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Friday, February 6, 2009
It's Morgan's first Fontanniversary!!!!
So hard to believe that a year ago today, we handed our fragile toddler over to the delicate hands of the only man we have ever trusted to hold her heart in his hands, Dr. Mohan Reddy. With little hope to cling too, we trusted that he would give it his all to return her to us. He did, and then some!
This has been an incredibly long year...we battled thirty days in the hospital, nearly 9 months of dietary restrictions, and a mountain of medicine that no little girl should ever have to endure. She has come through it with the grace that only Morgan knows and I have learned so much from her. We have been to the cardiologist every single month this year, sometimes mulitple times a month. She allowed me to poke her to check her coumadin levels without hating me. She gave up chicken nuggets and chocolate...and she did it to live. How many five year olds do you know that have the strength and willingness to do this?
Morgan you are my hero...watching you play soccer and wiggle your very loose tooth have been the highlights of my year. This journey has been long and often painful, yet you continue to smile and see the goodness in this world. I am proud of you...a year ago today your groggy little anesthesia voice said to me "Mommy You's My Best Friend" as they took you from my arms....This morning as you left for kindergarten....and came home to me, I can easily say that "Morgan....You's My Best Friend!"
I love you Pinkalicious Pinky Pie....may you have many more Pink Days!!!
Sunday, January 4, 2009
Happy 2009!!!!
It seems as though a small life time has passed since I have logged onto this page. I truly don't know where to begin with updates!
Morgan's soccer season was more than she could have dreamed of. She became quite the goalie and was eager to go to every game--but most importantly she had fun! In a couple weeks she will be going to a one day basketball camp! She is so happy with her new found energy!
She continues to grow...and is now a whopping 33lbs! I once dreaded going to the doctor to see the scale never move, now it is quite fun to see if she is bigger!
She is thriving in kindergarten and had rave reviews on her report card from both her teacher and principal. As a parent, you tend to think that when the principal knows your kids name it's NEVER for good reason. Not true with Morgan, he knows her by her "cuteness" LOVE it! She says here favorite parts are going to the library and eating breakfast at school!
YES that is right she is eating breakfast there which means....he dietary restrictions are a thing of the past! It was a LONG transition but we have done it and are back to eating a like a "typical" family again. However, that being said, if any of you hear of anyone in the heart community battling a pesky chylothorax or you just want to lose a LOT of weight, call me! I've got plenty of fat free recipes and secrets!
Morgan is still on a small amount of diuretics. Her heart is very delicate and didn't tolerate the weaning process. At her last cardiology visit, her echo revealed "glitter" in her veins. For some unknown reasons, the vein in your heart has "sparkles" her cardiologist told her it was her glitter cause she was a princess...oh boy...did he have to, it has really gone to her head!!!!
The highlight of that visit was that Morgan had to have a flu shot. I say this was a highlight because well, she screamed her head off...was way over dramatic and all around out of control. However, she did it RED. RED like a normal child, not purple, not sending nurses running and residents flying. She just looked like a normal kid RED< MAD< and because I was so dumbfounded by this new found color, I couldn't comfort her...I just kept telling her how beautiful she was....I am sure the nurses that I was the meanest Mom in the world...but the fact of the matter is, it was a beautiful moment for me!
So there we have it...we are a month away from our Fontannniversary. A whole year. I doubted this surgery soooo much. It has taken so long to see some results. Her heart is not perfect....but it's beating. And she is living and she is happy. Oh is she happy! Following her surgery she stopped talking to me, stopped telling me she loved me, and wouldn't even hug me....today she is the complete oppisite. She is loving and kind and grateful to be alive. How many five year olds are grateful for that?
Nearly a month ago we lost our dear friend Hadley. She fought a brave battle with a brain tumor and is now dancing freely in Heaven. Her family was such a intimate part of ours. She is loved and missed deeply. Morgan handled her death in true Morgan fashion. She was a little mad....mad that Hadley is free from pokes and meds and doctors. And then she reminded us all several times that we shouldn't be sad for Hadley, we should be happy, cause we're only sad when people hurt. FIVE YEARS OLD and she has words to comfort ME!!! I love her imperfect heart--and the fact of the matter is...it had to come to earth broken cause there is NO WAY a whole heart could fit inside her body...her half is bigger than most people's whole!
In other news....Braeden is a fabulous third grader...reading awesome and playing basketball. Danica is growing like a weed and her ear surgery has been a blessing! The Pacific Northwest has been hit hard and heavy with snow this year and the kids (okay me too) LOVE it!!!! Dan has a final deployment to do this spring with the ship and then he's on to a new job--sporting his new promotion! I ran the Seattle Marathon in November....truly the greatest accomplishment of my life. I have never worked so hard in my entire life. 26.2 miles! I finished in 6:10:37. There will be days that I don't think I can run a marathon but there will be a lifetime of knowing I have.
I have received many emails wondering what will happen to the page...well...fact of the matter is...we've outgrown it. Our lives are pretty well...boring and normal now. It's time for us to close this chapter of our life and move forward...paying it forward to all of those babies that are yet to come. I will post again on Fontanniversary. I am working on a slide show of her miraculous journey to mend a broken heart. It's been long and trying but oh has it been worth it.
Enjoy the New Year...Enjoy each other and remember this life is temporary...leave a legacy!
Thursday, October 9, 2008
Where does time go?
I apologize for the lack of updates. I really have been quite busy and when I'm not busy I find myself feeling overwhelmed and to tired to sit down and update....but it's time!
We battled the back to school buggies, but Morgan just couldn't knock 'em so on Monday we went to the doctor and found ear infections and a sinus infection, so we've antibiotics and hopefully by Monday she will be feeling back to normal again! The best part of that visit is that Morgan weighed 32 pounds! SOMEHOW, SOMEWAY on a low-fat diet, she is growing!
We have a cardiology visit next Friday our first since August, so I am eager to check her out. We did see our cardiologist for her illness, but he didn't sneak any peeks even though we all wanted too!
She is doing good in school, even only feeling half speed she still has insisted on going everyday! She looks forward to her homework and seeing her friends and of course riding the bus!
However, I think our biggest news of the month is that Morgan finally got to do something she has ALWAYS wanted to do...Morgan started indoor soccer! She is THRILLED so the picture on her page is her first night of soccer...Her shorts are a size 4 and she has pee wee shin guards on and both are WAY to big...but she feels like a giant when she is wearing them! She loves being on a team and was even more thrilled when the team voted and chose her team name idea...so Morgan proudly plays on the Bumblebees! I won't lie, I have moments of fear watching her out there...last night she yawned SO big I wanted to throw her down on the ground and do some rescue breathing for her...cause yes...when you are heart mom, you are just that freaky and yawning can mean SO many more things...however...I think last night she was just tired! :)
Halloween is quickly approaching and I have an Indiana Jones, a leopard, and a "fifties girl" sprouting in my house and *hopefully* a visit from my parents...Dad are you reading this? It's vacation time!
And that is about it...of course little things have popped up here and there...but it's pretty small stuff. I am trying to be reminded more of my blessings and put the tough stuff into perspective more. Not always an easy task for me because I have to know what is happening RIGHT NOW!
I promise to update after Morgan's cardiology visit...and remember in February this page will be gone for good--we will celebrate Fontanniversary and say good-bye to caringbridge...so please visit our family page!
Saturday, September 20, 2008
I just wanted to update with fun update!
Morgan continues to love kindergarten and we have received the back to school germies and are trying hard this weekend to recover from them! Blah.
Fall has definitely set in here in the PACNW and I have truly without a doubt enjoyed this very cold and grey day of rain. I wish it was ending with a delicious stew or soup, but, well the kids would rather have their toenails pulled out one by one than eat stew or soup.
One of the things I worried most about Morgan going to school was her "academic" interest...she really doesn't seem to have the disease to please...we had to have MANY long discussions in preschool about her even tracing her name, much less attempting to write it! She was slow to learn her letters and numbers and even now struggles to "name" some letters. However, she blew my mind this week when she brought home her writing lesson...her name is PERFECT! I am SO proud of her. This weekend she did her homework without fighting and is just really liking "learning"....Sadly, I think I underestimated her a bit with going to kindergarten. She has done incredibly well and I couldn't be more proud. So here is her assignment....
I have had a few emails asking if Dan's ship was the one with the HUGE cocaine bust this week...and I am happy to report that IT WAS!!!!!! They seized more than 7 tons of cocaine!!!! Way to go!!!!
Here is the link to the story:
http://www.msnbc.msn.com/id/26795833/
And in more Dan news, he was selected for promotion to Lt. Commander...again, VERY thrilling, but we've grown accustomed to calling him LT. Dan! :) Guess those days are over!!!
Continue to pray for our friend Hadley...www.hadleyfox.com
And be kind to each other...always.
Monday, September 15, 2008
Sorry for the delay in posting!
I've been SO busy, that sitting down to do this journal seems like the lowest on the priority list. Yet it's really not.
Morgan is still loving kindergarten--although we are starting this week off with a runny nose....this is where my anxiety level will become unbearable. Schools and germs and Morgan just make my head spin! Breathe in Breathe out.
I will honestly say that my heart has been in a pretty broken place for sometime now. My best friend Angela is losing her daugther Hadley after a very courageous fight with brain tumors. You can visit her at hadleyfox.com
This past Saturday the Make-A-Wish Foundation gave her a Royal Ball and made her the Princess of Portland. It was a beautiful event and I was so happy to be there. The one thing I have battled through all of this is guilt. Yes. Guilt.
I had a few members of Angela's family comment on how great Morgan looks. We have known them for YEARS and they have watched us go through some pretty hairy stuff...they have seen her at her worst, just as our family has. However, every time some one mentioned this I would start to cry. Yes, she does look great--yes she is doing good--I WANT that for my friend too. My heart just aches...we've had the "losing our daughters" talk SO many times....we've cried SO many tears about it--the fact is, it is our reality and while some girlfriends gab about shoes and make-up, ours was about our amazing daughters and how we live this earthly life without them. It's a level of friendship, that thankfully few people understand, but gratefully I share with Angela.
I will miss Hadley so much. So much. This little girl is special beyond words....she has always amazed me with her crooked smile and kind words. She is playful and trusting and determined. I recently was looking back at old pictures and remember how small she was when she first came into my life--she has grown and changed so much--but the love and the joy in her eyes has never changed. She is the purest form of love anyone could ever know.
The hardest part for me, is that I have no words for Angela. I have said 'I love you' as often as I can...and I hope really hope that is enough for now and that she knows that my love for her and her family runs deep.
Please stop by and pray for them...for comfort and peace...and try to remind yourself to not complain about your children....be grateful for them...for all of their quirks...for all of their mistakes...for all their imperfections...for all of their gifts...their strengths...and the things that make them unique.
Here are some pictures of Hadley's special day!
Tuesday, September 2, 2008
Well, I did it. The thing I had been absouletly dreading and anticipating all at the same time....I watched Morgan go to kindergarten today!
The morning couldn't have been any smoother, honestly. We all woke up so excited, on time, and ready to go. No one fought, I didn't have to repeat myself over and over, they just did what they were supposed to and it was perfect!
Morgan was a little eager to get to the bus stop, she kept asking "is it time yet?"
Finally when we did go...the bus came, she got in line, and she never looked back at me. She just climbed on and off she went!!!!
Monday, September 1, 2008
It's the night before kindergarten and I need to have a little break down! :)
My little girl is going to school....real school.
I have dreamed of this day for 5 1/2 years....Never knowing if my dreams would be real. I have also used this day as a bargaining tool with God, very often when times were hard I would pray "please just let me have one day of kindergarten with her." This was always my milestone...the place that I strived for. I just felt like this day would mean that we had been rewarded for never giving up....
And you know what is funny--as the time has grown near, I have always wondered if I would want more. And I have to tell you honestly and completely. No. I truly feel like my Faithfullness has been rewarded and every day after tomorrow is a gift....not that the previous 5 years haven't been a gift, but it's just a different feeling. Instead of begging for a goal, I can give thanks for today...I love that.
I won't lie, I am terrified. Tomorrow at 8:39, I may just throw up right on the sidewalk when the bus comes....but I can't imagine any where else I'd rather be. I wish Dan could be here to see it too...he spent her first night by her side--when it was looking like she wasn't going to make it through the night--he never left. I can't imagine how he must feel tonight.
I can't wait to share her first day of kindergarten pictures with the world!!!!
We made it baby girl!!! We made it....
Take those wings I have been working so hard on and fly!!! You've earned them!
Friday, August 29, 2008
Just a few more days until the start of school...and guess what...
I'm drained.
I am so stressed out about putting her on that school bus I can't even tell you!
I soooooo took it for granted when I sent Braeden to school--I registered him and off he went....
This is mind-numbing.
I do believe we have everything in place--please say a prayer for us!
Morgan is having some bowel issues...Braeden has an "earache"--coicindentially the same time Morgan has bowel issues...I haven't slept through the night since we've been home cause someone is always waking up.
I'm to my limit....
Wednesday, August 20, 2008
Greetings from IDAHO!!!
YUP, that is right the kids and I are in Idaho...we are at the start of another deployment, so I thought it would be best to keep the kids busy with Grandma and Grandpa. Plus, it is a good opportunity to get stuff done for school with help!
We've enjoyed a great week thus far, although, it appears we brought our Seattle rain with us, so we're not spending nearly as much time on the beach that we thought we would be! Oh well.
