~We Believe in Miracles~

Lisa
Miracle From God

LISA means "CONSECRATED TO GOD"



"Many are the afflictions of the righteous: but the LORD delivereth him out of them all".~Psalms 34:19 KJV


LISA'S HEART
A story of Faith, Hope and Love

Turn your speakers on to hear the beautiful music




Lisa is our fourth child and her story is truly a testament to the power of God and the miracles He has given to our family. If it were not for His mercies our precious daughter would be living in heaven with God instead of blessing our lives daily with her sweet, tender heart.



Lisa was born March 3, 2003 and it wasn’t until she was 14 days old that she was diagnosed with a rare congenital heart defect known as ALCAPA. The coronary artery grew from her pulmonary artery, instead of her aorta. I had postpartum complications and had been discharged from the hospital just the day before, so when I thought something didn't seem "quite right" with Lisa both my husband and my Mom-in-law thought I was just exhausted. I insisted on taking her to the emergency room where they finally examined her and discovered she was in heart failure and that had we waited until the morning to have her examined as her pediatrician suggested, she would have died. Emergency surgery was required and the local pediatric cardiothoracic surgeon was out of town so we were rushed to UNC-CH for immediate repair on March 18, 2003.

Lisa's chest was kept open for FIVE LONG DAYS following her first open heart surgery. Her blood pressure shot up (they think this may be when she suffered one or both of her strokes) and they were forced to open her chest up a second time to relieve the pressure. You could actually see her heart beating through the transparent dressing!
Although they assured us she was improving, her Dad and I were not convinced and after we had transferred back to our local hospital it became evident she was dying. It was indeed a blessing that we had originally been sent to Chapel Hill, for while our local doctor would most likely have been able to repair the ALCAPA defect, mitral valve surgery in a newborn is extremely rare and complicated. If we had not traveled to Chapel Hill, it might never have occurred to us to take her elsewhere for additional surgery! The distinct feeling they were not qualified in Charlotte to perform this second surgery had me searching the internet for a facility anywhere that had more experience and success with mitral valve surgery in such a tiny infant.


Wanting the best care in the country for her we narrowed our search to Philadelphia (#1) and Boston (#2) the two top rated pediatric cardiac facilities in the United States. As God would have it, the physician that is now Lisa's local cardiologist has a wife who was born with CHD's and she had 2 heart-lung transplants at Childrens Hospital of Philadelphia (CHOP). Her first transplants were unsuccessful; however, the second time gave her back the life she had prayed for. It was not chance that, Craig Greene, the local cardiologist, became Lisa's primary doctor while she was hospitalized. Although he rarely made hospital visits, he was the doctor who visited her the most here in Charlotte. There were pediatric nurses on the floor who didn't even know who he was, he so rarely came to the hospital!


Lisa and I were sent by air ambulance in a LEAR jet to Philadelphia on April 12, 2003 where Pete was waiting for us already. We had to wait for Tom Spray (the best pediatric cardiothoracic surgeon in the USA!) to return from an out of the country trip. This gave Lisa time to gather strength after our long journey. He repaired her mitral valve (and her Atrial Septal Defect~ASD) on April 16, 2003 and within days of the surgery Lisa was sitting on our laps, smiling.



We returned home to Charlotte after being away from our other 3 children for 2 months. Our sons, Christian (now 18) and David (14) and our oldest daughter, Rachel (10), were overjoyed to have us back home with their precious baby sister. We, of course, were delighted to be here!

On June 2, 2003 a feeding tube was placed in her tummy due to poor weight gain and severe reflux. July 30, 2003 it was converted to a MIC-KEY and we praised God for the ability to know she was receiving the nutrients and medications she needed.

She required round the clock nursing care with medicines administered at least every 3 hours and tube feedings which ran from bedtime until 4 a.m. This was an exhausting schedule which lasted through October,2004; however, God provided the strength to endure. We considered it a labor of love.

Lisa continued to thrive and improve until the day in May 2004 when during a routine office visit, her cardiologist discovered the leak in her valve had increased dramatically and he felt she needed to be reevaluated in Philadelphia. We were told June 15, 2004 she needed surgery within 3 weeks. That was performed on July 9, 2004. They had hoped to repair the valve once again; however, she required a mitral valve implant to replace her damaged mitral valve and papillary muscles.

Due to the mitral valve implant Lisa will be on coumadin for the remainder of her life. She has pulmonary stenosis due to the original ALCAPA repair. She also suffered 2 strokes, one on the left side of her brain and one on the right side of her brain. These most likely occurred during the first surgery at UNC-CH when her blood pressure went sky high and they had to leave her chest open for 5 LONG days, due to the excessive swelling!

