed up and do not care anymore. I am not interested in waiting for His work to be done especially when it takes years. But even in the waiting He does send kind folks to pray, hold my hand, inspire me, to do my work, until we I am able to do it myself again. I know there is a reason why we are going through all this. I have hope it will be better some day. I do feel guilty for not being more grateful for how greatly we are blessed.
Now we see things imperfectly as in a poor mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God knows me now.
1 Cor 13:12
Tuesday, May 22, 2007 6:24 AM CDT
Guiseppe will make his confirmation tonight exactly six weeks after Francesca passed away. I pray that the Holy Spirit will impact him in a powerful way. Many of the kids are struggling. Life has not gotten much easier without her.
Remembering Francesca - Part 3
Francesca taught me to be brave. So many days she would not be doing well. Her condition would deteriorate so severely we would have to leave urgently. As we loaded the car, leaving crying siblings behind, I could offer no guarantees. I did not know when we would be home, if she would be OK, I was so frightened. Her future was uncertain. But I did know what would happen if I did not get her to the Cleveland Clinic! So we would embark, often in a driving blizzard. I was struggling to keep the car on the barely visible band of road. Cars would be stranded on the median strip like skeletons in the desert. I was terrified that we would become one of those trapped. Would her oxygen run out? Would her tube feed run dry? How long could she survive the wintry temperature? I forced myself to concentrate, mustering all the courage I could. Most mothers would understand. You do what is necessary. You do not know how but are given the grace for the moment. Eventually we would arrive and I could deliver her to those who would give her the treatment she needed. I often wanted to just collapse in a heap in the corner. But one look in those big, gorgeous, brown eyes and I would do it all again.
Francesca taught me to trust in God. I was so angry in the beginning. Why would God give me a child with such needs in addition to the children I had at home? Why would He make it so difficult for me to do my job as a mother when I could not be at home? We were often in the hospital. If He were such a loving God, how could He let this precious baby suffer so much? I have learned that it is not for me to understand. I do not have to know the whys. What seemed like such an eternity truly was just a flash. If God could have just let me in on his plan; if He could have put His arm around me and said, "Jean, this is what I have planned for you. I am going to give you this baby who will suffer greatly but I will take care of things..." It does not work like that.
He gifted me with an extraordinary child.
He has provided for us in so many ways:
His abundant grace to make it through this day, dedicated friends and family who have helped in every conceivable way. People who do not even know us are praying fervently for our family.
Between the days of Jesus' death and resurrection the apostles must have been shaken. What a dark time from Friday to Sunday. We know the end of the story but at that time they must have been wondering, what is going on!
Things are not always what they seem!
Count on the promises of God, who loves us even more than we can imagine.
Francesca leaves us with some challenges:
To my husband: One child in heaven, eight more to go.
To her siblings: that's a hard act to follow but how are you going to impact those around you?
To all of you: when life gets hard - you know it will
When you do not know how you will make it to tomorrow.
When the dark times come and the pain hurts so bad-
Do not try to wriggle out of it like I did. Think of Francesca and how gallantly she fought. Glean the lessons that God is trying to teach you, meet some amazing people along the way, and never, never stop trusting that God will pull you through.
Monday, May 21, 2007 5:58 AM CDT
I will continue to share the words I spoke at Francesca's funeral.
Remembering Francesca - Part 2
Francesca taught me to do my best with what I have been given. We spent so much time in the hospital; we met a lot of people. I am not sure what it was about Frankie that drew people to her - her beautiful face, her enchanting smile, her feisty spirit, her battle scars. People who did not even know us were moved to pray for our situation. It was in the hospital that I learned one of the most important lessons. It does not matter your occupation; whether you are a secretary or a surgeon, whether you care for people in the room or clean the room, everyone has an important part to play but in order for things to work smoothly, you must do YOUR job well. Don't settle for mediocrity. So whatever you are given: the gift of gab, art of cooking, whether your gift is intelligence, organization, or collaboration. Use it to make the world a better place.
Francesca taught me about gratitude. One the the "Good Friday" sides of her illness were the frequent hospitalizations. If one wanted to bring out the "mother tiger" in me; torture my child and separate me from my other children. That pretty much describes a good portion of the last 2 1/2 years. I often let my anger/frustration/resentment turn into bitterness which can eclipse some of the beauty of the moment. Gratitude is the antidote for bitterness. Be thankful for something everyday, no matter the circumstance. For Francesca it was a drink, being held, being with her siblings. She savored every good thing.
more tomorrow
Sunday, May 20, 2007 5:26 AM CDT
Francesca's funeral mass was the beginning of healing for our family. It focused on her new life in heaven rather than her death. Being just after Easter, the kids shared their "Good Friday" and "Easter Sunday" experiences about Francesca. It was amazing. Although I detest public speaking, I felt motivated to share all that I learned from this experience. Some have asked for a copy, so I will now post the words I spoke at her funeral over the next several days.
Remembering Francesca: Part 1
Would you be willing to bring into this world, a precious soul, one who would only be on this earth a short while?
That is the agonizing decision Mark and I faced exactly three years ago.
Little did we know the graces that would abound from accepting such a responsibility.
Francesca Jordan Frisone was named for St Francesca Cabrini, an immigrant from Italy, and Sr. Jordan Haddad, a feisty Lebanese nun often called the "Mother Theresa" of Portage County.(the county where we reside)
Sr. Jordan did not like that name,
but it did reflect the works she did in the community and the impact she had on others' lives.
It was Sr. Jordan that I turned to when Frankie was diagnosed with her heart condition, in utero.
It was Sr. Jordan that I went to for advice about life.
It was Sr. Jordan that loved my kids as individuals.
It was Sr. Jordan that we asked to be her godmother.
Francesca did not grow old enough to hold such standing in the community, but by the number of people here,
it is evident, she made a sizeable impression in her short time on earth.
In the first reading (Romans 8:14-25) Gina read about suffering with Christ. Francesca had her share of suffering. As I cared for her week after week, month after month, it seemed like her pain would never end.
I find consolation in Paul's words,
"I consider that the sufferings of this present time are as nothing compared with the glory to be revealed for us."
I am confident that she will never thirst again,
will never endure another procedure,
that the glory of heaven has been revealed to her.
If our love for her could have fixed her heart,
she surely would have never needed surgery.
It may have just prolonged her life long enough for us to know her incredibly personality.
She taught me so many things.
She taught me about perseverance.
She was diagnosed with a combination of congenital heart defects so complex she was not supposed to survive.
From open heart surgery the day she was born, through one nail-biting admission after another, she persevered. If a typical kid followed a particular course of treatment, she would do something different. She had her own agenda. She commanded the attention of those who cared for her at the Cleveland Clinic. The compassionate care she received, combined with her determined spirit, granted her more days here on this earth than most would have guessed possible.
more later
Wednesday, May 16, 2007 9:25 AM CDT
A CD that was especially inspiring to me is Third Day's Wherever You Are. The whole album is about God's faithfulness in difficulty of life's circumstance. One of my favorites is Mountain of God. I wish I could play the song but here are just the lyrics:
Thought that I was all alone
Broken and afraid
But You were there with me
Yes, You were there with me
And I didn't even know
That I had lost my way
But You were there with me
Yes, You were there with me
'Til You opened up my eyes
I never knew
That I couldn't ever make it without you
Even though the journey's long
And I know the road is hard
Well, the One's gone before me
He will help me carry on
After all that I've been through
Now I realize the truth
That I must go through the valley
To stand upon the mountain of God
As I travel on the road
That You have lead me down
You are here with me
Yes, You are here with me
I have need for nothing more
Oh, now that I have found
That You are here with me
Yes, You are here with me
I confess from time to time
I lose my way
But You are always there
To bring me back again
Sometimes I think of where it is I've come from
And the things I've left behind
But of all I've had, what I possessed
Nothing can quite compare
With what's in front of me
With what's in front of me
Tuesday, May 15, 2007 6:17 AM CDT
This past weekend was so full yet so empty in a way. I worked all night Thursday with my buddy, Gloria. Mark's cousin, Erin, got married Saturday. It was a beautiful wedding. Dominic made his First Communion on Sunday. Being at the wedding and reception all day Saturday left me less time to prepare food and the house for company. So I stayed up into the night, playing inspirational music, and scurried around the house getting things ready. I get so much more done when everyone is asleep. No matter how I busy myself I cannot fill the void of Frankie's absence. I know she is really with us in spirit but the thing I miss most is holding her. She really loved that so we did it often. Now I realize how good it was for me, too.
I thought about calling the night shift nurses on M40. I knew they would be up; except for Denise who was probably sleeping at the desk! I think about the staff at Cleveland Clinic daily. We spent so much time there and met some phemonenal people. Although I complained about being there so long, I sure miss them all.
I think about the home care nurses, especially Debbie, Cindy, and Betty. It is so odd to have these people in your home everyday then never see them again. So if you read this don't hesitate to call or come over. We miss you, too.
It is five weeks today since Francesca passed away. I can no longer say "This is not happening. It cannot be true." It is true. She is not physically here. Her picture smiles at me from the bookshelf. We have albums full of photos reminding us of our time together. We have a barrel full of flowers and angels from her funeral on our front step. Just like the cardinal and her babies outside our window, she has moved on. The nest is empty. I get up each day to be a mother to my other children. I am comforted by the cards and the comments on the website. I know that one day it will not be so painful. Thank you for your prayers and support!
"When faced with a challenge, look for a way not a way out." David Weatherford
Tuesday, May 8, 2007 8:00 AM CDT
"Life can be hard- and grossly unfair. When the bad things happen, we often ask,"Can we trust God?" But perhaps the real question is, 'Can God trust me?' Can He trust us to hold on? Can He trust us to want to become mature Christians, or will we remain little children who believe in Him only if He makes it worth our while? When life seems to cave in for no reason at all, will we remember that God is faithful?
If we're going to be able to handle life when it doesn't seem to make sense, we have to get real. We have to set our faces in the right direction and keep walking as He walked. At times the road will be long and dark, the mountains unscalable. Because we're humans we won't always make perfect choices. Sometimes it will seem we take two steps forward and one step back, but it doesn't really matter. All that really matters is being on the right road."
from Life is Tough but God is Faithful by Sheila Walsh
"Cast your burden on the Lord, and He will sustain you..." Psalms 55:22
Monday, May 7, 2007 7:06 AM CDT
Our internet service has been down so I have been unable to get online. It has been a difficult week. Life sure keeps moving on whether you feel like it or not. It has been a strange re-entry for me. After 11 weeks in the hospital, most of it in intensive care, it is hard to switch gears to doing "normal" things, especially without Francesca. There will be many "firsts" without her. I will now have many opportunities that I have not had in the past 3 years to be involved in different things but it is all bittersweet. One of the things I am most grateful for is that it is spring. The sun is shining, birds are singing, flowers blooming. Not only does it help emphasize her new life, it is all more motivating to keep moving. If it were winter, I do not think I would ever get out of bed!
Francesca learned some sign language before she could speak. One of her favorite signs was "bird". In the morning she would go to the window and sign birdie, birdie with great enthusiasm. Last week a female cardinal made a nest in the bush right outside the window of Francesca's room. She laid 2 eggs and watched over them vigilantly. The babies hatched and the kids have been checking on them everyday, watching the momma feed the babies. Mario described the female as the bird with the mohawk. Frankie would have loved it.
When we swapped out her fresh flowers for a silk arrangement at the cemetary, it had a bird and nest on the handle.
I have been spotting purple tulips every now and then.
Yesterday, there was a mass at Hoban High School, where Anthony and Guiseppe attend, for deceased family members. In the homily the priest spoke of many great things especially the 5 Fs - priorities in life. Faith, Family, Friends, Fitness, and Fortune. Our culture tends to put them backward but this is the proper order. Something to think about. We have had amazing support from friends, family, and the community that gives us comfort in this difficult time. I will never tire of hearing how Francesca has inspired people in their everyday lives. Thank you for sharing.
"My flesh and my heart may fail; but God is the strength of my heart, and my portion forever." Psalm 73:26
Tuesday, May 1, 2007 5:09 AM CDT
It seems so much longer than 3 weeks since she has gone. A friend was given this poem when her daughter died and has shared it with me.
Our Baby Saint
by Collette Wilson
Do you settle in the Queen's arms so sweet?
Does she rock you and sing you to a gentle sleep?
Is your cradle close by her precious throne?
Does she make certain that you are never alone?
Does He ever put His crown on your head?
Do you kneel and kiss the Sacred Wounds that once bled?
Do you whisper kindly to Father dear
To take care of your parents so "they may come here?"
Does Saint Joseph kiss your fair little hand?
And tell you the miseries of this far off land?
Do you say lots of prayers for all the lost souls?
Do you always rejoice when the bell for Mass tolls?
Do angels fly you on their blessed wings?
Do you love to listen to the hymns that they sing?
Do you hold brown cloth for Saint Simon Stock?
Do you assist Saint Francis in tending the flock?
Do you and Saint Therese gather flowers?
Can you listen to Saint Anselm for hours and hours?
Does Saint Anne teach you all that we believe?
Do you help Dominic with rosaries to weave?
Does Saint Paul unveil all Heaven's glories?
Does Saint John Bosco tell you all the saints' stories?
Do you play with Saint Peter's keys of gold?
And share all the mysteries there are to be told?
Did you know my dear daughter, that you are missed?
Do you know how we had planned to do all of this?
And yes we know too that this is God's plan
So that we could have a Heavenly helping hand.
Yet in our hearts we will not be complete
Until the moment that we at Heaven's gate meet
For that moment to come we all must pray
When we hold you in our arms nevermore to stray!
So until the day when God brings us there
It helps to picture you and all the Heavenly care.
We miss you Francesca!
Monday, April 30, 2007 2:53 PM CDT
Long ago I decided I wanted to be obedient to God's will for my life. Even though God is a loving God,it can make one feel vulnerable. In this day and age that can be equivalent to writing a blank check. I have been open to a large family with children of many different temperments and personalities. I know I am increasing my chances for hardship but my life experiences are very rich. I love deeply. It does make the pain of losing Francesca like a wound that keeps getting reopened. Her life and mine were so intertwined that trying to move on without her is a constant reminder that she is not physically present. But I do not wish she was never born so that I don't feel the pain. I am often a slow learner and it takes an experience so moving to make an impact on me. The week of her death so many lessons became apparent to me. So much so I was moved to share it at her funeral mass. I detest public speaking but I was passionate to share what Francesca had taught me. I may share some of that talk in the coming days but for now
Lord, give me a quiet heart
that does not ask to understand
But confident steps forward in
The darkness guided by my hand.
(Elisabeth Elliot)
I know He has much work to do with me yet.
Friday, April 27, 2007 10:29 PM CDT
Lots of ups and downs. At times it gets very discouraging. There is so much work to be done. In my 3 month absence, the organization of the house began to disintegrate. Every closet is disorganized, every room needs decluttered. Each child is plagued with scores of bad habits, like a garden that has been neglected and the weeds are out of control. It feels like all that I worked hard to instill has been destroyed and not only do I have to start over but have to do remedial work before we can move forward. I have tried to balance projects at home, schooling, building in some fun, lots of hugs, exercise, etc. As usual things do not move in my time frame. My impatience often impedes my goals rather than hastens them. The children can feel my judgment instead of my love and that is not the message I want to convey.
This website has been an avenue for others to let me know that they are still praying. I know many are checking on us even if they do not leave a message. I wish we could all be visiting in person but since that is not practical if you just sign the guestbook from time to time, it is greatly encouraging to me.
Melissa Bennett made an entry the other day that brought tears to my eyes about the purple tulip. I was told that there would be Frankie stories. It makes me feel closer to her. In trying to put the pieces of our family back together I asked Mark to try and establish a date night. We were able to go out to dinner Thursday night for the first time in so long (and it was not a business function!) My aunt and uncle took the kids out to eat and watched them all evening. As we were walking toward the restaurant there was a bed of purple tulips just like Melissa described. Today I opened a card with a single purple tulip. I still think of her constantly but sometimes with a little less sting; all because people care and pray and write. Thanks again for the support to make it through another day.
Thursday, April 26, 2007 7:25 AM CDT
Here is a poem that the girls wrote and read at Francesca's funeral.
Francesca Frisone a child of God,
one we truly adored and now applaud.
To all the things she did for us so,
but then God told her she had to go.
A golden heart stopped beating; a working body at rest.
We all cried, but we knew it was for the best.
We mourn now at what we think is her grave,
but her soul lives on and helps us be brave.
She is a saint in heaven we know that is true,
and believe for eternity she is praying for you.
by Gina and Maria Frisone
Wednesday, April 25, 2007 6:51 AM CDT
Taking baby steps forward. Looking for signs of hope. The cards in the mail and comments on the website do give me hope. Francesca's life had such significance. The pain is going to be inevitable. Here is a song I heard yesterday that has great meaning for me.
If You Want Me to
by Ginny Owens
The pathway is broken
And the signs are unclear
And I don't know the reason why you brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If you want me too
Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If you want me to
It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone
So when the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to
Tuesday, April 24, 2007 3:07 AM CDT
Today marks two weeks since Francesca's death. It feels more like a decade since I've held her, since I felt her heart beat against mine, since her soft breath puffed beside my cheek. No more bedtime stories with her in the middle, waking up with her by my side. I will never hear her voice calling my name again. No more eskimo kisses or rocking before bed. I will not hear the "pitter-patter" of little feet to chase us down the hall. No double decker kisses in those soft, fat cheeks. Our family picture will forever be incomplete.
The pain of losing her feels unbearable, but many have done it before me, so I am sure I will survive somehow.
Monday, April 23, 2007 5:11 AM CDT
It was such a beautiful day yesterday. My favorite kind of day; sunny but not too hot. The church is still decorated with Easter flowers. Trees are budding. Flowers blooming but my heart is aching as the reality settles in that Francesca will not be here with us to celebrate Spring.
The sports schedule has begun, life goes for everyone else. No stroller rides to baseball games. No drippy ice cream kisses. No wagon rides down the street.
She loved the "birdies" in the early morning on the front lawn. She would try to kick a ball, her chubby hand in mine, trying to imitate the other kids. Now it feels like just going through the motions of life.
I recall seeing pictures from the Oklahoma City bombing where the whole side of the building was sheared off. That is what is feels like inside. A piece of my heart was ripped away and buried with her. There is no peace. Going daily to the cemetary, busying myself around the house; there is no relief from the agony. The children are grieving. Mark is busy with work. Everything reminds me of her and that she is not here.
Wednesday, April 18, 2007 3:04 AM CDT
I cannot believe it has been a week since Francesca has passed from my arms into the next life. Everything about this experience seems unreal. The day that she died and those that followed, I kept thinking, this can't be happening. This cannot be real. Francesca wake up! I cannot be picking out her casket or the plot of ground where her lifeless body will lay. My mind refuses to clear: sometimes I doing a present day task but my brain is fixated on a memory, a photograph. I don't know what I'm doing. I awaken in the night. I listen for the whir of her tube feed pump, the beat of the pulse oximeter, the steady rhythum of her breathing. Nothing. Silence. No chubby hands to hold through the crib rail. No cheerful voice to greet me in the morning. For the first time in 17 years there is no baby in our house. My youngest is now 4. The night she died I rocked her body for hours knowing I would never hold her again. Now I carry the blanket from that night to keep from having empty arms. Yet I am lucky. I have 8 other children to fill my day. A husband who will hold me as we face each day without my daughter. A house full of food and flowers, symbols of support from friends and family. We were able to partake in a funeral mass like no other, orchestrated by my uncle, Fr. Phil Pritt, Francesca's godfather. The healing began there. It was truly a celebration of her life in heaven.
I am so fortunate. Francesca's suffering is over. It was relatively brief in the concept of eternity. Many endure hardship for a lifetime. Many mothers continue to care for their suffering children and never get to see how God is using their suffering for the good. I have learned so much from our experience. God has shown me just a glimpse of how Francesca has impacted others' lives. I will be forever changed. Pray for those still in the hospital and the professionals that care for them. There are so many in the world that cannot get the care they need or that are hungry tonight. We have much work to do.
I have not been on the website since we have been home from the hospital. I am grateful for your kind words of encouragement. The children are in varying stages of grief. With time, I feel confident that they will be OK. I can find no words to describe our gratitude for the tremedous outpouring of support from the community. We appreciate your thoughtful and generous acts.
"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. And He that sat upon the throne said, Behold I make all things new." Rev 21:4-5
Thursday, April 12, 2007 0:24 AM CDT
Funeral Arrangements for Francesca Frisone:
Calling Hours: Friday, April 13, 2007 2:00 p.m.-8:00 p.m.
Bissler & Sons Funeral Home, 628 West Main St in Kent, OH, 44240.
Funeral Mass: Saturday, April 14, 2007 10:30 a.m.
St. Joseph Catholic Church, 2617 Waterloo Rd. Mogadore (Randolph), OH, 44260.
Graveside services immediately following, St. Joseph Cemetery with luncheon to follow.
Luncheon 1-5PM, Northeastern Ohio Universites College of Medicine (NEOUCOM)Conference Center, ST.RT. 44, Rootstown, OH 44272
Memorials may be made to:
FRANCESCA JORDAN FRISONE MEMORIAL FUND c/o Family & Community Services, 143 Gougler Ave. Kent, OH 44240.
Tuesday, April 10, 2007 9:41 PM CDT
Dear Friends,
There is no other way to say so I have to. Frankie has passed away. Apparently, she had an infection and her heart could not take it. We do not know when or where the funeral service will be; we don't know much of what to do at all anymore. All I know is that we have a saint looking down on us. Please, please pray for our family.
Love,
Gina
Mark left me a message last night. Frankie was rushed to the hospital on Tuesday, April 10, 2007 about 2:00, she was unresponsive and had a 106 temp. She passed away at 5:55 p.m. at the hospital. Funeral arrangements will be posted on this website once they are complete. Please keep this amazing family in your prayers.
Love, Mamie Wilson
Tuesday, April 10, 2007 3:35 PM CDT
Emergency people, Emergency!
Usually I would pause for a moment to make up some corny jokes but not now. We are up to our necks in trouble! Were do I start? It started this morning, she was extra crabby today and kept on crying "Drink! Drink!" Mom let her have a little extra and called the doctor to see if they could get her off the diretics and stop drying her up. The rest of the day went smoothly until Frankie started getting a high fever. She started having less and less movement. A few hours later, she went completely out! She would not [or could not] move. All she did was breathe! Her eyes were just barely open. She did not move her arms or anything. Mom called an ambulance and I had to go outside and wave the ambulance into our driveway. The Doctors came inside with a bunch of boxes and started taking Frankie's temperature. Although I was crying at the time I could not help smiling when Mom yelled, “Listen I'm a RN nurse, I already took her temp, it was 105 degrees Fahrenheit! You need to get her in the car and take her to the hopital now or I will go and drive her there myself!"
The Doctor said, "We will not leave without information. I'm a trained doctor from Akron Children’s I know what I'm-"
"Well good for you!" Mom said. "But this child has the most complicated anatomy ever!"
So they just picked Frankie up and took her to the hospital. My Grandma Warner and Anthony just left to go see Frankie. My Uncle David is watching us. Dominic, Sophia, and Mario don't know anything about this so if you call and they answer the phone, ask for my uncle David or me. AND PLEASE PRAY FOR FRANKIE!
Love,
Gina
Tuesday, April 10, 2007 2:28 AM CDT
Francesca came home Sunday afternoon on two new diuretics still in a high amount of oxygen but breathing easier. Monday morning she spiked a temp of 102.5 so it was off to the pediatrician's office but could not find an obvious source for the fever. We went to the emergency room to have a catherized urine specimen taken, blood work done after multiple attempts. We spent a long time getting her new medicines that change daily. She is quite dry now which makes it possible to turn down her oxygen. Late today we got back to one liter. The disadvantage is she is so dry she is constantly crying for more to drink. She does not sleep much, up every hour through the night if she sleeps at all, never feeling satisfied. Mark and I get so discouraged. We just want our little girl back. The one who is so bright and funny with her wry sense of humor. The one who is so playful, happy, and loving. Now our daughter is demanding, rarely smiles, does not stop screaming day or night, obsessed with her next drop of fluid. Will not engage in toys or books that she used to love so much. Even her siblings have difficulty distracting her from her discomfort. My being home still feels like I am not present to the other children because Francesca's care demands so much of me. It would all seem so much better if we were working toward a certain goal instead of a vague one. It all feels so much like the anxieties and uncertainty of her first year. Grim prognosis, frequent admissions that left children crying wondering when we would return and a worrying husband/father wondering the outcome this time. Everyday I come back to the hundreds of people keeping us in prayer and a loving God who knows of our suffering. So each day I take up my cross, walking in faith that better days will come again.
Saturday, April 7, 2007 5:26 PM CDT
Francesca continued to decline through the night. She was desatting in 2 liters of oxygen and breathing fast. We came up to Cleveland Clinic early Sat am. They are trying 2 new diuretics with some success. The plan is to try and find the most powerful diuretic regime possible by mouth/ by tube that she can have to prevent these "wet" set backs from happening. Further discussions will need to take place if these are not effective.
Being home is nicer than being in the hospital but the uncertainty of her condition is very stressful on the whole family.
Friday, April 6, 2007 2:00 AM CDT
Francesca is not doing well. I have had to turn up her oxygen all evening. I spoke with the cardiology fellow at 10:30 and he spoke with her cardiologist. I have followed their directions and she is still requiring more oxygen. She left the hospital Monday in 1/4 liter, now is in 1 1/2 liters trying to keep her sats above 90%. Her respiratory rate is climbing and we will probably be readmitted by morning. It is hard to describe what this week has been like but a taste of home has been better than nothing at all. Set in the backdrop of Holy Week, I can hardly complain. We have had amazing support to try and make a smooth transition. Although Frankie has not had enough time to "detox" from the hospital environment, she has had a small break which is better than nothing. Her cardiologist is phenomenal! She treats her as a whole person not just as a single organ and realized the importance of getting home. We will see what happens. If we do get readmitted, it will be devasting to the children.
"Nothing is more pleasing to God than unshaken faith and confidence in the midst of darkness. Make a great practice of acts of confidence even when you feel nothing. It is just in these moments of dryness and darkness that these acts are most meritorious." Blessed Columba Marmion
Wednesday, April 4, 2007 8:04 PM CDT
Hello Friends, Family, and Countrymen,
This is Gina Frisone, live, [Depending on when you read this] and in the flesh. Now enough about me, time to talk about everyone’s favorite topic...Frankie!