Morgan had a cardiology appointment before we left and there is nothing but good news! The best being that we don't have to go back until OCTOBER! We are SO thrilled! I can't even tell you how great it was to hear the cardiologist say that she looked awesome!! We're not doing anything different, just keeping up with the diet and meds and letting her adjust on her own.
We'll miss Daddy this fall, I am so sad he has to miss Morgan starting school. So many difficult days our only dream was to see her go to kindergarten...it seemed like that was a HUGE dream, an impossibility we would never see true...now it is just 13 days away! Wow. I didn't cry when Braeden went to school, but boy do I envision Sept. 2nd being a very rough day for me!
Alright, off to fish my little ones out of the hot tub with Grandma...they would keep her in there all night if they could!
I probably won't have much news till school starts but then I'll have pictures!
Friday, August 8, 2008
Greetings Everyone!
It has taken me all week to sit down to write about Morgan's kindergarten physical...only because I've been busy...nothing tooooo bad. Actually, the phrase should be, nothing I didn't already know.
Her appointment went well, she gained a few more ounces and is doing good. The hard part came for me filling out the medical paperwork for school. Mentally, I KNOW, that she will nevery be typical, yet emotionally, talking about it, writing down limitations, and things like that just really get to me. No mother wants to put limitations on their children going to kindergarten. You want them to learn and jump and run and play like their peers. Morgan will still do all those things, it just has to be modified. It's okay, it really is, but it pulls on my Mommy heart strings.
She did great through her boosters and TB test, she SCREAMED, but she did great. And now she is all set. So hard to believe that in just a little over 3 weeeks she will be leaving my safety and going to kindergarten. I still don't know if I am ready for that. I never cried when Braeden went to school, but I feel the tears welling as I write this and my nerves makes me have butterflies.
She is really starting to take it to heart how small she is, and comments about it are really starting to hurt her feelings. It is yet another thing she is going to have to adapt and learn to accept. If she was "just" the smallest one, I don't think it would have such an impact on her. But she has had to be different so many times, and now staring her 2 year old sister in the eyes is really putting things into perspective for her. This is heart breaking for me, to hear her sob because she wants to be like everyone else just hurts. It's a pain I can't change, only nurture in hopes that one day she will learn that she is unique beyond words and is a miracle that so many wish they knew and experienced. I love that little girl with all of me and I would trade places in an instant if I knew she'd never have to hurt again....I am sure we will battle it all over again when she becomes more aware of her scars and it showing in cute shirts and dresses....and gasp...a bikini. :)
Alright, it is my birthday today, so I am off to get ready to go out to dinner with Dan. It's been a busy week for him getting ready to deploy again--so I gotta take dinner when I can!
Thank you for following us these past few months...remember for "good" news you can visit our blog!
Sunday, July 27, 2008
Our Great Wolf Lodge story and pics can be found at:
http://ourkeanefamily.blogspot.com/
Friday, July 25, 2008
THIS is how it's supposed to be....
You never hear from us! :)
We are having a GREAT time not going to doctor appointments and just enjoying summer vacation! Morgan continues to thrive on her diet and it truly has made a world of difference! To Dan and I as well, we each have lost about 10 pounds! It's been a huge eye opening experience to realize how much fat and carbs we place into our mouths each day!
We are off to The Great Wolf Lodge for the 2 days, the kids are SO excited! We are too. It is an indoor waterpark and they have an amazing military discount right now so we are taking advantage of it! I'll have pictures on Sunday.
Remember our sweet Danica on Monday as she goes in for her tonsillectomy! Poor girl has NO clue what to expect or that it is even coming!
Alright, must get ready to go.
Don't forget our blog site.
www.ourkeanefamily/blogspot.com
Wednesday, July 16, 2008
Every now and then I catch a glimpse of Morgan and I completly loose all the breath from my body. How I became her mother I will never know...why she chose me, why God chose me I'll never every know but I am so glad that it happened. I am in awe of all of my children for different reasons...but Morgan truly can bring me to my knees with gratitude. I have written a few times about knowing every inch of her skin, and it is true, I have spent hours staring at her, smelling her, and listening to her cause I don't ever want to forget. I realize that known of know how long we have left on this Earth...but when your child is chronically ill, battling a disease with no cure, things seem a little more urgent all the time.
Today Morgan and I locked eyes during lunch and she smiled at me with one of her authentic "I'm Happy!" smiles and I was breathless. She has overcome so much. On the day she was born, I was preparing myself for her death. I truly didn't think that she would make it. She was SO fragile and small. It wasn't to long after that I learned that she had work to do on this planet and she was going to do it!
After lunch, after our exchange of love, I was cleaning up and my heart nearly stopped in my chest. You know the feeling, the sudden drop, the slow motions....because I grabbed a plate, looked down at the missing corn dog to read "Foster Farms" on the stick. I was certain I had just put a days worth of fat into Morgan's body. I nearly had a panic attack. After scanning the table, I realized I had put Danica's plate on top of Morgan's and all was okay...Morgan had eaten the correct "veggie corn dog." But for that moment I was terrified.
Chylothorax can be fatal. The thoracic duct transports several LITERS of fatty fluid per day...imagine all of that going to your chest cavity...the decline is rapid and can be fatal. We almost lost Morgan in California for this very reason. We have become expert label readers and keep track of her "poison" very carefully! I finally broke down and bought some fat free and low fat cookbooks and what a HUGE blessing that has been! And Dan and I are losing weight rapidly as well! I joked last night that I was going to compile all of our favorite recipes into a book and that we were going to give them as Christmas gifts. Without a doubt, all of our hearts will be a little healthier because of the Morgan diet!
I am waiting on a shipment of Emu Oil and Safflower Oil to put on Morgan's skin. With a diet like this, Morgan can not take in enough Essential Fatty Acids. The ones that keep our skin and hair healthy and our hormones functioning properly. We as humans, don't make EFA's, we get them from our diet. The oils are believed to allow EFA absorption in small amounts through the skin. Enough to keep her healthy. I truly hope this works as we have seen huge skin changes in her since the last surgery. But her hair is looking better and even her cardiologist commented on that last week!
I guess I have come to terms with our "new normal." It's a crazy frantic pace trying to learn all the in's and out's--yet each day it becomes a little easier. I truly meant I would go to the end of the earth for her....it appears she's going to test me every step of the way! I don't think I'll ever let go of the fear of "sudden death." It's a risk we face loving a child with such a rare heart.
Every single thing about our lives have been tested...our marriage, our financial security, our friendships, and the comfort of being able to "plan" for tomorrow. But you know what, I wouldn't trade it for one single second. I've said it before and I'll say it again, We are better people for having lived it.....
My house is a mess, my laundry is piled high, but I had time for hugs, kisses, and was able to laugh when I stepped on Lego's. I listened to my kids belly laugh, work through conflict, and call for me a least a zillion times. And I realized that "what if" I never knew this kind of love....and I know that I never would have lived a full life!
Hug your babies today!
Saturday, July 12, 2008
I have an update for you that I've waited a long time to report.
Yesterday, we took to the kids to one of the zoos here. (We are blessed with three amazing zoos very close together) This one is called Northwest Trek. It is a zoo that features only animals from the Pacific Northwest in their natural habitat right down to the forest. I'm telling you all of this information to let you know the zoo is quite "hilly" it's a lot of up and down and quite the hike. Anyway, we've been to the zoo several times, and have always taken the amazing stroller my parents bought for us where Danica cand sit and Morgan can stand. Yesterday, Morgan
In other news, the yesterday morning prior to the zoo, Danica and I went to her pre-op appointment. She is all set for surgery on Jul.28th. She did great and boy can I not WAIT for those tonsils and adenoids to be out! She fell asleep in the stroller sitting up and was snoring SO loud it was scary! The anesthesologist gave her a "practice" mask so she could practice to "go night night" and I am happy to say she loves it so much she has put the entire family and her heard of stuffed animals to sleep! Maybe she'll be an anestheseologist when she grows up!
Alright, off to the enjoy the rest of the weekend...I think we have some weed pulling on the schedule and some garage cleaning! Woo hoo!!!!
Wednesday, July 9, 2008
************UPDATE**************
July 10, 2008
I woke up this morning to an email from our docs in California saying they were happy to hear of Morgan's progess and the cath lab has been cancelled!!!!!!!!!!!!!!!!!!!!!
********************************
It's truly amazing that I am not in some looney bin somewhere--the last 5 1/2 years of my life have been nothing but a series of high highs and low lows and they change just like that...the CHD rollercoaster is truly the scariest I've ever been on...
Today....
We have high highs! No fluid...again! It truly appears that the cause for the effesuions. She has been back on the diet for a few weeks, and since then we have seen no sign of fluid. If she were in heart failure or if her fontan was failing we wouldn't be seeing improvement. So.....our cardiologist doesn't need to see her again until August 15th!!!!!!!!!!!!!!!! I can't even imagine! Now....we still have a cath lab scheduled for August 4th...so right now some conversations amongst doctors are happening and they are going to be trying to decide what should be done in the best interest of Morgan. AND....we will be receiving a new pediatrician since ours was deployed this month. We are also scheduled to meet with her August 4th...one of those will have to be changed--I so hope that we can elimanate the cath lab all together. We briefly met with Morgan's new ped--she came to the cardiology appointment and she seems so very sweet and Morgan really took to her. If we don't go to California, August 4th with be a 5 year "well" child visit complete with kindergarten boosters!!!!
And the next bit of good news...Morgan gained weight. Yes, she actually GAINED nearly a pound sending her into the 31 pound range on a LOW fat diet...and we are talking VERY low fat diet! GO Morgan!
My stress level has been at an all time high this week, and I am hoping I'm turning the corner. I have done this ride so many times, I have a hard time believing it and it takes a few days for it all to sit in....of course...I have to wait for the final verdict from California.
We got our freezer situation squared away...and everything else is going to work out too. I am just thankful that for today, we appear to be on track!
As soon as I hear back from California, I'll share the news!
Monday, July 7, 2008
We are back...and we had an amazing time! I will work on getting pics up soon!
We were home for about 15 minutes when we were thrown back into reality. Something happened in our garage while we were gone to throw a circuit breaker and our freezer lost power. And we lost a TON of good quality meat we had just purchased from our butcher. Our garage stunk to high heavens and I am just heartsick about the meat....and everything else that was in our freezer.
And then we came in to check our messages on the answering machine to find out Morgan's cath lab is scheduled for August 4th in California. So we need to start planning for that again. This is also Dan's last week at home and Danica will still be recovering from her surgery. There is just SO much stuff going on this last month.
This week is filled with doctor appointments starting Wednesday, so I have two days to really get my stress under control! Dan is staying on the ship due to gas prices being really high, in an attempt to save all that we can for deployment/surgeries/unexpected emergencies like freezer problems.
So if you just keep us in your thoughts and prayers while we figure some stuff out. I'm REALLY nervous for the cath lab and just plain tired of dealing with stuff like this. Last week was so great, truly as close to normal and relaxing as we get!
I'll be back with pictures later!
Tuesday, June 24, 2008
WE ARE GOING ON VACATION!
A trip to the cardiologist found NO FLUID!!!!!
We have been following her diet TO THE T and we (the cardiologist and I) believe that her thoracic duct is still the culprit! So...the bad news is we stick on the lowfat diet, and will likely have to repair the duct...the good news is Morgan tolerates the diet well and we get to go to Idaho for 10 whole days!!!! We have "strict" list of "to-do's and what not to-do's" but we can handle it!
We go back to the cardiologist on July 9th--so please keep praying that this truly is the root of all of our evil...THIS is an easy fix and much more positive the "other stuff."
I have so much to do, I honestly hadn't let myself entertain thoughts of a family vacation until we got through this appointment...and if we really are going to get out of here on Friday...well...I must get going!
So for some of you...we'll see you SO VERY SOON...and I'll be sure to take TONS of pictures!
~~~~~~~~~~~~~~~~www.HadleyFox.com~~~~~~~~~~~~~~
If you have not visited the above website, I encourage you to do it soon. Angela (Hadley's Mama) is such a dear friend to me....we met in a doctor's office parking lot nearly a half a decade ago and we clicked right away. Hadley had just been diagnosed with a brain tumor and Morgan was a tiny fragile baby fighting for her life...and amazingly she was a Coast Guard spouse...and my next door neighbor! We spent 3 years in Alameda, encouraging each other and being a shoulder for each other when we needed one...then they were moved to Seattle, a year later, we came to Seattle...now they have been moved yet again, to Portland...and their sweet girl has reached the end of her treatment and is now in the early stages of hospice care.
They are not a family that needs pity, nor your sympathy, they are family that needs strength and encouragement and words of comfort. Hadley has the most amazing spirit and contagious smile...you can't get enough of her.
This morning Morgan woke up to me and said "I want Hadley hair!" So I said "Okay." I have no idea where this came from but we went with it....Morgan and Hadley have always had a unique bond. They have many of the same quirks that may seem odd to others, but to their Mama's and to the girls they "got it." I have no doubt something bigger than us put the idea of "Hadley Hair" in Morgan's brain while she slept! Whatever it was, it looks so amazing on her! I've never seen her hair look so healthy or shiny or full!
Fox Family, we love you...
Thursday, June 19, 2008
BIG NEWS IN THE KEANE HOUSE!!!