She continues to improve on her eating abilities and we have not fed her daily through her feeding tube since November 2004, PRAISE GOD! The tube has been used on multiple occasions to administer fluids to hydrate, preventing hospitalization. The best part is being able to administer all of her cardiac medications and knowing she received them! We also have been able to not administer medications in the middle of the night and that has been incredible! Looking at Lisa you would never know she had been sick a day in her life and she is incredibly intelligent, which is another miracle after having so many heart surgeries! She is bright, funny, strong minded and just a delight to know!

God keeps assuring me Lisa will be fine and I believe Him. I just take each day one moment at a time and wait to see what journey is in store for me that day. It is definitely a humbling and teaching lesson to have a medically fragile child and to watch her every need cared for by our Lord. Lisa has so much that she teaches others just by her everyday life of smiles, love she gives, her sunny disposition, and the comforting feeling she gives to EVERYONE she has met!!! It truly is awesome and I praise God and give Him the glory!

We are so glad you stopped by to see how she is doing. Please check back often for updates! Also, PLEASE sign her guest book often as well. It is such an encouragement to hear from you! To those who have already signed Thank you so much for showing us you care! It is so comforting to read your encouragement's again! Also, one day Lisa will be old enough to read these messages herself and I KNOW she will delight in knowing that she was thought of so many times!

In August 2007, Lisa was diagnosed with Middle Aortic Syndrome and femoral artery occlusion on her right side. Her abdominal aorta is less than half the size it should be and her femoral artery supplies a "string size" flow of blood to her right leg. Both of these issues cause their own set of challenges. Please continue to pray for her myriad of health challenges!

OUR SON, DAVID, WAS DIAGNOSED WITH FOCAL EPILEPSY WITH COMPLEX PARTIAL SEIZURES ON OCTOBER 16, 2006. He also has migraines, sensory integration disorder and learning disabilities, as a result of the epilepsy. It has taken us ten years to receive this diagnosis of epilepsy, as they continued to diagnose and treat the symptoms, not the cause, which has been his seizures...In addition he suffers from restless leg syndrome, periodic limb movement, parasomnia and sleep disorder. David sees the hematologist for labs, usually every two weeks and receives IV iron every three to five weeks.

My husband, Pete, was diagnosed with a pituitary adenoma just days before Lisa was born. In July, 2006 we were told he had a secondary lesion at the base of his brain. June, 2007 the MRI showed both brain lesions had changed shape and the Pituitary adenoma had grown very close to his optic nerve. I give him intramuscular shots weekly to help with his symptoms. We had a second opinion/repeat MRI by a top endocrinologist at John Hopkins Hospital in July, 2008. This doctor feels Pete has a secondary issue going on. It is up to Pete to choose to have the further testing required to make this additional diagnosis.


You can click on journal history to read more of our journey.



March 3, 2003




June 3, 1998





October 3, 1994





August 3, 1990


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Our Angel’s Lullaby

God is so Great,
He’ll do you no Harm,
He is Rocking you Now,
In His Mighty Arm.

So do not Cry
Or Whine or Stir,
For God is Protecting
Your Heart so Pure.

Your arms Outstretched
So Light and Sweet.
Your Enemies….
God shall Defeat.

People Rejoice and
Idols will Fall,
At the sound of your Voice,
Your Cry, so Small.

Wrapped in a Blanket,
As White as a Dove,
As God sings His Lullaby,
Of Faith and Love.


Christian B.
Written at age 11



The Strength of an Egg

by Juliet Freitag

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albiet flattering,it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes!

If you'll think about it, you'll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.

Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.

A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock.

It takes a lot more than pure hardness to hold the hand of hope. Parents of [medically fragile] children are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household, going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.

Unlike Humpty Dumpty, though, parents of [medically fragile] kids will pick themselves up and put themselves back together again.







“Give thanks to the LORD, for He is good; His love endures forever.” ~Psalm 107:1


"Do not be anxious about anything, but in everything, by prayer and petition, with Thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your heart and your mind in Christ Jesus."
~Philipians 4:6-7



"Praise be to the LORD ,
for He has heard my cry for mercy.
The LORD is my strength and my shield;
my heart trusts in Him, and I am helped.
My heart leaps for joy
and I will give thanks to Him in song."~Psalm 28:6-7












CONGENITAL HEART DEFECT FACTS

Congenital heart defects (CHD's) are the MOST COMMON BIRTH DEFECT and are the number one cause of death from birth defects during the first year of life. MORE children are born with CHD's than cerebral palsy, sickle cell disease, down's syndrome and oral/facial clefts COMBINED!

