"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 August 16, 2007
David in the Train Room at Fort Wilderness
Princess Rachel on her TENTH birthday June 3!
Princess Lisa on her FOURTH birthday March 3!
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
Saturday, October 4, 2008 6:54 AM EST
You are all the BEST!! Each and every time I log onto Lisa’s site and see your words of encouragement in the guestbook, I get a tear in my eyes (sometimes lots of tears, and always plenty of smiles)!! As for David, he was completely overwhelmed at the many entries made in recognition of his special day. He smiled and laughed and told me how sweet you each were to think of him. He derived huge delight in thinking of so many of you enjoying chocolate cashews in his honor! I wish you could have heard his infectious laugh as he talked about it! And YES he got some chocolate cashews to enjoy on his special day, along with a plush fleece blanket he had asked for “to keep him warm” and a mini havoc heli, I had tucked away after last year’s Christmas end sales (Yes, I AM the queen of bargain shopping and stashing). His day started out with school, with me giving David and Rachel the afternoon off (we had to go to High Point to pick up Christian after Lisa got out of school). David enjoyed his dinner and cake, a few phone calls from friends and Meemaw (Pete’s Mom)and Papa, Nana and my brother. He played outside with Christian tossing the baseball around and flying his little helicopter. He was ecstatic and joyful, just as a birthday should be. He requested Rachel play him a special song on her guitar and she obliged. As I kissed him good night I asked him if it had felt like his birthday…He grinned, like only David can, and said “oh yes, it was awesome”! Thank you to everyone who helped make it a special day!!!
Christian had some issues at his doctor’s appointment we are addressing…his BP was way too high, he had gained a lot of weight (although to look at him you can’t tell it) and he is tired much of the time. These are definite concerns since his last check-up in May. They could be attributed to college and new surroundings, etc. however, in view of our family history, we can’t take any chances. They took a lot of blood and we will return during Christian’s fall break in mid-October.
I spoke to Dr. Green (Lisa’s cardiologist) on the phone for a while Friday morning. He concurs the cardiac cath and EP studies MUST be done (check last journal entry under history if you missed anything). Bottom line, he has been saying for most of the year that we might need to look at these pressures in her heart and in view of Lisa’s well documented bradycardia, we really have no choice, but to go in and see what is going on. He feels she does have autonomic issues; but, there are definite cardiac issues in addition to that. He said his hope is that we will go in and NOT see a need to have open heart surgery (which would mean we are definitely Philly bound… I Love you all in Pennsylvania; but, I hope to not see you for a while, I know you all understand :o). He said if it ISN’T a mechanical problem she will need a pacemaker to address the issue of the documented bradycardia. Now here we go again, of them discussing us after we have left the building…I didn’t get that impression talking with Dr. K, it was more of a if it is not mechanical we don’t have to worry….SOOOOO, I will NOT worry! God has us in His capable hands and it truly doesn’t matter what I worry about, now does it? I just need to eat this elephant one bite at a time and get through the week hospitalization and the intrusion on my Princess’s heart once again! She needs some nightgowns and a few diversions for the hospital, which I am working on, so I have a practical outlet to keep me busy. I hope Duke has a good Child Life program, anyone know the answer to that? I looked them up on-line and they at least DO have the department! The surgery scheduler is out until Wednesday, so I don’t have a date for the hospitalization yet.
That is it in a nutshell! Your prayers and constant support mean the world to me! I will not apologize again for being absent from your GB, I know you understand the tremendous strain I have been under for many months…I am always here, praying and try to sign in as often as I can (because I KNOW what those GB entries mean)!!! My peace comes from knowing God is in control and my prayer warriors are interceding on my behalf! I will be interceding on YOUR behalf this afternoon. I have to take Christian back to campus and will be alone in the car for a good long time to just sing, praise God and ask Him to bless all of your needs! Feel lifted this afternoon and think of me asking for blessings for you up and down the Interstate! (Also, say a little prayer I find gas…Only four stations in High Point were pumping yesterday and I heard in Charlotte yesterday we still only had 20 percent of the stations with gas)! HOW does it continue on for so long… foreshadowing of things to come?
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