All Care Animal Referral Center
It is in the very early stages of being loose, but it IS loose! Since she discovered it she has been eating apples and even carrots to make it more loose! I'm sure it is still several months away from actually falling out....but maybe not it is misaligned from the others so something is pushing it up! :) YAY Morgan!
We've been having many discussions with cardiologists here and in California about the next stage in Morgan's care. The consensus is she needs to visit the cath lab to double check to make sure everything is "holding" up and functioning correctly to see if we can identify the root of the persistant fluid problems. If nothing is wrong, we can seal up the space and move forward. There are many things that "could" be wrong and many interventions that "may" be needed....but no need to worry about those until the time comes. For now we are in the early stages of planning a trip to the cath lab in early August....in....California. Yes, California. So just keep us in your prayers as start planning. Most like Dan will stay behind with Braeden and Danica because Danica will be fresh out of surgery as well and will need post-op appointments....and...well...he has to deploy again in August, so we'll need to prepare for that.
Morgan goes back to the cardiologist on Tuesday, and then we'll decided if she is "healthy" enough to travel on a family vacation to Idaho. Even still, we are battling whether or not to go since she is really walking a fragile line these days. No matter what happens, Braeden and I will spend 5 days in Idaho and there are moments that we kind of lean toward doing just that--giving Braeden a chance for some one one time with Mom and the grandparents...he RARELY gets that. We'll see though.
Morgan just came in to tell me that her heart was tired....without a doubt it is. I don't know what to make of that comment, as it was pretty random. We've chosen not to give the third diuretic as it was making her excessively thirsty and causing her to vomit. The part that is so difficult for me is that nearly 5 months post op, it's not supposed to be like this.
So...just keep us in your prayers..continue to focus on the positive with us, like that AMAZING loose tooth! I'm sure all of you have just as many questions as we do, but this is something that is just going to have to work itself out day by day....we'll keep you posted along the way!
Thursday, June 12, 2008
You are all cordially invited to sit down and enjoy a glass of Keane Lemonade...seems we have perfected the recipe so well that our girls continue to find more lemons!
So today was double trouble day...both girls had appointments with their specialists....oy vey.
THANKFULLY, Dan took today off and came with me cause I just don't know how I would have managed a 4 hour day at the hospital with both of them...
So first up, Danica.
She didn't have any fluid in her ears today so they were able to get a good look...and everything still looks hideous. That's the nice way to put it. The ENT said "Um her tonsils haven't changed in size and she's healthy" they are for surely coming out! So....Danica has surgery on July 28th. She has blood work and the anesthesia eval on the 11th of July and she will be staying overnight due to her age. So...keep her in your prayers, she's NEVER had any sort of medical procedure done outside of shots so....I have a feeling overnight in the hospital, IV's, etc. are going to be a tad much for her. We are on the "stand-by" list in the event of a cancellation, we may go sooner.
On to Morgan...
An ear infection is hanging on to her right ear and now she has some sort of respiatory infection....AND a HUGE amount of fluid once again under her right lung. So...we have a third diuretic, back on a low fat diet and starting to talk about a small surgical procedure called pleurodesis. It would basically go in and chemically shrink her pleural space so the fluid couldn't keep accumulating in there. So while my heart aches that she may have to have another surgical procedure. I just want this fluid gone. Having fluid in there puts her at risk for so many things, infection being one of them...and we've just come to far. So PLEASE keep her in your prayers. We go back for a recheck on June 24th.
I really don't have much more to say. Pray. I'm tired of doctors, hospitals, and pharmacy's.
Thursday, June 5, 2008
I feel lost not having a doctor appointment to journal about this week, but I have plenty of other stuff...so here you go.
First....
We need to Congratulate Shanna Herman of Orofino, Idaho on her recent graduation--AND--for being the first to receive the Morgan Faith Keane Scholarship!!! After my hometown was so generous and supportive of our family getting Morgan to California for her surgery, we knew we wanted to pay it forward!!! So Congrats Shanna--we wish you the very best!!!!!!
Morgan continues to do well and is tolerating her new medicine well...externally. The trust test is internally and we have another week to wait. I will tell you she seems more thirsty and is peeing more so that must mean it's working right?!? I think once we are off of her diuretics we will see an increase in appetite. Right now she's so thirsty that she fills her small stomach up with fluid. I am going to get some pediasure and see if she has developed a taste for that yet, at least it will be good nutrients and calories going in.
It's been good to have Dan home and I'm grateful that we are all under the same roof again. We have a very short time with him this time, so we are really trying to use every minute of every day this summer.
Braeden finishes school on June 20th...so hard to believe I'll then be the mommy to a 3rd grader and a kindergartner!!!! WOW.
I need some extra prayers for some good friends of ours...The Fox Family.
Their daughter Hadley has been battling a brain tumor for 4 years....they have now run out of treatment options and the tumor continues to grow rapidly...Please keep them in your love in prayers...her website is www.hadleyfox.com
Hadley is such a miracle and her smile is absolutely contagious. Just keep her in your thoughts and prayers as well as her Coastie Dad, her brave Mama, and her admiring baby brothers...We love you Fox Family!!!
May 28, 2008
A bit of an announcement...
I am going to be transitioning Morgan's page to more of a "family blog"...you can find it here...
http://ourkeanefamily.blogspot.com/
It is time for us to start thinking about moving onward and upward...this page will still be here until February 6, 2009...Her Fontanniversary.....I want to download all my journal enteries and guestbook so I still have some work to do.
I'll still be journaling here, but there as well....we invite all of you to "move" with us.
~~~~~~~~~~~~~~~**************~~~~~~~~~~~~~~~~
We are back from the cardiologist, I have a few quiet moments so I thought I would update...
No fluid!
We are however, doing a med change this week, so please keep Morgan in your prayers that it works. We are messing with her diuretics so let's just hope her body likes what it sees!
She also has had a weird allergic reaction to something and is covered in hives on her torso. Morgan is pretty sensitive to animals and grasses and well, guess how we spent our weekend...with animals and grasses....so it could be the grass, the goats, the cats, who knows what else...just something else to watch.
She also has some boderline nasty sinueses and ears....but not enough to treat yet...I love that Morgan's doc wants to let her body heal itself instead of taxing her system with antibiotics. So lots of prayers that her body works hard and it is gone.
We have a a 2 week break from the doc and don't go back till June 12th...if that one looks good, we may get to go to monthly appointments!
Alright, my quiet time is over, I've got a husband that comes home at night now so I have stuff to get done! :)
Friday, May 23, 2008
Well...I did it!
I went on the Tiger Cruise with my husband...brought him home...and had a GREAT time!!! I am so glad I did this trip and yes, the kids were fine. I don't have a lot of time this morning, but just thought I would put this video of our trip home on here....
Morgan has a doctor appointment on Tuesday so I'll check in again then....until then, we're having family time!
Wednesday, May 14, 2008
Where to begin...I get so tired of saying these words.
Morgan has reaccumulated another small pocket of fluid.
So...another increase on diurectics.
Morgan's cardiologist did a good job of making me feel like it's okay and she's just going to take awhile to get it perfect. However, I still had to come home and have a good cry on the phone during my Mom's lunch break. I'm just tired of hearing those words...and going to the cardiologist so often.
So...some of you know that I have the chance to sail home with Dan on his ship from San Diego and the "plan" is still to go forward with that...I need this break, this time, and this adventure. So if you could just say a TON of prayers for Morgan that she does amazing while I'm gone, I'd appreciate it. Leaving with small amount of fluid is more than I wanted to leave with at all.....
Okay, off to tame the monkey's.
Monday, May 12, 2008
An update on Danica....
She had another sleepless night and then woke up this morning with gunk on the side of her face coming from her ear, so off to the doctor we went. Our ped looked at her and then sent her over to an ENT...her tonsils are nearly touching and her adenoids are also HUGE and that ear...it was a ruptured ear drum. So the plan...get the infection cleared up and start talking/planning for adenoids, tonsils and tubes...This is her 4th ear infection in 8 months and the he said her adenoids and tonsils are just abnormally huge anyway, but adding illness runs the risk of cutting off the airway. And if you know Danica, you know she has done few clear cuts by sawing logs in her sleep. JUST LIKE HER SISTER DID! :) The other disadvantage is that Danica has a severe allergy to the penicillin family....so we're using some big gun anitbiotics to treat "simple" ear infections. So we go back to check the ear drum on the 27th and we'll start talking more seriously.
So....hopefully in a few days she'll be feeling better and all will be well!
Sunday, May 11, 2008
HAPPY MOTHER'S DAY!
Today, I am REALLY missing Dan. In the course of being married it always seems that there is one holiday that husbands really seem to "drop the ball" on....and fortunately for me, it has NEVER been Mother's Day! Dan has always done an amazing job of making sure that I use Mother's Day for me, and that I am able to recharge and that he tells me how very much he appreciates me and all I do for the kids. Today, when Danica started screaming at 3am and didn't stop until 5am I realized that this Mother's Day was going to start early! That would NEVER happen if Dan was home! :) However, my Mother's Day will still be fantastic....my aunt and uncle are going to watch the kids for me so I can indulge in a massage and maybe even a pedicure (although after my lack of sleep a nap sounds good too) and then they are going to fix dinner and then I'll get to bring home tired kids! So thank you David and Mary for this gift!
I hope that ever Mommy in my world feels as blessed as I do! I am honored that these 3 little being chose ME to be their Mom! I hope they know that I'm doing my best to give them the best and that I'll never stop--not for a single minute!
Thank you Braeden, Morgan and Danica for giving me the best title possible--Mom!
Monday, May 5, 2008
WE ARE DONE WITH COUMADIN!!!!!!!!!
Morgan was given the green light to get off the rat poison and go back to aspirin!!! And no I'm not kidding coumadin was initially made for rat poison! It's a relief to have that out of our lives!!! HOPEFULLY now that the poison is gone, the hair will start to grow back!
She is still fluid free and is doing great...so we go back on the 14th for recheck and *hopefully* we'll discuss bi-monthly or even monthly appointments!
We still have a ways to go before we can start thinking about weaing from the diuretics, but the biggie is GONE!
I've hated that drug from day one...I've hated the blood draws, the home pokes, the constant fear that it put me in wondering if she was getting toxic or worried about her playing like a normal 5 year old kid that she may bump her head to hard or if she cut herself!
I'm GLAD to say good-bye to band-aids for awhile...I'm glad there will be NO MORE checking for bruises...she's one step closer to being "recovered!"
Saturday, May 3, 2008
I took Morgan for a haircut today. She is loosing hair from the coumadin. She has several very thin patches in the back and the front is starting to become brittle and thin as well. I tried to fix it so it would hide the thinning, but it wasn't working well, so she went in and got it cut up to her jawbone with LOTS of layers. It looks better, and we may have to still do some tweaking with it (Aunt Jody, bring your scissors!!!) but she likes it and enjoyed her trip to the beauty shop. She told me that it's okay for girls to have short hair and she can even have not hair and that's okay too!
Our cardiologist said he's never seen a kid go completely bald, but he has seen lots of kids with very thin hair. Coumadin is one of those strange drugs that seem to have very little side effects, but those who take it certainly tell you different....yet....when you get to the point of needing coumadin, the side effects seem really small compared to the alternative to not taking it.
So here is to new hair...it's not the best pic...Morgan wouldn't turn sideways for me ....nor would she smil. She's 5, what can you do!
She's still a doll baby!
Tuesday, April 29, 2008
Just some tidbits...
We received our final bill today from the hospital for the surgery and 30 day hospital stay...I am sure some of you are curious as to what this would cost, Hell I was curious when we first started this journey if we were going to be able to "afford" this, if our insurance was going to get tired of forking out money for her...
Going to California we had some "issues" with our insurance company, battling out of state--out of region--referral--partial copay due to the above...blah blah blah blah...stuff that really makes my blood pressure elevate. Anyway, at that time, I repeated myself over and over and over "whatever it takes." The longer we sat there the more fearful I became wondering what on earth had I done to our family and our families financial future....and NO never could I have put a price tag on Morgan's life, but you start thinking the worst. ANYWAY, everything happens for a reason--we reached a settlement with and I am happy to say that we won't see a doctor bill. Part of the "world's best insurance for the world's best military" is that we have 100overage....in five years, we've learned there is some fine print, but if you scream long and loud enough you get heard. ANYWAY, it is a darn good thing the settlement was reached because our final bill was $464,325.95!!! Our copay very well "could have" been $100K!!!!! I nearly puke just thinking about it. SO thank you God for answered prayers!
One of Morgan's faithful followers, Ginny, asked a few questions in the guestbook that I thought I would answer...YES--Danica is QUICKLY catching Morgan! They are about 5 pounds apart in weight and about 5 inches in height. They can nearly share shoes and there are several pairs of pants that they share! One of Dan's biggest fears is that soon people will start to think Danica is the oldest of the two. I don't care so much. Morgan is a little person, she will more than likely always be a little person. On top of heart defect she was also born with IUGR, intrauterine growth retardation, so she will always be small, she will always struggle to gain weight, and well, I guess it's a good thing she has a big personality! :) In an odd sort of way, I'm glad she's a girl, it would have harder to explain to a boy why he is so much smaller. Now Morgan will just have many jealous girlfriends! We are hoping to hit 35 pounds before kindergarten! Morgan will need to ride the special ed bus because of her size, but she doesn't seem to bothered by that...yet.
Alright, I've got to get dinner going!
Just tidbits of info!
Monday, April 28, 2008
Who is ready for an update?