Today we have some excellent thriller stories and a couple of tragedies for today’s story time. Today at 4:00 am, Frankie tore out her pick line! Beats me how she did it, she was supposedly asleep, medical tape and swabs tied around her arm, wearing a long sleeve shirt, chained to her bed [Just kidding!]. She is a female Houdini!
Mom and Maria hurried to pack all the things they needed to go to Cleveland Clinic [You shouldn't feel sorry for them because they had an appointment for that day anyway. However, maybe you should feel sorry or will be sorry anyway. I don't know, let's get back to the story and end the psychology.] There were battle cries of, "Where is that hairbrush?"
"Give Frankie a bath!"
"I need a toothbrush!"
"Where did I put her clothes?" ect.
It went on for a while and ended with a series of short barked commands issued from Mom [I am glad to say I could not decipher those commands although I MIGHT have heard something around the lines of 'work' and 'school'.].
Anyway here are the important things I was supposed to tell you, Frankie pulled her pick line, had labs, labs were good, next appointment Friday, held digoxin, changed lasix from I.V. to mouth, [I am reading this from a boring list Maria gave me, just to let you know.] and she will be able to stay home for Easter.
Frankie staying for Easter is good news for the children because we are going to put our long awaited plan into action. We are going to ambush the Easter bunny, guerilla style! Hah hah! No more black X's on our stockings! Wait, no that's Santa Clause, we got him last year [I hope the Privacy Policy on this website is good against the Easter bunny too.]
Well I have to wrap up before my bedtime and have my Mom edit this. Night!
Wednesday, April 4, 2007 7:18 PM CDT
Hello Friends, Family, and Countrymen,
This is Gina Frisone, live, [Depending on when you read this] and in the flesh. Now enough about me, time to talk about everyone’s favorite topic...Frankie!
Today we have some excellent thriller stories and a couple of tragedies for today’s story time. Today at 4:00 am, Frankie tore out her pick line! Beats me how she did it, she was supposedly asleep, medical tape and swabs tied around her arm, wearing a long sleeve shirt, tied to her bed [Just kidding!]. She is a female Houdini!
Mom and Maria hurried to pack all the things they needed to go to Cleveland Clinic [You shouldn't feel sorry for them because they had an appointment for that day anyway. However, maybe you should feel sorry or will be sorry anyway. I don't know, let's get back to the story and end the psychology.] There were battle cries of, "Where is that hairbrush?"
"Give Frankie a bath!"
"I need a toothbrush!"
"Where did I put her clothes?" ect.
It went on for a while and ended with a series of short barked commands issued from Mom [I am glad to say I could not decipher those commands although I MIGHT have heard something around the lines of 'work' and 'school'.].
Anyway here are the important things I was supposed to tell you, Frankie pulled her pick line, had labs, labs were good, next appointment Friday, held digoxin, changed lasix from I.V. to mouth, [I am reading this from a boring list Maria gave me, just to let you know.] and she will be able to stay home for Easter.
Frankie staying for Easter is good news for the children because we are going to put our long awaited plan into action. We are going to ambush the Easter bunny, guerilla style! Hah hah! No more black X's on our stockings! Wait, no that's Santa Clause, we got him last year [I hope the Privacy Policy on this website is good against the Easter bunny too.]
Well I have to wrap up before my bedtime and have my Mom edit this. Night!
Tuesday, April 3, 2007 6:55 AM CDT
Hi Guys,
This is Gina Frisone speaking. My mom is to busy to write this so she asked me to do it. We have some excellent news for you.
Drum roll please BRRRRRRR...Frankie and Mom are HOME!
Now hold your seats, [stop fidgeting!] you must sit still while I tell you the rest of the story.
Frankie and Mom came home with my Grandma Warner yesterday. Frankie was really happy! When they got out of the car, Mario came to give Frankie a hug when she screeched, "Pudgy!" [For all of you who do not know, Pudgy is Mario's nickname.]
We went inside where Mom and Frankie got settled in and Grandma made some dinner with a little help from Mom.
Now, if you want to know about Frankie's well being and her oxygen levels and all that stuff, you will have to wait for the expert herself to write [The one who knows what she is talking about because I sure don't!]. All I know was the first day she was a little grumpy and tired but today she is giggling some and is a little bit happier. Mom said it would take a while before the depression of being in a hospital for three months would take a while to wear off, but from my perspective, it already is [But being a kid, I can see some things that adults usually can't!]. Well I don't know anything else unless you want to know about every little twitch she had so Gina Frisone, signing off.
Tuesday, April 3, 2007 6:55 AM CDT
Hi Guys,
This is Gina Frisone speaking. My mom is to busy to write this so she asked me to do it. We have some excellent news for you.
Drum roll please BRRRRRRR...Frankie and Mom are HOME!
Now hold your seats, [stop fidgeting!] you must sit still while I tell you the rest of the story.
Frankie and Mom came home with my Grandma Warner yesterday. Frankie was really happy! When they got out of the car, Mario came to give Frankie a hug when she screeched, "Pudgy!" [For all of you who do not know, Pudgy is Mario's nickname.]
We went inside where Mom and Frankie got settled in and Grandma made some dinner with a little help from Mom.
Now, if you want to know about Frankie's well being and her oxygen levels and all that stuff, you will have to wait for the expert herself to write [The one who knows what she is talking about because I sure don't!]. All I know was the first day she was a little grumpy and tired but today she is giggling some and is a little bit happier. Mom said it would take a while before the depression of being in a hospital for three months would take a while to wear off, but from my perspective, it already is [But being a kid, I can see some things that adults usually can't!]. Well I don't know anything else unless you want to know about every little twitch she had so Gina Frisone, signing off.
Sunday, April 1, 2007 1:16 PM CDT
The good news: Frankie is doing well with the wean. Barring anything catastrophic, we will be discharged from the ICU tomorrow.
The bad news: Her heart is still in very bad shape. They would never have let us go home if they had not had already promised we could. She is on very high doses of diuretics IV. She is at risk for infection as long as that PICC line is in but she cannot survive on just oral meds at this point. It will take a lot of tweaking to get her where she needs to be. I look forward to working with just one doctor during this process; not having to change every Monday to someone new. Unfortunately, there will be a very low tolerance for anything to go wrong and they will want her readmitted. So whatever few moments we have at home, I will cherish. But let us get out the door first!
"We wait in hope for the Lord; He is our help and our shield. In Him our hearts rejoice, for we trust His holy name. May Your unfailing love rest upon us, O Lord, even as we put our hope in You." Psalm 33:20-22
I talked to Jean about how we could help her with this new transition. She knows she will need an additional set of hands at home as she works out Frankie's med schedule. If you're able to help at home with the other kids please give me a call and we will work out a schedule to make this transition to home easier for everyone. Germaine (Mamie) Wilson cell 330-241-1328.
Saturday, March 31, 2007 5:53 PM CDT
Tolerating the wean from milrinone OK so far. Still on megadoses of diuretics and negligible nutrition. Will continue to watch. The drama of yesterday nearly knocked me out of the game. Hanging on by a spider web.
Friday, March 30, 2007 1:17 PM CDT
Francesca had a very good night and would consider her finally balanced from her fluid overload episode but she is still nutritionally depleted and on a ton of diuretics. Dr. Latson, the cardiologist who does her caths, just returned from vacation and is convinced that she does not need milrinone. Despite our team meeting and the agreement of everyone involved, he is attempting to wean her again. This time he will do it quickly. He halved the dose already but the effects will not be seen until tonight. Friday night is not the greatest time to be getting into trouble but we are in ICU and should be watched closely. He will turn it off tomorrow. She should declare herself by Monday if she needs it or not. I am concerned that something very bad could happen that could further delay her discharge. I was emotionally devastated. The hope of going home soon was keeping me going.
Thursday, March 29, 2007 8:12 AM CDT
Francesca had a decent night. She rested fairly well. Did not mind the fluid restriction. We got her more dry. Xray looked better. So on rounds this am the lasix drip will be changed to every 6hrs. Diuril stays the same at every 6hrs. Because she is more dry we turned her oxygen down; currently she is in 40 /2 liter. If she keeps progressing she will be able to get off high flow and go to a regular nasal cannula. She is in good spirits this morning. It is so refresing for things to be going better.
"And when we find ourselves most hopeless, the road most taxing, we may also find that it is then that the Risen Christ catches up to us on the way, better than our dreams, beyond all our hopes. For it is He-not His gifts, not His power, not what He can do for us, but He Himself- who comes and makes Himself known to us. And this is the one pure joy for those who sorrow."
from Keep A Quiet Heart by Elisabeth Elliot
Wednesday, March 28, 2007 7:44 AM CDT
I am beginning to appreciate how tenuous Francesca's condition is. The docs just cannot round in the am then re-assess 24hrs later. It takes an hour by hour evaluation. Many do not realize this, so it has become my job to make them aware. I miss the ICU resident that cared for us last time. She was a great listener and became aware very early on that Francesca was not a typical patient and required special attention. This time is different but I think we have the attention of the attendings so the residents can just follow along. Frankie came down somewhat on the oxygen but did not make much progress during the night. The high flow system she is on delivers the oxygen like Cpap, a more forceful way to deliver oxygen, opening the alveoli in her lungs. She is still in 4 liters at now 55%.
We had to increase the diuretics(up on the lasix drip, added diuril, then upped the frequency). I withheld her feeds since 2am and we barely broke even in her ins and outs. The sad thing is she did not even mind not eating. She remains subdued, not really interested in drinking. Less fighting when people examine her. Her x-ray was not improved. She is not dry enough. My impression is that her heart is not able to pump effectively to perfuse the other organs. If kidneys are not addequately perfused they do not work well. She had an ECHO today to confirm or disprove my theory.
"Wait on the Lord for whatever He appoints, wait quietly, wait trustingly. He holds every minute of every hour of every day of every week of every month of every year in His hands."
Tuesday, March 27, 2007 7:58 AM CDT
Francesca had a restless night. Getting thirsty again. Respiratory therapy slowly began weaning her oxygen. She is still on high flow but was in 8 liter, now 4 liters. The chest x-ray is looking a little drier each day. Still on lasix drip but was turned down yesterday because she started to stool again. Went back to pedilyte, stools slowed. Back to 1/2 strength formula, tolerating OK. Will try 24cal instead of 30cal formula today to see if her gut can handle that.
St. Augustine said," The very pleasures of human life men acquire by difficulties." There are times when the entire arrangement of our existence is disrupted and we long then for just one ordinary day- seeing our ordinary life as greatly desirable, even wonderful, in the light of the terrible disruption that has taken place. Difficulty opens our eyes to pleausres we had take for granted.
from Keep a Quiet Heart by Elizabeth Elliot
Monday, March 26, 2007 8:00 AM CDT
Sunday Francesca was very sick. The rotovirus devastated her fluid balance because of the fragility of her heart codndition. She was working hard to breathe despite increasing oxygen and lasix. She did have some fluid on her R lung. Not enough to tap but enough to cause her grief in addition to her heart failure. She ended up in 8 liters of high flow oxygen and a lasix drip. By late in the day she was responding to the drip and started to pee. Her blood pressures were low so they stopped her enalapril and and increased her milrinone. She lost potassium which they replaced but was still working hard to breathe and only satting in the mid 80s. I was alone and it was very scary. Late last night her breathing started to improve. Still rapid but more shallow. Mom came up and I finally slept. She looks somewhat better today but still with a lot of support. The effusion is smaller. We will stay in the ICU and see if they can come down on some of the oxygen and lasix. We will see how she tolerates it. Her stools have slowed and diarrhea has resolved.
"The Lord is a stronghold for the oppressed, a stronghold in times of trouble. Those who honor your name trust in you; you never forsake those who seek you, Lord."
Psalm 9:10-11
Sunday, March 25, 2007 5:28 AM CDT
Francesca finally slept! Unfortunately, it was in the ICU! When I returned from work, she was working hard to breathe, requiring increasing amounts of oxygen, still drinking her allotted hourly amount but not asking for more, she would rest in between. She peed an large amount from her lasix but it did not help her breathing. Her chest Xray may indicate an effusion starting again in her R lung. The one this am will confirm that suspicion or not. As her sats continued to drop, they decided to put her in the intensive care unit. She is in 2liters of oxygen, satting in the mid 80s to low 90s. The IV nutrition was successful in slowing her diarrhea. We will see what her electrolytes show this am. Not sure what the plan will be for today.
Today marks 10 weeks since we left home.
Saturday, March 24, 2007 7:30 AM CDT
Francesca was put on IV nutrition in addition to having a little to drink. She is still soooo thirsty and not sleeping. Her sodium is still high this morning but overall her electrolytes are nearer to normal. Unfortunately, she gained 900gms in her weight which means she is fluid overloaded. If they keep her on IV nutrition since that helped the diarrhea she will have even less to drink because her fluids need cut back. She will need lasix that will pull fluid but often decreases her potassium. Additionally, there is a cardiologist on service this weekend that does not know her and I am at work. Hopefully, we can get through this and get on home.
"We wait in hope for the Lord. He is our help and our shield." Psalms 33:20
Friday, March 23, 2007 6:25 AM CDT
Many of you wonderful folks have been following along for so long. Francesca will make sure that it is not a boring story. We found out why she had 20 stools in 24 hrs. The good news is it is not from the ice cream. The bad news is she is positive for rotovirus, an intestinal virus that creates havoc on kids like her. Her electrolytes are a mess, her already nutritionally deprived body poops out everything she takes in. Someone who is dependent on lasix walks the fluid balance tight rope continually. She still did not sleep AT ALL last night, but she did stop screaming. She was allowed an extra 500cc of pedilyte over an 8hr period yesterday morning which she happily pounded down without difficulty. She had 18 stools in the last 8hrs! She will continue to cause residents, fellows, and attendings of all specialties to scratch their collective heads to come up with a solution. If she is not sleeping, why should they?
My daughter Maria, 10 years old, has been staying with us the past 2 days. She is amazing with Francesca and another pair of hands has been soooo helpful. Because rotovirus is very contagious, we are confined to our room; not able to take the walks that were the only thing that kept her temporarily content. Now that she is not screaming anymore and with Maria's help, we can hopefully distract her with other things.
If it were not for the fervent prayers of so many, I surely would have lost my mind long ago. I clearly feel the peace that passes understanding as a direct result of your continued support. The comments on the website keep me going another day. I am so grateful!
"Gold is gold, but it has to go through fire. Faith is even more precious, so faith will always have another test to stand." from Keep a Quiet Heart by Elisabeth Elliot.
Thursday, March 22, 2007 9:29 AM CDT
The meeting went pretty well. Many people involved in her care spent a lot of time discussing options before Mark and I came in. The first question to me though was what do you want for Francesca. I responded to get her home as quickly and safely as possible. She has gotten to the point of screaming day and night. The bottom line is that we are going to be able to take her home on milrinone. There are many, many things to organize and work out. This not the same kid that we took to the hospital 2 months ago or even that arrived in Cleveland 4 weeks ago.
We can speculate on the reasons for her "psychosis". Much of it is driven by thirst. A 2yo cannot understand why she can have it sometimes and not othertimes. Some may be being confined in the hospital for so long. There was a new medicine added about the same time she really got worse. She does not sleep. Yesterday, she was up at 4am for good. Slept one hour in the day and only one hour last night. She was allowed ice cream yesterday and ended up with 20 stools. Now her electrolytes are a mess. She lost a ton of weight. She has fever. So we will have to get her straighted out before we go home safely. But it is good to have hope of that happening soon. Hopefully, we all will be up for the challenges that will present upon re-entry and with her new special needs.
"Give thanks to the Lord who is good, whose love endures forever." Psalm 106:1
Tuesday, March 20, 2007 11:43 AM CDT
Many cardiologists collectively discussed Francesca at cath conference yesterday. They are all brainstorming to figure out the best plan of care for her. The cardiologist on service this week, Dr. Prieto, suggested a medicine that is usually used for a different population of heart patients but thought it might be helpful for Francesca. It was started last night and would take a few days to be effective. If that fails I asked her to consider sending us home on IV milrinone even for a few weeks. She seems to do well on it. She agreed to consider it.
Tomorrow is a care conference, where all the doctors involved in her care are going to meet to discuss long term goals, prognosis, short term goals, etc. That will help Mark and I know what we are dealing with and make decisions based on this information.
Her fluids were further restricted yesterday. She did not care for that. Today her hemoglobin is low so they thought she may benefit from getting blood. But the volume of blood must be subtracted from her total fluids, so she will get even less to drink today than yesterday. Not a pretty picture.
Today Dominic is 8 years old.
In the Word Amoung Us for March 20th the writer speaks of our walk with God. "As we are carried farther and farther along in our journey of faith and trust, we are meant to enter more deeply into the fulfillment of God's plan for our life. Our journey ultimately ends in heaven. No matter where we are now, God is calling us to go deeper. Through our ongoing conversion, through our obedience, our faithfulness, and our acts of mercy, we can all draw closer and closer to our destination. No doubt we will experience trials but these are only to refine us for the deeper waters and make us fit for our heavenly home...No matter where we find ourselves in the waters of life, we must keep our eyes fixed on Jesus and his call to life on high. That is our goal; there will be no more pain and no more sorrow there, and we'll be free of the sins and failings that beset us here. As long as we keep our faith alive, and keep pushing out into the waters of life, we can be certain we will one day experience all the fullness God desires for us."
Monday, March 19, 2007 11:14 AM CDT
The weekend was rough. I worked Sunday. It was difficult to be away when things are not going smoothly. I am filled with such frustration. Every area seems to be falling apart and I can't stop it no matter how hard I try.
Every time Francesca gets down to .2mcg of milirinone, she does not do well. She has more support this time in the way of additional medicine but she stopped eating, her belly got big, her BUN is rising. The docs chose not to turn it back up. They are giving her more time. Her enalapril was increased again today (the oral medicine to take the place of the milrinone.) The diuril was stopped yesterday because of her BUN increase. Her face is puffy. She is crabby. She had an Echo today to check ventricular function. Do not know what that shows. She was probably discussed in cath conference today. Don't know what was said. Looking for lots of answers on every front. What to do about the kids, Mark, Frankie, going home, etc. I want to discuss taking her home on milrinone because she obviously does better on it. Don't really know the full ramifications of that though. Still in need of prayers for healing and discernment.
"Answer when I call my saving God. In my troubles, you cleared a way; show me favor; hear my prayer." Psalm 4:2
Saturday, March 17, 2007 4:12 PM CDT
Francesca slept better than usual with chloral and more fluid. Mark stayed with her last night while I made a brief visit home. Everytime Frankie gets down to .2mcg of milrinone she gets into trouble. She stopped eating which is a big change in her condition, so she is being continuously tube fed. She is not as bad as she was last weekend but she is on a lot more medicines, especially IV lasix which seems to keep her from getting worse. Right now there are no plans to turn milrinone back up, just continuing to observe. Her mood is pretty subdued. The only time she ever smiles is when her sisters are here.
The trip home is bittersweet. The time goes so quickly. I am torn by not being at the hospital, getting food the kids like in the house, socks in their drawers, bags packed for the next week, my clothes washed, be present to the kids I've neglected for so long. When I'm home I never want to go back to the hospital and feel bad for Frankie who has not the pleasure of even a short visit home. It is difficult to think that she has gone from recovery of one surgery into a need for another. It is hard to know where this is all going. There is so much uncertainty. I don't know what they will try next. While at home folding laundry I listened to one of my favorite CDs, Natalie Grant's Awaken. A song (Bring it all Together) she sings reminds me of God's promise "..everything's gone wrong, Can't find the strength to hope for a better day. We may not understand the reason but know His promise will remain. He will take your pain, your doubt and bring it together for your good."
Thursday, March 15, 2007 4:07 PM CDT
It has been another trying day. She is not sleeping well. Still fluid restricted. Very irritible. Sometimes I give her an hour's worth of fluid. Sometimes I gamble and give her 2 hour's worth to make her more satisfied. At 4am I did that but her roomate was awakened at 5am so that woke up Frankie and she could not drink so she starts screaming in frustration. She was up at 12am, 2am, 4am, then 5am. The only thing that placates her is to walk the narrow halls in the wagon. So we walk for hours. If I stop she yells, "Walk!" She won't respond when others speak to her. She won't respond to any toys here. She does not care about the fish in the tank. She sometimes will raise her eyebrows when the nurses are feeding a baby at the desk but otherwise not a very happy camper.
The cardiologist is moving very slowly on the milrinone wean. No adverse effects so far. But that just means it will take longer to get off, if at all. I took a tour of the Cleveland Clinic rehab hospital yesterday. There seems to be a lot that could benefit Francesca but it does not seem to be open for discussion until she is off of milrinone. If that is the case, we should be able to go home and I am not really interested in going elsewhere after 2 months away from home. Dr. Arruda is the cardiologist Francesca will be following up with after discharge. She is starting to come by everyday and learning about what decisions are being made regarding her care. She is very kind and is sorry Francesca is having such a hard time. She is trying to advocate for us to have a private room but it is so busy here, it is probably not an option. It will be nice to have one person to go to as the cardiologists on service will continue to change weekly.
Dr. Mumtaz stopped in to say how much improved her chest xray looked today. He was quite concerned initially when we first came from Michigan that he could not fully re-inflate the lower portion of her R lung because it was consolidated for so long. It looks so much better now. He is pleased at how well she did with the whole diaphram plication and pleurodesis. He said how much it will help her to have more space to breathe, the lung recovered, the chest tube not draining, the area healed, etc. He seems optimistic that she will make it home eventually and be able to wait at least 3 months before having to have another surgery to repair the valves and VSD. He wants to buy as much time as possible so her kidneys can continue to heal and her body recover from all the insults of the last 8 weeks.
We are fortunate to have such compassionate professionals caring for our daughter and a center so close to home that is able to accomidate her complex condition.
Today Terri and Linda from Mark's work brought cards and gifts from the agency. I was very moved by the thoughtfulness of so many who continue to give to our family so generously. Many thanks.
I am going to try to make it home Friday night to see if a good night sleep can stop the migraines and spend some time with the kids. Looking for some folks to stay with Frankie from Friday around 2pm until Saturday afternoon. If you can fill in some of that time call Mamie 330-241-1328.
Wednesday, March 14, 2007 5:38 PM CDT
Jean would like to go home and see the kids. She is looking for some help on March 16, Friday at 2 p.m. till about Saturday about noon. It could be 2 people splitting the time or one. Jean would have a schedule that you could follow, along with her cell phone in case you have questions. There is always a nurse assigned to Frankie as well.
If you are willing to help sit with Frankie up at the hospital please give Mamie (Germaine) Wilson a call on her cell phone 330-241-1328.
Wednesday, March 14, 2007 7:41 AM CDT
Francesca has a very hard day yesterday. She was NPO after 10am which which is so hard to explain to a already fluid restricted 2yo. Why she can have something to drink one minute and nothing for the rest of the day. The cath schedule ran late. All three cases were not straight forward. She did not go in until 5:30pm. She was cranky and irritible all day. Did not sleep much the night before.
Nevertheless, I cannot describe the experience of walking her into the cath lab. I would not have been allowed to do that had we been in Michigan. Not only was I allowed to accompany her, we were greeted by a crowd who know her and welcomed her. Former ICU nurses that cared for her when she was born. Molly, our cardiologist's nurse practioner; Dr. Arruda, Francesca's cardiologist who would do with the echo during the cath; Dr. Vener, who put her to sleep while I held her. There was only one man who did not know her and he was amazed at everyone's reaction to this patient. Molly told him, "You don't understand, she's our girl!"
The procedure went smoothly. Dr. Latson said the news although not great is the best we can hope for. She will need surgery to repair the leaky valves, including the Contegra conduit that acts as her pulmonary artery but it will not be immediate. He hopes we can wait 6 months. The goal will be to again attempt to wean her milirinone but be as aggressive as possible with all other medications. He gave about a 75% chance of that happening. It is going to take a few weeks to make that happen.
She did not get back to her room until 10pm. She was in 2liters of oxygen, satting in the 80s. She was febrile and working hard to breathe. She peed over 400ml after lasix and diuril, temp came down later with tylenol. She tolerated fluids but it has been a long, stressful 24hrs.
We have much to be grateful for but we have a long way to go. We could never survive this ordeal without the amazing support of an incredible community of caring people.
Monday, March 12, 2007 10:21 PM CDT
Quite an interesting conversation on rounds this am. Dr. Latson came. He is the eldest cardiologist here at Cleveland Clinic. He specializes in cardiac caths and has done all 6 of Francesca's caths. I'm guessing Dr. Mumtaz asked him to review her echos and give his input. Dr. Latson was on service the week we returned from Michigan. Knowing Frankie well, he has been a good advocate. He pointed out that 8 weeks after surgery she is still on a good bit of support (IV medicine) and should be further along. He felt strongly that we needed to know exactly what we are dealing with and was initially going to do a sedated echo today. Soon he returned to say that he just added her on to his cath schedule tomorrow. She will be third case. He is scheduled to go out of town Wed for 2 weeks. Being the best in his field, I do not want anyone else doing it. It may be a long day but we should get specific information about the valve leakage, velocity of blood flow, congestion in lungs, etc. They will do a transesophogeal echo during the procedure which allows them to get the best ultrasound view of her heart while deeply sedated. This will be her 8th intubated procedure in 8 weeks. Hopefully, it will go smoothly and she will be extubated as soon as they are finished. No interventions are planned, just investigational pictures and measurements.
Sunday, March 11, 2007 9:13 PM CDT
Frankie has had a rough couple of days. The echo shows a severe amount of regurgitation in her valves which means her heart is not beating efficiently. It is a form of congestive heart failure. They are not sure if her decreased activity is complicated by not tolerating the formula and stooling too much plus her not feeling well. They are trying to turn down her Milrinone and add a bunch of meds that she could take at home so we are not at full therapy yet. Not sure how she will be when we are ready to go home so they will continue to watch and do echos. There is severe regurgitation in both valves and not a good amount of squeeze of the ventricals. The ventricals squeeze against the septum but there is so much patching material from this last surgery that they do not have anything solid to squeeze against. They are trying to improve the problem with medicine.
