"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
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 23) and David (19) and our oldest daughter, Rachel (15), 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 continued to improve on her eating abilities and we have not fed her daily through her feeding tube since November 2004, PRAISE GOD! The tube was used on multiple occasions (for years) to administer fluids to hydrate, preventing hospitalization. The best part was 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 for updates! Also, PLEASE sign her guest book often as well. It is such an encouragement to hear from you! Lisa is old enough to read these messages herself and I KNOW she delights 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.Lisa has autonomic issues (also known as dysautonomia), diagnosed in September 2008. 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, where they agreed Lisa needed to have the supravalvar pulmonary stenosis repaired; however, we also knew Lisa needed to have her mitral valve replaced in the not too distant future. The plan at that time was 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. Lisa’s 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! In May, 2009 to September, 2009 Lisa was diagnosed with hypoventilation, hypercapnia, vocal cord issues and started on a Bi-Pap machine at night. She also has multiple allergies that cause her to have frequent sinus infections. In 2012 Lisa was diagnosed with hypertension. The decision was also made to finally pull her feeding tube. That led to three hospital stays (more than a week long each) and two additional abdominal surgeries. 2013 brought a plethora of other problems, with the diagnosis of seizures and multiple medication reactions that have deeply affected Lisa.
2014 she had additional new medical issues. Lisa has a severe underbite, class III, caused by her bi-pap machine. Without divine intervention, she will require major jaw surgery to repair it. It will be extremely risky because she is on coumadin. In addition, we confirmed she has a paralyzed vocal cord. they have long suspected it; however, with the onset of puberty it was able to be diagnosed. She was also dealing with a gradual worsening of her cardiac issues as she grew. Christmas, 2014 Lisa was extremely ill and was dealing with rapid blood loss anemia. She received multiple blood transfusions for weeks, as well as IV hydration. In February, 2015 she became gravely ill with pneumonia. It took several months and lots of IV antibiotics, but by May she was feeling better and had been invited out to LA to sing/perform with many famous stars to raise funds for the Serious Fun Camps (a camp for children with major medical diagnoses. One of the highlights for her was performing with Carole King and Natalie Cole. Ms. King even allowed Lisa to sing a solo line to one of her songs, “You’ve Got a Friend”. One of the highlights for me, besides the obvious of seeing my daughter perform live on the Dolby Theater Stage (where they host the Academy Awards!) was standing on stage with Jamie Foxx’s arm around my waist. By August I had FINALLY convinced her cardiologist that there was more going on with Lisa and she must be seen at CHOP for evaluation. My Dad died September 30, 2015 and we left for Philly shortly there after where Lisa had a cardiac cath (we were gone for 3 weeks) and they determined her symptoms were indeed related to hr heart. Surgery was scheduled for January 26, 2106 and Lisa has had a miraculous recovery. She is still healing and has a long way to go; however, they replaced her mitral valve for a second time and repaired her supravalvar pulmonary stenosis with a biologic patch. While we know Lisa will never be cured and there will be more surgeries n the future, we are thankful and blessed at how well Lisa is doing. Praise His name!!!!!
Lisa looks amazing and most days you would not even know she had any health issues if I didn’t tell you. Lisa has to use her wheelchair at times; however, she is just like any other child her age and quite a little girly girl! THAT is the POWER of GOD!
OUR SON, DAVID, WAS DIGANOSED WITH PSEUDOTUMOR CEREBRI/ INTRACRANIAL HYPERTENSION (PCT/IH) ON APRIL 18, 2009. 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 high functioning autism, focal epilepsy with complex partial seizures, migraines, sensory integration disorder and learning disabilities. Many of these diagnoses have taken years and thousands of dollars to have identified. 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. Pete did not pursue this testing at that time, because of the expense. In December 2010, we traveled to Pennsylvania to see a top specialist in the field. He is very expensive and new appointments take four to five months to book...new medications and treatment have been tried, although we still haven’t found the medicine that helps improve the quality of his (and therefore our) life
In December 2010, we found out our daughter, Rachel, had an exacerbation of a medical problem we have been dealing with since the summer of 2008. She would prefer privacy on this matter; however, I will say it can be life threatening in some instances, although at the moment her condition is not, Praise God! It has caused lots of stress, 2 to 3 extra MD appointments weekly and huge expense. She deserves nothing less than the best care to improve her health and we will do our best to ensure she receives the care she deserves! In addition, she also has asthma and a history of pancreatitis.
Not to be left out, Christian was diagnosed with a severe debilitating disease in July, 2012, 2 months after he graduated college. Because of his age, I will also respect his privacy and not share here a lot of what he and we have endured. I do believe God is working out these needs and he will have a full and happy life.
Many of the children’s doctors (as well as Pete’s) feel our medical issues are a direct result of Pete’s Marine Corps service in the first Gulf War. The government will never admit to that and you don’t have to believe it. It doesn’t matter what caused all of these issues, it only matters that we move forward and not let it ruin our lives.
You can click on journal history to read more of our journey.
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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
“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
Tuesday, January 31, 2017 3:19 AM EST
The next few days will be intense for us and prayers are always welcome. Rachel has a CT scan today for her back, to check and see if she has any loose bone fragments that they can see on a scan. This afternoon she has another spinal injsection. Tomorrow (Wednesday) she will have her wisdom teeth out. Prayers for our wallet would be welcome as well.
Today is the LAST day to order T-shirts to support our medical fund and raise awareness for Congenital Heart Defects (CHD's). Order a T-Shirt
Thanks for always praying!
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