Who is ready to read-----------
DRY LUNGS!!!!!!!!!!!!!!!!!
That's right not even a TRACE of fluid today!!!!!!!
So the plan....NOTHING. Her cardiologist wants her to grow a bit and get some weight on her side before we try to wean her off the diuretics again. At first I thought I would be devastated by this it's two more additional meds or 4 additional doses a day of meds but ya know, it's working so let's just let it work.
We recheck again in a week...and next Monday we also with discuss the Coumadin situation--should we stay or should we go! :)
So keep praying she's looking good...weighing 31 pounds--fluid free!!!
Wednesday, April 23, 2008
WELLLLLLLLLLLLLLLL>>>>>>>>>>>>>>>>>>>>>>
The fluid is down more than half!!! Last week the pocket was measuring 3.8cm in diameter today it was 1.6!!!! So she gets to keep her diet and we're leaving her diuretics the same and we go back for a recheck on Monday! And because she's doing good and having to see the doc so much, he gave her the week off from her coumadin poke, so I don't have to poke her again until May 1st!!! This is a GOOD thing for Mommy--I CAN'T STAND IT--yet at the same time I am grateful for the machine so I don't have to hold her down for deep venipunctures!
So it's a good day! Keep praying--they CLEARLY work! :)
Okay, Danica is napping I have groceries to put away and laundry to switch, but I had to share her AWESOME news!!!
Friday, April 18, 2008
I am having a hard time tonight. I don't know why, but this fluid is really weighing heavy on my mind. It is truly ALL I think about ALL day. I can't look at her without wondering WHAT is happening inside of her body and WHY on earth this has been so hard for her to recovery from. It wasn't supposed to be like this...this is the "worst case scenario" stuff they briefly go over in pre-op visits. I'm just uggh...worried.
It doesn't help that tomorrow is Dan and I's anniversary and he's in the deep blue sea. I just want him home with me to reassure me that everything is going to be okay....
I came across this tonight as I was reading Fontan story after Fontan story online and decided to stop here....Morgan believes that before a baby is born they live in Heaven. When I found this I had goosebumps all over my body...once again, she has it all right, she started out in Heaven and she is torn.....
Half a Heart--Author Unknown
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born.
One of the sweetest angels say to Jesus "I dont want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit.
She is still not swayed on this idea. So Jesus kneels down, and says "how about if you leave half of your heart here with me and take the other half with you, will that be okay". The angel smiles and says "I guess that will work".
But the little angel is still a little scared. She asks "will I be okay with only half of my heart?" Jesus replies, "of course you will, I have other angels there that will help out, and you will be fine."
Then Jesus gives the angel more details about his plan, he says "when you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday."
"And when its time to come back to heaven, I will make your heart whole again" Always remember that you are not broken, just torn between two loves"
Thursday, April 17, 2008
Five years ago today Morgan had her very first open heart surgery--we also wrecked our beloved Jetta five years ago today also, but that is a different story. It was the start of journey that would require Faith, determination, and strength that I could never have imagined.
Today, Morgan had a visit with her cardiologist...she has been doing so well, that I didn't really think anything but a med reduction would take place...but during her echo, he found a large pocket of fluid under her right lung. Those echo rooms get really small really fast when you are trying to absorb words that you're not quite ready for. I stood there, speechless.
So the plan is MORE diuretics....something that 71 days post op I am feeling they are going to become a forever a part of her life. Every time we've tried to wean, fluid comes back. She has another appointment next Wednesday, if there is more fluid or no change in the fluid, it is a good indication that the fluid is the chylo returning, and the diuretics won't help that and we'll have to return to the dreaded diet.
Just pray for Morgan...this really shocked her cardiologist and I, as she seems to be feeling fine--however--she does have a blueish tint to her skin again when she is climbing the stairs or when she is cold.
Mostly today is the reality that her journey really isn't over yet. That there is still so much healing that needs to be done and that best case scenario means lots of meds to support a good repair. This truly may be her new normal, and like everything else it is going to take time to adjust to....as a HLHS mom, you hope that Fontan is the answer to all of your prayers, the chance for your "blue baby" to be "normal" and the reality is, she still only has half a heart.
So PRAY PRAY PRAY....we need to move mountains.
Monday, April 14, 2008
So how many of your have logged on to see birthday pics!?!?! I apologize for not getting to this sooner, coming home after being gone for 10 days is a big task. Now that we have food in the cupboards and the mail has been sorted, laundry started, and Danica napping, I can get to some pictures!
Morgan had a GREAT birthday party! She had so much fun and my parents took the decorating to a whole new level! The backyard looked amazing and the straw horses were amazing! Morgan had the best time and I only cried twice! :)
So here are some pics...
This is Morgan's horse cake that I made. I will admit, I was a little nervous when she requested this, but it came out beautifully! :) And she was SO thrilled.
Morgan on her new swing--a horse shaped tire swing...VERY fun!
Danica is VERY excited about something....
Blowing out her candles...this is the first year she didn't need help getting them to go out.
Taking a ride on her "horse"!
One last party "cheese" from Danica!
My favorite picture of the girls from the week....
I swear Braeden was there, he had LOTS of time with uncles and boy cousins and just was always on the go...I think that is just what he needed too!
We are going to Outback tonight so Morgan have her birthday "steak" however, we will be home by 7pm because Daddy received very special permission to call his sweet girl on the ship's satellite phone!!!!!!
It's been a good day, a very happy day. So hard to believe that 5 years ago at this time, we really didn't think she was going to make it another day....and now her future is SO bright!
Happy Birthday Faithy! We LOVE you SOOOOOO MUCH!
Friday, April 11, 2008
Morgan received a very special gift from the city of Orofino....The Mayor proclaimed her birthday to be Morgan Faith Keane Day! She was SO excited...she said, I got a trophy for having heart surgery! I bawled my eyes out reading the proclamation and so for the rest of the day I just thought about all she has overcome and how this upcoming fifth birthday was a day I never believed possible. I don't know if many of you realize this, but Morgan's birthday is also the day the Titanic struck the iceberg and an "unsinkable ship" sank. Sometimes the things you think would never happen,happen just like that.....there was always so much uncertainty surrounding Morgan's 5th birthday, wondering if we'd ever get here, wondering what her quality of life would be like, wondering if it would be a celebration with hope of tomorrows or just merely another day of hoping she makes it through. Well, I can tell you that in 4 years 11 months and 4 weeks I've learned to never underestimate in the immpossible--there is no such thing as hopeless if you believe!!!
Our family is amazing, we took this little girl with such a grim chance at survival and promised her a lifetime full of love and laughter and the day before her very first open heart surgery she as she laid in that tiny incubator, we promised her that we would never lose Faith. We all need to live our lives like that full of Faith, trusting that with all of our heart and knowing that nothing is guaranteed but everything is meant to be. I was MEANT to be Morgan's Mom....and I am SO blessed. I wouldn't change a think about the past 5 years...I have grieved for a healthy child that I so dreamed she would be, but I quickly dreamed new dreams for her, and one of them was that her life would change lives, and guess what? She is!
Please keep Dan in your prayers....when we started this journey this 5th birthday was the "prize" we had hoped for. I am VERY emotional thinking about seeing her blow out those candles knowing that she is considered a survivor. Dan will be somewhere in the middle of the Pacific Ocean thousands of miles away....this will probably be one of the hardest days underway for him. To miss seeing your miracle celebrate a birthday that you heard for so long would never come is going to be hard on him. We were able to talk to him yesterday and he is really doing good! He's working some very LONG 18-20 days, but our country is a little safer because of it!
Okay, finally, the article....
April 14 proclaimed Morgan Faith Keane Day
By Ronda Nelson
April 14 has been proclaimed Morgan Faith Keane Day in Orofino. “This is for a little girl who kind of took this community and a lot of the people in it by the heartstrings,” Mayor Ryan Smathers said. Because of congenital birth defects, Morgan’s doctors said she would never reach her fifth birthday, a milestone she will celebrate April 14.
The proclamation reads:
Be it resolved by the Mayor and City Council for the City of Orofino, Idaho that
Whereas, on April 14, 2003, a baby girl named Morgan Faith Keane was born into this world with a rare condition known as Ivemark’s Syndrome. Nearly all of Morgan’s internal organs were misplaced and some were missing. Worse yet, she had developed only half a heart; and
Whereas, through the grace of God, Morgan’s parents, Dan and Angela Keane chose to give her life and vowed to seek out the best possible medical care possible; and
Whereas, Morgan has survived four major open heart surgeries, four cath labs, abdominal surgery, a very complicated tonsillectomy, and has been hospitalized for very rare and difficult childhood illnesses that we take for granted; and
Whereas Morgan, with her infectious smile and courageous will to live, has proven to all that even little girls who are not born perfect, can become heroes in the hearts of her family, friends and people who have never met her, but have read of her plight; and
Whereas, Morgan is now considered a Congenital Heart Disease Survivor surpassing all expectations from medical experts and the laws of average.
Now therefore, in honor of Morgan Faith Keane, a child who has captured the heart of thousands with her strength, character and love, it is my distinct pleasure to proclaim April 14, 2008 as the Morgan Faith Keane Day and that the recitals of this Proclamation become a part of history forever.
The proclamation, signed by the mayor, will be presented to Morgan at her birthday party April 12.
Morgan is City Clerk Janet Montambo’s niece. Montambo told the council “I do believe in miracles. Thank you.”
~There is a picture in the photo album of the presentation~
Thank you Ryan for making her day...The City of Orofino is an amazing place and the love and support we have felt makes it even more incredible!
CELEBRATE Morgan's birthday this weekend by CELEBRATING LIFE! Give blood, help a stranger, volunteer your time, pay it forward. Just do something for someone else....and wear pink! :)
Saturday, April 5, 2008
Greetings from IDAHO!!!!
Morgan's doctor visit was another good one...she is DRY DRY DRY!!! No fat, no fluid, just beautiful happy organs! So we had an excellent med change and were given a two week vacation! We don't have another doctor visit until April 17th!!! YAY Morgan! Morgan does have a sinus and ear infection though so she had to get some antibiotics for that...which means extra coumadin testing due to the fact that her INR levels will be affected by the coumadin....but with the home machine it is MUCH easier.
So we are in Idaho where we are enjoying Spring Break and will celebrate Morgan's 5th Birthday! SO hard to believe that Morgan is going to be FIVE!
Just lots of prayers that our "Faithy" feels better soon, although, she's not staying down to much--she is on a picnic with Grandma right now! :) She was so excited to show off her pink lips, fingers and toes to her Auntie's last night that had yet to see her! It's awesome to see her doing so well, even when she's sick her sats were 95 percent!
As birthday time grows near, I'll have lots to say, I'm sure!
Friday, March 28, 2008
TGIF, which means, it's doctor day! :)
Another GREAT visit today! Morgan is doing AWESOME! She went running into the arms of her pediatrician today, she was so thrilled to see him! He said, huh, I imagine there is no concerns about her energy levels! She had labs, ONE POKE, and everything looked SO good it appears that her thoracic duct has healed....we just have to test it....we've been gradually going up on fat and today the order was, McDonalds for dinner! Morgan SQUEALED so loud, I think the entire clinic heard her!
So on the way home, we grabbed some McDonald's and she had 2 of them and she's good! :)
She gained a bit more weight and her oxygen sats were 97 percent...it never gets old seeing it or saying it I tell ya! :)
So we go back again on Friday (unless something comes up from the fat) and if all is good, we'll make a med change!
Prayers work...we have heard all kind of guestimates on how long this would take to heal--but in true Morgan fashion, she is doing it on her own time! I couldn't be more thrilled! :)
Have a good weekend everyone!
Oh and one more thing...stop by and congratulate Morgan's heart buddy Amelia--she is OUT Of the hospital only 8 days after her Fontan! www.caringbridge.org/ny/ameliajoy
Way to Go Amelia, you rock!
Monday, March 24, 2008
It's a very exciting day in our house....
MORGAN WAS REGISTERED FOR KINDERGARTEN TODAY!
Seems so hard to believe that our sweet girl is going to be 5 years old and is going to go to kindergarten. She still seemed so small inside of that school!
We went over all of her medical provisions today and then as school nears in September we'll have a meeting with all her teachers and get on the same page about what needs to be done.
I feel old...two kids are going to be in school it's gonna be me and Danica! :) Although, I will admit I'm looking forward to that also!
So YAY for Morgan...she is officially a FOOTHILLS FALCON!!!!
Friday, March 21, 2008
Another cardiology/pediatrician visit today. I feel fortunate that we are able to see both docs at the same time they hear everything the other is saying and they both know what the other's plans and goals are for Morgan.
So.....Morgan GAINED weight! At first was I was terrified because that seemed impossible on such a limited diet and my immeadiate thought was that fluid has started to reaccumulate. In fact I think all of us thought that...however...after doing the echo she is STILL fluid free! YAY! We were able to lose the afternoon dose of the lasix and we are thrilled! A little bit here and a little bit there! She is also able to start eating Boca products like the vegetarian foods, and we were able to find "sausage" links and "chicken" patties today. This will probably be her diet for quite awhile. A little bit here and there is the only way to be sure the chylothorax doesn't reappear. She can also have 1/2 of a south beach diet pizza and that was what she wanted for dinner and she was VERY happy with it! So her cardiologist told me to relax she looks/sounds/and is great to keep doing what we are doing and enjoy having a kid that grows....what a concept! Her oxygen sats were 95oday and it still amazes me every single time! So continued prayers for continued healing and adjustment to meds and diet change. We go back next Friday....and she'll have to have labs again to check her electrolytes after the med change.