When I left for a couple of hours with the kids on Sat. I returned to find her abdomen extremely enlarged. She refused her formula(now you know something is very wrong!) I called the nurse who called several doctors. They decided it was her liver. They increased the milrinone back up to what it was days ago. Gave lasix and diuril IV and within about 8hrs her abdominal girth was down 6cm and she was drinking again. She repeated the whole process again on Sunday. Stopped drinking in the afternoon. Belly got bigger. We tube fed her formula. No change on the milrinone, same dose as yesterday. Gave lasix and diuril but at 4am started drinking again. Very puzzling. The cardiologist will may be surprised when he returns from his weekend off. He is expecting milrinone to be off. We will see what the plan is for today.
Thank you for the continued prayers and all that you are doing for our family. You are all such a blessing to me and my family.
Saturday, March 10, 2007 6:16 AM CST
Francesca is still experiencing some fatigue. No one is sure the cause. Temp was lower overall yesteday. She is having some frequent stools that were sent to look for infection but is probably due to not tolerating the little bit of formula she is allowed to have. Her fluids are restricted because the less fluid "on board" the less harder her heart is working. Dr. Mumtaz pointed out in rounds yesterday: her kidneys have recovered somewhat, the chest tube issue is mostly resolved, now the main focus will be her heart function which is not very good at this juncture. The echo continues to show severe regurgitation of both valves, which means there much congestion in the heart, which can make the lungs wet, the liver enlarged. It could be why she is so fatigued. He assured me she is not at full therapy though. She is in transition from milrinone IV to multiple meds po to take its place. She is on 2 diuretics twice a day to take fluid off and many other medicines but he is not done tweeking. In the meantime she cries for more fluid for which I can not give her. She is tired of being here and refuses to talk to anyone. She is too young to understand the restrictions. It is very tiring.
The baby I asked for prayers for some time ago is doing well. He was being fed a bottle at the desk this am! That is one thing that engages Francesca's interest.
Dr. Mumtaz has been involved in every aspect of her care from the formula she is drinking to rehab options, medications, tests, etc. He is very attentive to us as a family; very caring and concerned about her well being.
Friday, March 9, 2007 5:53 AM CST
Francesca did not have a good day yesterday. She had a hard time just sitting up in bed. She could hardly drink her hourly amount before falling back into her pillow saying, "Sleep, sleep." So unlike the day before when she was up trying to make her way to the chair. Too much exercise? She was up 5 times just like the physical therapist recommended. Fever? Temp high was 38.5; the 2 days previous were 39.5, 39.3 respectively and did not act tired at all. None of the 3 people who saw her doing well the day before (Dr. Mumtaz, the cardiac fellow, and the cardiac nurse) were there yesterday to see the drastic change in condition. Sometimes I think they look at me and think I am nuts. Sometimes I think I am losing it. With Francesca nothing is ever straight forward. How does one determine whether something as generic as lethargy is due to fever, overexertion, fluid overload, or heart failure? When the "players" are ever changing and she does not follow the typical course it makes those decisions more complex and certainly anxiety provoking for me. She will have an Echo today that may show her heart function. Hoping for a better day today.
With much gratitude for your continued prayers and support.
Thursday, March 8, 2007 6:32 AM CST
Francesca seemed to be having a decent day yesterday. Did well standing. I would put her cup in the chair every hour and helped her make her way to it. She was motivated to get there, did not realize she was totally letting go when she picked up her cup with both hands to drink (I supported her slightly). Then we would make our way back to bed. Still incredible weakness but progress from the day before. Later in the afternoon, the chest tubes finally came out. After 6 long weeks they were pulled. It was painful but a relief to have them gone. To this point Francesca has been on oxygen to decrease pulmonary resistance. She did not need it to keep her sats up. She had been on 1/4liter reading 95-96% all day. The chest tubes came out she was reading in the 80s. Her oxygen was turned up to 3/4 liter reading 89-92%. She was working a little harder to breathe. A chest xray was obtained (her 4th of the day); no pneumothorax noted but it looked much "wetter" than the morning one. She got a dose of lasix which dropped her potassium. She got a supplement x1 and is in the normal range this am. She is still very thirsty and restricted. After this episode they surely will not let her have more today. Will wait to see what changes will be made. It may mean she is not tolerating the wean of the milrinone (the IV heart medicine). So much for our plans to visit the play room now that she is more moble.
Wednesday, March 7, 2007 12:11 AM CST
Francesca has adjusted to the step down unit. Overall the mechanical pleurodesis seems to be working but chest xrays still have small fluid accumulations. Yesterday the chest tubes were withdrawn 1cm and a pocket of fluid was able to be evacuated. Dr. Mumtaz wants her up and walking. After 7+ weeks in bed she has a great deal of weakness. I started working with her yesterday, getting into a standing position. She acts scared and trembled at first. After several times, she is getting used to the idea and the feel of being upright all over again.
After 6 torturous days of nothing to eat or drink, she is still so thirsty she is drinking her nasty tasting formula. She had to be bribed to take food at home but now is drinking the small amount of formula she is allowed to have. Even through the night, she was up every 2hrs to drink her allotted amount. Today she will stay at 80% maintenance but go to full strength Portagen. She is also taking medicines by mouth. Still trying to get her fluids/electrolytes balanced while transitioning IV fluids/meds to by mouth/GT. The next big step will be to get the chest tubes out. Get off milrinone which is an IV heart medicine. Transistion to heart medicines safe for the kidneys that can be taken by mouth. Address the moderate to severe regurgitation in both her heart valves. Getting her walking so she does not have to go to a rehab hospital after we get out of here. So it is going to be a little while yet. She acts very sad.
Things at home are getting increasingly difficult being gone for so long.
He whose heart is kind beyond all measure
Gives unto each day what He deems best,
Lovingly its part of pain and pleasure,
Mingling toil with peace and rest.
Lina Sandell
Monday, March 5, 2007 10:36 AM CST
Francesca had a fairly stable weekend. She is going to the OR today at 1:30 to have the dialysis catheter removed. She will recover in ICU and if stable will go to step down. She has been NPO since midnight (and today was her first day to eat but that is not to be). She will receive formula post-op when stable enough by mouth about 10 cc per hour to see how she does and they will increase that every 4 hours.
Mamie has mentioned that several have called to put a VISA card together, thank you to all. Mamie said she will collect till Friday and then get it to me.
We appreciate all that you are doing. Prayers, donation for meals, help with kids. Continue to pray for us as a family.
Thursday, March 1, 2007 9:33 PM CST
Ever since Jean has arrived back in Ohio I have been asking how we can help. Praying is great but hands-on help would be nice. Her suggestion was gift cards for specific places to eat since they are always running around and in different locations with the kids. She suggested Subway, Gionino's Pizza (local # 330-678-5005), Evergreen Buffet (330-673-8882), Guarino's (216-231-3100, the place they like to go as a family in Cleveland) and Acme or Giant Eagle for groceries.
She also was looking for help at home with the kids. Mark's mom and dad have helped this week. Next week she has people helping every day but Monday, March 5. Can anyone help at the house that day? Then the week of March 12 we need to find people to cover each day. Even if Jean and Francesca make it home, I'm sure Jean could use an extra pair of hands around the house catching up.
March 5th is the first day we need to cover, we can work from there.
Germaine (Mamie) Wilson
gwilson@wyseadv.com
cell 330-241-1328
Francesca was up a lot last night but mostly because she was thirsty; her pain seems to be more under control since extubation. Plan today is to get her moving to help expand her lungs because there is a small fluid collection on the right side. Echo will see if her heart function has improved since she has so much less fluid circulating. She will be allowed to have just enough drops of fluid to moisten her tongue which may pacify her minimally.
Thursday, March 1, 2007 10:41 AM CST
The plan for Francesca is to extubate (take her off the ventilator) even though the chest xray is not markedly improved. She has a large leak around her ET so that the desired pressure cannot be applied to get rid of the atelectasis. She will have to do it on her own which will be difficult being in so much pain, one tends to breathe more shallowly instead of deeply. Her presidex drip was turned off in anticipation of extubation but is resting with chloral hydrate for the moment. It will probably be done this afternoon.
"I will trust and not be afraid." Is.12:2
Mark and some of the kids are vomiting.
5pm EXTUBATED! Doing well. More comfortable.
Wednesday, February 28, 2007 6:36 PM CST
Francesca had a hard time staying comfortable today but we did a better job managing her pain than last night. Her favorite is chloral hydrate, her dose was doubled and was given every 6hrs. Instead of waiting until she was very agitated, we tried to stay ahead of her pain. She stayed on her dilaudid and presidex drips continuously. She had some low blood pressure issues intermittently but was OK. There were many complications that could have arisen by now that have not. So it seems she is doing OK. If her chest Xray is much better in the am she can be extubated. If not, we may need to do this longer.
Dr. Mumtaz asked me to pray for him tomorrow. He has a difficult case involving a little baby. I know you will join me in praying for a favorable outcome.
Wednesday, February 28, 2007 6:13 AM CST
Francesca's surgery went smoothly. The diaphram was lowered and tacked down. The old chest tube was taken out and replaced with two much smaller more flexible tubes that only drained 80cc in the last 12hrs as opposed to 415cc. The incision in her R side is far more painful. It was like trying to drug an elephant last night. She came back with a dilaudid drip (she had one in Michigan at 15mcg). It is now at 30mcg, had to add a Presidex drip, countless boluses, Versed, Chloral Hydrate and she would still wake up, talking around her ET tube saying, "MOM, water, ice, sit up, ouch, hurt." The resident could not believe that she was so awake despite all the drugs she had. Chloral is her favorite and would get about 2hrs sleep when that would take effect. Frankie should make it to rounds on the latest dose of chloral. I don't think they were planning to extubate today but will have to rethink that plan or Francesca will do it herself! Will update later.
After rounds, now that she has so much sedation she is currently sleeping as they are standing outside her door. Figures! Dr. Mumtaz, the surgeon, wanted to give the ventilator another 24hrs to further expand her lungs. We will lose some ground once the ET tube is out and is not receiving positive pressure delivered by the ventilator. It helps expand the area in the lower R lobe that was compressed by the diaphram and fluid. The challenge will be sedation! Another roller coaster ride. Hopefully, we will find something that works more effectively.
"I know that you can do all things, and that no purpose of yours can by hindered, I have dealt with great things that I do not understand; things too wonderful for me which I cannot know." Job 42:2-4
Tuesday, February 27, 2007 8:38 AM CST
After many long discussions with several members of staff, Mark, and me, it was decided that Francesca is going to the operating room today to try to address the chest tube drainage. Her diaphram on the right side has not been working since her heart surgery. Sometimes a nerve is nicked in the operation that interferes with the movement of the diaphram. It then rises up crowding the lung that cannot fully expand. In addition, fluid has been accumulating around the R lung inhibiting its movement. The current plan is to tack down the diaphram to allow the lung to expand more but to also irritate it enough for it to adhere to the chest wall, thereby, not allowing the fluid to collect there. U of M does not do this kind of therapy so it was not an option there. Dr. Mee would not have tolerated a draining chest tube more that a week much less 5 weeks. The incision will be on her R side and can be more painful than a midline incision (like the one down the middle that she had for heart surgery) because she can feel it with every breath. They may use an epidural in addition to help her pain so that she will breath more deeply in hopes of taking her off the ventilator in a few days. Please pray that the procedure goes well. She will be second case today.
4:30pm Francesca just went to the operating room. I was permitted to come into the OR with her until she fell asleep. She was initially apprehensive but was comforted by holding my hand until the anesthesia took effect.
Despite all the turmoil of the last several days I am surrounded by grace that has kept me strong through every circumstance. It is a direct result of the constant prayers. Thank you!
I will try to update later after the procedure is over.
Monday, February 26, 2007 11:14 AM CST
Francesca had a more stable night. Her electrolytes and fluid balance had less fluctuations. She is still on fluid restriction and asking for water. She can only have a tsp an hour. She has gone without dialysis since last Wed. She is still peeing with diuretics but has not achieved 100% function. BUN is 22. Creatinine is 0.7. Still contemplating doing something about the chest tube by week's end. Working on feeds. Up to 35cc 1/2 strength Portagen through her GT, tolerating well. Looking somewhat better today after a difficult weekend. Echo was done this morning. Just had a visit from Jeff, from Child Life Dept. He will be leaving Cleveland Clinic. Jeff has been with us from the beginning. He gave us our first tour of the ICU when I was pregnant. He helped us prepare the kids to see her for the first time. He has been a terrific buffer through the many hospitalizations, bringing Frankie toys, CD players for soothing music, etc. He will be missed. On a good note Molly, our beloved nurse practioner for our cardiologist, who has been gone for a long leave has returned today. Molly is the first person I call when something goes wrong at home, I have questions, need care coordinated, scripts, etc. Lots of coming and going. More later.
Sunday, February 25, 2007 11:32 AM CST
Francesca had frequent stools Sat. but is negative for intestinal viruses. It was decided she was not tolerating the 30 calorie formula. She had a potassium of 2.5 which is low so she was being treated for that. Later in the evening a draw off her IV line showed her potassium of 8 (very high). Her breathing was labored but chest xray was no worse. Had irregularities in her heart rhythum most of the night. Feedings were stopped altogether. They did not believe the potassium to be a true reading so they drew another level later and it remained the same. She was stuck peripherally x4 throughout the course of the night until finally at 0300 they decided in fact her potassium was 8! They agressively treated it but by morning her potassium was normal but her blood glucose was 24(very low)! They have been bolusing and rechecking all morning. Finally her potassium and glucose are normal for the time being. She looks weak and is thirsty. May start small amount of feedings later. At this point has been void of good nutrition for days. She was started on a diuretic and is peeing well in response. She has had no dialysis since Wed and looks like her kidneys have made some recovery although too soon to tell how much function she will have and what implications that will have in light of her heart and lungs. She remains to be complicated. No improvement in her chest tube output. One good thing is that the intensivist who followed her last week will be with us again next week. Continuity is great when she tends not to follow the typical course.
Your prayers are greatly appreciated!
Saturday, February 24, 2007 10:14 AM CST
Francesca is having a hard time. It seems that she may have rotovirus. She went up to full feeds of Portagen yesterday, a formula to treat chylothorax. She had frequent stools but now it seems that they are watery, foul smelling. I do not know if she is peeing but is losing fluid through the stool enough to stay negative. She is still losing over 200-300cc of protein-rich fluid out the chest tube everyday. Nothing can be done until she is well. Yesterday the plan was to give her kidneys some time to do their job before adding another insult. The end of next week they were planning to take her back to surgery to ligate the thoracic duct which would put her back on the ventilator for a few days. The alternative is to put toxic chemicals in her pleural space so the lung would adhere to the chest wall, therefore, not allowing fluid to accumulate there. Neither sounds like a pleasant option. If she does have rotovirus she will have trouble managing her electrolytes. Mark stayed with her all night and says she looks weak, not wanting to sit up. I took the kids home and spent the night. It was great to be with them again but overwhelmed with all that needs done. We had a great dinner at Guarenos restaurant, our favorite place in Little Italy, not far from the hospital. We met the owner, Nancy Phillips, a few days before Frankie was born. She has treated us like family ever since. It was nice to pretend that things were normal for awhile. I am going to try to work on a schedule for child care, etc. and see if I can work out coming home once a week, not to mention I have to get some days in at work in March. With this latest set back it is going to be awhile before she can come home. When it all seems like too much I just glance at the guestbook and know that we are held up by so many incredible people and a God who can foresee it all. So many have helped fill in the gaps from watching kids, giving birthday celebrations, meals, helping with science projects! Amazing how people have come through. We are forever grateful!
"O Lord to you I call; hasten to me; hearken to my voice when I call upon you. Let my prayer come like incense before you; the lifting up of my hands, like the evening sacrifice." Psalm 141:1-2
I ask for your continued prayers for Francesca's godfather, my uncle, my mom's brother, Fr. Phil Pritt. He has been a father figure to me all my life, an amazing prayer warrior for Francesca. He is at Parma Community Hospital with heart trouble. Mom is going today to find out the plan of care for him.
Friday, February 23, 2007 10:02 AM CST
Francesca had a good response to getting a large dose of albumin followed by lasix. She peed a lot in the morning; enough to still be negative in her water balance by this am. She had fever again during the night but lost so much water she is feeling better today. She is sitting up playing. Physical therapy came and worked with her. She did well because she felt better. The docs are making big changes today. Going to try to wean milrinone, a IV medicine she has not been able to get rid of yet. Start digoxin. They are hoping she will continue to pee without albumin but will get lasix if needed. Trying to avoid dialysis but will use it if necessary.
Had a rough day yesterday, doing better today. Thanks so much for all the prayers and support.
Mark is bringing up all the kids today after the boys get out of school. Looking for someone to stay with Frankie so we can all go to dinner. If you can help call Mark's cell 330-714-9603.
Thursday, February 22, 2007 5:40 AM CST
It has been a hard transition from U of M to Cleveland Clinic. The helicopter ride was amazing. The transport itself went smoothly. The nephrologist who is so well known has been out-of-town. The first day here the nephrologist covering changed her dialysis to just 12 hrs a day. By nightfall we were back in the ICU. Two night of dialysis by a machine who automatically fills and drains her peritoneal cavity was not working. I explained how beautifully and gently the manual system worked. It took until the third night for him to consider trying it. We had good results. The problem remains that we are having difficulty getting them to predict her fluid balance. Although some of her kidney function is returning we cannot guarantee she can pee off more than her IV is putting in. Her chest tube remains a serious issue. Output is not decreasing at all. Now the cardiologists are talking about ligating her thoracic duct, the very thing Dr. Bove said he would not do! She is having more reguritation of her heart valves which just may be due to extra fluid on board. Her BUN and creatine are finally normal, an argument for stopping dialysis, but we cannot allow her to continue to be positive in her fluid balance.
It has been very difficult. We wanted to be closer to home but she is still too ill for me to feel comfortable leaving. I have yet to see the little kids. Please continue to pray.
1000 Mark stayed all night. He was so helpful crunching numbers making sure her ins and outs come out right;making sure her drains were good. He was here for rounds. Dr. Chand, the nephrologist we have been waiting to meet, also made it a point to be at cardiology rounds so everyone is in on the plan. She is still going to discontinue the dialysis today, even though we had good results last night. She will be watching numbers throughout the day to make sure Frankie is not getting too positive on her water balance. She is going to give albumin IV followed by lasix which had good results last time. Hopefully, this plan will work and will not need dialysis anymore. If she is not ready yet we can go back to doing it.
Just when I feel like I can't do this much longer, I read the guestbook and am encouraged by your words of support and constant prayers. Thank you so much!
Monday, February 19, 2007 6:36 AM CST
So far we are still a go for the flight to Cleveland. They are going to send her with the IV line as is. As of 7am lab had not stuck her for labs yet so it is unlikely the values will be back before we leave. She continues to be stable for now but her dialysis will be capped off for the flight. It may be hours before it is restarted so she may have some catching up to do for awhile. I have "butterflies" beyond belief but feel privledged that I will be able to accompany her on the helicopter, which is usually not allowed. Will update when we get there. Pray for a safe trip!
"The Lord is my light and my salvation whom do I fear? The Lord is my refuge; of whom am I afraid?" Psalm 27:1
Sunday, February 18, 2007 6:30 AM CST
It was great to see the big kids. We had a nice visit. Gina stayed overnight and may go back with Mark's brother, David, today or with Mark Monday.
Francesca had a PICC line placed in her L arm last Monday which is supposed to be a long term way to deliver IV fluid/medications and to draw off blood for lab work so she does not need to be poked. She has bad veins and it would be nearly impossible to get 5cc of blood every morning by sticking her. The line will not draw back. So thus far this morning she has no lab values. She has urinated more in the last 24hrs then she has in the last 3 weeks. Those are 2 reasons that may delay our return to Cleveland. If the nephrologist wants to back down on her dialysis it may be a bad time to transition to a new doctor, facility, etc. Francesca will still require close supervision for awhile as changes are made. The IV line will need resolved, also. I will see what they say on rounds. Thanks for the tremendous outpouring of prayers and support. We are very blessed.
Here is a passage to strive towards:
"My portion is the Lord. I promise to keep your words. I entreat you with all my heart: have mercy on me in accordance with your promise. I have examined my ways and turned my steps to your decrees. I am prompt, I do not hesitate in keeping your commands. Though the snares of the wicked surround me, your teaching I do not forget. At midnight I rise to praise you because your edicts are just. I am the friend of all who fear you; of all who keep your precepts. The earth, Lord, is filled with your love, teach me your laws." Psalm 119:57-64
Saturday, February 17, 2007 7:21 AM CST
Francesca had another uneventful night. Weight is the same. Things are stable. When Dr. Bove decided that he did not want to take her back to surgery, the team decided that she no longer needed to stay in Michigan and began plans to move her back to Cleveland Clinic as soon as Monday. It was quite a shock to think of moving so quickly but to be closer to home is very exciting. There are many things that could keep us from going so I will remain cautiously optimistic and take it day by day. The attending said if she stayed this stable she would be moving to moderate care anyway with new doctors and nurses so why not make the move to Cleveland now. Sounds good to me!
My best friend, Mamie, is bringing up the big kids today! Can't wait to see them.
Friday, February 16, 2007 3:22 PM CST
Francesca slept well last night. Nurse Pam had her in the high chair when I came in this am! She has had two decent days in a row. No changes in dialysis. Her weight has been stable. Today her BUN (52)and creatinine (1.3) have come down. She is still urinating some. Chest tube drainage contines to be a nuisance. According to the literature, the majority of patients respond to a change in formula, then a week of NPO, which we have done. We were waiting for Dr. Bove to decide whether he wanted to try to surgically ligate the thoracic duct. He does not. So we will continue to manage it medically. Mark has been amazing. He has been a constant companion and made this very difficult stay manageable. No doubt Francesca benefits from his presence as much as I do.
Thursday, February 15, 2007 6:44 AM CST
Francesca continues to be a problem child. Yesterday she was started on antibiotics as a precaution x48hrs. becasue she had fever. She had been on a week of Zosyn earlier in this hospitalization. As it was infusing into her IV she began to cough and gag. I noticed a big red blotch across her abdomen. Then I saw what looked like bug bites going from her R shoulder, up her neck and face. She was having an allergic reaction. I had never seen it happen so suddenly and so textbook-like right before my eyes. Her symptoms resolved with IV benedryl but it took much longer for my blood pressure to come down! She had periods where she sat up and listened to stories, drank some water but she has had more severe shaking episodes. Her narcotics have not changed recently so it does not seem like withdrawl. No one knows for sure. Her weight remains the same but her BUN went up to 61, creatinine is 1.4 Chest tube drainage is decreasing (125cc for the last 24hrs.) Do not know the plan for today. I will know more after rounds. I don't know how much longer we can keep up this routine.
Things with the kids are getting increasingly complicated.
I received a card yesterday:
When all the world is looming dark and things seem not so clear,
When shadows seem to hover 'round, Lord, may I persevere.
When it seems everything's been tried and there's no way to go, Just let me keep remembering sometimes the journey is slow.
I may just need to stop and rest along the path I trod,
A time to try to understand and have my talk with God.
As I gain new strength to carry on without a doubt or fear
Somehow I know things will be right, and so, I persevere.
Anne Stortz
Thanks Debbi
Wednesday, February 14, 2007 6:47 AM CST
Francesca remains to be a challenge. Besides balancing fluids, there are so many electrolytes that get out of whack when the kidneys are not functioning. So they tweek this fluid, decrease that and see how it comes out in the labs the next day. I am able to follow the trends and begin to correlate the progression of things. The treatments for a heart condition, renal failure, and chylothorax can often be contraindicated so it becomes more complicated to treat. Frankie spiked a temp to 38.5 Celcius (101.5 axillary) at 0300 and was cultured again. Increased stooling again makes it difficult to measure urine output without a foley. Her chest tube output did decrease yesterday (150cc in 24hrs down from 450cc 2 days ago) but still is too much to consider the problem resolved. She is not allowed to have formula but can have sips of water and does like that.
I had a fabulous and informative conversation with Dr. Pappez, the nephrologist married to the cardiologist. What she has observed is that about 25 kids a year that undergo heart surgery have some renal failure. All but 1-2 esolve before getting the long term catheter placed. The longer out we go the less likely her function will return. After nearly 3 weeks of dialysis, that was not particularly good news. She does continue to make some urine. It does seem to be bringing her creatinine down but not very efficiently. So we continue to wait to see what happens. Dr. Pappez's research is looking into some of the things that kids who develop renal failure have in common in order to predict some markers; hopefully, being able to intervene before the kidneys fail. Fascinating stuff. I shall be checking out what research is going on in Akron and Cleveland. She told me of an article that Dr. Mee wrote about, automatically putting dialysis catheters in a certain population of kids while doing open heart surgeries. He had followed some trends as well and was working to prevent them from going into failure. I wonder what would have happened had he did this operation? Nonetheless, I am learning a great deal and if we have to come home on it we will figure that out as well.
"With God all things are possible." Phil 4:8
Tuesday, February 13, 2007 6:48 AM CST
Francesca is looking better. All extra fluid is off. If the dialysis does not change soon, she will be too dry! Dr. Bove, her heart surgeon, has been out of town. He will return tomorrow. They will be discussing if ligating the thoracic duct would be beneficial. I am guessing he will be hesitant because she has so many adhesions from previous surgeries. His input will be helpful.
She will have to get used to having the IV and tubing coming from her L arm. She seems more fiesty this am. I will have more information after nephrology rounds this morning.
As difficult as it has been to be here, away from home and especially the separation from the children, God has worked in some very powerful ways. To sit back and watch gifted people work together to help children who otherwise would have no chance. There is a lot of bad news going around here but many happy stories too. Babies just born who have their tiny hearts repaired and progress on out of here. Others who come back for the next stage of their heart repair. We've met some incredible people. Please remember in your prayers, Sawyer, Frankie's favorite roommate who had a rough time of it initially but is progressing nicely on the floor. Praise God! Many good lessons to learn through the trials.
"No branch can bear fruit by itself; it must remain in the vine. Neither can you bear fruit unless you remain in me." John 15:4
Monday, February 12, 2007 6:58 AM CST
Sunday was somewhat better. Still has issues with excess fluid. Pain managed better. Still peeing some. BUN down to 50 this am! Needed blood by evening which throws her fluid balance off because it is such a big volume. Increased dialysis cycles to every hour and that helped. She quadrupled her chest tube output which makes no sense. No one can explain it. Many questions to be answered today. Doctors changing service again today. New players coming into a very complicated patient. At least Mark made it up last night. More later.
2pm Francesca went down to the cath lab for a PICC line at 12:00 today. It is a form of a long term IV that can deliver medicationsand IV fluid and draw blood for lab work. We are waiting to see her now but apparently things went well. They were also going to check some pressures in the R atrium as if they were doing a heart cath to get some more information about how her heart is functioning and try to understand why this her chest tube is draining so much.