Nearly TWICE as many children DIE from congenital heart disease in the United States each year as die from ALL FORMS of childhood cancers combined! YES, COMBINED! Over 91,000 lives are lost each year in the US due to congenital heart disease.

Out of 100 births, 1 baby will have some form of congenital heart disorder, ranging from mild to severe. The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on families at a very vulnerable time. Some of us never recover.


Christian in his "casual" Senior Portrait



David Carving a Pumpkin



Princess Rachel on her TENTH birthday June 3!



Princess Lisa, Age 5

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life". ~John 9:1-3

Journal

Wednesday, January 7, 2009 10:36 PM EST

Hello to all of our faithful prayer warriors. David’s appointment with the new neurologist is tomorrow and we would welcome prayers that this new physician might be able to shed light on how best to help him. Friday, Lisa has a hematology appointment and Christian has a doctor’s appointment as well. He returns to school on Sunday and we are going to miss him terribly! His grades were AWESOME, as is his GPA says the proud Mama!!!! He is gearing up for another tough semester (he doesn’t slink away from the tough classes…I wish he would just a bit :o)

Lisa had a rough night last evening. She had a tough time getting comfortable. She said it felt strange in her heart and demonstrated by clapping her hands together quickly. About 10 PM she came to tell me it wasn’t any better. She laid on me for over and hour, short of breath. Finally she was able to lie down in her bed when she felt better. This morning she was very tired, which isn’t unusual. If I tell her we are getting her ready for school, that usually spurs her to get ready. This morning, she told us she didn’t want to go to school, she wanted to go back to bed! Pete carried her back upstairs and she stayed there for about thirty minutes, then came downstairs and said she was ready to go to school. She had her medicines about 45 minutes earlier, so we thought maybe they had time to kick in. She was a bit late; but, did okay once she got there. Tonight after dinner, she wanted her bath and was ready to go to bed…at 6:15 PM! Is all of this heart related or just part of getting back in to the swing of things? I think it is all interconnected. Praying for answers soon, it feels as if we have been hanging on FOREVER to get things taken care of…this has dragged on far too long and my sweet baby is the one paying the price. PLEASE join us in prayer for answers. I would like to know that waiting isn’t causing permanent harm to her heart! I DO believe it is all in God’s timing, I also know that people are human and things fall between the cracks, I have seen it happen too many times…Lisa has waited LONG enough to feel better! If it is God’s will for this surgery to take place, PLEASE pray with us that the doctors hurry up and make this decision! God IS listening, I know this. HE is the reason Lisa is doing as well as she is!

Tuesday, January 6, 2009 9:36 PM EST

To those who have been concerned, we are still here, just exceptionally busy. School started back for Lisa, Rachel and David on Monday and that means adding teaching back to my daily duties and even more driving in addition to the five doctor appointments this week and other therapy appointments we always have. I have tons of emails to answer and if you are in the list, I will try to answer you soon. As for CHOP, still no word; however, we truly didn’t expect an answer so soon…they have only had the report less than a week and there was a holiday and weekend in there. That doesn’t mean I am not eager to hear, just trying to be realistic. They have to get all of the big guns together to decide the correct plan of action. Duke called today to schedule Lisa’s surgery (They had wanted us to come Friday to be admitted for surgery on the 12th…NOT HAPPENING)! Pete told them we were getting a second opinion from CHOP (I was at the doctor’s office with Rachel).

Lisa was exceptionally tired yesterday at school (although we did do something fun after school, I will share later)…her teacher told me she was feeling great today! That changed quickly as she crashed as soon as I got her into the car. It was great to hear she was being a typical child though! She actually had to be asked to quiet down…a rarity! She was ready for bed before 8 PM tonight and was exceptionally short of breath. I promise more later, lots going on around here, just too tired/busy to journal. Some is good, some is not. Praise God I don’t have to worry, because He has it already figured out! It truly IS good to be able to turn it all over to God…He can handle the worry for me!

Thursday, January 1, 2009 8:36 AM EST

HAPPY NEW YEAR to all of our faithful prayer warriors. Declaring this to be the year that all of our dreams come true! Many of our dreams include you and your families, so this declaration is for ALL of us! We know this year will fly by much too quickly, there will be many trials, there always is. There will be FAR MORE joys and blessings from the Lord, remember that when you are in the midst of the fire (Good words for me to hold near in the coming weeks). Many of us are starting the New Year with the knowledge that surgeries, scans and treatments are definite realities in January. As we welcome the New Year, we also dug our heels into the old one, not wanting to face the things already scheduled or soon to be…Just remember the only thing you can change is your attitude or how you react to the news that you hear. God WILL be by your side through it all and there will be those who will pray with you during it all. There are far more kind people that care than that don’t and we have had a beautiful reminder of that this holiday season!