Keep praying for our friend Amelia (www.caringbridge.org/ny/ameliajoy) who had her Fontan yesterday is ALREADY out of ICU! That is awesome, we are so happy for you Mahron family! We love you and are praying for you all day every day!
Have a blessed Easter everyone...I love seasons of miracles and have often wondered how people don't believe in them! I'm fortunate to live with one everyday and call her my daughter. I know she has made believers out of people and will continue to do so with her life.
Wednesday, March 19, 2008
We are six weeks post op today! That is a pretty magic number in the world of cardiothoracic surgery. It's hard for me to believe it's been that long. I feel like I'll be celebrating more when we've been home for six weeks instead! :) Thinking about all we've done in six weeks makes my head spin. I never would have dreamed this recovery would take the path it did, nor would I dream how I would feel six weeks later.
This is the time that life is supposed to return back to normal, bike riding, lifting under the arms, time at the playground etc. However, for me I am finding that I am still questioning so much. Is she eating enough, peeing enough, peeing to much? Is she flushed, is her face swollen, is she pale, dehydrated, overhydrated? Is she breathing hard are her lips purple again? It's never ending and I long for the day that these thoughts are non-existant in my mind. Maybe they will never leave, maybe it's just part of being the mom to a kid with a life threatening disease. I just know that most of my day is spent "observing" Morgan for signs of distress. I know it's got to get better.
She has another appointment on Friday and I am sure my mind will rest a little easier for a few more days following that. It's hard to explain!
Tonight I want you to pray for our friend Amelia. She is going through her Fontan tomorrow. They are in a very similar situation as ours, they have had to travel from New York to Massachusetts to give Amelia the best shot at life. They left behind their other kiddos, the comfort of home, and set out onto the journey they have been preparing for. As I talked to her today I felt the feelings that are still very raw to me coming back. She is a beautiful little girl and I absolutely adore her Mom and Dad! Please please pray! www.caringbridge.org/ny/ameliajoy
Monday, March 17, 2008
Happy St. Patrick's Day!
It's nearly over, but I hope the luck of the Irish has been on your side all day! We sure have felt it in this house!
It is so nice having all of my kids back home under one roof relaxing and enjoying being a family again. I think we are just about settled in! I slept alone in my bed with no children, so I do believe I'd call that progress!!! The hardest part for me is that they look like they have grown a TON since I last saw them! I feel a little robbed of some time!
Morgan is doing AWESOME! She is just really recovering so well...she deserves this! On Friday, we were able to stop one of her diuretics...and today at the doctor, we were able to cut another in half! That my friends, means she is not accumulating any more fluid! :) Not only that she was able to add an eensy weensy bit of fat back to her diet. We need to do this very very slow since we don't want to overwhelm her body, but you've never seen a kid so happy as Morgan was to get a fat free cheese quesadilla with FAT tortillas! AND, she had a sliver of chicken tonight for dinner and she felt like a million bucks afterward. So, we are getting there, and her oxygen sats were 97 PERCENT! It's so beautiful to see her pink! So all in all, she is GREAT!
I hope this entry makes everyone as happy as it does us! We have another appointment on Friday, I'll be sure to le tyou know how it goes!
March 12, 2008
We've had 24 hours at home and it's been busy, yet, I feel like I'm on a treadmill and not making real progress. I didn't get nearly as far as I would have liked to with the doctor's, maybe tomorrow. I have a hard time 'waiting' my turn! I need to relax, Morgan is doing great and I just need to take great comfort in that.
My other babies are coming home tomorrow, a day early!!!! I can't wait. I miss them SO much and my arms just ache to hold them. If I have learned anything this month it is how much I was meant to be a mom. These babies may think they need me, but honestly, I need them. They are my world, and without them, it doesn't spin.
I have so many thank-you's to write. I am getting through them slowly and I know, thought I am trying not to, I may forget someone. We have received so many wonderful pick me ups along the way, I just really hope that everyone knows that no act of kindness went unnoticed and we are bursting with gratefulness!
I received an email from Dan, so he knows we are home! What a huge relief that has to be for him. I'm going to touch on that a bit tonight, cause I've answered a lot of questions about his deployment and I really want everyone to understand. We did not try to get him relieved of this deployment. When we were "shopping" for this job 18 months ago, we knew this surgery would fall in the middle of this tour. We knew we were taking a chance, however, we decided together it was a chance worth taking. When this surgery opportunity came up, and the deployment came even quicker we had some tough decisions to make. We decided that he needed to be on that ship. That we had made it through the worst, and we needed to show our kids, our family, and each other that life will continue to move forward. That when we make a commitment to something, we follow through. So that is what we are doing. Does it kill Dan to be away, absolutely, he has missed what I believe to be the best part, seeing her starting to thrive. I will tell you this, kissing my husband good-bye while our daughter is in ICU and my kids are several states away was THE hardest thing I've ever had to do. As a military wife you wonder when and if your husband is coming back to you....but to have the added stress of my children was incredibly difficult. Yet, it felt so right. He puts on that uniform everyday for a promise. A promise that there will be tomorrow. In an eerie way, that metaphor got me through one more week in the hospital. When I married Dan, I knew our family would make sacrifices, but at the end of the day, we would still be a family. I have no doubt in my mind that had Dan wanted to stay, he would have been allowed too. However, we chose this life, we chose Morgan's life, and we climb obstacles...that is just what we do. So be proud of my husband, and our family, we're moving forward, not looking back, no regrets!
Morgan is continuing to do great. She even "ran" a bit today. She's doing great on our stairs, and even better on her diet. Together we came up with a way to make "french" toast so we'll try it in the morning. And I found a recipe for a fat free carrot cake with fat free cream cheese frosting for her birthday cake...a huge relief for me. My baby needs a birthday cake...she earned it!
I still can't stop staring at her. Sometimes I'll walk into the room and she will catch my eye. She looks so alive to me. More than I've ever seen her. I truly believe parents of healthy kids take them for granted. I can say that because I took Braeden for granted for nearly three years. I "assumed" because I did everything "right" I'd only have healthy kids. But honestly, I have found out when you don't have something and suddenly you do, you don't ever want to miss a thing ever again. Next time your kids sleep, stare at them and really think about every single little thing their bodies are doing on their own, effortlessly. It should amaze you and if it doesn't, you really need to step back and think about your life, cause you're missing a really big piece of it. Life is disposable, so use it up! I found one of Danica's shirts in the laundry today and tried desperately to smell her on it. I was unsuccessful and was so disapointed, I just really wanted to smell her. Last night I walked into Braeden's room touching everything and then laid on his bed, just wanting for one minute to see the world like he does. I miss seeing his little glasses on the nightstand and seeing him walk through the door afterschool.
Alright, I need to catch some zzzzz's I know I'll be up late tomorrow sucking sweet bug juice from my favorite bugs! I'll update after our happy happy reunion!
Saturday, March 8, 2008
So far so good...
We are having a blast.
We settled into a good medicine routine, I draw them up, she puts them in her mouth on her own. She feels like she is in control that way, and we all know that Morgan likes control
We've been outside several times a day to feed ducks, play with Nyla's dog, and just soak up some sunshine and Daddy was even able to surprise us with a Congratulations phone call!
So keep saying your prayers that all stays wonderful! Morgan is SO happy right now, but the idea of seeing her sibilings soon just makes her face light up...not to mention what it does to my mommy heart to know that soon I'll be covered in kids again!!!!
I'm FINALLY enjoying this surgery and really seeing how very worth it it is. She's a whole new girl and I'm forever thankful!
Friday, February 29, 2008
Happy Leap Day....
I was trying to explain to Morgan that there will never be another today for 4 more years. She seemed thrilled with that!
We had a horribly busy afternoon yesterday. Morgan spiked a fever, which leads to panic in the ICU during post-op phase, so she had the full work up, blood, urine, xray etc. Poor baby.....however, we did up getting another IV started which means, more access, which really is a good thing. They started her on antibiotics "just in case" but thankfully nothing has grown. She also had a chest tube removed so she only has one...the one with chylothorax that seems to be giving us a huge amount of grief. She had to have them hand aspirated today, and they were able to get 170cc's out!!! Poor kid. On the up side, her cardiologist decided that we needing to "reward" her for being so good and she's getting a bit of a break on meds that she takes by mouth and they are putting as many as they can in her IV. BLESS HIM! It's a bit less of a fight that way!
Anyway, this may continue to take, weeks. Yes, I said...WEEKS. So please don't forget about us, or stop praying for us...never would I have dreamt that this would go on so long. Prayers for Dan's parents as they prepare for a week with the kids and do the changing of the guard tomorrow. I miss them so much.
I personally, had a very emotional night. Things just started hitting me and in your dark quiet moments alone, you start thinking about where you've been and where you've yet to go and it just gets to be a bit overwhelming.
Thursday, February 28, 2008
Well...Dan is gone and it's Morgan and I. So far so good. I have to give a HUGE thank you to a friend, that I SWEAR is hiding her halo when she comes to visit. A very good friend from high school now calls San Francisco home. She brought us an amazing dinner on Valentine's Day and has when we were readmitted and she knew that Dan would be leaving while we were still in the hospital she said she would be here to help me with whatever I needed, making sure that I had time to eat, shower, whatever it is I need. She has been here every day this week getting to know Morgan and learning all about Morgan's care. She has showered her with love (and gifts) and has brought out some HUGE smiles and giggles. Yesterday she pushed out the door and sent Dan and I off to have a lunch, away from the hospital together before he left and it was WONDERFUL! So...thank you thank you thank you Nyla, for just doing it all without being asked and for being here for me. You are such an amazing human being and I am blessed to call you friend!
On the healthcare front, Morgan, is doing well. We went out and soaked up some more CA sunshine and then even made a stop at the playroom. She is still draining LOTS of fluid so we continue to battle that. But she's really in good good spirits! :)
I'll update again tomorrow...hard to believe we're minutes away from March and we're STILL here. I never would have guessed it would have taken this long. Keep us in your prayers!!!
Wednesday, February 27, 2008
Not a lot to update with today....no real news...just more healing and more draining of fluid.
She is doing well, just taking everything in stride. Her meds are 4 times a day now and though she hates them, she is taking them all by mouth like a true champ. Although she did try to get out of them by telling us that she couldn't take them because they have fat in them!!! YEP, Morgan is on her way back, still sassy, still clever, and still outwitting us all!
So keep the prayers coming...they are work and she is doing fabulous...and lots of prayers for Dan as he says good-bye, and for my sanity!!!
Tuesday, February 26, 2008
WOWZER...the guestbook was a busy place..it was great to read all of your messages! Thank you thank you!!!!
Morgan continues to do great...she actually enjoyed a poke free morning and was able to sleep in. Her coumadin levels are really stablizing nicely....we'll recheck again in the morning. She did have a rough late morning when her chest tubes had to be cleaned and retaped. Her anxiety level is quite high during all procedures, rightfully so, and she just works herself up to the point where everything hurts afterward. However, we were able to play and enjoy some time before she settled into an afternoon nap!
The best part of the day is that we were able to remove her steri-strips from her chest incision and I can't event tell you how incredible it looks. Apparently our surgeon is known for nipping and tucking after Fontan (the final repair) to make the scar as minimal as possible....well...he did a FANTASTIC job! It truly is beautiful!
I found some more fat free goodies and she is doing really good on her diet. So finally I can say, I feel like this time we really are moving in the right direction.
Other than that...tomorrow is Dan's last day here. It seems so surreal that he is leaving. Never in my wildest dreams did I imagine it to happen like this. However, our family is so amazing resilient and we overcome everything the best way we know how.
So....keep thinking of Morgan's amazing siblings that are doing so great....we love you Braeden and Danica and are SO proud of you...keep thinking of the awesome summer we are going to have when Daddy is home and Morgan is all healed, camping, boating, swimming, fishing, and LOTS of marshmellows!!!! We love you so much!!!
I will update again tomorrow...thank you for all your love and support!
Monday, February 25, 2008
Well 24 hours into the no-fat diet and I couldn't be more proud of my sweet girl. She is handling this like a champ! I went to the grocery store yesterday and found lots of choices for her, since the hospital really doesn't have a lot of options that support the fat free diet plan. I found some pudding, fig newtons, fat free ranch, fruit snacks, pretzels, fat free cream cheese, nearly fat free bagels that passed the inspection, and fat free hot dogs! Morgan is very aware that she has to be cautious of her food choices now and double checks to make sure it's fat free. I'm thinking she is already feeling much better having that elimanated from her diet.
We went for a walk in the wagon today, soaked up some sunshine through some windows. It was really good for her. She is smiling lots and that is a good thing. One of her cardiologists stopped by today and is hopeful to get us to the hotel for the weekend. Baby steps though...we still have both chest tubes...so before anything can happen we need to get those out. They are working to change her iv meds back to by mouth and then we'll see how the fluid does at staying away. The fatty stuff won't be helped with the diuretics, but the combo of the meds and diet will help to rid her chest of ALL the fluid.
She is so brave, we have just a few days left with Dan and he is finding it hard to leave her bedside. Lots of prayers for him that he doesn't overdo it and is able to leave knowing that we've brought her so far and we just have healing to do now.