A chylothorax is when the lymph system empties into the space around the lung making it difficult to breathe. 3 weeks ago she had a chest tube inserted to drain that fluid. Putting her on a special formula usually helps that heal but it has not. She is going to be NPO for 7 days to see if that helps but after 3 days her chest tube output has only risen! More later
Sunday, February 11, 2007 6:29 AM CST
Francesca had a long and difficult day yesterday. Although her BUN and creatine stayed stable throughout the day the dialysis had to be restarted by evening because she was retaining so much fluid. By 2pm her weight was up 200gms. Her face, hands, feet were very puffy. Her name band had to be cut off because it was too tight. She had an extra Xray. She had increased work of breathing because her pleural effusion was getting larger. She was in pain, therefore, not taking deep breaths. She needed more oxygen. The nurse decided she was in too much distress to feed her. Her chest tube was draining large amounts of fluid. The docs discontinued her foley and she stopped peeing. She had to be straight cathed for a small amount. When dialysis was finally started it was at the lowest/slowest rate. Her lab work on paper did not look bad. The nephrologists were not here at the time to see that she did not look good. Late at night they did see her, increased the dialysis somewhat; more fluid came off. Her weight is still up but things could be worse. Her BUN is down to 62, creatine 2.3. We have much to accomplish today.
Mark could not come up last night. He had a flat tire.
Today is Sophia's 6th birthday and I will not be with her.
"If a man has a hundred sheep and one of them goes astray, will he not leave the ninety-nine in the hills and go in search of the stray?...In just the same way, it is not the will of your heavenly Father that one of these little ones be lost." Matthew 18:12-14
Saturday, February 10, 2007 6:42 AM CST
Francesca had the long term peritoneal catheter placed at 2:30 Friday afternoon. The procedure was done by, Jenna Hirsh, a brilliant and kind heart surgeon who has also done some abdominal surgies as well. I specifically requested her for that reason. Everything went smoothly. Francesca returned to the room without difficulty. One of the cardiac attendings (who is married to a nephrologist) commented on how they like it when the cardiac surgeons place the peritoneal catheters because they are so precise and tend not to leak. They had hoped not to do any dialysis last night so that Francesca's body can begin to adhere to the catheter. She remained NPO all day and night, just running IV fluid. Her BUN at midnight actually fell from 75 to 74. My unofficial explaination is that without dialysis, the only way it could have come down is that her own urine output cleared some waste products. I will verify that with nephrology when they round this am. Her R chest tube continues to drain over 100cc a day. Very puzzling having not been fed or having little dialysis yesterday. She is having issues staying comfortable.
I continue to be upheld in a state of grace because of the prayers of so many.
"We all must go through many hardships to enter the kingdom of God." Acts 14:22
Friday, February 9, 2007 6:09 AM CST
Francesca did not get her long term catheter placed yesterday because the first case had many complications and did not finish until 4pm. She is scheduled for 2:30pm today. It is hard to go a whole day with little nutrition, gear up emotionally, and have to do it all over again today. She actually urinated 420cc in the last 24hrs on 1/2 maintenance on q12 lasix, meaning making more urine while getting less fluid than usual, on less diuretics (medicine that makes the body excrete urine). Whether that is enough to stall the procedure is unclear. Too little too late I'm afraid but we will see when nephrology rounds this am. The short term catheter she is using is only supposed to be used for 72hrs. Her 3rd one was placed Sunday. It has been over 2 weeks on dialysis. They are done waiting for her to pee.
She has been up since 3am. Getting very fiesty. Picking at her lines, her incision, her monitor leads. Still has a R chest tube, R groin central line, and foley. She is way to alert and past time to be home.
Things with the kids are getting very complicated.
"If we share in his sufferings, we also share in his glory." Romans 8:17
Thursday, February 8, 2007 6:04 AM CST
Francesca will be going to the operating room this afternoon to have a Tinckoff catheter placed in her abdomen. This is for long term dialysis. It allows larger volumes of dialysis to be given. It is more secure. It does not mean her kidney function will not return. It just will do the job of the kidneys more efficiently until they choose to "wake up". If and when the kidneys return to doing their job, the catheter can be removed. Dr. Hursh, a cardiac surgeon who also has done some general surgery, will perform the operation. Francesca will be her 3rd case today. They do not give exact times because of how things go around here. I will try to update later.
She had a quiet night. My mom went home. Tony and Marlene made it up safely.
Dr. Smoyer, the nephrologist, has been amazingly accomidating. Not only has he been technically effecient: (her BUN is 77 this am) but has called Mark, made sure all of our questions were answered thoroughly, gave us reassurance, feels confident that her function will return. He has been very kind. We are in good hands. Pray that everything goes smoothly and in thanksgiving for such compassionate care.
4:40pm Dr.Hursh just finished her first case that had many complications. So after being without food all day, we are on the operating room schedule for tomorrow at 2:30pm. Ironically, at only 1/2 maintenance fluids and only lasix q12hrs her urine output was not bad. We will see what the nephrologist will say when he rounds tonight.
Wednesday, February 7, 2007 5:26 AM CST
Francesca had a quiet night. I enjoy being part of the 4am bath, weight then 5am xray. The dialysis is going well. The new combination of dialysis fluid and special formula seem to be working nicely. They decreased the protein in the Portagen which is bad for her kidneys, increased the glucose to give calories needed for good nutrition and her BUN is came down to 85. Still making about 200cc of urine. Not enough to stop dialysis.
The echo yesterday showed that her R diaphram is not moving. They may not intervene because she is not having difficulty breathing. If they had to go in to ligate the lymph duct that is leaking into her pleural space they might tack down her diaphram at that time. Her heart function is OK. The contractility could be helped by medicine like digoxin but they are hesitant to give it because of her poor renal function. So everything hinges on pee. Who thought pee was so important. Now I know why Dr. Crowley is obsessed with pee and warm toes!
I can't begin to describe the experience of being here this long. I am so fortunate to have such an abundant support group. I can't fathom surviving without such prayer warriors. Despite the amazing things they do here it is a place of very bad news. Please pray for the family of baby Sophia who fought a very long and hard fight after surgery and is now with Jesus. Pray that her family may be comforted.
"The Lord will guard your coming and going both now and forever." Psalm 121:8
Tuesday, February 6, 2007 6:07 AM CST
Francesca continues to keep everyone on their toes. Much discussion yesterday between renal and cardiology about all that is going on. She had a fever; was recultured. Still on antibiotics but no bacteria has grown in the previous cultures. Still debating whether to keep her on them. Met the new kidney doctor on service this week, Dr Smoyer. He took some time to get acquainted with her case. He is coming on at a time when we are trying to make some big decisions. There is concern that after 10 days of dialysis, she is still not making enough urine. It sounds like they may give her 14 days on dialysis before deciding to put in a Tankoff catheter (one for long term use). That involves going to the operating room to have it placed. We also discussed the possibility of going to Cleveland if this going to be a long recovery. Dr. Smoyer knew of Dr. Chand, head of pediatric dialysis at Cleveland Clinic, and though we would be in good hands. The foley catheter was reinserted to accurately measure her urine output separate from stool.
Please continue to pray that everyone will make the best decision for Francesca. Although it would be easier to be closer to home, I do not want to compromise her care in any way. Better yet if she just peed we could stop dialysis and just have to contend with the chest tube.
Speach therapists came to evaluate her swallow. Are concerned that swallowing even small amounts of water causes her to cough. They agree that no medicine or popsicles should be given, just water for fear of aspiration. They also think that we are on the outer limit, 2 weeks after extubation that this should be from weakness or from having the tube down her throat. Will reevaluate in 2 days. May have to do a swallowing study.
Each day she gets a little stronger. She can almost support her weight sitting up. Taking water. Saying more words. She slept during the day. When she has fever she acts fatigued. Had a restful night without much medication.
Also spoke with Dr. Mumtaz, surgeon at Cleveland Clinic. He has been keeping up with her progress. Welcomed us back, if it is safe. He has been so attentive, so kind, and accomidating.
Your prayers, notes, cards, and well wishes continue to keep me encouraged. Everyday I log on there is someone who surprises me. I am amazed that so many continue to follow this long. We are moved beyond words.
"He gives strength to the weary and increses the power of the weak." Isaiah 40:29
Monday, February 5, 2007 5:37 AM CST
We survived yesterday. Francesca did pretty well with the reinsertion of the peritoneal catheter. The way it is positioned is makes it very difficult to secure for a child who is a 2yo, 3weeks post-op who no longer is sedated. Everytime she would roll or kick it threatened the integrity of the catheter. Mark and I searched for ways to secure it. We employed the help of our favorite cardiac fellow, Ma Ling. She used the hard plastic top of a feeding bag that totally surrounded the catheter to stabilize it and keep busy hands from dislodging it. It gave us some peace of mind.
Francesca is adjusting to being without much pain medicine. She was up through the night but did get some rest. Still drinking water and talking more. Because she was so fluid restricted for the last 24hrs her weight is down but her chest Xray looks better (her lungs like it dry, her kidneys like it wet.) We will have to start all over to get the BUN down again. It is hard not to dwell on the lack of progress but her creatine is clearing a little better and her potassium is stable. She has not had fever since Sat. So we may get off antibiotics that make her stool so much. We will see what the day holds.
Mark did go home last night. My mom is here for now.
"Blessed be the Lord day by day. God, our salvation, who carries us." Psalm 68:20.
Sunday, February 4, 2007 6:01 AM CST
We had a very difficult day yesterday. Just after rounds yesterday the site of her peritoneal catheter began to leak. They were discussing what to do when the tape lost its adhesiveness and the catheter began to move out of position. It sits at a precarious 90 degrees as it is and it seems to be suitable for an intubated infant not a moving 2 year old. After I held it in place for an hour they decided to pull it. They wanted to wait 24hrs to put in a new one which means she could not have dialysis at all. They restricted her fluids, increased her diuretics. But in giving Portagen formula for her chylothorax it is giving her protein that she cannot process since her kidneys are not working. It took over a week to get her BUN from 115 to 84. Without dialysis to cleanse her system and one can expect that number to rise. This am it is back to 106 (normal is <25). It is very frustrating to lose all that ground. The foley catheter that measures urine directly from the bladder was pulled several days ago because they are concerned about risk of infection. She is stooling often. The only way to measure output now is to weigh diapers but if it is mixed with stool, one cannot determine exactly how much urine she is actually producing.
Her dilaudid PCA continuous infustion was stopped yesterday. She can have doses as needed. She actually seems like she can tolerate sitting up a little better; cannot do it alone yet but took sips of water while I supported her upright. Mark was somewhat encouraged last evening that she had looked better. Eyes more open. Talking more (she has only said "mom" and "water" until now). He is still very upset by this setback. I do not know how this will effect the decision for a long term catheter. Unless her kidneys kick in by tomorrow, I do not know what other option we have.
While we wait for healing, God's grace is evidenced in all of your prayers and notes of support. We are eternally grateful!
"We worship the God of heaven. He sits on His throne on high. His hands will provide all our needs. His eyes are upon us." Psalm 68:4
Saturday, February 3, 2007 6:19 AM CST
No major changes overnight. Temp still up and down. Still needs pain medicine to stay comfortable. Very thirsty. She is unable to sit unassisted but is attempting to dip the little mouth sponges on a stick in the bottle of sterile water and take it to her mouth. She is weak and shaky but determined. She can roll side to side on her own. The R chest tube still causes her grief. The effusion is no better. Her BUN (84)and creatine (2.9) came down a little. Her hydration status is tricky (like everything about Francesca). Her lungs like it dry. Her kidneys like it wet. Just like the formula to resolve her chylothorax is not the best for her kidneys. It is all a trade off. Liberalizing her fluids seem to help her BUN come down but makes it harder for her to breathe.
Tony and Marlene (Mark's parents), who have kept us well fed returned home on Thursday night. Brian (Mark's brother) brought more food Friday night. Mike and Julie (Jean's brother and sister-in-law) made dinner Wed night. So we are not going hungry!
"Our soul waits for the Lord who is our help and shield. For in God our hearts rejoice in your holy name we trust. May your kindness Lord be upon us. We have put our hope in you." Psalm 33:20-22
Friday, February 2, 2007 6:15 AM CST
There is not much change. Still low grade temps. Not acting herself. When she is well she has a great vocabulary. She only whispers "mom" and "water." An elevated BUN can make one very thirsty. She is allowed to drink some but she cannot seem to coordinate her swallow and it makes her cough. I have come up with a few ways to control the amount she is getting. She may have an evaluation today.
The main focus continues to be the tenuous balance of fluid and electrolytes. Her output seems a little better but without a foley the urine is not measured exactly. On antibiotics she is having more frequent stools. But her output overall is up some.
Mark is feeling a little better. Thanks for all the prayers and support.
"I raise my eyes toward the mountains. Frome where will my help come? My help comes from the Lord the maker of heaven and earth." Psalm 121:1
Thursday, February 1, 2007 6:06 AM CST
Francesca continues to have low grade fever. No one knows the source. She has a persistent dry cough and is very restless. She is able to move herself side to side but just acts like she is not feeling well. She has been not consistently keeping her sats above 90% unless she has a little oxygen blowing near her. I do not know how long they will let her do that without putting the nasal cannula back on.
Yesterday the nephrologist said we should know by Monday if she is making more urine or not. If not we would make long term plans for dialysis. A more permanent catheter would be placed. If she is cleared from a heart standpoint we may be able to finish her treatment at Cleveland Clinic. Her weight is down below her original weight so she may get additional fluids. I will see what they say on rounds.
Please pray for Mark who is not feeling well. We are greatly encouraged by all those who pray and write.
"Answer when I call, my saving God. In my troubles, you cleared a way; show me favor; hear my prayer." Psalm 4:2
Wednesday, January 31, 2007 5:09 AM CST
Fasten your seat belt folks! We are in for a lot of ups and downs. As the day progressed yesterday, Francesca became more and more tired. With pain medicine on board and being 2 weeks since surgery, it was my job to get her up and moving. Every 2 hrs. I would try to get her to sit up, percuss her chest, and turn her. She would fall right back to sleep until the next time. Her temp spiked to 103 axillary but because her body fluids were already sent for culture and she is on a widespread antibiotic they did nothing additionally. She takes some sips of water by mouth. The formula she is now on is specifically for the chylothorax (fat in her pleural space which does not belong there.) There is no renal-friendly formula to treat chylothorax so we may see some side effects like increase in her BUN(waste products normally filtered through the kidneys.) She is still on peritoneal dialysis that will help do the job of the kidneys until her function returns. She has lost all the excess fluid she retained after surgery. She is about the same weight as when she came in. She is making small amounts of urine. There will be a lot of tweeking her fluid and electrolyte balance in the coming days. Hopefully, she will be acting like her old self soon.
"Hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently." Romans 8:24-25
Tuesday, January 30, 2007 8:09 AM CST
Francesca continued to act sick Monday evening when I left her at 7pm: intermittent fevers, sleepy, whiny, coughing. I awoke to my alarm at 2am disoriented and concerned. I entered her room to find my little girl propped up in bed. The fever had vanished, the excessive swelling dissipated, even her R leg looked more normal with good pulses. The nasal cannula that delivered oxygen but irritated her constantly was gone. She is breathing room air. The hands puffy with fluid just hours ago looked normal size. She took sips of water from a spoon fed to her by her dad. The relief on Mark's face was evident. The lines creased with worry these last two weeks relaxed into a smile. We stood over her bed as she fell back to sleep, our hearts full with gratitude that we are close to getting our little girl back.
The dialysis continues to pull excess fluid but now has to be slowed so as not to dehydrate her. The chest tube drainage now has tested positive for fat. Sometimes during surgery the lymph ducts are nicked cause leaking into the pleural space. It is usually resolved by taking the fat out of her formula but she is on a special renal friendly formula so the specialists will have to work it out. We have much to accomplish before getting out of here but we are greatly encouraged by her progress and all the prayers being said in her name.
"For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
Monday, January 29, 2007 6:06 AM CST
Francesca had a difficult night. Had a wonderful day Saturday:awake, alert, talking, watching Barney (her favorite). Sunday morning was awake but somewhat subdued. Sunday afternoon seemed more sleepy. Sunday evening her temp started to rise, coughing more, working harder to breathe, even starting to wheeze (which she has never done before). She ran a fever most of the night. Acting ouchy. Her right leg is swollen. Her skin is tense. It hurts to move it. She has a central line in her R groin in which all the medicines and IV fluids are infused. It makes it difficult for the blood from that foot to return to the heart with that line in the way. Yesterday the docs stopped her milrinone (a medicine that dilates her blood vessels and makes it easier to perfuse her periphery.) She lost pulses in her feet by nighttime and had to be restarted. The nephrologist decreased the glucose in her dialysis solution to slow the amount of fluid being taken off but by night she was taking in more that she was having out, so it had to be increased again.
She is definately not acting herself. The longer one is in the hospital the greater risk of infection. With tubes coming from every orifice, the chances are increased also. Her temp is up, her white count is up so I suspect the docs with be culturing blood,urine,etc. to see if it grows out any bacteria. Dr. Crowley, the intensivist, is back today. I know he will look after her.
We will need to pray her through this. She looks so tired. Even breathing takes so much effort.
"Faithful friends are a sturdy shelter; whoever finds one has found a treasure. Faithful friends are beyond price; no amount can balance their worth. Faithful friends are lifesaving medicine; and those who fear the Lord will find them. Those who fear the Lord direct their friendship aright, for as they are, so are their neighbors also."
Thank you for being so faithful to our family.
Sunday, January 28, 2007 6:03 AM CST
Francesca had a good night. Slept well. The dialysis is pulling off excess fluid. Her weight was down some this am. She is making some urine but not even the minimum acceptable amount. The dilaudid PCA(patient controlled analgesia)seems to be controlling her pain. She gets a little extra with procedures that seems to help her during and afterwards. Her chest Xray is still not all that good but as she wakes up more, takes deep breaths, hopefully it will begin to improve. Overall, she seems to be moving in the right direction.
Thanks to all who are praying for "pee"!
Everyday I am moved beyond words when I see those of you who have left messages: Co-workers, family, friends I have not seen in years, those who work with Frankie at home, my beloved home school friends. Your stories and words of encouragement help buffer the stress of this ordeal and help me be strong for my daughter. God's grace is apparent from your constant prayers. Even when things look bad, I can trust that He is listening to all those who invoke His name.
"The people who have walked in darkness have seen a great light; Upon those who dwelt in the land of gloom a light has shone. You have brought them abundant joy and great rejoicing." Isaiah 9:1-2
Saturday, January 27, 2007 11:52 AM CST
The nephrologist, Dr. Brophy, spent a lot of time explaining things to us. There is little relevant data regarding kids who develop renal failure post heart surgery. Even in that population post-op heart surgery) there is so much variance in anantomy it would be difficult to compile data relevant enough to make predictions. Much of what he said sounded grim if peritoneal dialysis did not work. Going to hemodialysis is possible but no one wanted to have to go to that.
Francesca had a lot of ups and downs last night but the bottom line is she started to respond to the diuretic "bomb" (3 medicines that work on different part of the kidneys)and to the more concentrated dialysis fluid. It began to draw off some of the excess fluid in her body. So more came out than went in. Her potassium is at an acceptable range, her BUN is slowly coming down (from 115 to 100). He is going to assess her results later in the day on this same protocol and give us his impressions later. Too soon to tell if there will be any residual damage to her kidneys. She is making small amounts of urine. We are very grateful for such a kind, patient, knowledgable doctor.
Her chest Xray did not look any worse so she just went from bi-pap (a horrible mask blowing in oxygen at high pressure) back to a nasal cannula. She continues to have intense itching, most likely as a side effect of the morphine. She is the most alert she has been since surgery. With the mask off I can make out what she is saying. Her eyes are very heavy and speech slurred but she is sure trying. What a trooper!
Your prayers have kept us from losing our minds and are getting her back on the right track.
Friday, January 26, 2007 6:54 AM CST
Francesca continues to have peritoneal dialysis for acute renal failure starting last night. By infusing a special kind of fluid into her abdomen and letting it drain back out, it can draw out the harmful waste products from the body since her kidneys are not doing the job. Her weight is up a whole kilogram (2.2lbs) since yesterday. When nephrology comes around they may choose to change the type of fluid infusing into her belly and use it to also put some of the excess fluid off that she is retaining. She is puffy all over. She was very uncomfortable last night, so her morphine drip was turned back up and added ativan back. When I came down at 2am she was resting comfortably. She was agitated throughout her bath and weight but is able to go back to sleep. She still can answer questions but still does not open her eyes much. Her chest Xray looks much worse on the R side. She still has a chest tube there to drain the fluid that wants to accumulate there. She may have some further studies today making sure her diaphram is working properly. She had one chest tube pulled yesterday that drained the middle of her chest since surgery. One still remains on the L side and one on the R. She was started on a formula specifically for children with kidney problems. It is a relief that least at this moment she is more comfortable.
6pm Because of her increase work of breathing, she was put on bi-pap. It involves delivering positive pressure through a mask into her lungs whenever she takes a breath. It was initially uncomfortable but she became used to it. She is having a lot of facial itching, a side effect of morphine. A pain team consult was made. She is now on a dilaudid (sp?) drip which is a synthetic morphine. It is an effective pain reliever but not as hard on the kidneys. The pain nurse said that with her decreased kidney function she will have more side effects (itching) with less pain control on the morphine. Hopefully, this will make her more comfortable. The central line in her R groin was leaking so it had to be redone. She had an echo to assess diaphram function. Athough not totally normal, it does not require any intervention. Nephrology just rounded again. They will increase the amount of glucose in the dialysis infusion hoping it will pull some of the residual fluid from her tissues. She is puffy all over. She has had a busy day.
Although things have gotten rough the last few days we are so fortunate to have such phenomenal family and friends to give support and encouragement. We have a hotel room close by. Mark's parents have been feeding us everyday. We are lucky enough to have good quality medical care available. We are blessed.
Thursday, January 25, 2007 6:53 AM CST
Francesca has been working hard to breathe all night. Her R chest tube continues to drain fluid from around her R lung. She had lost the excess fluid from surgery. There is no obvious reason for her to be working so hard. Her triglycerides are way up and she stopped urinating. Subsequently her potassium is elevated. She will have a renal consult today to make sure her kidneys are still functioning OK. They had to stop her HAL (nutrition going in her IV) because it contains more potassium. Her feeds were stopped in anticipation of pulling one of her chest tubes this afternoon. She has been answering some questions but still does not fully open her eyes. She can squeeze my hand and say,"Mom." I pray they will figure out all that is stalling her progress. I hate to see her working so hard.
"Consider it all joy, my brothers, when you encounter various trials, for you know that the testing of your faith produces perseverance. Let perseverance be perfect, so that you may be perfect and complete, lacking in nothing."
James 1:2-4
5pm We had a major set back today. Francesca has acute renal failure. Her kidneys stopped functioning. They sustained an injury most likely from the long time on the heart-lung machine during surgery and the aggressive diuresis afterwards. She has not urinated so her body is building up with toxins. Her BUN is 113, creatine 3.3, K 6. The nephrologist, Dr. Brophy, recommended peritoneal dialysis and is currently placing the catheter now. The main concern is getting her blood levels down. Secondly, he will be able to assess if there is permanent damage to her kidneys. His initial impression is that it is temporary but it could take 2 days to 2 weeks for her kidneys to function again. The dialysis itself does not make her urinate, it just gets rid of the waste products another way. An elevated BUN could also be contributing to her decreased responsiveness.
Wednesday, January 24, 2007 7:03 AM CST
Francesca had another stable night. She remained extubated and although she still has to exert some effort in breathing, the doctors are content with her status. Today they may restart her feedings through her GT, may pull her foley, decrease her ativan so she wakes up some more. Her 3 chest tubes have to stay in at least one more day. She is still pretty sleepy but can sometimes answer questions with a nod of her head. When I come in between 2-3am, I am able to participate in her bath. This morning I was able to do the whole thing including washing her hair (which has not been done in a week!) because she is off the ventilator. She has to be suctioned often because her cough is weak and does not breath deep enough to keep clearing all her secretions. Dr. Crowley, the intensivist, predicts another day or two of ICU if she does well.
Tuesday, January 23, 2007 6:17 AM CST
Francesca seemed to have "turned the corner." Taking off the fluid around her lung, although adding another chest tube, seems to relieve some of her work of breathing. She did well with her "sprint" last night. A sprint is a period of time where the ventilator settings are turned very low. It does not deliver any breaths, Frankie must initiate them all. It gives her some positive pressure when she initiates to still assist her work of breathing but makes her do more on her own. It is a form of lung exercise to get her ready for extubation (taking the ventilator off all together.) They will probably sprint her 3 more times today. Her chest Xray is better today.
She had excellent results from her lasix drip, which is now turned off. She has urinated most if not all of the excess fluid from her body. She tolerated the very small amounts of formula given to her stomach. She has 2 infusions of pain medicine, her HAL (nutrition through the IV), dopamine for BP, milrinome (vasodilator), and KCl replacement still running. There are a lot of things that can be done today. I am not sure where they will go but I think her recovery will progress much more quickly now.
There are no words to describe how overwhelmed I am by those who write comments on the website. Friends old and new, family, and those who we do not even know but who have walked a similiar path. We are filled with gratitude for your prayers and proud to be part of this child's journey.
"For God will hide me in his shelter in time of trouble."
Psalm 27:5
3pm Francesca is extubated although she is having trouble maintaining her sats. She remains in 100 xygen by mask. She is still very sleepy. Her lungs sound like she is not moving air as well as she was this so a chest Xray was ordered. It does look a little worse than the 5am xray. The cardiologist/instensivist said she may just take a little longer to come around. They will be taking frequent arterial blood gases to keep checking her status. He suspects that by tomorrow she will be doing better.
Monday, January 22, 2007 12:51 AM CST
For some reason the update I gave at 7am was not recorded. So I will try again.
Francesca had a pretty quiet night. Less sedation was given. It seemed she could tolerate being turned better with smaller drop in BP and sats. It turns out her liver enzymes are elevated with may mean it is taking her body longer to metabolize the medicine. Nevertheless, she seems comfortable while getting less sedation.
