"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 was not 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 health challenges!
June 2008, Lisa began experiencing extreme fatigue, bradycardia/tachycardia and other symptoms. We began an odyssey to discover how to best help her. November brought a nine day hospitalization at Duke Hospital for a cardiac catheterization. They told us she needed a fourth open heart surgery as soon as possible to repair her pulmonary stenosis (which was caused during her first surgery at Chapel Hill). We wanted her doctors in Philadelphia to examine the films. We finally traveled to Philly in February, 2009. They agreed Lisa needs to have the pulmonary stenosis repaired; however, we also know Lisa needs to have her mitral valve replaced in the not too distant future. The plan at this time is to try and combine surgery four and five into ONE operation, to open her only once. Each time we have to go through the same incision causes its own set of problems. Lisas medication have been adjusted and we are happy to see her continue to thrive, in spite of everything that is going on in her tiny body WE BELIEVE God is giving us another miracle! Lisa has to use her wheelchair at times; however, she is just like any other child her age and quite a little girly girl!
OUR SON, DAVID, WAS DIAGNOSED WITH FOCAL EPILEPSY WITH COMPLEX PARTIAL SEIZURES ON OCTOBER 16, 2006. ON APRIL 18, 2009, HE WAS DIGANOSED WITH PSEUDOTUMOR CEREBRI/ INTRACRANIAL HYPERTENSION (PCT/IH). He is at risk of losing his eyesight. These neurological disorders are usually life long (unless they go into remission) and can be quite debilitating, altering quality of life. David also has migraines, sensory integration disorder and learning disabilities. We feel he has had undiagnosed PCT/IH since he was VERY young. In addition he suffers from restless leg syndrome, periodic limb movement, parasomnia and sleep disorder. He has peripheral neuropathy to his right foot and uses a small foot brace. David sees the hematologist for frequent labs and receives IV iron as his body requires it.
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. He has not pursued this testing, because we cant afford to pay for it.
You can click on journal history to read more of our journey.
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Our Angels Lullaby
God is so Great, Hell 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
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.
Blume Clinic had a photographer take some photos of us. I love them except for one thing, Christian was at school and is not in the family photos.
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
Thursday, July 2, 2009 4:30 PM EST
Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. Let the word of Christ dwell in you richly as you teach and admonish one another with all wisdom, and as you sing psalms, hymns and spiritual songs with gratitude in your hearts to God. ~Colossians 3:15-16
Christians surgery went well. He FINALLY stopped bleeding and ate a little yogurt. He is trying to be such a good patient. He doesnt want to have me do anything for him; however, he is in no shape to stop me, lol. David and I went to his appointment an hour early and they took us in! We got to the oral surgeons office just in time to take Christian home, while Pete went to get his pain/nausea meds. I usually do things like that beforehand; however, I forgot until last night and it was too lateI am happy to say Christian had NO ill effects from the anesthesia (He was the only one of our four children who had never been put to sleep).
David did all of his ophthalmic tests and told the doctor how he was feeling. I had to give the doctor a reminder to give David time to process what he was being asked and to allow him to answer his questions in HIS time and way (The doctor had snapped at David because he wasnt answering the way he wanted him to and David shut down. There is now a reminder on the chart about this so it will not happen again. Just because David LOOKS like a man at 5 11 doesnt mean he is oneand he isnt like most 14 year olds either). The visual field showed little change other than a small blind spot to the left eye peripherally. We will watch it closely. Davids glasses made a huge difference in his vision, although everything he looks at has a shadow to it. It is worse on bright objects, neon objects and small letters/ numbers, ie: reading. He also had some subtle changes to his optic nerve the doctor will watch closely. He reminded me to call him if I noticed anything out of the ordinaryIt is hard to break in new doctors :o) I wish they ALL could be like our Cardiologist, Neurologist, Hematologist and Gastro doctor! They are naturally wonderful!