Thanks for all the messages and love and prayers, they truly are something I count on everyday. We're so far away from home, that the people that sign our guestbook and leaves us bits of love have come to be our family. Thank you thank you!
Sunday, February 24, 2008
Another bomb has fell....
Morgan has developed chylothorax. I know all of the heart mom's out there reading this are feeling our same kick in the gut--it's a shock. So now, let me explain what it is.
Chylothorax is a rare (occuring less than 2 percent of the time) surgical compiclation following open heart surgery. Chylothorax is the accumulation of chyle in the pleural (lung) space. Chyle is usually a milky fluid comprised of lymph drainage, which carries fat, protein and white blood cells (lymphocytes). It occurs after injury to or obstruction of the thoracic duct. Injury to the thoracic duct during cardiovascular surgery occurs because of its proximity to the great vessels (aorta and pulmonary artery) in the chest, where the duct crosses from right to left. In order to correct the problem, Morgan is going to have to go on a non-fat diet. We are meeting with the dietician today to get more info on this. It is going to delay discharge from the hospital and our return trip home. It's one more thing. Something we knew was a possibility, but honestly, never expected it to happen to us....isn't that always the way.
Lots of prayers for Morgan--I'm sure she's going to have a hard time understanding this and why she can't have some of her favorite foods.
Friday, February 22, 2008 10:42 PM CST
Just thought you all would like to see a picture of PINK Morgan...Thank you Marci for taking it and posting it, I'm only reposting it so it doesn't get lost in the journal!
Morgan truly had the best day she's had since surgery. We saw lots of her familiar smiles today and she was quite playful. A true indicator that she is finally feeling better.
I am hopeful for a quiet uneventful weekend in the hospital that will bring LOTS of continued healing!
Friday, February 22, 2008
It was a long night for Morgan...her chest tube sprung a leak and she sounded like a fish tank for most of the night. It was fixed around 1:30am and she screamed for an hour after that. She really has a severe case of white coat syndrome right now and everytime someone comes near her in scrubs, she starts to cry and get anxious. Poor baby.
After that she was woke with a poke since the IV the had been drawin from clotted, so another blood draw and a whole lot more tears. The poor girl just can't catch a break.
I stayed with her last night and I just came back to the hotel to get some rest. As I was leaving the cardiologist stopped to say that se was still leaking lots of fluid and needed a boost of IV Lasix to help dry her out and her coumadin levels were still too high and we were going to go down in those...meaning....more lab draws.
I'm so tired, so exhausted, and feel like we are starting all over. I've lost that light at the end of the tunnel and wonder when exactly Morgan and I will be home. *sigh* Hopefully I'll feel better when I wake up.
Keep praying, it's the only thing we can count on to be consistent.
Thursday, February 21, 2008
Holy cow has it been a long 24 hours.....
Morgan has now drained a half of a liter off of her lungs! Can you imagine what she must have felt like? Yesterday her heart rate was 150 , she was breathing 50 times a minutes and her oxygen sats were in the low 80's. She was a sick sick girl...Today, she is back down to a heart rate around 100, breathing about 25 times a minute and back to her 98 O2 sats that we have learned to LOVE LOVE LOVE in these past couple weeks. She is smiling again, and fiesty, boy is she fiesty today...and really just feeling MUCH better! They are letting her "be" today, not changing our home meds, and seeing if what they had originally planned for her is going to work. We'll know by the output of the chest tubes, if they are still draining lots, then we know we have to change something cause fluid is still trying to accumulate there.
This has been such a long road, and still, we really have no clue when we'll be home! However, I will tell you that prayer really does work. Not only is Morgan feeling better and improving, Dan and I were both able to handle this situation level headed and were each able to get some rest. So keep them coming!!!
Thank you all for signing Morgan's guestbook, the messages lift us up like CRAZY!!!!
And one more thing...somehow Morgan's beloved "Chow" Beanie Baby has been lost. It's a like brown chow dog with gold glittery feet, if anyone has one or finds one and wants to put in the mail to have it waiting for us when we get home, I'm sure she would be thrilled...she is convinced he went to Heaven. :( I'd much rather be able to tell her he left us to go make sure the house was ready for us to come home!!!
****UPDATE****
I have word that a duplicate Beanie Baby has been found and was mailed to Morgan!!!!! Thank you Dusty H.!!!!
Wednesday, February 20, 2008
******UPDATE 7:30PDT******
Morgan is out of the O.R. yet again and did great...she had 2 more chest tubes placed and within the hour they drained 17 ounces!!! Poor dolly, she must have felt like she was drowning. We once, again realized how quickly an easily we could have lost her....She is SUCH a fighter.
Please continue to pray for her as she starts the recovery process again....
********
We are at the hospital again...we came for our morning check up, and it turns out they are going to keep Morgan and send her to the cath lab this afternoon. She is in respitory distress and they believe it is because of the fluid around her lungs. They also need to check to see if the fluid is "fatty" material that will not clear up with the use of diuretics.
Morgan is really uncomfortable and uncertain about everything that is going on. I'm shocked...it all seems surreal. I just want her to feel good again...SOON. I'm scared for her little body and just ask that everyone pray hard for our sweet girl. She is trying so hard to do everything right and she's just not catching a break.
Dan was supposed to leave today to meet the ship for their deployment, but it looks as if he gets to stay and meet them at their first port call in about a week...please pray that this works out smoothly, cause I really need him here.
I don't know how long we'll be here at the hospital and am even more uncertain as to how long we'll be in California. Just lots of prayers.
Tuesday, February 19, 2008
Well.....we're not going home today. :(
Morgan's follow up appointment brought good news and bad news...The good....we're finally getting on top of the electrolyte battle and seems like we are so close to getting an adequate coumadin level. The bad news is that we are still battling pleural effusions (water around the lungs) and her liver is stll enlarged trying to play catch up. So we need LOTS of very specific prayers for the fluid to dry up and for he liver to come down in size. We have another appointment tomorrow at 8:30 to recheck. PLEASE PLEASE pray hard!!!!
Sunday, February 17, 2008
The day I've been waiting for for 4 years 10 months and 3 days has arrived, my daugther is out of the hospital after completing a complex series of surgies to repair her very broken heart and I can say....SHE'S A SURVIVOR!!! From here on out, she is now BEATING Congenital Heart Disease!!!! It's a very awesome feeling!!!
We got out of the hospital late last night after another very maddening day fighting about electrolytes...after a very long day that required yet another poke, another adjustment of meds, and a nasty bolus of oral potassium, they turned us loose!!!
We checked out of the family house this morning and are now resting at a hotel. We have our post op appointment on Tuesday morning and if all is well, we can fly home Tuesday afternoon!!!
We are SO tired. I can't even begin to explain the level of exhaustion. I thought I was so prepared for this, but honestly, I truly wasn't. It was much more overwhelming than I could have ever dreamed possible. The next six weeks will be a long recovery time...so please continue to pray...they work wonders!
I'll update when we are HOME!!! But until then...we are grateful for all of your emails, cards, letters and prayers...You have been the light on so many dark days!!!!!
Saturday, February 16, 2008
Well...we're still here!!!
We're fighting an electrolyte battle right now, trying to get everything going in an upward trend. We are also still fighting the coumadin battle. These two things are becoming difficult to understand when we see Morgan doing so well. We just want to take her home and love her and celebrate her and watch her grow and thrive. I was getting VERY frustrated with residents today and then one of our cardiologists came in and explained things a little more clearly. I can be patient right?!?!
Dan leaves for sea one week from today and I think that is starting to get to both of us as well. We miss seeing all three kids together and getting hugs and kisses and hearing everyone laugh. Yes, I miss my chaos! My life is not the same without hearing Mommy Mommy Mommy from 75 different directions! I can't wait to get back to it!
So there is a --------------->slim<---------chance we'll get out of here tonight...but don't hold your breath! I'll update when I can!
Prayers Prayers Prayers!
Thursday, February 14, 2008
It's a happy heart day here!
Morgan is TUBE free!!! She only has the monitors on right now, or her "buttons" as she calls them and her red light! We're doing good. We did the blood this morning only to have it CLOT! :( So it told us what we needed to know without repoking, that her coumadin is still not high enough. So...we'll try again tomorrow.
Her feeding tube is out and her oxygen is off her face and for the first time in 8 days we can see her beautiful pink face entirely! I can't stop staring at it...I watch her sleep, I watch her talk, it's so amazing. Seriously, I think this is something that parents take for granted....so today in honor of Morgan look at your babies lips and be grateful that they are pink!
Morgan is having a good day, she's napping now...so I thought I'd take sometime to let everyone know how well she is doing.
Fingers crossed that tomorrow is our lucky day and that we can have a quiet weekend in a hotel!
Wednesday, February 13, 2008
Welllllllllll..............
Morgan just had her last chest tube removed!!! She did great. The instructions they gave her while they were removing it was to scream for as long as she could! How great was that for her?!? She did awesome and is now entertaining us with silly stories while enjoying a "Tyco" high (tylenol with codeine).
So now really....we are waiting for two things...her coumadin INR's need to be stable and she needs to prove that she is taking enough food and water by mouth AND that she is going to take her meds by mouth. So there is a chance that we "might" be out of here and in the hotel by Saturday!!! We have to stay in the area for 3 or 4 days and then come back for another coumadin draw, chest xray, and echo and then if all is well we could possibly be home on a week from today!!!!
So continue the prayers they are working great! We are so tired and running on adrenaline. Morgan is doing much better, and YES, her I LOVE YOU's are back! She went for two rides in the wheelchair yesterday and in a few hours we can go again. Dan is really starting to feel the realness of having to leave us...so lots of prayers for him. Thankfully it is looking like he may get his wish to take Morgan home first.
So pray pray pray....
Tuesday, February 12, 2008
Exhausted. A verb meaning to consume entirely, to tire extremely or completely, to deprive of a valuable quality or constituent. I have reached that point--however--it has all been worth it.
Today has been a GOOD day!!! We seemed to have made a breakthrough yesterday using the feeding tube to take the edge off of feeding and the pressure off of taking meds!!! So we are continuing more of the same and hoping that this is truly our turning point to recovery!
There is a rumor cirulating that Morgan may get her final chest tube out tomorrow which would be wonderful! It is really an uncomfortable piece of equipment that just aggrivates her big time. We have finally got on top of her pleural effusions and she is "drying up!"
The best part of the day is that we were able to take Morgan out of the ICU for 30 minutes in the wheelchair. It was so good for her to see that she can be "disconnected" and that she still is a little girl that can move around and isn't suspended in space on top of a bed. She smiled big time and it was nice to see that.
She is interacting only with us...she still has no desire to talk with doctors, nurses or therapists and that's okay. She's endured a LOT...the surgery in itself was huge but the the unexpected trauma's that happened afterward have only added to the anxiety.
Morgan is going to go home on a LOT more meds than she was on. We have a LOT to learn about all of them so bit by bit this week will be receiving education on how to care for her. I did learn one thing while transfering her to a wheelchair that it was SO much easier to do while she was a baby! She can't be lifted under the arms, so scooping her is the only option.
Alright, I need to grab some lunch. Tonight is my sleepover night with Morgan. The first few nights we took advantage of her being medicated heavily and slept at the family house during the 11pm-7am shift. Now that she is more alert and requiring more "TLC" we are taking turns sleeping at the hospital.
I hope from here on out that I have nothing but good news and that we have reached a turning point.
I can't tell you how much your love and prayers have been felt and appreciated and how much your emails, letters, and packages have brought so much joy to Morgan. We are lining the wall with cards and she loves to turn her head and smile at them! Does anyone was to claim the music box that was sent? It is beautiful and Morgan ADORES it, but it didn't have a card attached!!! :(
Monday, February 11, 2008
******Update Monday 3pm********
Probably our worst day yet since surgery. Morgan was tortured today trying to get the feeding tube and new iv started. No iv was able to be started, and she's still puking with the feeding tube. We've heard a lot of "now what do we do today." I laid in Morgan's bed with her for awhile...it was the most normal I have felt since this began. I just miss my sweet girl so much.
********
Well it's Monday, it's been a LONG exhausting weekend. So many things have happened, I just don't know where to start. Morgan had a horrible experience yesterday when a resident thought it would be okay for Morgan to receive potassium via iv....afterall it was "only" 7ml's...it burned her veins horribly and now she is gunshy of anyone coming near them. Shortly after that, her last arterial line that they were able to draw blood from was lost. So now...we're back to being poked for labs, which is daily since she was started on coumadin to thin her blood. Her potassium is still incredibly low....there is still fluid in her lungs and in an hour or so, she'll be lightly sedated for more iv's and a feeding tube placement. She just doesn't have it in her to eat and she is VERY VERY sick to her stomach and having a hard time keep anything down.
The hardest part for me has been "dealing" with residents and nurses that rotate through....they know Morgan for a few hours...we've known Morgan forever. She's our baby, I know every inch of her body almost better than I know my own. It's been a nightmare trying to convince them of that every single time.
Morgan is coping by "withdrawing" she spends a lot of time staring at the wall, and like I said, yesterday was her first conversation with me. She has yet to tell me she loves me, yet to hug me, or even accept a kiss. That part is the hardest for me. My spunky, sarcastic, smiling girl, is in her own little world right now. I know she'll come back to us, and that right now she is just taking a break from all of the incredibly difficult stuff that she has been through, that NO four year old should have to endure....but for now, I look at her blank eyes and wonder and hope and pray that she knows that I didn't do this to "hurt" her and that she did NOTHING to deserve this.