The bottom ventricle on the right may be slow in contracting and not efficient. It causes some backup into the right atrium and consequently the venous return (the blood coming back to the heart to be re-oxygenated). The liver does not like that. The cardilogist in the ICU, Dr. Crowley, was thinking about her over the weekend (she has that effect on many doctors). He decided to use the pacemaker to try to increase the contractility of her heart that would also increase her BP and maybe help with losing some of the excess fluid in her body. Since I had come into the unit at 2am I had heard the inservice that Francesca's nurse, Jesse, had given the other nurses. I was better prepared to understand what the doctor was trying to accomplish. I also was able to see her chest Xray which was improved from the day before. Unfortunatly, the fluid collection surrounding her R lung is impeding her progress on the ventilator. So currently she is getting another chest tube placed in addition to the 2 she already has. This should remove the fluid allowing the lung to fully expand. This has helped in her previous admissions. I just hate for her to go through one more painful procedure.
Your prayers and comments are keeping us encouraged.
Sunday, January 21, 2007 6:30 AM CST
Francesca has hit some "bumps in the road". She still has retained so much fluid that we cannot make much progress weaning her ventilator. She has some response to the lasix drip but not enough to make a big difference. "Tincture of time" is what one nurse said. Not what a mother wants to hear necessarily. It is amazing to watch the intricate balance of titrating drips and vent settings according to her lab values and how she responds. She does not tolerate even being turned, weighed or Xrayed without an episode of desatting and dropping her BP. Her condition could be worse and it could be better. We always see families in worse situations and are grateful for the progress that she has made.
I spoke with Sophia and Mario who have been having a great time at Joe and Debbie's house. I had to control my voice so that they would not hear the depth of how much I miss them. I am so incredibly blessed to have a wonderful nurturing place to put them while we are away. After awhile the combination of circumstances all starts to get to get to you. The stress of Frankie's condition, the family's separation, the teenage issues, etc. Then I read the guestbook and am absolutely assured that we are held up in prayer by beloved family and friends and even those we do not know. We have the grace to make it thorough another day.
"I pray that you, being rooted nad established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge-that you may be filled to the measure of all the fullness of God." Ephesians 3:17-19
Saturday, January 20, 2007 7:37 AM CST
Francesca had a relatively stable night. She was fortunate to have Pam again last night who has been in the unit for 40 years! She keeps her well medicated. When her BP dropped suddenly, she pushed calcium and it came right back up. She allows me to help with the bath and linen change. We weighed her together. She is still retaining a lot of fluid. She is having some response to her lasix drip but has a way to go. The docs are moving cautiously on her BP medication. Starting to wean her vent settings. My concern is that once they allow her to wake up some, she will get so agitated that it will make her sats drop. But we will see how she does today. Chest tubes are draining less.
I was overwhelmed by the responses on the website. Your prayers have uplifted us and are the reason she is doing so well. We are eternally grateful.
"Bless the Lord who has heard the sound of my pleading, the Lord is my strength and my shield in whom my heart trusted and found help." Psalm 28:6-7
Friday, January 19, 2007 1:23 PM CST
Francesca had a reasonable night. More little ups and downs but no great setbacks. The key seems to be staying ahead of her sedation. Once she wakes up, she drops her sats and it takes a great deal of meds to get her calm again. Pam, the experienced nurse on nights, who has had her 3 nights in a row seems to have found something that works. Getting the days shift to replicate it will be the challenge.
Currently she is in the operating room to close her chest incision completely. She will be completely paralyzed and sedated for the procedure. Hopefully, she will tolerate it well. Best case scenario, she will be off the ventilator tomorrow. We will just have to wait and see.
5pm Francesca is back in her room. The closure itself went smoothly. However, Dr. Bove was unable to evacuate the fluid surrounding the R lung. Some of the lung tissue is adhered to the chest wall from multiple operations. Further manipulation may cause more harm than good. She is still pretty sedated; seems stable for the time being. Sats are a little low.
Thursday, January 18, 2007 7:12 AM CST
Francesca had some difficulty keeping up her oxygen saturations last night. It seems she has some fluid accumulating on the side of her R lung. With her chest still open the surgical team may try to evacuate the fluid when they remove the bridge this morning. She had an experienced nurse on night shift who was able to keep her reasonably comfortable. Since she is no longer being paralyzed, she has periods where she wakes up; alert enough to answer questions and recognize me. No one, especially a 2yo, likes to have a tube down their throat. She grabs at it when she can. I was able to get her nurse to pull the tube that goes from her nose to her stomach and just vent her GT. I was also able to help bathe her and change her linen at 5am before Xray came. She was sleeping when I was kicked out again at 7am for report.
Wednesday, January 17, 2007 2:47 PM CST
Francesca had a relatively stable night. There are the standard issues with blood pressure, blood volumes, urine output, sedation, and ventilation common to this critical period post-operatively that warrant close observation. So far Dr. Bove is pleased with how she is doing. She had periods where she could shake her head "yes" or "no" to answer questions even while still intubated (on the ventilator) but they are trying to keep her sedated while intubated and while her chest is still opening.
One of the most difficult issues for me is that not only can a parent not sleep in ICU, we are asked to leave at 7am, 3pm, 7pm, and 11pm for an hour each time. Additionally, if any procedures are going on nearby, we are asked to leave. Very different from how Cleveland Clinic does things. Very difficult adjustment for me.
The kids seem to be doing well in their prospective places.
Thanks for your continued prayers.
Tuesday, January 16, 2007 5:39 PM CST
Francesca has just reached the ICU but we have not been able to see her yet. Dr. Bove came to speak with us about the results of the repair. He anticipated a complicated anatomy but when he first opened her heart it was not exactly as he had expected. The echo did not accurately show how small the right ventricle actually was. The one large valve she had was not positioned in a way he could just cut it in half. It took him an hour just to look around and plan what he was going to do.
He was able to close the large upper chamber by dividing into 2 "holding" chambers or atriums. He totally cut apart the large valve that she had and reattached it how he wanted it, to form two new valves that open from the upper chambers to the lower chambers. He closed the hole between the ventricles (lower chambers) by patching an area to include the aorta which is not located in a normal position. He took a jugular vein from a cow and connected it from her RV (lower R chamber) to her pulmonary artery which carries blood to the lungs. All of this gets joined together in an area that involves the electrical conductivity of the heart which is invisible. So he would not know if it were interrupted until she came off the heart lung machine. He anticipated that she could end up with a permanent pacemaker. But she came off the heart lung machine beautifully and in normal rhythm.
He chose not to close her chest at this time because of how long she was on the heart lung machine, how the conduit is positioned anteriorly, and of how much swelling she has currently. He will probably close her chest completely in about 3 days.
He was very pleased with the result. The new valves are not leaking. Her pressures are normal. Her heart rate is appropriately elevated but will watch it closely.
Dr. Bove is not only one of the most talented people I have ever met but kind, pleasant, and humble. He does 500 surgeries a year. He has been practicing for around 20yrs. He takes cases many doctors would not ever attempt. He said Francesca is one of the most complicated anatomies he has ever dealt with.
No words could express how grateful we are for your constant prayers. What a result! Get ready for a bumpy recovery. But she has made it through the surgery well.
Praise God!
Saturday January 14, 2007
We are on our way to Ann Arbor for Francesca's open heart surgery on Tuesday. The younger children are going to spend the first week in Columbus with relatives and the high school guys are staying at home with Grandma throughout this ordeal.
Wednesday, November 29, 2006 10:15 PM CST
Francesca underwent a heart catheterization yesterday at Cleveland Clinic. Everything went smoothly overall. We spent most of Monday doing her pre-op workup thinking we were spending the night. Those plans changed when we were bumped to 2nd case Tuesday am. We came home late Monday night. Went back early Tuesday. Went through the whole procedure, recovery, etc. and made it home by 10:30 that night. She is getting back to herself little by little. That was her sixth time in the cath lab but the first time we ever made it in and out in one day! The staff could not believe how much she has grown.
One of the most exciting things that will come out of this experience is this: there was a cardio-thoracic fellow who studied under Dr. Mee at the time of Francesca's birth. He was present at both of her open heart surgeries and probably the one to open and close her chest. Since Dr. Mee's departure, Dr. Mumtaz is on staff at the Clinic but because Francesca's condition is so rare and her next surgery is so complex he knows he would be unable to repair her. So he has asked our permission to go to Michigan to assist Dr Bove. Not only will he be able to better his own practice learn from one of the country's best surgeons, he will bring a wealth of knowledge about Francesca with him because he knows her so intimately. I am thrilled with this arrangement and am looking forward to further discussions.
Dr. Latson, who performed the cath, did learn some new things about Francesca's unique physiology. Some of the information may have an impact on how difficult the repair may be. I know it will take some time to get the results to Dr. Bove so we may not hear from him for awhile.
Thanks for all the prayers and support. Francesca is well, we have been making some breakthroughs around the house. The week before the cath Anthony went to ER by squad from school, the septic backed up and flooded x3, we hosted Thanksgiving, celebrated a birthday, a baptism, and a funeral. With God's grace I have not lost my mind! Not yet anyway! Sr. Jordan is probably having a good laugh. She LOVED to hear about the stories of chaos. She can witness it all first hand from her new front row seat in heaven.
We are still planning for surgery in Ann Arbor Michigan January 16th.
Tuesday, October 17, 2006 10:42 PM CDT
We returned home from Ann Arbor Monday night after a long day at the University of Michigan. We met Dr. Ensing, Francesca's cardiologist at the U of M. We toured the unit and had an echocardiogram. It took awhile for them to get the pictures they needed.
The good news is there is nothing they could see at this point that would move up the surgery date from January. Although it is not impossible to rule out that Frankie could outgrow her shunt before January. She will also need heart catheterization in about a month. This is a more accurate measurement of the velocity of flow and diameter of the vessels than can be seen on echo. Dr. Ensing said it could be done in Cleveland. Dr. Latson has done her numerous times before. He knows her anatomy. He is aggressive when it comes to ballooning, if necessary. That will give her time to heal before her surgery.
The accomodations at U of M are antiquated. The census is high all the time. There are few private rooms. At the stepdown unit there are two in every room which will not allow any of my kids to stay with me. Being January in Michigan there is a good chance they will not be up at all. The surgeon estimated a two week admission.
The surgeon and cardiologist still think a 2 ventricle repair is the best option despite being a very complex procedure.
We will pray for a favorable outcome and for courage to face it all.
Friday, September 15, 2006 10:35 AM CDT
This am Mark and I had an encouraging conversation with Dr. Bove from the University of Michigan, Ann Arbor. After reviewing Francesca's medical record, he is confident that a bi-ventricular repair is possible. Although many children with congenital heart defects are repaired to have only one functioning ventricle, one's outcome is improved having 2 functioning ventricles. Although her anatomy is very complex and will not know for sure until he is in there, he does think it looks favorable. He estimated that she would be hospitalized approximately 2 weeks. He thought it should be done within the next 6 months as long as she stays well. She does not have a very big reserve between what her saturations are (70s) and the point at which he would have to operate (60s). God willing, she stays stable, we will aim for surgery in January. Dr Bove will be on vacation the first week of Jan. We pray for his safety; no skiing accidents! This will allow us to get through the holidays and have time to prepare as a family.
Francesca continues to grow and develop. She is walking pretty well. She is trying out some new orthotics in her shoes. Her vocabulary continues to expand. She has a lot on her mind and lets everyone know about it! She continues to try tastes of food but little progress in volume. At her checkup she weighed 30lbs which makes her about 80th percentile! A good place to be for surgery.
Keeping up with the kids' sport schedule is ridiculous but she enjoys going to some of the games.
Since her second birthday 8-26, we have been pondering how far she has come; what amazing progress she has made. As difficult as life can be sometimes we cannot forget the miracle of her life. I look forward to what God has in store for this fiesty little spitfire!
Many thanks for your concern and support.
"Blessed are those who put their hope in the Lord their God...The Lord remains faithful forever." Psalm 146:5,6
Wednesday, July 26, 2006 5:55 AM CDT
We are deeply saddened by the passing of Francesca's godmother, Sr. Jordan Haddad. She was our confidant, prayer warrior, counselor, mentor, cheerleader, dearest friend. It was Sr. Jordan that I went to when Francesca was first diagnosed. It was Sr. Jordan who knew just what to say. She has encouraged me in my mothering and the children in their learning for years.
We will miss her terribly but are comforted to know she is resting in the arms of Jesus and suffers no more.
On July 19th Francesca saw her GI doctor first. Her weight is in the 80th percentile! Her doctor was very pleased and feels she is in prime nutritional shape for her next surgery. We are going to experiment with giving her tube feed at different rates to see if the gagging improves because it it still very much a problem.
Then we went to see her cardiologist. Her echocardiogram looked favorable. Her heart is contracting well - good function currently. There is an area of concern above where the last shunt was placed that shows some narrowing but no intervention needed now.
Her cardiologist, Dr. Adel Younoszai, will be taking a position in Denver. He has followed us from the time I was pregnant, through the tumultuous first year, until now. He has been so kind and compassionate. He has tried to give us the best information to make the difficult decisions regarding Francesca's treatment. We will miss him very much.
Since Cleveland Clinic has not replaced Dr. Mee, her heart surgeon who retired in December, we will have to go elsewhere for her next surgery. The heart centers that were suggested for this rare and very complicated next surgery are in New York City, Boston, Philadelphia, Ann Arbor, and California. I am not looking forward to starting somewhere new but we will probably begin with Dr. Bove in Michigan. We had talked with him back when I was still pregnant, so he knows of her case. There is no way to anticipate when her sats will drop indicating the need to be repaired so we will begin the discussions with a few doctors so when the time comes we will be prepared.
Lastly, she had X-rays to check the curvature in her spine. We have not heard back from her ortho doctor what the films showed.
Your prayers are always appreciated as we attempt to make decisions for the betterment of our family.
Friday, July 7, 2006 2:09 AM CDT
Despite a virus at the end of June, Francesca is doing very well. She had a fever for nearly a week. We all feared the worst. When she broke out in a nasty rash, we knew it was just a childhood virus, Roseola. She recovered fine and is acting normal again.
She is much more comfortable taking steps and can make it across the room on a good day. She is saying many words and is working on her siblings' names. She loves to be outside! She likes walks in the stroller or to ride her little bike. She knows sign language for "bird" and does it often. She crawls on all fours, panting with her tongue sticking out to imitate a dog. We have already had to institute "time out" for pinching and hitting. She will smack Mario then pet him softly saying, "nice." When she is tired or knows it is time for a feeding she starts to pinch. She pouts when she goes in the "time out" chair but hopefully this behavior will diminish with time.
Summer is flying by at lightning speed. Maria finished another season of soccer. Dominic (7yo) played "coach pitch" baseball for the first time. His team kept winning which made the season last a lot longer. They lost the county championship by one point, in the last inning. It was great to see how much the boys learned and how their skills improved by the end of the season. It was quite exciting.
Anthony (15yo)attended a leadership conference in Austin, Texas. He and 6 other students were chosen to represent Hoban High School. Four Holy Cross schools in the country sent students to St Ed's college for 5 days of intense workshops on leadership. It was a great experience for him.
We are going to attempt a short vacation to North Carolina next week; the last week before the demands of football season begins. Francesca will have a cardiology appt on July 19th for a routine checkup.
I am moved to tears everytime I check the comments on the guestbook! I am soooooo very grateful for the continued prayers for our family. Life is still so very challenging but nothing like her first year. Your prayers and comments have given us so much encouragement! Praise God for 6 months without a hospital admission!!!
Thanks again for your continued support!
Friday, June 9, 2006 12:40 AM CDT
Francesca continues to do well. She is gaining weight at a moderate pace. She is beginning to take some steps. She is able to do more but feels insecure. She has finally learned to crawl but still prefers to scoot on her bottom. No progress on feeding issues. Still gaggy with tube feeds and only takes small tastes.
The children have finished their school work. What a relief! I am starting to plan for next school year. Anthony had a fantastic year at Hoban. Joe starts summer gym next Monday and classses in August. It cannot come soon enough for him.
I had arthroscopic knee surgery on June 1st to repair a torn meniscus. Surgery went well. It is just inconvient and limiting. No more contact sports for me!
Thanks for your continued prayers!
Friday, April 21, 2006 8:09 AM CDT
Sorry I have been delinquent in posting messages. We had a respiratory illness that swept through the whole family. Francesca was at the doctor's office 3 times in one week. The last time up to Cleveland. We never know if we are coming for a couple of hours or several days. It is hard to be prepared for anything. Thankfully with the fantastic care of her pediatricians in Akron (Dr. Vargo and Dr. Hackenberg) and her cardiology team (Dr. Younoszai and NP Molly) we did not have to be admitted and she has recovered from her illness.
I had grand ideas that working less, I would get so much more done at home. My mother warned me that I was trading two nights of work for two nights of sleep and not to expect to get more done. Working less has given me more of a buffer and kept me from going totally insane. I hope to get my act together soon. I am looking forward to the end of the school year so we can "spring clean" then have some fun. I want to post new pictures because Francesca is growing nicely.
After the kids' gym class on April 13, we were all playing basketball. I played competitively when I was younger but have not played in years. We were having a blast when I fell and injured my knee. I have been on crutches for a week and not getting better. I went for an MRI late last night but will not get the results until Monday. Knee surgery was not in my plans but we will see what the doctor says.
As always your comments on the website are so encouraging! We would not have survived this ordeal without the support so many incredible people. We are eternally grateful!
Jean
Sunday, March 12, 2006 3:25 AM CST
Francesca continues to do well overall. When she has had sick symptoms, she seems more resilient and has recovered without hospitalization. She continues to make some progress with her physical therapy. Feeding troubles are still a major issue. She will see the gastrointestinal doctor at Cleveland Clinic on Thursday, Mar 16th
We have some exciting news: Mark has devised a way that I can work less hours at the hospital. By the end of March, I will decrease my hours by half. I hope to recover physically and be able to better handle my responsibilities at home.
We are grateful for Francesca's stability and for the 3 months we have avoided being in the hospital.
We are so appreciative for the continued prayers for our family who are still trying to rebuild the unity we once had.
We pray that during this season of Lent we remember how Jesus' suffering and obedience paved the way for us to be reunited with God, our obedience - even in times of suffering - will open the doors of grace from heaven for us and for those around us.
Thursday, February 16, 2006 0:57 AM CST
Francesca continues to be doing well. We continue to be working on exercises to correct her delay. Her muscles still have low tone. She is not able to stand unassisted or crawl. She can scoot across the room to get what she wants. Her feedings are not going very well. She does not tolerate bolus feedings even every 2 hrs. She cannot make progress eating if she is gagging all the time and never hungry. She will smell food and do tiny tastes of smooth baby food.
She is trying to say new words. Still loves to be in the center of her siblings' activities. She has gained enough weight to where she looks healthy, like a normal 18mo. One would never know looking at her what horrible things she has endured.
It seems even working night and day, it is hard to make ends meet. We lost our beloved helper some weeks ago. But at least Frankie is stable.
Thursday, February 2, 2006 4:58 AM CST
Francesca was seen by her cardiologist Wed morning. Her echocardiogram showed nice flow in the pulmonary veins. The subclavian that was dilated in Dec showed some reason for concern but no intervention necessary. Just going to watch that area for now. He was very pleased. For the first time ever scheduled our next appt in 3 months!(knowing I will call if there is concern before then.)
She continues to grow. Working hard on her physical therapy exercises. Making slow progress. Seems energetic. Saying new words. Seems more resiliant. Still loves to be involved in whatever her siblings are doing.
Hopefully, this will be the start of a somewhat normal time for everyone. As always, many thanks for the prayers for continued healing for our family.
Thursday, January 19, 2006 1:46 AM CST
Francesca continues to do well overall. She continues to gain weight and looks less like a baby and more like a little girl. She has quite the fiesty personality. She says many new words: "button" "off" "meow." She is learning a limited number of signs. She is less fussy with some of the nurses and is learning some of their names. We are having difficulty keeping consistent help. Despite all the agencies involved with our case, no one can staff a nurse to cover the two nights a week that I work to carry the health insurance. I am increasingly frustrated at not being a more efficient manager of the everchanging dynamics of our home. The kids are growing so fast. I do not want their memories of childhood to be all about work. We have much to be grateful for and we need to be focused on that. Hopefully, Francesca will continue to gain strength and do well.
Thursday, January 5, 2006 3:47 AM CST
Francesca continues to be stable overall. We have stayed out of the hospital since her cath in December. She is trying to say new words and is beginning to be interested in tiny tastes of food again.
Now that she is more stable for the moment, Mark and I are turning to matters we have put off for so long. It is very overwhelming still as we try to put the pieces of our family life back together.It is not where we thought we would be at this stage in life but I am confident that God will make some sense of it all. It is just not in my time frame!
As always sincere thanks for your prayers and support.
"Many are the plans in a man's heart, but it is the Lord's purpose that prevails."
Proverbs 19:21
Wednesday, December 21, 2005 7:41 AM CST
Francesca seems to be doing a little better. She looks good. She is continues to gain weight. She is trying to say new words. Her sats have not gotten any worse. Her sats have been less in the 60s and a little higher when she sleeps.
We are overcome by the generosity of others who have continued to pray. We have received meals, fruit baskets, cards of support. We had a wonderful visit at Our Lady of the Elms and enjoyed the company of the nuns who have prayed so fervently. Kind words are salve to family who is still very much struggling to regain some semblance of normalcy or stability.
As we celebrate our Savior's birth this season we will rejoice in the life of our own special baby.
Friday, December 16, 2005 10:18 PM CST
We made it home Thursday night exhausted and frustrated. Her oxygen saturations have not changed. Normally after a cath they are nice and high then slowly drop over time. This time no improvement at all. I couldn't help but feel like I put her through all this for nothing. The important thing is that the most serious reason her sats her low was ruled out. Her cardiologist confessed he was very concerned that the pulmonary vein stenosis could have gone to the lungs and then there was nothing he could do. So it could be much worse. It is good to be home. We will deal with her condition for now. She will go back to surgery if her sats are <70% half the time.
We would never survive without prayers and support of so many.
Wednesday, December 14, 2005 1:42 PM CST
Francesca was admitted Tuesday night. She underwent a CT scan and then heart catherization at 8AM. The catherization uncovered a new area of narrowing, this time closer to the shunt that was surgically implanted 7 weeks ago. This narrowing may be due to scar tissue forming near the shunt. They gently opened the stenosed vein by ballooning. She tolerated the proceedure well and hopefully will be discharged tommorrow.
Wednesday, December 14, 2005 1:42 PM CST
Francesca was admitted Tuesday night. She underwent a CT scan and then heart catherization at 8AM. The catherization uncovered a new area of narrowing, this time closer to the shunt that was surgically implanted 7 weeks ago. This narrowing may be due to scar tissue forming near the shunt. They gently opened the stenosed vein by ballooning. She tolerated the proceedure well and hopefully will be discharged tommorrow.
Saturday, December 10, 2005 6:12 AM CST
Francesca's saturations have leveled off. Less time in the 60s but not seeing too much time in the 80s. She has been pretty much in the 70s awake or asleep. The only way that she would forgo the cath is if they stayed in the 80s all the time. So we are trying to prepare for next week. The GI doctor did not feel that the freqent gagging episodes are related to reflux. I remain unconvinced because of the incompleteness of the test. We only had 8hrs of data not 24hrs. The test did not catch her daily wretching episodes at 5-6am. We will address her GI issues after the cath, depending on what is found.
I am struggling to keep it together. I feeled so pulled and less emotionally able to handle it all. I can't help but think of Jesus' mother,Mary this time of year with all the uncertainty she faced in protecting her child for His very important purpose. I gain encouragement from her quiet strength and willingness to give all to God's plan. This song by Amy Grant says it all:
BREATH OF HEAVEN
I have traveled many moonless nights.
Cold and weary with a babe inside and I wonder what I've done. Holy Father you have come and chosen me now to carry your son.
I am waiting in a silent prayer.
I am frightened by the load I bear.
In a world as cold as stone must I walk this path alone.
Be with me now. Be with me now.
Chorus: Breath of Heaven, hold me together. Be forever near me. Breath of Heaven. Breath of heaven. Lighten my darkness. Pour over me your holiness. For you are holy. Breath of Heaven.
Do you wonder as you watch my face if a wiser one should have had my place. But I offer all I am. For the mercy of your plan. Help me be strong. Help me be. Help me.
Chorus.
Wednesday, December 7, 2005 5:17 AM CST
We are home from the hospital. The GI doctor will call back with the pH probe results and decide if the test needs repeated. Her heart cath is going to be next Wed. Dec. 14th. The pulmonologist (lung doctor) is going to try to schedule a CT scan of her lungs while she is under anesthesia for her cath. The plan is to intubate her during the cath in case the veins need ballooned again. Depending on what they find and what intervention is required she may only have to spend one night. Hopefully she will behave herself and we will not have to go up before next Wed. She is in good spirits. Before we left and when we got home her sats were 80% even awake! If she continues to do that well she may not have to go at all. Now that we are home I can do damage control with the other kids and try to get ready for next week.
Tuesday, December 6, 2005 7:07 AM CST
Francesca came up to Cleveland Clinic to have her pH probe placed. She had some terrible gagging spells after it was placed. We had an Xray to check placement then returned to the office with the films and she had another bad gagging spell, she turned blue. They were uncomfortable in sending us home so we had to spend the night. I was unprepared but it was better than just not doing the test. She was tolerating the tube much better and finally fell asleep, so I laid down. I heard her crying and awoke to find that she pulled the tube out. There is no way to recalibrate it during the night. I don't know if they will put it back down this am or repeat it today. I am waiting for the docs to decide. We had to be up here for her pre-cath testing anyway. Will update later.
Monday, December 5, 2005 4:59 AM CST
Francesca is doing about the same. Still having periods of sats in the 60s daily. Her color is still poor but she is pleasant and playful. We will go up to Cleveland today to have a pH probe placed to see how much her reflux is still playing a part in her desaturations. A long tube is placed down her nose that will end up near the opening of her stomach to measure if acid is still able to splash up the esophagus causing her sats to drop. I will be recording the events over the next 24hrs to see if there is a correlation. We will go back on Tuesday to have the information downloaded. She will also have her chest Xray, echo, lab work, etc. in preparation for the cath whether it be Wed Dec 7th or the 14th.
Many thanks for your continued care and support.