So now that I have given you (ME?) a pep talk, I can share the news of yesterday. I tried hard to journal it last night and just finally gave up because it wasn’t coming out right. This was after some hours in front of the computer deciphering information I received; but, I am jumping ahead of myself…

I was preparing lunch yesterday when I received a call from our cardiologist (Dr. R) in Philadelphia. She apologized for keeping me waiting so long for an answer…She had just received the films on Christmas Eve! Without the cardiac catheterization report. We actually knew that Monday if you read the journal. It is now WEDNESDAY and she STILL doesn’t have it, they sent a dictated letter Dr. K had written, still no report. It seems it was missing…I nearly hit the roof, because we were at Duke nine LONG days to GET that report…

I called Dr. G’s office(local cardiologist) and said PLEASE call whoever you have to, but find that report! Tiffany (God Bless her heart) got on the phone with Duke and they finally tracked it down and sent her a copy. She sent both Dr. R in Philly the copy and one to me. Dr. R told us once she received the report and saw the pressures within the heart, then she could see if Lisa needed surgery or not. She said based on the letter she received from Dr. K, the beat blockers were just a temporary band-aid. I was able to shed light on Lisa’s condition for her; however, I am happy the report is now in Philly. Of course, now it is once again a holiday and she was not to be in today. Hopefully we will have an answer by next week.

So how did I spend New Year’s Eve? Alternating between spending time with the family and trying to decipher bits of the report that was over this old nurse’s head! My coping mechanism is intellectualizing everything (Yes, that is a real psychological coping skill, lol. Describes me to a “T”). The internet has been an invaluable tool for me!

I believe in my heart that Philly will recommend surgery, I just don’t know how soon. I would prefer it to be warmer outside if possible; yet of course we will do what is best for Lisa. Key words that jumped out at me were coronary arteries are patent, PRAISE GOD!!! (although the right one is small). They had told us at Duke that if the coronary arteries were affected (point of original defect) that the prognosis would be poor! So again, PRAISE GOD!

The things that didn’t look good
1)supravalvar pulmonary artery stenosis with filling defect of inferior portion during systole
2)elevated right ventricular pressure (2/3 systemic at rest, near systemic with stress)
3)dynamic left ventricular outflow tract obstruction (LVOT)
4)decreased cardiac index that improves with stress (this is her bradycardia)
I will not bore you with the cardiac pressure numbers (that is what I was trying to look up last night, what a headache that was)!

Recommendations: Patient needs surgical repair of the supravalvar pulmonary stenosis. Patient may need an internal pacemaker following surgery, due to irregular heart rhythms and bradycarida.

Now we have our report and hopefully, CHOP does as well. It is out of our hands, as it should be and will be in the hands of the surgeon who has so skillfully operated on Lisa twice before. I found it interesting that in person the Duke doctors told us without a doubt that the stenosis was a direct result of the first surgery performed at Chapel Hill, yet in the report they wrote possibly as a result of the intrapulmonary tunnel repair. It was the same when the doctors diagnosed her two strokes. They told us Chapel Hill caused them; however, in the report it was a possibility they were at fault. What a shame they can’t be more forthcoming in what they write. I really wouldn’t try to sue them, it would just make getting answers for our daughter a lot easier! So, now you know all that we know! I am certain it is as clear as can be now, lol! Bottom line, they will make a recommendation soon and we will do what is best for Lisa. One other disturbing thought came to me last night…our local cardiologist kept saying he saw the films and wasn’t worried. What I didn’t know was he NEVER saw the cath report, so what was he basing his opinion on? The Duke docs were concerned!

We are going to my parents for lunch today, therefore I need to wrap this up. Tomorrow Lisa sees the hematologist and we expect no surprises. Please continue to keep our family in prayer and ask God to protect us in this new year. My New Year’s Resolution for the past few years has been “To be Rich, To Live Well and To Serve God”…I have managed to keep it every year! Some of you are probably saying…hey Judy, you aren’t rich. Oh YES I AM!!! Haven’t you seen pictures of my beautiful family? What more can I ask for?? Praise His Name!!!!

E-mail Author: betpj@aol.com