Rachels lab work all looked good, praise God! The referral has been started although the new doctors scheduler was off until Monday, so we will have to wait until then to get an appointment on the books. Rachel has Jazz camp next week. The Community School of the Arts (featured on the Today show last Friday and again on Monday) gave her a hefty scholarship to attend. She is SO excited, she is their youngest student ever to this camp (it is for 7th grade and above). If you have heard Rachel play the guitar you know why they made the exception! They have also given her a hefty scholarship to take guitar lessons in the fall. She is a self taught player, with some help from Pete (the student has surpassed the teacher though). It has been her dream to have an instructor and after YEARS of searching I have found a way to make the dream come true! She is ecstatic!
Lisas pulmonologist wants me to bring her in Monday to discuss the results of her CT and what the next treatment plan isnothing like keeping a Mama waiting over a long weekend! They told me I could have a copy of the CT Monday after I discussed it with the doctor (talk about breaking in doctors). When I called to check on the girls, Lisa was laughing and having a great time. When Pete gets home one of us will pick them upthey told us not to hurry!
Pete and Itrying to keep it together. We have certainly done our share to stimulate the economy this week with all of the medical bills. We have to meet our deductible again, since the COBRA ended and the new insurance began in AprilI believe we have met it for all four of the children! (This is TWICE since January we have had to do this, of course). Pete went on to work for half a day and I stayed home caring for Christian as much as he would let me. We are glad it is a three day weekendit will be low-key. It would be nice to get away for a vacation; but, like many in these trying times, that is a luxury not in the budget.
I want to end this by saying HAPPY 54TH ANNIVERSARY MOM AND DAD! Thank you for always helping us out when you can. We appreciate you!
I also want to Thank You dear readers, for your constant support and prayers. Your messages in the guestbook can make a dark day just a bit brighter by knowing you care. God Bless you all as you enjoy this Fourth of July and dont forget to say a prayer for the Men and Women who are serving this country so that we will continue to be a free nation. Thank a Veteran for your freedom as well.(Thank you Pete)!
Wednesday, July 1, 2009 7:30 PM EST
I would like to tell you that Lisas CT scan on Tuesday went well; however, that wouldnt be the truth. We arent even sure if the results will be viable due to a horrible reaction she had to the versed (an amnesiac/relaxation drug). It had exactly the opposite effect on her. For hours following the scan she had terrible side effects. The CT results are not back at either the pulmonologist office or her cardiologist. I would like to have them before the holiday weekend; however, I do not think that will happen.
Rachel saw her pediatrician today for a visit. We were able to catch her up on each child in the family (Lots to share that she had not yet heard about) and then she examined Rachel and did labs. Rachel needs to see another doctor and they are referring us for thatI expect we will not hear any more about the appointment until after the holiday either.
After the doctors visit we took Rachel, Lisa and Bandit to my parents to spend the night. This gave us the opportunity to celebrate my Dads birthday on the actual day and enjoy a delicious meal my Mom prepared. Petes boss took them out to dinner to celebrate another wonderful month of profitability, so it worked out well. Christian, David and I stopped by the store to get some ice cream, yogurt, soup, etc. for Christian to enjoy while he recuperates from having his wisdom teeth removed tomorrow. Davids neuro-ophthalmology appointment begins an hour before Christians surgery. Pete will take Christian while I accompany David. Pete will go to work once I am able to take charge of both of the boys. I will try to do a short update tomorrow just to let you know all is well. The girls will stay at my parents until Pete gets home and one of us can pick them up. Christian cant be left alone for the first twenty four hours.
I trust you all to blanket each of the children in prayer. God is good and faithful and will keep us all safeof that, I am certain and thankful.
You can sign up for email notifications to know when I update Lisas site. Just put your name and email into the appropriate fields below and click submit. When you receive the email notification to opt in to the mailing list, click Yes (check your spam box to make sure it didnt go there). IF you receive an email that says mailer-daemon unknown, scroll down and click it anyway. If you have trouble, please let me know and I will try to help you, it truly isnt complicated. If you dont want to sign up, just keep checking back, it seems we need as many prayers as ever! Even if you do sign up, please check in, just in case the service doesnt work :o) I can only send one email notification per day, so if we have a wild day it will only let you know ONCE. At least you will know though that we are in need of urgent prayer! PLEASE dont forget to check your email and CONFIRM you want the updates.
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