Thursday, December 1, 2005 7:37 AM CST
Francesca continues to do poorly. There are several episodes, almost daily, where her sats are in the 60s for prolonged periods of time. We talk with her cardiologist almost daily. The cath was moved to Dec 14th but may be moved up to the 7th. Her blood work this week does not show anemia so her condition is still unexplained. Although she has been slightly more active, her color is very poor. All this uncertainty is very stressful, not to mention trying to keep my job, crushing headaches, and the upcoming holidays.
Saturday, November 26, 2005 10:19 PM CST
Francesca has had a roller coaster of a week. Last Sunday 11/20 she was doing very poorly. Her saturations dropped so low I had to put her in oxygen temporarily. We went to the Clinic early Monday am. Repeat echo showed no apparent narrowing in the pulmonary veins. Nothing to explain the low sats, fussiness, poor activity. Blood work was drawn. We went home. If she does not improve she will have to go back to the cath lab to see if anything is going on internally.
Tuesday we got a call that her blood work showed she was anemic. That would explain everything. Her hemoglobin dropped from 16 after surgery to 9 which is close to being transfused. Her doctor wanted it redrawn on Wednesday to see if it dropped again, indicating a bleed somewhere.
Wednesday the lab work showed her hemoglobin was 17! It does not make any sense. We are back to square one. Her symptoms are back to being unexplained. Our prayers are that she somehow stabilizes in the next 2 weeks. We have a tentative date of Dec 7th for the cath.
Saturday, November 19, 2005 0:28 AM CST
Francesca is still not herself. She really has not been right since surgery. Her sats have finally stabilized. At least not going any lower. We have our old pulse oximeter back. She got her synagist shots this week. Now she is not tolerating her feedings. The last 2 nights she is gagging in her sleep. She is normally tube fed continuously at night but I had to turn it off for a few hours so she could rest. She continues to wretch anytime it is running during the night. We went back to feeding her every hour during the day and seems to be doing OK with that. She is due to be seen by cardiology next Wed. We may have to see GI also. She is just finishing Augmentin. Hopefully her stools will return to normal and this excessive gagging will stop.
The prayers and support of so many keep me going during this insanely busy time.
Wednesday, November 9, 2005 11:02 PM CST
Francesca is certainly not herself. She is still crabby. She is slightly better than last week. She will have periods where she perks up with motrin but most of the time she is fussy. We went to Cleveland Tuesday. Her sats are not any better still with no apparent reason. We saw a lung specialist because Frankie has never had a normal Xray. The pulmonologist said someone with her interstitial markings normally would wheeze, cough, or have shortness of breath. Frankie has none of those symptoms. Typically they would use steroids to treat interstitial lung disease. Steroid use has many side effects including decreasing her immune system and problems with weight. She and Frankie's cardiologist agreed not to start anything at this time; the side effects probably outweighing any benefit from treatment. Everyone remains puzzled as to her low saturations and poor color.
Wed am her sats were even lower. I thought for sure we were going to go back up to Cleveland or she would have to go back on oxygen. I called the office to let them know what was going on. She did improve later in the morning so we will continue to watch her at home. She is being treated with antibiotics now for the start of a possible ear infection. The medicine is causing her to have frequent loose stools. We will see if there is any improvement in her condition over the next several days.
She is back on house arrest for the rest of the winter. No church, restaurants, etc. to try to cut down on her exposure to germs. She will start getting her monthly shots to protect her from RSV starting Monday. All the kids got flu shots yesterday and today. Hopefully, we will see some improvement soon.
Saturday, November 5, 2005 1:35 AM CST
Francesca had a very difficult week. She was very cranky, slept more than usual. She did not want to be put down. She was not able to sit up for more than 20min. Her oxygen saturations that were so high in the hospital have steadily declined. Although still without supplemental oxygen her color has gotten more blue again. I was very concerned. Her medication schedule and hourly feeding regime was overwhelming, complicated with the fact I was unable to get many nurses this week. The schedule is made out a week in advance and we were discharged with short notice. The machine used to measure her saturations was recalled. The replacement one left burn marks on her toe. I spent countless hours on the phone trying to get the supplies, medications,equipment,and appts that she needs. By the time Thursday came along, I was a wreck. Maria, Frankie, and I went to Clev. for her follow up appt. Her cardiologist was also concerned but the echo did not show pulmonary stenosis which is what I feared. The good news is that he found nothing serious. The bad news is he cannot explain her decline. He did not expect her color or sats to be this way so soon. He said that the older children on a nitro patch complain about severe headaches. He changed some of her medications, including discontinuing the patch. We will go back on Tuesday, Nov 8th. and will also see a pulmonologist (lung specialist).
Friday we did see some improvement. I gave her motrin for pain. She did perk up and was able to stay awake longer. She laughed at the kids and had moments where she looked like herself again. Hopefully this is the start of better days.
"Fear not, for I have redeemed you; I have called you by name: you are mine. When you pass through the water, I will be with you: in the rivers you shall not drown...You are precious in my eyes and glorious."
Isiah 43:1-2,4
Saturday, October 29, 2005 6:28 PM CDT
We are home at last! Her fever resolved so we were discharged, for the time being without oxygen. Now we begin the re-entry process as all the kids are reunited. Her care has become as complex as it was in her inital surgery a year ago. I pray that in my fatigue that no mistakes are made especially with her feeding schedule and with all the medications I must administer. Another hurdle she has overcome as a result of a community in prayer!
Our whole family thanks you for your care and concern during this difficult time.
Thursday, October 27, 2005 5:41 PM CDT
Francesca continues to progress everyday. She looks like herself again and is smiling at me. As we are getting ready for discharge one roadblock continues: she still has fever. No further tests are being done. We are just watching her. They want her to be fever-free for 24hrs. It is very frustrating to be in a world class institution full of brilliant people and no one knows why she has fever. She does not act sick, thankfully. As things at home get more tenuous in my absence. Sitting here doing litter to investigate is using up the last of my patience. Please pray that an answer may be found so we can be a family together again.
Wednesday, October 26, 2005 4:54 AM CDT
Francesca is doing pretty well. She got out her pacer wires out and only has one peripheral IV. All other tubes, lines, etc. are gone except her heart monitor and pulse oximeter. We moved from intensive care to the cardiac step down. She still has fever so infectious disease doctor was consulted. Monday she was very sleepy. Tuesday she was awake but not herself. Tuesday night she was very fussy and had to have medicine to help her get to sleep. She got motrin at midnight and her temperature returned to normal. It is too soon to tell if the fever will come back. All blood and urine cultures are negative so far. No one is sure why she still has fever. The doctors don't want to send us home with fever. She is getting pretty close to discharge. I hope it won't keep us from going home. She looks much like her old self, even without oxygen! Mark will update the picture as soon as he gets a chance.
The kids are getting anxious to be back together. It's been 10 days and they are missing Francesca. Thank you for your prayers that have made this stay more tolerable.
Monday, October 24, 2005 8:54 PM CDT
Francesca had a decent day. Most of her lines are out. Her feedings were resumed but she had a tough time. She slept all day. She was more awake the day she was extubated than today. She still has a low grade temp. Still on a little morphine. We were able to stay in ICU one more night. Mark will have to post new pictures because she looks much like her old self again. Overall, doing well.
Say some prayers for Gina and Maria who are not feeling well and Mark who is taking care of them.
Monday, October 24, 2005 8:16 AM CDT
Francesca had a great day yesterday. Her chest tube, foley, and arterial line were taken out. The dopamine and lasix drip were stopped. She is more alert, her restraints are off. She is looking at all who come in but not totally herself. She still has some residual effects from all the narcotics she has been on but improving each day. Very small amounts of tube feeding were started last night. It looks like we will have some feeding issues but that is less serious than her heart. She still has a lot of tweeking to do with all the medications she is taking but I am pleased with the strides she has made.
With God all things are possible!
As always our sincerest appreciation for all the prayers and support!
Saturday, October 22, 2005 8:05 PM CDT
FRANCESCA IS EXTUBATED (off the ventilator)!
She had a good night. Able to decrease the amount of support the ventilator was giving. She tolerated the procedure well. She has been awake most of the day. Still has sleepy eyes, hoarse voice, and very jittery from all the narcotics. She has remained calm, has not had any fits. She is still on several IV drips and has a chest tube, foley, and is not being fed yet. But overall, doing well.
Please continue to pray for Mark and the kids. Some of them are having a tough time.
Friday, October 21, 2005 5:59 PM CDT
Francesca had a decent night. Still requiring lots of sedation. Temperature is down. No more racing heart rates. After adding Diurel, urine output is better. Her face is getting less puffy. 2 chest tubes were removed but developed plural effusion on the R and had one put in to drain the fluid. Had to start a femoral line after problems with her subclavian line. Trying to decrease the amount of support the ventilator is giving in hopes of extubation tomorrow. Hopefully, she will have a good night tonight.
Thanks for all the prayers and support. I especially appreciate all who leave a note of support.
Thursday, October 20, 2005 1:32 PM CDT
Francesca is having her usual course of multiple ups and downs. She had some difficulty last night. Her heart rate will spike unexpectedly and stay continuously elevated for no apparent reason. She hates the ventilator and is very agitated despite heavy sedation. The only way to settle her down is to paralyze her. She still has fever. Cultures were sent to rule out infection but the fever could still be from the trauma of surgery. Only being post op day 2, much of this is to be expected. It is certainly not smooth sailing. We have been fortunate to have had nurses who have cared for her in the past(something very important to me.) It is hard to see her like this when only a few days ago she was smiling and blowing kisses.
Many thanks for your continued support!
Wednesday, October 19, 2005 10:32 AM CDT
Jean does not have computer access at this time. Here is a brief update. Surgery was more involved than what was planned. She was actaully in surgery for 9 hours yesterday, but the surgeon was pleased with the outcome. He took out the old shunt and replaced it with a bigger one. He was able to surgically repair the veins that we have had so much trouble with. Hopefully she will not have to be cathed so much on the future. She has a fever which makes her heart work harder so we are trying to keep that under control but that is to be expected the first couple of days after surgery. They have had to keep her sedated because she is still on a breathing machine. Thank you for prayers because Jean feels unbelieveablely stable. She says it is going well overall. Please keep in touch through the website guestbook, if it is urgent please leave a message on her cellphone (330-603-5685). -Jean's Friend
Friday, September 23, 2005 10:38 PM CDT
Francesca has been doing pretty well. We continue to work on her physical therapy exercises and getting her to take small amounts of baby food by mouth. She is doing better with weight bearing in a standing position. Not much progress with bolus feedings. She does seem happy and developing quite a fiesty personality.
We are attempting to get ready for her next surgery set for Oct 18th at the Cleveland Clinic. The doctors decided to put in another BT shunt instead of opting for a complete repair. This procedure would add a bigger shunt to replace the one she has outgrown which really is just prolonging her current state in order to get her bigger for the final surgery that would correct all her anomolies (probably in a year from now). The shunt limits the amount of flow going from the heart to the lungs. Instead of removing the existing shunt that is too small, the surgeon would just add another, bigger one, therefore, making it unnecessary for her to go on the heart-lung bypass during the procedure. Estimated hospitalization for a typical child is about a week. We used to double that for Frankie but because she is bigger and stronger now, hopefully, she will handle the procedure well in that time frame.
Family life is still extremely challenging. The fall sports schedule is demanding, school is time consuming, and Frankie's care is still very involved. The children all have apprehensions about the time she is in the hospital. Hopefully, she will continue to stay well and we will be as prepared as possible for her stay.
As always we are grateful for your care and concern.
Saturday, August 27, 2005 4:02 AM CDT
Many thanks to all those who were able to help celebrate Francesca's first birthday! It was a very emotional time for me, reflecting on how far she has come. We looked back on her as a small baby just after surgery in a mass of tubes and wires. Now she is a healthy-looking cherub with big, dark eyes and a full head of dark hair.
I know the prayers and help of so many have made this day possible. We have had a tremendous response from the community. Everything from help with laundry, meals, child care, schooling, to driving kids to practices, gift certificates to restaurants and Starbucks! But most of all prayers. Prayers that have got us through the toughest of days, the longest of nights. Prayers that have kept the children safe and prevented us as parents from losing our minds. Prayers that have extended Francesca's life.
So today we celebrate with thankful hearts and with deep appreciation the precious life of this child whom God has blessed and has allowed us to spend another day together. There is still so much we do not understand. There is still so much she must undergo. But although we cannot see what is around the next bend or know how we will cope with the next hospitalization, we can be confident that it is in God's competent hands. He will take our pain and our doubt and bring it all together for good!
Friday, August 26, 2005 9:59 AM CDT
To clarify directions to the hall:
Kent American Legion is on Mogadore Rd in KENT not Mogadore or Suffield. It is 1 mile west of the intersection of St Rte 43 and OH-261. The entrance to the hall is just south of the intersection of Mogadore Rd and 261 near the Land O Lakes building.
Coming from the west on 76 the hall can be accessed by exiting on Rte 18, making a L under the overpass and Right on Mogadore Rd. Cross over Howe Rd. The hall will be on the right hand side just past Land O Lakes.
Any questions, Jean cell 330 730 2220
Mark cell 330 714 9603
Tuesday, August 9, 2005 4:29 PM CDT
IN THANKSGIVING FOR YOUR PRAYERS AND SUPPORT, HELP US CELEBRATE FRANCESCA'S FIRST BIRTHDAY! IT WILL BE AN OPPORTUNITY FOR FRANCESCA TO MEET ALL THE PEOPLE WHO HAVE BEEN PRAYING AND CARING FOR OUR FAMILY OVER THE LAST YEAR.
JOIN US AT AN OPEN HOUSE
FRIDAY, AUGUST 26th from 5-8pm
KENT AMERICAN LEGION
1945 Mogadore Rd, Kent 44240 (330-673-2568)
Refreshments Provided
Please no gifts
Any questions we can be reached at our home 330-628-4296.
Tuesday, August 9, 2005 4:10 PM CDT
IN THANSGIVING FOR YOUR PRAYERS AND SUPPORT, HELP US CELEBRATE FRANCERSCA'S FIRST BIRTHDAY! IT WILL BE AN OPPORTUNITY FOR FRANCESCA TO MEET ALL THE PEOPLE WHO HAVE BEEN PRAYING AND CARING FOR OUR FAMILY OVER THE LAST YEAR.
JOIN US AT AN OPEN HOUSE
FRIDAY, AUGUST 26th from 5-8pm
KENT AMERICAN LEGION
1945 Mogadore Rd, Kent 44240 (330-673-2568)
Refreshments provided
Any questions you can reach us at our home 330-628-4296.
Saturday, July 30, 2005 0:05 AM CDT
Francesca continues to gain weight. She is really filling out. She remains happy, sitting erect unassisted, doing some weight-bearing on legs. Her therapists are pleased with her progress.
We started bolus feedings Tuesday, where I turn off her tube feed for 2hrs. then give her the two hours worth within a 15min period. We can then disconnect her tubing from her G tube. It allows her increased mobility and less tugging at the site which makes her more comfortable. It will take her some time to get used to the large volume at one time. Eventually the goal will be to go every 3hrs then every 4hrs. She does seem slightly more interested in taking some bites of food since her stomach is empty part of the time. Not enough volume to count as nutrition but I consider it progress to take some bites without gagging.
The other kids seem to be improving slowly. Although there is never a dull moment at our house, we have been trying to spend some time regrouping. Anthony is preparing to start school as a freshman at Hoban in a few weeks. We have homeschooled for the last 8yrs so it will be a big change for us all not to have him home. I am planning to start school again with the kids next week so we can take time off when Frankie has her next surgery. None of us are really ready to buckle down just yet but it gives us a nice buffer for whatever this year might hold.
Many thanks for your continued prayers and support! We are grateful for Francesca's progress and continued healing for our family.
Saturday, July 16, 2005 0:42 AM CDT
Francesca continues to be without major problems. Her sats are not quite as high as right after her cath. Still working on her therapies and trying to get her to take tastes by mouth.
Frankie's frequent hospitalizations and poor health this year has taken a toll on the whole family. Hopefully, getting a reprieve from Cleveland Clinic will allow us to start putting the pieces of our family back together. Repeated disappointments, missed birthday parties, disrupted schedules, long absences, unaswered questions, uncertain future, less hugs and kisses, distracted braindead stressed-out parents may take some time to overcome. But with God all things are possible. I pray for the wisdom and fortitude to be more present to the children so that healing will take place.
BRING IT ALL TOGETHER sung by Natalie Grant
I hear you say that you can't go on
Cause you had it all and watched it fall away
You feel betrayed cause everything has gone wrong
Can't find the strength to hope for a better day
You may not understand the reasons
But His promise will never change
chorus
He's gonna take your pain
He's gonna take your doubt
He's gonna bring it all together, bring it all together
Gonna make you happy
He's gonna make you laugh out loud
He's gonna bring it all together
Bring it all together for good
You say you live your life doing the best you can
Wondering if the struggle means anything
If you realized that it's in His hands
You'll find the peace that surrender brings
We may not understand the reasons
But His promise will never change
chorus
There will come a day of healing
We will see the master plan
We will celebrate His faithfulness
And we will sing
And we will shout
Praise His name
Sunday, July 10, 2005 5:16 PM CDT
Francesca continues to do well. She does not seem to be in pain and is happy. We have even been able to go out as a family to a couple of places. Hopefully we will be able to stay out of the hospital for a long while and catch up on some of her milestones and gain weight. Our next appointment for follow up is in one month. As always, we are most grateful for your prayers for healing of our family.
Wednesday, July 6, 2005 5:18 PM CDT
We got up to M40 around 7:30pm on Tuesday night. Although Francesca did not sleep much, nothing catastrophic went wrong. She went up on her feeds and was doing well enough to come home. She is not 100 et but I am glad to recooperate from home. We will not need to follow up, God willing, for another month! Many thanks for your continued prayers.
Tuesday, July 5, 2005 3:40 PM CDT
Francesca did not go to the cath lab until 1:15pm. We just spoke to the doctors at the end of her heart cath. (4:30pm). They successfully ballooned the R and L pulmonary veins that were slightly narrowed. She tolerated the procedure well. It is difficult to assess the shape of the vessel, especially on the R. It is appearing more flat than round so they are taking her to do a CAT scan while still under anesthesia (and intubated) before she goes to recovery. They hope to get a more 3 dimensional view to get yet more information. Her shunt still looks good. They will discuss her case Monday on cath rounds but it looks like we will be able to wait awhile before her next open heart surgery. Will update as I get more information but it will still be several hours before we get to the floor. Thank you for your prayers.
Saturday, July 2, 2005 0:13 AM CDT
Francesca continues to do well. She is gaining weight still, sitting unassisted, playful, making strides with physical therapy; all a testament to what a month out of the hospital can do. June is the first time in her life she did not spend any time in the hospital! She looks great, she is happy. I dread going back on Tuesday. Mark and I continue to wonder if it is the right thing but think we have little choice in the matter. Hopefully, things will go smoothly and we will be home again soon. Many thanks for your continued prayers and support. She is on the schedule Tuesday between 9:30 - 10:00am. I'll update as soon as possible.
Thursday, June 23, 2005 1:33 AM CDT
We went up to the clinic on Tuesday for her pre-op appointments. I met with the doctor who will be doing the cath and her cardiologist. I tried and tried to convince them to postpone her cath even later because she is doing so well. Her sats are good, she is gaining weight. She is recovering from some of the stranger anxiety. She is close to sitting unassisted. Neither doctor was willing to budge. They see this as a window of opportunity while she is well to get in there, take measurements of the diameter of the veins, measure the velocity of the blood coming through and get more information to make decisions about the next open heart surgery. They are assuring me that her stay will be shorter because she is not as sick as she has been in the past. If the veins are constricted they would balloon them again but still expect that it would be a short stay. I reminded them that Francesca has never gone by the book, ever. But they remained unchanged. We are still on for July 5th. She is gaining weight rapidly, now 16lbs 3oz. We should not have to go up until that day. In the meantime we will be riding the waves of the everyday and enjoying being home while we can.
Mark Shultz: "He Will Carry Me"
I call, you hear me,
I've lost it all and it's more than I can bear
I feel so empty
You are strong, I am weary
I'm holding on, but I feel like givin' in
But You're still with me
chorus
Even though I walk into the valley of the shadow, I will hold tight to the hand of Him whose love will comfort me. And when all hope is gone and I've been wounded in the battle, He is all the strength that I will ever need. He will carry me.
I know I'm broken,
but you alone can mend this heart of mine
You're always with me
chorus
And even though I feel so lonely
Like I've never been before
You never said it would be easy
But you said You'd see me through the storm
chorus
Saturday, June 18, 2005 1:04 AM CDT
The drama in the Frisone household continues. Monday, Mario broke my glasses in two (I am completely blind without them). Wednesday, Dominic locked the keys in the trunk with the groceries at Giant Eagle. Thursday, Frankie's GT came out at home. I got it successfully replaced but it scared me to death! Friday, we started the day without water. Our pump was on the blink.
Thankfully, Francesca and the kids are well. Frankie gained some more weight, now 15lbs. 13oz. Her heart cath is currently scheduled for July 5th. We are happy for everyday we are home, which will help us live through these other frustrations of life!
"Father, I abandon myself to you. I believe that you hold me fast, whatever situation I may face. I know that I can rest secure in your love."
Monday, June 13, 2005 2:06 AM CDT
Francesca was seen at the clinic for a checkup on Wed 6/8. Since she was doing so well I was hoping to talk the doctor into moving the date of her cath back. The doctor was called out of the office so we did not get to see him. The nurse practioner thought it shouldn't be a problem as long as she continues to do well.
She gained weight! She seems happy. She is starting to get used to her rich formula. Although she is still gaggy, her episodes are needing less intervention.
I was able to take the kids out for just an hour after our appointment. We saw the Omnimax movie "The Mystery of the Nile." During the hour ride home I was thinking how nice it was to do something normal with them, like we used to all the time. The sun was shining. We had been out of the hospital almost 2 weeks. Frankie is looking good. We got home and got settled. I hooked up her pulse ox and her sats kept dropping. For the whole night I had a hard time keeping them up. I filled with dread at the thought of going back. But by morning she began to pick up and had some days of great variability. Life with Frankie is a roller coaster ride. We did not have to go into the hospital but Mark happened to leave for California that day!
Sunday morning as we were getting ready for church the house flooded. Somehow showering upstairs caused flooding in the main floor bathroom. Water poured down the basement into our classroom on the bookshelf of many of our school books. Mark still was not home so his dad came over and we spent the rest of the day cleaning up and trying to fix the problem. Thanks to the hard work of his parents, uncle, and brother we were able to use the bathroom again. Mark got home just in time for me to leave for work. He reminded me, just because we have had a tough year with Frankie does not mean we are immune to the regular frustrations of life. (Sounds like something a man coming off time away would say!) But he is right. When I feel discouraged I think of the saints that went before us and all those who continue to pray for our baby and our family. I am eternally grateful.
THE ART OF SUFFERING
Moses told the Israelites, "Remember how the Lord led you in the desert these forty years to humble you and test you... causing you to hunger...to teach you that man does not live on bread alone, but on every word that comes from the mouth of the Lord...As a man disciplines his son, so the Lord disciplines you" (Deut. 8:2-5)
Friday, June 3, 2005 1:27 PM CDT
Francesca is doing much better. All sick symptoms have resolved including her abdominal pain. Her saturations have returned to normal, back in 1/2 liter of oxygen. Therefore, did not have to undergo the cardiac catheterization this week. She is still on the schedule for later this month but if she continues to do this well, I want to see if we can make it later. She is her happy self again. It is nice to see her so comfortable. Her weight continues to be an issue. Now that she is doing better we will challenge her on rate and increase the calories again. Hopefully, this time we can make some progress. We have another checkup next Wednesday at the Clinic.
The Lord is right in everything he does.
He is loving toward everything he has made.
The Lord is ready to help all those who call out to him.
He satisfies the needs of those who have respect for him.
He hears their cry and saves them.
The Lord watches over all those who love him.
Psalm 145:17-20
Sunday, May 29, 2005 5:55 PM CDT
Francesca began to improve Friday. No more fever, her belly pain improved (maybe a side benefit of the antibiotics used to treat her ear infection.) She is getting Augmentin twice a day in addition to her regular medicines. Her sats are getting closer to baseline with the exception that she is still in one liter of oxygen, twice what she normally requires. Because the doctors cannot effectively give her much more oxygen, I can give her medicines from home, they allowed us to go home Sat knowing that she has to come back on Wed. She is on the schedule to have a heart catheterization. If everything looks excellent up until then, we will just have a checkup.
We were able to pull off Maria's First Communion, finally! (On the feast of the Body and Blood, in the year of the Eucharist!) It was not the bash we had planned but she was very enthusiastic about receiving Jesus, which is what the day is about anyway. We did accomplish that.
Francesca has not gotten any worse since we have been home. We will do our best to regroup before going back in.
PSALM 142
I call out to the Lord, I pray to him for his favor.
I pour out my problem to him. I tell him about my trouble.
When I grow weak, you know what I'm going through...
Lord, I cry out to you. I say "You are my place of safety.
You are everything I need in this life."
Listen to my cry. I am in great need...
My troubles are like a prison. Set me free so I can praise your name.
Then those who do what is right will gather around me because you have been good to me.
Thursday, May 26, 2005 8:30 PM CDT
Francesca is not doing any better. She continues to have fever, nearly 104. Wed evening her R eardrum looked like it was bulging so she was started on Augmentin. All other cultures have come back negative. Best case senario the antibiotic will take care of the infection, her fever will resolve, her sats will get back to normal. Worst case even if the fever resolves her sats stay low despite increased flow and she will have to go back to the heart cath lab next week. Because it sometimes takes days for an antibiotic to take care of an ear infection, we have to wait and it is not unreasonable to still have fever now. But her temperatures seem to be going higher and higher. Today the only time her temp was normal was after giving tylenol and motrin at the same time. Today her saturations were even worse. Instead of being in the 70s, she spent a lot of time in the 60s despite being in a liter of oxygen. Her belly remains distended. Her formula was changed from Isomil 30cal to Alimentum 27cal. She has periods when she is playful and smiling. Is not screaming. Today is the last day of methadone twice a day. Tomorrow it goes once a day. Frankie must have heard it was a holiday weekend and couldn't stay away. It looks like we will be here awhile.