This surgery/hospitalization has by far been the hardest on me. I have cried more tears these past few days than I have in a very long time. I ache for her. Again, I"m reliving the grief I had during her other surgeries for the healthy child we had so hoped she would be. She just deserves so much more than the pain she has to endure. Each slow passing day becomes more painful and more difficult to keep focus that all will eventually turn out alright.
From a cardiac standpoint, she's doing pretty good...it's amazing to look at the monitor and see that her oxygen sats are higher than her heart rate. That has never happened before...and she's just so beautiful pink. I just wish she could see it. The one image that keeps me going is imagining her standing in front of a full length mirror seeing her pink body full of oxygen and ready to play.
Morgan still needs so many healing prayers...we are still a LONG way from going home. I miss Braeden and Danica like crazy....I am starting to worry about Dan's deplolyment...and things are just really tough...I'm tired...very tired.
So PLEASE pray for Morgan and for all of us as we continue to heal.
Saturday, February 9, 2008 4:15 PM
Hi,
This is Angela Fox again. Mommy Angela called and asked me to update. The family resource center is closed for the weekend so they don't have any computer access.
Morgan is still pretty much the same. She started vomiting this morning and isn't even keeping liquids down. They've started nausea meds and are hoping that helps. They had a problem with the new chest tube they put in. It sounds like it may have been a combination of it breaking and being pulled out. There is still fluid building up but, they're hoping to wait until Monday and see how she does without it. Another chest tube was ready to come out so that was taken out too. So, for the time being, she only has one. She's still not herself, still not eating and is pretty anxious about the chest tube etc. Again they gave her some meds for the anxiety and hope that helps her out some. She's just not herself and that is hard. She is usually such a spunky little thing so full of personality...so seeing her so sad and felling so bad is really hard on Dan and Angela. They are at her bedside around the clock and while they are keeping their spirits up for Morgan's sake this HAS to be wearing on them. Angela sounded sad and is obviously still scared and tired. She is doing her best to keep up on phone calls etc. but, with Morgan still in ICU she doesn't have a lot of time to do so. Their primary concern right now is Morgan and helping her heal and feel better. She promised me that she'd call if anything changes and wants everyone to know that they'll return calls as soon as they have time. Just keep on praying and checking back for updates. I'll update for her through the wekend as I get news.
Thank you for the love and prayers for this sweet little girl.
Angela Fox
Friday, February 8, 2008
I feel like I should be saying TGIF...but no...it's not been a good day for Morgan.
The best way I can describe her is sad. She just doesn't want to do this anymore. She is refusing to eat and is having a really hard time with protein and following this surgery protein is very important. We're trying everything, but she's not responsive and we're getting closer to a feeding tube.
We thought we were going to get a chest tube out today and when the surgeon came to do that we ending up having a very scary internal bleeding situation that required in some amazing reaction time by the surgeon and she is now getting a blood transfusion from the blood she lost.
And that is really all I have...she is just really sad, and though her mail bag is filling up...she just remains sad. We're trying though to find a way to put a smile on her face, and she likes getting the mail but just kind of slips back into her funk.
Say lots of prayers that this blood transfusion gives her some strength to make healing move onward and upward.
Thursday, February 7, 2008
*****Update****
Well as my friend Angela updated, Morgan needed a third chest tube placed. She just continues to accumulate fluid in and around her left lung. Thankfully (I think that sounds good) the surgeon was able to do the procedure in the ICU and we just decided to take a walk. While the surgeon was doing that he decided her dressings needed changing and some of the deep line IV's could be removed...so I thought I'd drop a line to fill in the gap. We're doing what we so lovingly call, the cardiac waltz. It will look beautiful when all the steps are done correctly, it's just a matter of patience.
***********************************
What a difference a day makes!!!!
It's me, Mommy Angela on my "lunch break!"
Morgan is officially "stable!" Her heart rate is where it should be, her blood pressure is a little high, but there are lots of variables in that i.e. pain, agitation, noise etc. She is breathing on her own and her heart is pacing on it's own no longer needing the external pacemaker. She has had some applejuice but is still heavily sedated. The best part is that she is pink....she is BEAUTIFULLY pink. I sobbed and sobbed at her bedside last night seeing her amazing pink fingers and toes and those incredible pink lips.
She has quite a bit of fluid built up around her left lung and at 1pm they are going do another x-ray and then discuss placing another chest tube. We are adjusting meds and trying to figure out what will work best for Morgan's new and improved heart. It's hard to believe that it is repaired. It's been a LONG road and we still have a ways to go...your prayers work no doubt about it! We are grateful for them and ask for many many more of them!
Morgan is an amazing little girl who desires to live so badly it is apparent in every breath she takes.
I'll update again this evening....
Wednesday, February 6, 2008
***************7:55am*************************
Morgan is doing better today. She is extubated and hs woken a few times to ask for water. Her temp is stable. She is still needing the pacemaker...but is stable with it.
Keep those prayers coming. =)
********************************************************
***********UPDATE 9pm*********************
This is Angela Fox. I just got off the phone with Angela Keane.
Morgan really needs all your prayers. She did awesome through surgery and coming off bypass...but, is now VERY unstable. She has spiked a high fever and her blood pressure and heart rate are extremely low. The doctors are trying to get things stabilized with meds...
PLEASE PLEASE PLEASE say lots and lots of prayers that this sweet girl stabilizes quickly. I'll update as soon as I hear from Angela again.
*************************************************************
HER CHEST IS CLOSED
Yes, it is MUCH later than we expected. We arrived a the hospital and were admitted at 10:30 this morning and let me tell you I was a little hot under the collar that it was going to be much later. Only because Morgan was having a good time playing at the family house and I didn't want her to sit and stew about the surgery. However, in true hero fashion, she sat there patiently waiting and waiting, reading and playing gameboy and just entertaining us like mad! She NEVER ONCE complained about food or drink...and she just hung in there so great!
She again wanted to refuse her pre-med to make her drowsy, but she really needed it, so it went up her nose...she was NOT happy...but it had to be done and about 10 minutes later she was telling us all her silly stories and had no problem leaving us when the anestheseologist came and told her that there were butterflies in the operating room that they needed to go count. Dan and I have always made sure to hold our tears in when saying good-bye, but this time it was even easier...she was happy and the last words she spoke to me was "You's my best friend Mommy." Very slurred and very slow, but accompanied with a big smile! :)
So PRAY PRAY PRAY....it's going to be an incredibly LONG day/night. She won't be done until LATE this evening. It's hard to believe that our sweet girl is having her chest opened yet again, but what an awesome little miracle and proof that prayer does work. If anyone has every doubted the power of love, prayer, and God, they truly haven't known a little kid like Morgan. SHE IS AWESOME!
Oh and Elaine, if you read this....your blanket arrived while we were in the operating room holding room. SHE LOVED IT! Wow. What a labor of love and how very well you have come to know Morgan!!! Thank you thank you!
*** UPDATE**** 6:04PM
Morgan came off of bypass about an hour ago. Her heart restarted fine. They closed her chest adn are inserting chest tubes. Oxygen stats are at 100 We will see her in about an hour and a half. And she will be on the Ventilator through the night.
This is written by Marcianna Silva with Angela on the phone.
Keep those prayers coming! Obviously they're working!!!
Tuesday, February 5, 2008
Hello from SUNNY California and boy do I mean SUNNY! Unfortunately, we've been so busy we've not been able to enjoy the sunshine...however...in between skipping from building to building Morgan did tell us it was beautiful! :)
So pre-op is done!!!!!! It was a LONG morning full of appointments and blood work and everything else, but we survived and Morgan is one stuffed animal and four stickers richer!
Her blood work was the only teary moment...but thankfully we had a great phelebotomist and she got it in one poke...Morgan let out a howl and then it was over! I turned in the blood bank slip requesting 8 units of blood and a few other components, so though I know they may never read this...THANK YOU BLOOD DONORS>>>>>TOMORROW YOU SAVE MY LITTLE GIRL!
The family house was a little nerve wracking...last night there was no room, this morning we were number one on the waiting list but still no room, by early afternoon, we were in! So we are settled and there is a great playroom and big backyard for Morgan to enjoy what is left of the day.
Here is the kicker friends....Morgan's surgery was delayed. She is now the second case of the day. So she is scheduled to start early afternoon. This is where we need lots of prayers....she is going to be HUNGRY...THRISTY...and have a very difficult time understanding why she can't have breakfast and the mid morning snack she is used too. We are able to give her apple juice until 8am, but then NOTHING after that...we don't check in to the hospital until 10:30 am so the plan is to keep her busy!!!!! Not only does this mean a late start, but it also means a late finish...LOTS of prayers that no one gets tired! :)
Other than that...we're good....the doctor's are all ready, no one expects any complications, and all we need is lots of continued prayers...they work. Morgan is healthy and strong, we are in California safe and sound, and everyone is ready to make this girl pink!
I'll update tomorrow....
Monday, February 4, 2008
***MONDAY MORNING UPDATE***
We are all packed...Dan and I both slept horrible last night and Morgan did too. In fact Morgan got in bed with us at 11, the first time in a long long long time. She just kept telling Dan and I that she loved us SO much. *sigh*
Dan is also all packed for sea and we have to stop at the ship on our way to the airport to drop off his sea bag just in case he has to meet the ship last minute. He has 30 minutes left with all 3 kids until June...he's really struggling with that, so keep him in your prayers too.
I went back and reread some emails and my post from last night--I didn't realize how tired I was until I saw all my typos. I'm sure it will get worse before it gets better!
Thank you for all your support, love and prayers...they are absolutely working so keep them up!
Well...we're off.
I had a hard time packing for this trip. I have no idea how long we'll bring there, what to bring, or even what to expect.
We are ready for this week, we've waited SO long for it. It seems since her cath she has gotten even more bluer. Maybe it is just that I saw the numbers, saw how hard was working, and realized that it truly is time....maybe it's just in anticipation of a pink little girl. Tonight I watched her climb the stairs, on all fours, out of breath at the top, for what I hope is the last time. This is the start of a brand new day. She SO deserves this. I can't wait to see her "pink" receiving good oxygenated blood.
Keep praying for Morgan we still have a couple days to go...days that are going to be filled with anxiety, pokes, and without a doubt some tears.
I'll update on Tuesday after all of our pre-op activities are done.
Wow. It's real.
Thursday, January 31, 2008
What a difference a month makes....that is all I keep thinking about. Last month we were getting ready to ring in 2008 and now we are moments away from open heart surgery...next month at this time Dan will be deployed again and Morgan will be recovering with her newly repaired heart. Change is constant, and if you're not careful you may miss some really big moments.
I realized late last night (around 3am when I couldn't sleep yet again) that I've been repressing a lot of emotions because I'm so focused on getting everything done and Morgan staying healthy. I'm such a control freak and the need to have my ducks in a row sometimes pushes down some things that I really need to honor and acknowledge. So before another moment passes I'm going to do that...take the time to say some things that bring me to tears and weak in the knees.
I added some songs to Morgan's page that really seem to stop me dead in my tracks whenever I hear them. Songs that maybe weren't written from a parents perspective but they mean something to my mommy heart...Morgan LOVES music and we spend a lot of time listening to music. She is always the first to ask for me to turn it up in the car and when a familiar song comes on, she blares it at the top of her lungs.
These past 3 months, I have come to rely on my friends and family more than I ever have. It would be IMPOSSIBLE to list all of them but there are a few that deserve a few extra kudos...they keep me going when I just want to give up. To my parents and Dan's parents, you've really supported us, encouraged us and believed in us. You're always telling us how strong we are and how proud you are of us, but we are a reflection of you--so you are pretty amazing too! Angela, we've burned up some mobile to mobile minutes--but no matter how early or how late you always answer! Cassie, I can't even imagine how unbelivably painful it must be to watch us go through this journey--yet you are there for me...I know Andrew is watching over Morgan. Nicole, thank you for being such an awesome Auntie, sister, and best friend...I still can't thank you enough for the quilt! My grandparents Barbara and Homer...you are the best cheerleaders a girl can have. You've been through so many moments with us, you're always there, and your always optimistic, I love you so much for that. Ryan, you wanted to help, and you boy did you ever! Thank you so much for managing Morgan's account and making sure that everything got where it needed to be so quickly. And the list goes on and on...you are all part of Morgan's Miracle and we are so grateful for all of you. Some of you have never met our family, but you have embraced us as your own and it brings me to tears whenever I open a new email or letter. I know who my friends are, and I'm so blessed!