Wednesday, May 25, 2005 5:52 AM CDT
Francesca was readmitted to Cleveland Clinic on Tuesday evening. Monday night she was having difficulty maintaining her sats even asleep. I increased her oxygen from 1/2 liter to 3/4 liter, called the doctor in the morning. We made some changes to her feeds (over the weekend we had increased her calories to 30cal/oz which is goal for her but it is so rich that she has trouble with digesting it sometimes.) We left it at 30cal but decreased the rate. Her belly looked very round but still soft. Maybe that was enough to make it difficult to breathe. By afternoon she was running a low grade fever. We went to the pediatrician to rule out routine infection but nothing was found to be an obvious source. So we came up to the Clinic. She continued to have trouble keeping up her sats, now even in a liter of oxygen. She had a restless night and her temp went even higher. We will see what the docs have to say this am. I have no idea what to expect, or how long we will stay. As always the kids are struggling with the separation and uncertainty that has become their routine.
Saturday, May 21, 2005 1:14 AM CDT
With great anticipation we returned to Cleveland Clinic for Francesca's follow-up because she has been excessively fussy for the whole week that we have been home. Whenever her GT is touched she goes through the roof. She awakens screaming in the night every couple of hours. Even in the hospital she would receive ativan for her screaming episodes. The surgeon has absolutely no idea why she is so uncomfortable. It has been exactly a month since her surgery. She should not have post surgery pain. He had nothing to offer because he does not know the reason for her screaming. We spent 2hrs in the cardiologist's office before seeing the surgeon, then got sent back to cardiology to figure out a plan. None of the options seem ideal. After much deliberation it was decided to put her back on methadone, in case she is having withdrawl symptoms. If not she may get some relief.
Despite increasing her calories (from 20 to 24/oz) after discharge, she lost weight. Her echocardiogram showed slight narrowing in her pulmonary veins. Although she is not having rapid breathing, he wants to take her back to the cath lab next month. I was sure hoping to stay out of the hospital for the month of June. She has been in the hospital every month since she has been born last August.
But she will need a heart cath before her next heart surgery anyway. It will provide necessary information to help determine when surgery will take place.
From THE ART OF SUFFERING
"Submit to any part of the suffering that is unavoidable, not reluctantly as a defeated general might submit to his conqueror, but voluntarily, as a patient eager for health submits to the prospect of surgery. Submit joyfully, like a woman awaiting childbirth even though she dreads the birth pains. If God's plan in your pain is evident, respond with humble obedience; if not evident, respond with humble faith."
I am feeling more like the defeated general and not very joyful. I pray that all bitterness may be stripped away and I become stronger so that I may fully benefit from these relentless trials.
Monday, May 16, 2005 1:15 AM CDT
Francesca was treated with IV fluids until her lab work was back to normal and she could tolerate her feedings again. The radiology studies showed nothing abnormal. The doctors have no idea why she is presenting this way, especially after her bowel was repaired. The interesting correlation is that of the three episodes she has had of this (acute onset vomiting for an hour, then later 3 consequetive grossly bloody stools) 2 episodes started during physical therapy. The question is whether the increased exertion, prolonged crying, poor heart function could be contributing to an ischemic event that causes her bowel to slough off causing the bloody stools. It is pure speculation at this point. All I know is that we are very sick of our home away from home! These frequent admissions are taking its toll on the family. Now Mark is having physical manifestations of stress. I am fighting despair, always feeling pulled between staying with Frankie at the hospital and being present to the other kids. We hardly seem home long enough to catch things up before we're back at the hospital again. The familiar scene: she gets sick enough to be admitted, packing of the car, kids crying, Mark left alone to deal with it all for who knows how long. Will things ever be normal again?
Frankie's color is not great despite oxygen. She has not gained weight in two months, although she continues to get longer. She was able to come home Sat. evening with follow up Friday.
Please pray for the grace of God to help us through one more day, for her continued recovery and for reparation of family relationships that have been strained in my absence.
Thursday, May 12, 2005 10:20 PM CDT
Well, it has only been a week and Francesca and I are on our way to the Cleveland Clinic again for her 14th admission. She started with loose stools at the beginning of the week and at noon today she started retching. The doctors had me vent her feeding tube which stops her feedings and at 3:00 we hooked up Pedialite. She was tolerating this ok but her stools continued to get worse, she looked pale and her heart rate was up so they are sending us back to the hospital. Who know how long this admission will be. The admissions can be so hard on the rest of the family. The kids are home with Mark right now but please keep them and Frankie and I in your prayers. I know that those prayers are what sustain me in the difficult times.
Thursday, May 12, 2005 1:12 AM CDT
We survived the weekend. The kids and Mark are recovering from various viruses. Frankie is having some loose stools but not getting any worse. We are tweeking her Lasix dose so she does not get too dehydrated. It is always a delicate balance with her fluids. She seems to be uncomfortable but consolable. She is not gaining weight. She has been around 14 1/2lbs since she had Rotovirus in March. Hopefully that will change as we increase her calories. I am still trying to reorganize the house and correct bad habits from my long absence but it is good to be home.
Saturday, May 7, 2005 0:28 AM CDT
Francesca made it home Thursday afternoon. We've had our challenges with re-entry but it is good to be home. She had to come home with oxygen again and is on lasix three times a day which are both things she did not have before surgery. Hopefully as she gets stronger she will be able to do without them. We are continuing to increase her feeds slowly. Monday I will contact the dietician and begin increasing the calories so she will start to gain weight again.
Friday as I was leaving for work at 10:30 at night, some of the children began vomiting. Mark does not feel well, either. Please pray for a speedy recovery and that Frankie does not get sick or we will be going back to the hospital. With sincerest gratitude for all the prayers and support.
Jean
Wednesday, May 4, 2005 2:54 PM CDT
Francesca has had a hard couple of days. She had persistent, high fever since Monday. Every kind of infection was considered and found negative so they pulled her pic line Tuesday afternoon. In order to do that she had to get off the supplemental IV nutrition. Consequently her feedings had to be advanced quicker than planned. The good news is she tolerated that well. She is up to 25cc/hr. and will be up to goal by Friday am. She has had no fever since the pic line was pulled meaning the line itself was probably infected. IV antibiotics will continue one more day. She looks much better today.
Sunday, May 1, 2005 11:18 PM CDT
Francesca spiked another fever Saturday night. Blood cultures were sent to see if there is bacteria in her blood stream. We nearly lost her pic line in the process. Now no labs will be able to be drawn from the pic line, she will have to be stuck for anything they order from now on.
She continued to have fever on Sunday. This time acting more sickly. She slept a good part of the day which is really unlike her. She remains in oxygen, having only periodic desats. She is up to 10cc/hr. with a goal of at least 27cc/hr.
Saturday, April 30, 2005 4:11 PM CDT
Francesca had a very difficult night. Friday evening she became very agitated. Has a hard time maintaining her sats. Is back in oxygen. Ativan helped her calm down but her respirations were more labored than usual. Unfortunately, Mark and the kids were visiting at that time. It is harder when they see her not well. By 2am she spiked a temp even on antibiotics. She remained up most of the night. Her chest Xray and echo do not show an obvious reason for her decline. Her feeds are advancing ever so slowly. She is up to 7cc/hr of half-strength breastmilk. This afternoon again awoke from a nap very agitated, pale, dropping her sats even in oxygen. Again Ativan calmed her down enough to rest but the cause is unclear. At this rate we will be here several more days.
Your continued prayers are much appreciated,not only for Francesca's recovery but for patience and endurance for Mark, as well, as he has to carry the burden at home for both of us.
From THE ART OF SUFFERING
"No horse gets anywhere until it is harnessed. No steam or gas ever drives an engine until it is confined. No Niagra is ever turned into light and power until it is tunneled. And no human life ever grows great until it is focused, dedicated, and disciplined." Such maturity can result from trials in life, properly accepted; St. James reminds us: "The testing of your faith through trials develops perseverance...so that you may be mature and complete" (James 1:3-4).
Wednesday, April 27, 2005 4:15 PM CDT
Francesca continues to progress slowly. Today is day 7 since surgery and just starting very small amounts of pedilyte to her G tube. She got a urinary track infection from the foley catheter and will require 7 days IV antibiotics. She is still on a small dosage of morphine to help control her pain. Each day her disposition gets somewhat better.
Ten days away from home has gotten the best of me today. Knowing so many are praying and take the time to write on this website helps more than you know.
O Lord our governor, we beseech Thee, of Thy mercy,
That we may have the heavenly vision,
And behold things as they seem unto Thee,
That the turmoil of this world may be seen by us
To be bringing forth the sweet peace of the eternal years,
And that in all the troubles and sorrows or our own hearts
We may behold good and so with quiet mind
And inward peace, careless of outward storm,
We may do the duty of life which brings to us
A quiet heart, ever trusting in Thee.
Sunday, April 24, 2005 11:40 AM CDT
Francesca was moved from ICU to the cardiac step down unit yesterday afternoon. Her morphine drip was decreased and she is tolerating that pretty well. She has gotten Ativan only a couple of times in the last 12 hours. Although not happy, she is crying less. She was bathed for the first time since surgery, and did well. Many thanks for your continued prayers.
Friday, April 22, 2005 10:48 AM CDT
Francesca had a pic line inserted yesterday afternoon that will ensure IV access for the rest of her hospitalization. She now has a morphine drip for pain and intermittent ativan that has kept her much more comfortable. They will attempt to wean her Nipride.
Your prayers are much appreciated. I have to work the next 2 nights and if she goes to the floor, supervision is an issue. Please pray for her safety and continued recovery.
Thursday, April 21, 2005 8:02 AM CDT
Francesca had a very difficult night. She was very uncomfortable despite an epidural and morphine. She got Ativan with the last dose of morphine and is resting for the moment. She was started on a Nipride drip for high blood pressure. She is back in oxygen for the time being. She may have to go for another surgical procedure to get a central line since she has few sites left for an IV. Hopefully we will work on getting her more comfortable today.
As always your prayers are appreciated. It is hard to keep my emotions in line with so little sleep and her so uncomfortable.
Wednesday, April 20, 2005 4:06 PM CDT
Francesca arrived in PICU around 3:30pm. The surgeon was pleased with how things went and accomplished everything he set out to do. She is trying to get settled in and get comfortable. She is pinker than I expected she was able to be extubated after surgery (she got off the breathing machine). She has an epidural to help with pain management.
Thanks to your fervent prayers, she has made it through another major hurdle and I was able to remain calm in the waiting (a miracle itself). She has a long way to go but we are hopeful and forever grateful for your loving support, even of those we have never met.
Wednesday, April 20, 2005 8:53 AM CDT
At 9:00am Wednesday, Francesca went to surgery for a Nissen fundoplication (to prevent her from vomiting), a Ladds procedure (to prevent her bowel from twisting), an appendectomy (so it won't be possible for her to get appendicitis in the future) and pylormyotomy (to get rid of any thickening at the exit of the stomach). It will be a 4-5 hr surgery. She will be in intensive care for several days. Feedings will not be started for at least 5 days. We expect to be hospitalized about 2 weeks. She was in good spirits this morning before going. I will try to update later today when surgery is finished.
Monday, April 18, 2005 4:59 PM CDT
Francesca tolerated her feedings well and went home very late Saturday night. She did very welll all day Sunday. When it was time for bed she began vomiting again. Six consecutive times. I called GI. We stopped feeds but she continued to vomit. We went to Akron Childrens where her Xrays looked suspicious for bowel obstruction. An IV was started and we came to Cleveland Clinic via ambulance. We were admitted to PICU and went to radiology at 0200 to see if barium would go through the small bowel. It did, meaning there was no obstruction at that time. We went back to PICU and she had another bloody stool. The same presentation as Thursday. The best hypothesis is that her bowel is intermittently twisting causing an obstruction and sloughing of tissue inside the intestines, then corrects itself and she acts normally. The solution is to take her to surgery. We initially had her scheduled for Monday, April 25 but it may be moved up to Wednesday the 20th. We will know more tomorrow. All the stool studies are negative for infection. She is doing better today but probably not safe to go home in case it happens again. She cannot eat for awhile and needs IV fluid.
Once again, your prayers are appreciated. We are not as prepared as we would like to be with child care,etc.
Friday, April 15, 2005 1:07 PM CDT
Francesca was admitted to Cleveland Clinic again Thursday night. She started vomiting 1200 Thursday. It seemed like her Corpac tube might be out of place. We went to Akron Chilrens but the radiologist said the tip was in the right place although some of the tube was coiled in her stomach. At 1500 she had a suspicious looking stool, seemed more pale than usual, and was fussy. I spoke with the GI doctor who said if she gets any worse to call back. At 1800 she had another funny looking, foul-smelling stool. I called back and she sent us in. At 2000, she had a even larger, melon-colored, foul-smelling stool that was positive for blood. She has been NPO and on IV fluids since we came in. An ultrasound looked negative for bowel obstruction. We are awaiting the GI doctor to come around to see how to proceed. The stool studies are coming back negative for rotovirus and C diff. Once again she is a puzzling presentation without clear cut answers.
Please keep our family in your prayers. Mario got croup again last night.
Saturday, April 9, 2005 10:49 PM CDT
It was another difficult week for Francesca. After long deliberations and desperate grasp at alternatives, she is going to have to have abdominal surgery to stop her from vomiting. Her frequent emesis puts her lungs at risk for aspiration which would further compromise any new lung tissue that is forming. Her lungs need to be in the best possible shape to do well with her next open heart surgery. She is outgrowing the BT shunt that was placed in the initial open heart surgery when she was born. The good news is that oxygen is not as necessary. We were able to take that off of her on Thursday night. Her sats have not suffered much. The bad news is that as soon as she recovers from this abdominal surgery, she will be assessed for the timing of her next open heart procedure.
Mark and I spent most of the day at Cleveland Clinic on Thursday including an Xray to check the placement of her feeding tube that goes from her nose to her small intestine. Last Thursday night she pulled it part way out and I had to take her back into Akron Children's Radiology department to have it put back into place. I get so incredibly irritated at all the time spent in waiting rooms instead of being with my children. Every time we come into the hospital we get a complementary infection. The last one put us in the hospital for a week. Now she has nasal congestion and mild cough. She had been uncomfortable all day Saturday. Just not herself. She still brightens up when her siblings come in. They can get her to smile occasionally.
I will be in contact with the general surgeon at the beginning of the week and will attempt to schedule a date for surgery.
If not for those volunteers who continue to reach out to help our family, we surely would have folded in despair by now. Many thanks for those who continue to pray. Your comments on this website are the best source of encouragement to me.
From Turning Trials into Triumph
"St. Monica's many years of prayers and sacrifices for her son were a prolonged trial of anguish for her. However, her belief that the Lord would 'make all things work together for good for those who love him' (Romans 8:28), was rewarded with the conversion of her son living in a cesspool of evil, the great St. Augustine. From her prolonged trial of anguish there emerged a tremendous triumph of grace: both mother and son became canonized saints."
Monday, April 4, 2005 6:28 AM CDT
Frankie seems to be recovering from her hospitalization but as I increased the calories in her milk, she began to vomit again. We have an important appt on Thursday with cardiology and GI to discuss surgery. None of us is ready to go back to the hospital in the next 2 weeks. I am not totally convinced this surgery will solve her problems. Please pray for the wisdom in making this decision.
"Whether you eat or drink, or whatever yo do, do everything for the glory of God." (1 Cor 10:31)
Sunday, March 27, 2005 4:09 AM CST
Thursday Francesca was started on Isomil DF (diarrhea free) formula. By Friday her stools were slowing down in frequency and became thicker. Friday night she only had one. Saturday am she began to look more like herself and became more alert. Her cardiologist felt comfortable sending her home although her meds and fluids are still being managed sensitively. We were able to come home Sat. afternoon. We are all exhausted and worn out. It will take some time to get settled but it will be nice to be home for Easter.
"If we share in His sufferings, we also share in His glory" (Rom 8:17).
Thursday, March 24, 2005 11:07 AM CST
Francesca is doing poorly. We were ready to come home Wed. but she took a turn for the worse. She began stooling hourly and got dehydrated again. Her fever returned. She cried all afternoon which makes her drop her sats. She is not herself at all. Instead of making progress with her calories, we are back to pedilyte again. That helped her have fewer stools last night. She finally was able to get a few hours sleep. Her IV clotted off this am so if she needs more fluids later, that will have to be restarted which is a very difficult endeavor.
Things on the home front are going poorly, as well. Mario has lost weight but it seems that the vomiting has subsided although the diarrhea persists. Both Mark's mom and my mom are unavailable, so we are very short on help. It is always very stressful on Mark to have to manage all the details of home and keep his rigorous schedule at work. I don't know how much longer we will have to be here. She is not at all stable. I am scheduled to work Friday and Saturday night. I have vacation time but cannot take off because we are already short staffed being Easter weekend.
Keep us in your prayers!
Tuesday, March 22, 2005 11:58 PM CST
Francesca had a rough night Monday. Her feedings were started with low cal formula at a low rate but by 1130pm she was breathing 60-80 a minute and working hard. That continued all night. A chest Xray showed that her lungs were "wet". The doctors have held her lasix (a diuretic) for the last couple of days because of her dehydration. Now that she got IV fluid and feeds restarted she had too much fluid on board. She got a dose of lasix around 0500 with good results. She got another dose later in the morning and her breathing improved. She is just so sensitive to her water balance. She just does not have much of a reserve. Her diarrhea was not seem that severe to cause such a reaction.
Her stool culture came back positive for Rotovirus. There is no cure. The treatment is treating the symptoms until it resolves. She did stay on formula all day. Only able to go up to 24 calories/oz before stooling again. She will stay on that until Wed am. We may advance to 27cal in the morning if she does well overnight.
My friend, Germaine, came up to stay with Frankie while I am at work from 11pm-7am Tuesday night. I am trying to save my vacation for when she has the bigger surgery.
Mark is trying to hold down the fort at home. Mario now has fever, vomiting, and diarrhea. Please, pray for lots of patience and a speedy recovery!
Monday, March 21, 2005 2:50 PM CST
Francesca had a difficult week. Last Tuesday was immunizations. Friday her feeding tube was blocked. We had to go to Akron Childrens Radiology Dept to have it replaced under flouroscopy. Early Sunday am she developed some loose stools and fever. By nightfall she was getting dry and going downhill fast. The cardiology fellow wanted us to come to Cleveland Clinic by squad. We had to go to Akron Children's first. Her sats were in the 40s when we got there. She went from a 1/2 liter to 2 liters of oxygen to a mask with 100% but still only in the 60s and 70s. They started an IV, got blood work, and chest Xray. We got to the Clinic after midnight by ambulance. It was the sickest baby either paramedic had ever transported. We spent the night in ICU. She responded well to IV fluids but her sats remained low. Her echo looked about the same as before. We went to step down and restarted feeds with Pedilyte. She still has fever but not as high as yesterday (103). She is crabby from lack of sleep and just does not feel well. Because of how fast she decompensated, her cardiologist wants us to stay until her diarrhea has resolved and she is back up to full feeds.
Please pray especially for Mark and the kids. Our urgent departure causes them to be more upset and concerned. It was Dominic's 6th birthday and we hadn't gotten to cake and presents. But Anthony tried to make it special despite the tumult.
I will try to update as soon as possible.
Thursday, March 17, 2005 2:43 AM CST
Francesca continues to gain weight, slowly but surely. The good news is we did not have to go to Cleveland this week. The bad news: she had to get her six month shots at the pediatrician Tuesday. She was up with fever and irritibility most of Tuesday night. Her breathing and heart rate were quite elevated. I am working Wednesday night but seems to be doing OK for the nurse with some motrin. Hopefully she will perk up tomorrow. We have spent most of her first holidays in the hospital. Let's hope she can stay at home and celebrate St. Patrick's Day!
I often get discouraged with my many limitations and feel inadequate to manage well all the responsibilities of our household. The many comments on the guest book keep me encouraged. It is great to hear from those I have not met or those who I haven't spoke with in awhile. It is even greater yet to know even more are praying for our family and that so many are interested in her condition. I am forever grateful for your support. Please, write in with your favorite saint or person who inspires you.
from THE ART OF SUFFERING
Even the very painful awareness of our faith-weakness can be used by God to help us grow in humility. God will build on even a miniscule bit of good will, as Scripture reminds us:"He who began a good work in you will carry it on to completion" (Phil.1:6)
Saturday, March 12, 2005 5:19 AM CST
Although this pace has been tough, Francesca made it through another week without a hospitalization. Even though she continues to wretch and vomit, she has gained some weight. No major decisions were made this week because her cardiologist was out-of-town. We are continuing to collect information for or against having the Nissen fundoplication done.
I have had difficulty keeping up with our schedule: Frankie's frequent appts, therapies, shots,etc. combined with the other kids' activities. I have been struggling with a negative attitude so I asked my sister, who beat breast cancer at age 30, how she remained positive through her ordeal. She kept a gratitude journal. So for the next 24hrs I reflected on the myriad of things I have to be thankful for. My outlook improved in just a day! As always with abundant gratitude for all those who continue to support us faithfully through help or prayers.
from THE ART OF SUFFERING
A careful reading of James shows that a distinction must be made. Certainly not everyone matures through the adversities and hurts of life; pain can cause some to turn against God in bitterness. For these, suffering is not a stepping stone, but a stumbling block; it's a grindstone grinding them down rather that polishing them up. Those who accept God's pruning, produce; those rejecting it grow sour grapes. There's nothing like real tribulation to separate the faith-hardy from the faith-weak. As suggested by the origin of the very word tribulation, from the Latin work "tribulum', a rod use to beat the grain to separate the kernel from the chaff. Tribulations sift the mature from the immature.
Hardship and suffering will not cause our development, but rather our spiritual retardation unless we are UNLESS we are intimately Christ-linked in the closest union of love. The pruning causes fruitfulnes ONLY in those branches nourished by grace-sap flowing from the Vine, as Jesus said: "No branch can bear fruit by itself; it must remain in the vine. Neither can you bear fruit UNLESS YOU REMAIN IN ME" (John 15:4).
Thursday, March 3, 2005 4:45 AM CST
Due to inclement, weather we cancelled our trip to Cleveland Wednesday. I spoke with both her cardiologist and GI doctor via the telephone. The good news is that Frankie continues to gain weight because she is not vomiting milk. The bad news is that all her troubles are related to reflux and that the surgery to prevent her from vomiting is probably indicated. All the doctors that are on the case will have to collaborate on when this will take place. (Her cardiologist will be out of the office all next week.) I was told previously that it would be a 3hr surgery and probably a two week admission. Her cardiologist will have to decide how/when she will be able to tolerate the procedure.
We would appreciate your continued prayers. She has only slept well 2 nights in the last 7. Please pray for her comfort and my stamina during this difficult time. And to help our family with this upcoming separation.
from THE ART OF SUFFERING
"Every single hardship, whether it be the annoyance of a traffic jam or a death in the family, is designed to help us grow in some way; if it were not beneficial medicine, God would not prescribe it, "for he does not willingly bring affliction or grief to the children of men (Lam.3:33)God allows only those sufferings he deems necessary. Like a parent subjecting a child to painful surgery, he does not hesitate to subject us to hurts that he has designed for our spiritual health or growth."
Saturday, February 26, 2005 3:51 AM CST
It is with deep gratitude that we are celebrating: today Frankie is 6 months old! Who would have thought all those months ago when we were first diagnosed in utero with such a rare congenital heart defect with odds so daunting it squashed hopes for her survival. A heart so pitifully formed that even those with untrained eyes could see this inefficient "clumpety clump" of a beat. A heart so lacking in its parts that there is no "blue blood" "red blood" differenciation, the oxygen saturation about equal throughout. A pump so lame one wonders how she could be pink at all or how her tissues could possibly be perfused.
Only by the grace of God! In His infinite goodness he has allowed her to live with a detailed pupose for her life - the extent of His work unknown to us yet. For every great hurdle she overcomes the greater the miracle her life is. Despite another agonizing week, however fractured I feel, however concerned I am for our family's state; we can be grateful for another day with Frankie.
Thanks to a community who have never stopped praying, we are kept afloat for another week.
With deepest gratitude from all of us.
Sunday, February 20, 2005 2:52 PM CST
We made it through a very draining, frustrating week. The feeding tube that was placed Monday ended up being too big. The diameter of the tube blocked the pyloris (the exit of the stomach) which caused her to vomit by not allowing her stomach acid to exit. She ended up with a ND tube that goes from her nose to her small intestine. This tube has a very tiny diameter. The drawback is that we are back to a tube in her nose which is extremely hard to keep in place with such busy hands! If she does pull it out it means a trip to the emergency room for placement.
It is very difficult to be away all week. We did not come home until Saturday afternoon. I am met with the usual overwhelming tasks of re-entry but it is good to be with the kids and Mark again.
From THE ART OF SUFFERING
The Crecopia moth normally engages in a great struggle when emerging from its cocoon, an effort essential to its expansion and growth. Snipping open the cocoon of such a moth, to ease its struggle, would leave it crawling helplessly with crimped and shriveled wings. Just as the struggle of the emerging moth provides for its natural development, so also our hardships in life are designed by God for our spiritual development.
Through God's grace as a result of the continued prayers on our behalf I pray to be patient through this most difficult struggle until he has revealed the deeper purpose for which He is preparing us.
"The testing of your faith through trials develops perseverance... so that you may be mature and complete" (James 1:3-4)
Tuesday, February 15, 2005 3:02 PM CST
Frankie underwent the procedure to swap her G tube for a J tube, a tube that will allow for her feedings to bypass the stomach and therefore go straight to the small intestine. The goal was to eliminate her vomiting episodes by not putting milk into her stomach. The procedure itself went smoothly but she still had some episodes of vomiting through the night. The surgeon tweeked things this morning and she has tolerated better throughout the day. She is not her happy self and there are some kinks we will have to work out before discharge. But there are plenty of good doctors on the case who will come up with a suitable plan.
Thanks to all your continuous prayers I feel like I have made a breakthrough in my faith journey. (It took me long enough!) Over the last 5 months my faith has been challenged as never before. Many aspects of my person have been stripped away one-by-one. God has been pruning the dead wood and I have resented the painful parts of that. My biggest mistake was questioning if He were still there, if He knew what He was doing, and in many aspects the "why me or why us" questions came up. By trying to be a faithful disciple I did not understand why He had given us this particular cross. In many many instances I felt the family was falling apart. I thought of our family situation as a ship quickly sinking and I was responsible for keeping it afloat: failing miserably.
After talking with another mom who has a chronically ill child, I was able to see things differently. Not only did she validate so much of what we were experiencing, she helped me believe again with the utmost assurance that we were walking in God's plan. Although unknown to us now the extensive ways He is working, I can better be patient until that is revealed to me at some later time. I was able to close that door of doubt forever, knowing He has not forgotten us and that Frankie's ordeal and the suffering of my family will not be in vain. I can stand before my children, without all the answers but with confidence that we are being used as a vessel for His goodness, to further His kingdom in ways unknown to us now. Because of all those who have been praying faithfully, I have received the grace to patiently endure whatever comes next. It has made such a great change in my attitude. Like a tire leaking air, all the doubt and questioning drained the energy that I so desperately need right now. I can now think more clearly and am free of that self-absorbed, drowning feeling. Our situation is far from over but I can "count it all joy, for the trials we face will bring us closer to God."
With the utmost gratitude for holding our family in your prayers. It has made a tremendous difference!
Saturday, February 12, 2005 0:17 AM CST
Francesca is scheduled to be admitted to Cleveland Clinic on Monday morning. She will be NPO at 8am, get an IV started, then go for the procedure around 2pm. The doctor will take out her GT and replace it with a J tube which will look like a GT from the outside but have a longer extension on the inside to reach past her stomach into her small intestine. Hopefully this will relieve the vomiting and she will be able to gain weight better. We are expected to stay 2-3 days if all goes well.
I am having trouble staying on top of all the details. So many aspects of her care change so often, I haven't been able to establish a good organized system to handle all the phone calls and paper work. It is even harder when my brain and my mood seem so sluggish. I am grateful to be able to plan for this hospitalization. By getting the kids situated and some advanced notice to pack, hopefully will make this go smoother. I am so grateful for all those who continue to offer help in various ways. I surely would have folded by now without your generous offers!
"Rejoice that you participate in the suffering of Christ, so that you may be overjoyed when his glory is revealed... you are blessed, for the Spirit of glory and of God rests on you" (I Peter 4:13-14)
Sunday, February 6, 2005 6:15 AM CST
Francesca had another echo Thursday. The good news is that the right lower and left pulmonary veins seem to be staying open with good flow. The bad news is that the right upper can no longer be seen. Whether it has closed completely or just cannot be seen anymore is unsure. There was discussion whether to take her back to the cath lab, but because her saturations are stable they decided to wait.
Francesca continues to have problems with vomiting. The biggest concern is that she is at increased risk of aspiration (breathing in stomach contents) into her already compromised lungs. We were unable to get the results from the ph probe on Thursday because the computer did not print out correctly. The GI (gastrointestinal) doctor would have to hand score it from the computer data. Dr. Stallion (the surgeon who put in her GTube), Dr. Younoszai (her cardiologist), and Dr. Hupertz (GI) needed to talk collectively to decide whether she needs a 3hr surgery to make it so she would never be able to vomit again. Dr. Stallion would also correct her malrotation of her bowel at the same time but he was hoping to wait much later when she is bigger, or at least after her complete heart repair.
They decided to put her into the hospital in the next 2 weeks and attempt to put a feeding tube past the stomach into the first part of her small intestine. Instilling her milk there, may relieve her vomiting. If that works she will not need the surgery and we will go home feeding her that way. If not she will have the surgery and be hospitalized for 1-2 more weeks.
This coupled with events involving the other children have made things overwhelming again. It has been a relief to be out of the hospital almost a month. At least we will have some notice of when she will be admitted and hopefully be able to plan better. We appreciate your continued prayers!
Saturday, January 29, 2005 8:43 AM CST
Francesca has managed to stay out of the hospital for another week! What a difference it makes to be home for a prolonged period of time. It has been 5 weeks since her last cath. The longest period she has gone so far. Her reflux is causing her the most grief right now. She is not tolerating her feeds well but she remains pleasant for the most part. Next Thursday she will see general surgery to change her G tube from the long temporary tubing to a "Mic-key button." She will see cardiology and have an echo. Then finally to GI to discuss what to do about her reflux. In the meantime she is adjusting to some new faces. We have had some nursing help that has brought much needed respite. Hopefully Mark will be able to post new photos soon so you can see how she is changing. She is still very responsive to her siblings and often laughs openly at their antics. Thanks again for the continued prayers and support as well try and get life in order again.
Saturday, January 15, 2005 10:29 PM CST
Francesca seems to be settling in at home. Tuesday Children's Home Care came to the house to talk about getting nurses. Wednesday she had a shot to help prevent RSV. It is so hard to have that done right after being in the hospital, but we can't afford to let her get behind on her immunizations. She was a little crabby afterwards for a few days but not like the pain she had with the G tube. There are no nurses to cover my 2 night shifts at this time so one came on Friday and another on Saturday during the afternoon and evening. They are both very kind but Frankie seems to know the difference and would not always settle down for them. When she cries, she drops her saturations. She does not tolerate a bath, G tube care, or even a diaper change very well. Overall, her sats were lower today than she has been all week. I am praying that it is something transient and not beginning a decline that will take us to another catheterization.
With the extra help I feel like we are making some headway in getting the house back in order. The pantry is stocked, the laundry is staying caught up, the housecleaning is getting done more thoroughly. We accomplished a great deal of schoolwork. If we can stay out of the hospital, I think this progress will continue. The children continue to be involved in Frankie's care, especially Maria. At any given moment there can be a discussion about what her sats are doing, how she looks. Someone may be making her laugh or wanting to hold her. She remains extremely alert and aware of her surroundings. I pray that she will continue to improve and that Mark and I will be strengthened to persevere.
Tuesday, January 11, 2005 7:54 PM CST
WE'RE HOME! How good it is to be home again! To sleep in a bed! To see my husband and children again! It is so hard to be away for so long and so often. Some friends arranged to do all the laundry the day I came home - all 20 loads! All I have to do is put it away. It has been so nice to have such caring, giving people consistently giving us a hand.
Frankie is doing much better. We are working on increasing the rate and calories of her feeding. She is tolerating well so far. She had a decent rest last night. We continue to work on getting nursing help. It is a long process.
Now that Frankie is not in pain I hope to get new pictures to post. Thanks for the tremendous outpouring of support and encouragement!
Saturday, January 8, 2005 10:36 PM CST
Frankie's feeds were advanced to breastmilk mixed with pedilyte. She was fussy a good part of the day. By noon she got a dose of tylenol. I am frustrated because a child should not need to be medicated to eat. Something is wrong when a child is happier NPO than when she is being fed. At 4pm she cried for a long time but that was when her IV infiltrated. She needed the IV for antibiotics. The resident could not find a vein worth trying to stick so she was switched to antibiotics via G tube until morning. She did perk up awhile afterward but did not sleep much all day long. I had to work 11-7:30 last night and only slept an hour and a half before coming back in tonight. My mom is staying with her in case she cries but hopefully she will sleep well. I will return to the hospital as soon as my shift ends. I want to make it back to speak to the doctor to find out what the plan is for discharge.
"Come Holy Spirit, and enkindle in my heart the fire of God's love. Fill me with your power so that I may be Jesus' witness in my family and community. Come and bring forth your fruit of joy, patience, and goodness in my life."
Friday, January 7, 2005 10:36 PM CST
Frankie did much better Thursday night. No screaming episodes but she remained without food until Friday
evening when some clear liquids were given through her tube. She cried initially but settled down. The surgeon will continue giving clears continuously until morning and then try milk. He is going to take it slow with her since he is not sure what is causing her pain. IV antibiotics will be continued as long as her IV holds. Her G tube site already looks better. At least we are not going anywhere until her pain is resolved and feedings are fully resumed.
We have qualified for medicaid waiver that will help provide a nurse to give us respite care and cover my shifts at work. The process is time-consuming to get in place but will truly be the welcomed reprieve that our whole family needs. We are looking for home health care nurses who are comfortable with babies to sign up for hours. I am also looking for more help with the other children, as well, so I can get the house running again.
ROAD OF THE CROSS - A CROSSROAD
The road of the cross is really a crossroad - a junction of choice; we must turn either right or left. We must choose either to accept each cross or rebel against it. Our problem is, while we all want to grow, we tend to resist the process required for it. We tend to focus on the hurtful events, rather that seeing with faith-vision the growth God plans for us by means of them.
This passage describes so accurately where I am. I get so bogged down by the immense frustrations involved in Frankie's care that I so resist the process and lose sight of the greater work God is doing. Many of you are suffering as well. May we all draw from the endless pool of God's intense love for us to do better than just survive our circumstances. May we feel His presence in the mist of crisis, gain relief from the heavy burden we carry, and experience the peace that is beyond understanding.
Thanks for all the heartfelt comments on this site that really keep me encouraged.
Thursday, January 6, 2005 3:53 PM CST
Francesca was admitted to the Cleveland Clinic for the 9th time this morning. She has been having problems with pain since her G tube was inserted a week ago Wednesday. She had a particularly bad night last night. I purposely called the doctor at 0600 when she was screaming. He wanted us to come right away. The initial G tube study showed the tube is in the correct place. No leaking noted but she has had nothing to eat for the last nine hours. I personally think she is leaking stomach acid around the tube to the skin causing irritation. She remains NPO (nothing by mouth) and will be getting IV antibiotics to see if that helps. She is currently sleeping, finally! Please continue to keep our family in your prayers, our basement flooded last night and Mark's car is acting up. Thanks for your continued support!
Sunday, January 2, 2005 3:20 PM CST
Francesca was able to come home Saturday evening. It was a very frustrating experience. Her sats are trending downward again, just like she does before she needs cathed. But it has only been 11 days since her last one! The worst time to be hospitalized is during the holidays and we have spent 10 of 14 days at Cleveland Clinic. Many people take off and it is hard to maintain the continuity of care. The echo she had Sat. (not by her cardiologist) was not indicative of any major changes but it does not always show the severity of stenosis. During the catheterizations are when the vessels can actually be measured. When her symptoms worsen to the point of intervention is when the doctors take her back to the cath lab. The surgeon said she should not have much pain with the Gtube yet she is screaming when her motrin is due. I'll have to follow up with him on Monday by phone as well as her cardiologist to let him know why we were not discharged as expected.
Thankfully my mom came up New Year's Eve to help because I got the stomach virus. She was able to care for Frankie while I tried to get some rest and also hold her so she wouldn't get sick.
My mother-in-law made a delicious New Years meal and brought it over to feed the whole family despite a difficult couple of weeks she has had.
When I feel crushed by the stress of this situation I find consolation in a booklet a fellow homeschooler shared with me titled "The Art of Suffering". There is a passage written by St Francis de Sales titled "Your Cross"
The everlasting God has in his wisdom foreseen from eternity the cross he now presents to you as a gift from his inmost heart. This cross he now sends you he has gazed at with his all-knowing eyes, understood with his divine mind, tested with his wise justice, warmed with his loving arms, and weighed with his own hands, to see that it be not one inch too large and not one ounce too heavy for you. He has blessed it with his holy name, anointed it with his grace, perfumed it with his consolation, taken one last glance at you and your courage, and then sent it to you from heaven - a special greeting from God to you, an alms of the all-merciful love of God. That is YOUR CROSS!
Sometimes it feels like I only get the grace to survive the day and get up to start another but somehow we get through. I have much to be thankful for: our house and family is intact unlike the victims of the tsunami. We have so many caring family and friends that are praying us through this. Obviously God is not finished with Frankie yet. I may never know this side of heaven, the impact her precious life is having on others. Everytime we get admitted we meet new residents and staff. May God use her sweet face to bring others to Himself and give me the strength to keep going. With sincerest gratitude for all the support, Jean.
Friday, December 31, 2004 3:18 PM CST
Francesca is tolerating feedings well but we are watching her another night. It has nothing to do with her G tube instead her sats have dropped occasionally. Her chest x-ray looks fine and she is comfortable with Tylenol and Motrin. She smiles sometimes and especially likes being held which I do often. I was hoping to be home for the new year but will follow her lead and spend the holiday in Cleveland.
I gained new insight that is helping me to handle the situation better. I'm in a different state of mind from when we came to the hospital on Tuesday. Thanks to my wonderful friends and prayers I feel stronger.
Thursday, December 30, 2004 3:28 PM CST
Wednesday was very difficult. Francesca's feeds were stopped at 6:00am in anticipation for surgery but she did not actually go until 4:30pm. Mark had brought the kids up in hopes we could all go together to our favorite restaurant in Little Italy. Because of the delay, Mark's parents ended up taking them for pizza and taking them home. Frankie recovered in ICU for a couple of hours. She was extubated right after surgery but her color was poor and it took awhile to wake up. We did make it back to the step down unit but she had a rough night. She was up every 30-60 minutes. At least she was consolable up until 4:00am when her IV infiltrated. The doctors decided to try her GT early. Clear liquids were started slowly and she has tolerated pretty well. She continued to be fussy most of the day but this afternoon she actually smiled a few times. She just now fell asleep.
I was able to talk to a few moms of other heart patients today. One a transplant patient who has been here since October and finally going home. The other child has a condition very similar to Frankie's and she is now 3 1/2 yrs old and doing well. They both were an encouragement to me. I am trying harder to trust instead of worry. Looking forward to coming home soon. Hoping for a good night tonight!
Thanks again to all who have been so helpful and to those who continue to pray for our family!
Tuesday, December 28, 2004 7:14 PM CST
We were so thankful to be able to be home for Francesca's first Christmas although I'm not sure we would call it celebrating. She continued to be uncomfortable and cried most of the weekend. She just was not her usual cheerful self, wanting to be held all the time. The stress of the past week has eclipsed the usual joy of the season. The miracle of the Incarnation should be enough reason to rejoice, but I feel caught in some alternate plane of existence, unable to experience life normally. It is like being locked in a cell, able to see others going about life as they should and not able to participate. She and I only venture out to the Clinic and back (all too often lately!) While the rest of the world is taking 2 weeks off to enjoy the holidays, she is still fighting for her life. I have become obsessed with the details of her care. Fear and worry have become my constant companions. I am terrified that I will make a mistake with her ever-changing dosages of medicines in my sleep-deprived state or that we will be one of those cars stuck in the median in 3ft of snow on our way to and from the Clinic.
Then I was comforted when reading Isiah 49:23 today: Then you should know that I am the Lord and those who hope in me shall never be disappointed.
When I stop for a moment to think about how Mary must have felt as she gazed upon her newborn baby in a foreign land with a king who wanted him dead, I wonder if she feels as inadequate as I in being able to protect her child? Did she know how the sword of suffering would pierce her heart? Surely she could feel comforted that their suffering would not be in vain. So it is with us. I have to constantly remind myself God is still on His throne. He has not forgotten us. He knows the suffering that Frankie has endured. He knows that my children are without their mother a good part of the time and my husband stressed to the max. He knows how limited I am. My constant prayer is that God is doing something spectacular with her precious life and that I may release the constant fear and worry while entrusting her into His capable hands.
For all those who are wanting to help - your prayers are the absolute lifeline to sanity for me! Thank you all for your generous support and interest in our family.
Frankie's cardiologist decided to admit her Tuesday night in anticipation of her surgery tomorrow. It looks like she will be going around 1:00pm for the placement of her Gtube. They have been unable to start an IV yet but hopefully that will be accomplished later tonight. I will try and update again tomorrow after surgery.
Thursday, December 23, 2004 6:59 PM CST
Francesca had a much better night on Wednesday. She and I both slept a bit better. Her color is returning. She is beginning to perk up somewhat. She had no desatting episodes. Her lungs sound clear. The doctors decided to discharge her right from ICU. I was terrified to drive home in the snowy mess. Actually it was plowed well. We made it in about an hour and a half. We'll work on getting settled into a new "normal". As of now she is still going for a GT next Wed.
Thanks again for all the prayers and kind deeds.
Wednesday, December 22, 2004 7:31 PM CST
Francesca had a difficult night. She became so agitated despite a morphine drip and multiple doses of sedatives that the intensivist (the doctor in ICU) decided to extubate her around 1:00am. She tolerated the procedure pretty well. Although she may have been relieved to have the tube out, she remained very agitated. She repeatedly dropped her sats. She received morphine around 4:00am and finally slept about 1 1/2hrs. She received another dose about 0545 but it did not last very long. The frustrating thing is that she looked so good after her last cath but not this time. Her color is poor, she is agitated, breathing hard at times and her sats are no better than when we came in. So if her veins are wide open, her lungs relatively clear then why no improvement in her condition?
These unanswered questions coupled with too many sleepless nights in a row make me a blubbering idiot at her bedside. But as long as she keeps pulling through I will attempt to rise to the occasion and feebly attempt to be a good advocate for her however inadequate I feel.
She went for a perfusion scan (that tells how well the blood vessels are nourishing the lungs themselves.) If the results were poor, there would be little else we could do for her. As I stand at her side while the dye is injected into her IV, the machine scans her lungs, displaying the image before us I am terrified at what the result may be. Could this be the end? Again I am reduced to tears even contemplating such an outcome. As soon as the test is complete I scoop her up into my arms again, wanting so desperately to protect her from any more needles, tests, probes, etc. I am still searching for the person with the magic wand that can correct this ill-formed heart and make this nightmare go away. I want so much to be a normal family again; to be a functioning human being; a responsible employee; a reciprocating friend. But for now we are in survival mode: we have to be the receivers of others generosity. We are so blessed to be in a community of such giving people and are grateful to have such incredible resources.
It turns out that the scan is not that much different from a previous one. The echo done today was unremarkable. She finally drifted off to sleep and slept for a couple of hours. When she awoke this evening, she began to perk up a bit. Some of her color is returning. There is less variability in her sats. She is able to focus again. She is still not herself completely but beginning to improve.
There is talk of discharge tomorrow if all goes well tonight.
Many thanks for your continued prayers.
Tuesday, December 21, 2004 6:36 PM CST
Francesca had a difficult night. She was restless and would not sleep well unless she was held. Her saturations would also improve as long as I held her. She seemed very touchy and would desat for no apparent reason. Her IV infiltrated around 0330. They were unable to start another. The will obtain access in the cath lab.
Francesca went for another heart catheterization this morning at 8:00am. It was a very long procedure. She was not finished until about 1:15pm. Dr. Latson ballooned the L pulmonary vein, the lower R pulmonary vein and attempted to get access through the vein that was initially obstructed in utero. The R vein did not respond to a regular balloon. He had to use a balloon with tiny blades to expand that vessel. The R upper vein had no intervention. Frankie was stable throughout the long procedure but they chose to leave her intubated so we are staying in PICU (pediatric intensive care unit) at least overnight. She is looking pretty pale. She is getting some medication to keep her comfortable but she is still restless. She had one bad episode of desaturation but after about 10min of suctioning and bagging she returned to upper 70s in 30% oxygen per endotrachial tube.
Thanks again to all who are praying. I am held up by God's grace through these many sleepless nights.The goal is to get her home by Christmas but we will have to wait and see how she does.
Monday, December 20, 2004 10:56 AM CST
Many thanks to all those who have signed the guestbook. Your kind words and interest in Francesca keep us encouraged.
Last Tuesdays visit to Cleveland Clinic was busy. Xrays, echo, appt with gastroenterology and cardiology. She has been having trouble with spitting up so her reflux meds were increased. Her echo showed continued narrowing of her L pulmonary vein. But since she was showing no other signs, we continue to watch her.
While I was at work Friday night, Mark was concerned about how Frankie was looking. When I got home she was working harder to breathe and her oxygen saturations were not as high. After a call to the doctor we increased her oxygen. That seemed to help initially but by Sunday even that was not holding her. We held her all day. She was consolable but agitated. Her color looked more dusky than usual. By Sunday night, in the raging snow storm, she was readmitted to Cleveland Clinic. Her Xray was "wet" same as in the past, consistent with symptoms of narrowing of the pulmonary vein.
Monday am she had another echo and her case was discussed in catherization rounds. She is most likely going for another ballooning of the vessel Tuesday am.
Our absence is hard on the kids, never knowing how long we'll be gone. The holidays adds its own little twist. Again having to take it day by day is a difficult lesson. Thanks to so many caring folks, the kids have had some fun opportunities with friends. Also, Mark was able to take the kids to get a tree on Saturday. As I was getting them dressed warmly, Mario decided to slime himself with vaseline. It was an inch thick in his hair! Typical toddler behavior but difficult when things are already tense. Mark did a nice job decorating the tree with the kids before I left for the hospital Sunday.
We appreciate your continued prayers. It truly sustains us through all this craziness!
Saturday, December 11, 2004 0:27 AM CST
Francesca continues to be full of life. She endures everything with a smile. Her pleasant disposition is inspiring to Mark and me who are not smiling much these days. The struggle to keep up with daily demands have zapped our energy and because we have been dealing with her condition for months, our reserves have been depleated. We attempt to keep things as normal as we can for the kids' sake but the weekly visits to Cleveland Clinic and the frequent phone calls that cannot be ignored disrupt the rhythm of their lives. We persevere not because we are extraordinary people but because so many faithful people are praying, we are held up by God's grace. We have been encouraged by so many comforting words, inspiring cards, generous gifts, and kind deeds.
Her visit Wednesday did not hold very good news again. The diameter of the vein that was ballooned 2 weeks ago continues to diminish each week. Because she is showing no other signs of distress there is no immediate need for intervention. We are going to proceed with the surgery to place a feeding tube into her stomach so the NG tube (that goes from her nose to her stomach) can be removed. It is currently scheduled for Dec 29th. The surgeon expected that it would be a 4 day admission. At least we will have celebrated Christmas and have some time to get prepared.
Thursday and Friday Frankie had increased vomiting. She does not act sick as if it were a virus, more an excerbation of her reflux. Because she is unable to nurse, I am not making enough milk to satisfy her caloric intake so I have to supplement with formula. The formula and breastmilk are also fortified to increase the calories but she does not always tolerate it. Her gastroenterologist(the stomach doctor that handles her reflux and feeding issues) wants to increase her Reglan and add Previcid. (Just what she needed, another medication!) Hopefully that will do the trick and she won't lose too much weight.
Unfortunately I have to work Friday night so Mark has to watch her. He has done a phenomenal job taking care of things when I'm gone, however uncomfortable he feels. Hopefully she will behave herself.
Thank you all for your continued prayers and support. We are overwhelmed by your generosity. As we prepare for the Christmas holiday we find hope in the promise of the season and joy in the miracle of Jesus' birth. May we stay focused on the true meaning of the holiday despite the trials we face.
Saturday, December 4, 2004 1:44 AM CST
Thanks to everyone's prayers we have survived another week. Frankie and I were at the Cleveland Clinic on Wednesday for her weekly visit, not getting the best of news. Not only did she not gain weight this week. Her echocardiogram showed a slight decrease in the size of the pulmonary vein that was ballooned only a week ago. Not a significant amount to warrant treatment right now but obviously will be watched closely. She went home on oxygen which is another thing to which we have to adjust. She hates her nasal cannula. It is a fight to keep it in place. Her O2 saturations have not even improved all that much even with oxygen, which is also not very encouraging.
Her cardiologist is now concerned since she is not improving with taking fluids by mouth. He wants her to be evaluated for a G tube (a tube surgically placed directly in the stomach for feeding and medications.) It saddens me to have to contemplate another surgery at this time. We will consult with Dr. Stallion, the general surgeon, when we go back to CCF next Wed.
It is a miracle that Frankie has stayed well in a household of illness. This week we had temps of 103, 2 kids with croup, Mario has a raging ear infection, and Gina was diagnosed with pneumonia. Dominic was evaluated for pneumonia, but his looks more like a viral illness. It is hard enough when the kids are well. It is very time consuming going to the doctor everyday this week. But thanks be to God, Frankie has no sign of illness.
This experience has propelled us into another reality. It has given me a greater appreciation for families who are dealing with chronic illness. There is no margin for error. When it takes hours to fill a prescription, it is exasperating. Mistakes or oversights are so draining. We came to the office for Frankie's synergist shot to prevent RSV. No one told me the medication is supposed to come in the mail and I am to bring it to the office. So she was unable to be vaccinated. The frustrations are so great. In a normal situation one would be able to tolerate it just fine. In the context of this ongoing battle, it is overwhelming. When others are joyfully preparing for the holidays, we are fighting to keep our heads above water. It is hard to even keep tract of what day it is much less when her meds need refilled or her O2 needs replaced.
With the help of family and friends we have gotten some extra help this week. I have tried my hardest to try and keep a normal school schedule. It has been very nice to have an extra pair of hands to help out or stay with the kids while I've been running to the doctor.
Thanks again for all those who are praying. It has been life sustaining.
Sunday, November 28, 2004 4:16 AM CST
Except for one overnight stay in October, the next five weeks were spent getting acclimated at home. She continued to thrive, gain weight, and started doing normal baby things. While at a regular checkup, it was noted that her O2 saturations were low. She was admitted the next day, Oct 21, for a heart catheterization. It was determined that the pulmonary veins (the vessels that take blood from the lungs to the left atrium of the heart) were narrowed. The next day she had another heart cath that was able to balloon 3 of those veins so the openings were bigger. She had a really rough time. Many days she didn't look good. We were finally discharged on Nov 4th after a 2 week stay only to be readmitted on Nov 9th for another overnight confinement. We continued weekly echocardiograms and checkups. One weekend her breathing was getting faster and more labored. Monday, Nov.22, we brought her back up to the Clinic. She underwent yet another heart cath on Tues. Nov 23rd. This time only having to balloon the vessel on the left. The doctors remain optimistic because the right-sided veins needed no intervention, the narrowing was only at the opening of the vessel (not the entire vein), and the opening now is bigger that it was from the first cath. She was able to come home Thanksgiving day but on O2 this time. We will maintain our weekly visits for now.
If it were not for the fervent prayers of so many faithful family and friends, I would have lost my mind by now. I cannot describe what it is like to be at Frankie's bedside as she fights for her life, unable to protect her from all the necessary procedures that help sustain her. I can only hope to be as brave as she is strong. When I look upon her sweet face, I am inspired and grateful for each day we have together as she continues to defy the odds.
Please continue your prayers for our family as we perservere despite my limitations and frequent absences from home.
Sunday, November 28, 2004 4:07 AM CST
Francesca (named for Saint Francesca Cabrini, native of Italy, patron of immigrants, sickly child in a large family and Jordan for Sr. Jordan Haddad, encouraging friend whose wisdom and insights have seen us through many difficult times)has continued to astonish the medical community at Cleveland Clinic Foundation.
She was diagnosed in utero with a rare, complex congenital heart anomaly and was given less than a 10% chance of survival. It was an agonizing several months until she was born. The team was ready to take her to a very long open heart procedure. As she passed each critical milestone, we were encouraged. Finally after 2 long weeks intubated and an additional week in the step down unit, we were able to come home.
Sunday, November 28, 2004 2:41 AM CST
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