So onto the next subject...I'm terrified. I have never experienced a bigger pain, more helples feeling than seeing my child after open heart surgery. Three times I have walked watched them rush her bed from the OR to the ICU because minutes are crucial in keeping her going. Three times I've stood next to her bed trying to find an empty spot to touch, wondering if this is really my child, cause it certainly doesn't look like her. The last time I did that she was six months old....now she's almost FIVE. I've heard "I LOVE YOU---SOOOO MUCH" I've heard her squeal Mommy in excitment, anger, sadness, fear. I've watched her fall in love with Elmo, Little People, My Little Pony and now real horses. I've seen her rush into her Daddy's arms following a deployment...I know that she prefers waffles and sausage over any food on the planet. I know her favorite color is red, that she LOVES snow, water, and vanilla ice cream. I know that she is wise beyond her years, braver than anyone I have ever met, and not afraid of anything. She loves fish, frogs, and bugs and anything in the animal kingdom. She says she's going to be an animal doctor. She teases Braeden about wanting to be a vegetarian saying he will ruin the food chain. She and Danica have a one of a kind bonding time every night at bedtime and it usually results in them swapping beds. She's a real girl now...not that she wasn't when she was 6 months old...but now I KNOW her. I have watched her grow and thrive. I have refused to take no for an answer when it comes to her, believing that Morgan will choose her own adventure and she wants to live. She is well aware of Heaven and knows that when you die that is where you go...she knows God made her special and she may go before the rest of is...and you know what...she is OKAY with that! It's hard to imagine that a week from today, she is going to be laying in a hospital bed recovering from her 4th open heart surgery....in a "touch and go" position. I hate that she has to experience it yet again, yet, it means that she may get to experience so much more life. We still have SO much we want to show her, so much we want to teach her and now we feel like we have a chance....yet there is always that small percentage that we will come home without her....and that is really hard to even imagine.
So as we face these final few days at home...again I ask for more prayers....They are more specific this time...
*Prayers for Braeden to continue healing*
*Prayers for Morgan to remain healthy*
*Prayers for Danica to remain healthy*
*Prayers for Dan and I to remain strong*
*Prayers for my Mom as she travels back to be with the kids*
*Prayers for the blood donors who in the next few days will sit down for 20 minutes and in a week will give my daughter a chance at life*
*Prayers for our doctors as they prepare for the surgery*
*Prayers for our travel to California*
I'll update in a couple days!
Tuesday, January 29, 2008
LOTS AND LOTS OF PRAYERS!!!!
Braeden has had a cough since we got home and today he is running a low grade fever and had to come home from school early!
We need you to say all your prayers that not only does he feel better soon, but that MORGAN DOES NOT GET IT!!!! He is in quarantine in his room and has been wearing a mask since we got home.
A few for me too, as my anxiety about illness and Morgan getting sick is hitting an all new high. The amount of lysol, anitbacterial soap, and alcohol gel being used in this house right now is ridiculous.
SIX more days till we leave she MUST stay healthy!!!
**A woman that has followed Morgan's page for a LONG time :) and always finds a way to say the most encouraging words, left a beautiful prayer in the guestbook...it brought me much comfort reading it and I knew I had to put it on the main page...Thank you Ginny!**
Lord,
You have brought this amazing little girl this far, please keep her healthy for this much needed surgery. Help Braeden to heal quickly and please give Angela a peace that only You can give. Remind her that Morgan is safe in the palm of Your hand and You will keep her safe. I pray for the entire family during this very stressful time. May they see You in each and every day.
Sunday, January 27, 2008
Well we are starting to get some stuff done here at home. What a big job we have in front of us! Not only does Dan have to prepare to go with us to California he has to prepare for his next deployment as he will be leaving as soon as we get home from California.
I have put together some pics of our time in California....Morgan is so amazing. I am starting to work on a detailed slideshow of her fight to survive. It will be a tear jerker without a doubt, but it truly is the only way to honor how very far she has come.
In a couple days I'll get some more info on the page that a few of you have already started asking for, like the hospital address and specific prayer requests.
In the meantime, prayers for continued good health, safe travels, and peace of mind are at the forefront of our mind.
Friday, January 25, 2008
Well the ticker on the top of the page is NOT a trick your eyes are playing on you--it's our fontan schedule!!! In just 12 days, our little girl will be PINK! Her oxygen sats will be in the high 90's ad she will considered a CHD SURVIVOR!!!!!!!!!!!!
We just purchased our plane tickets to come back down. We need to return on February 4th for pre-op appointments...so we are basically going home to "prepare" for what is next. We have so much to do to get things done. So LOTS of prayers...not to mention Morgan MUST be healthy for this proceduce....so lots and lots of prayers for heathly everything for the next 10 days.
I am overwhelmed, excited, scared, happy, relieved, you name it, I'm feeling it. This has been the goal since day 1--to know that we are 12 days away is incredible.
A lot of you have emailed wondering what this surgery is all about...so I've put a "brief" description:
The development of the Fontan surgery, a set of staged surgical procedures performed over 3-4 years, provides the second option for parents who do not want compassionate care. Though it alleviates the symptoms of HLHS, Fontan surgery cannot "fix" the heart. It merely buys time, as much as 30 years, before transplantation.
The fix is done in three stages. First, a shunt would be placed shortly after birth to help the heart. In about 3-4 months, the Glenn procedure would connect the superior vena cava to the pulmonary valve, and finally at 2-5 years, the Fontan procedure connected the inferior and superior vena cavae.
She is our miracle girl and we are so blessed that we she calls us Mom and Dad! :)
We will needs lots of love and support these next few months!
DON"T STOP PRAYING! :)
Thursday, January 24, 2008
Well it's been 24 hours since Morgan went into surgery yesterday and she's doing great!
We actually came back to the hotel LAST NIGHT!!! The cardiologist came into Morgan's room and said, 'oh no Morgan you are looking to comfortable in that bed!" and he sent us home! We had to carry Morgan every where, cradle style last night cause she was not allowed to walk. They had to go in through both groin areas and her neck. This morning she will be allowed to walk slow short distances. She has some bruising under her eyes where they had to work to get the breathing tube in. But all in all, she's amazing. She did not shed a single tear yesterday. She did it all with a smile on her face and some kind of mature understanding of everything that was happening. She truly is my hero.
We have to stay put in out hotel today and then tomorrow we have more doctor visits. I am just grateful that we were allowed to come back to the hotel, the hospital is not a healing place, I don't care what anyone says!
We are thrilled with all of our blessings and can't believe it is real. I will tell you this, Dan and I FINALLY got a good night of sleep last night and Morgan is our one kid that likes to "sleep" in past 6am, so we even got an extra hour and a half of sleep!
Alright Morgan is on my lap and wants to type her own message! Thank yu all for your prayers...they can't stop though, we are going to have a busy couple months and we need them more than ever!!!
A message from Morgan:
zzzxzaaqqqqqqqqqatqq
Wednesday, January 23, 2008
It's me Mommy Angela...
She is out of surgery and in her room, and doing AWESOME!!!!
This has been a super long day, but we just met with the surgeon and not only is Morgan a candidate for Fontan...she NEEDS it! :) I never dreamed saying that my daughter needed to have open heart surgery was music to my ears, but after hearing the old news, this is complete magic!!!
Now when I say NEEDS Fontan, we are talking about soon...like 2 weeks soon. Long enough to go home and come back. Wow. Nothing is set in stone, but the penicilling has begun and Dan and I have a lot of details to work out. Dan is scheduled to deploy again around the same time and we have stuff to do with the kids.
We are going to be here the rest of the day, and then if Morgan continues to soar, they are going to "try" to get us out late evening and then we'll come back for a visit on Friday to figure out more stuff and check her incision sites.
So the prayers have been fantabulous...and we couldn't ask for a better outcome...just keep them up!!!!!!
I'll update later tonight either from here or the hotel
Wednesday, January 23, 2008 9am
***12:30***
Got a message that they'd received a page. No news beyond that. I'm assuming Morgan is out of surgery and they are tied up with she and her surgeon. Will post more as soon as I hear more. PLEASE keep praying. This was a VERY long Cath. Lab.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
***11:15am***
Just got a text message from Angela K. Morgan is still in surgery and they haven't heard anything from the OR. Please keep praying!!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This is Angela Fox updating for the Keanes.
Morgan is IN SURGERY!!!
Morgan was a TOTAL trooper this morning. No complaints of hunger, fear, etc. She went into surgery without ANY versed to calm her etc. In fact, Dan and Angela got to carry her into the Operating Room and the little sweetie had a grin on her face when they put the anesthesia mask on her. What an amazing kiddo!
I'll update as I 'hear' from them via text message. Please PRAY PRAY PRAY!!!
Tuesday, January 22, 2008
We are here.
It has been a GREAT day. Morgan is in the best mood--let's hope it continues when we pull up to the hospital. It's been so fun watch her "remember" where we are! She has found all the familiar "hot spots!"
The hardest part for Dan and I has been only having one kid. We keep looking for the other two and wondering where we left them! :)
We arrived in Oakland and went to pick up our rental car (the economy Ford Focus) we had reserved. The rental car agent asked if we were here for business or pleasure and we explained what we were doing and she said..."oh, well what is Morgan's favorite color?" And I said "red" and she said..."well how would Morgan like to go to the hospital in a red Mustang in a free upgrade?" So...we thanked her and took the car and Morgan, the horselover is THRILLED to be cruising town in a red "horse" car!!!! In fact she told us that she doesn't want to fly home, she just wants to keep the horse car!
We went and had ice cream for dinner at our favorite ice cream shop that also hosted Morgan's first birthday and made her "Make-A-Wish" cake. The owner was thrilled that we came to visit! It really does feel good to be back...although, homesick is not what we describe it as, just comfort.
I think as I sat down to write this I realized how real this is. This is our last shot hearing that there is another option. If our original doctor's say, we've done all we can, then truly that is the answer. I am praying for the most positive of results, but it's so hard to imagine what words are going to come from their mouths.
But even before that, Morgan needs our prayers for tomorrow. Pray for a success and SAFE cath. No surprises, steady hands, careful eyes, and patient minds. Pray for Morgan as she "fasts" and doesn't suffer being hungry for to long. Pray for easy IV access and cath access and for minimal pain as possible. But most of all pray for a strong heart that desires to live and experience life. This little girl loves being alive, and I love waking up to her every single morning. She has so much to do--so much to see--so much to give, my biggest prayer tonight is that it doesn't ever stop. Pray for Braeden...he is terrified for his baby sister. He understands now that you must have a heart to live and when it stops you stop too. He cried a lot this morning, and he just needs a boost.
I'll update from the hospital if I can...however, I have a back up plan, and my friend Angela will be updating as I send her text messages.
PRAY PRAY PRAY!!!!!
When you have Faith the size of a mustard seed, you can move mountains...NOTHING IS IMPOSSIBLE FOR YOU!!!! Go get 'em Morgan!
Monday, January 21, 2008
Well tomorrow at this time we will be off to the airport.
I have a BUSY day today, so I just wanted to take the time to thank all of you that have helped us get to this point. The kindness of strangers and the support from our families and friends have made this possible and it really makes me feel so blessed. I am overwhelmed with gratitude and can't believe that a "penny" drive could be so successful. Without a doubt, Morgan has many lucky days coming!
I will try to update on Wednesday after she is taken into surgery. I can't remember when the computer room at the hospital opens...but I will do my best. Until then, please keep Morgan in your prayers...she is still healthy and strong and really looking forward to this trip.
And keep our other kiddos in your prayers too...My parents arrived safely and we are getting them all briefed on the weekly happenings. Braeden will be great, but Danica, I worry about. She shares a room with Morgan and they play together before bed each night. Danica is a Mommy's girl that doesn't like me far from her reach, so just keep her sweet face on your mind too.
Just pray....everyday several times a day...we'll be in touch! And thank you again!
Wednesday, January 16, 2008
It seems to be working, PLEASE keep praying. Morgan is STILL healthy and strong...I am and still feeling like crap. I feel like most of it is stress, like I am just so completely overwhelmed, that my body can't take it much more. I have stayed in quarantine as much as possible and have nearly washed all the skin off my hands, and I've been using a mask when I'm around Morgan...if I forget, Morgan runs and gets it for me! :) Just a few more days...we can do this! I SO NEED TO FEEL BETTER THOUGH and Morgan SOOOOO NEEDS TO STAY HEALTHY!!
KEEP PRAYING, DON"T STOP!
Tuesday, January 15, 2008
One week from today we are on our way!!! We need a TON of prayers right now everyone...and when I say a ton...I mean...a TON!
I have the creeping crud--AGAIN. I truly believe most of it is because I have neglected my body and not taken care of ME....but none the less, we need to pray with all our might that Morgan doesn't get it. She has had a few coughs and all I can say is that a way of fear sweeps over me every time I hear it. SO PLEASE...just say lots and lots of prayers that we get through this healthy and strong. This is our ONE shot at this test....we need this to give us answers that are right now unknown.
LOTS AND LOTS of prayers!
Monday, January 7, 2008
Two weeks from tomorrow we are off...
Things are falling nicely into place, THANKS to SO MANY of you!!!! I am overwhelmed everytime I open an email or piece of mail offering support, love and prayers. It took Dan and I HOURS of discussion if this was the right thing to do, and having all of you behind us confirms that it is. Our parents have been a HUGE support to us, encouraging us every step of the way and offering all that they have to give to make this possible...Our friends have again stood by us and reminded us that asking for help is really okay...and complete strangers have supported us like I never could have a managed...it takes a village to raise a child...thank you for being part of our miracle.
Morgan is doing good...keep the prayers up. She is actually "excited" to go to California for heart surgery!!! She talks about it every day! Goofy Goober! She is healthy and strong and we are doing everything in our power to keep her that way. LOTS of prayers.
I am not sure how often I will be able to update once we are there. There is a computer in the hospital, so I will be able to give surgery updates, but you'll have to wait till we are home for pics. I will try to update after surgery but that will depend on if we are near a computer.
Other than that....I think that is it for now. Just keep us in your prayers--and keep my parents in your prayers, they will be traveling through some heavy winter weather to get here to stay with Braeden and Danica....
And for Braeden and Danica that they understand at whatever level they can why we are leaving them behind and that they adjust well and don't miss me to much!!! YA right!
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