Mom Describes How Lane Entered World

"At my 20th week ultrasound my doctor noticed something wasn’t quite right with the baby’s heart. We were sent to a few specialists, weekly trips to a perinatologist in Saint Petersburg, for ultrasounds. We were  told our baby boy wasn’t going to make it".

We never believed them. Not only did he “make it” but I carried him full term.

They induced me when I was 39 weeks pregnant. Unfortunately Lane wasn’t tolerating contractions so they had to do an emergency C-section. FORTUNATELY, they caught this while I was pregnant so we knew to deliver in St. Pete by All Children’s Hospital.

At twelve days old Lane had open heart surgery entailing a right atrium reduction (his heart went from rib cage to rib cage, cutting off oxygen to his lungs so he was on oxygen for his first 2 months of life). He also had his tricuspid valve repaired and a gortex flap put in place for a pulmonary valve.

Nobody prepared us for what he looked like following that surgery. We consider ourselves very strong people; however my husband and I both agree that we were in shock when we first saw him. We then spent 3 solid months in the cardiovascular ICU.

Shortly after Lane turned one he had his second open heart surgery which entailed replacing his gortex flap pulmonary valve. At that time they said he was too small to attempt to mess with his tricuspid valve. Apparently when they go in to repair the tricuspid it is extremely risky to be done on an infant. (We were blissfully ignorant to that fact the first time, thank God). He came out of that surgery like a true warrior and was sent home in less than a week.

Immediately following his second open heart surgery he started getting arrhythmia – ventricular tachycardia and then into ventricular fibrillation. Back to the hospital. He had a cardioversion…that temporarily took care of the arrhythmia, so then he had a catheter ablation (where they put scars all over his heart to stop the arrhythmia).

Since his last procedure (October 2009) he has been in wonderful health! We were initially told after his second surgery that he most likely wouldn’t need another one until he was approximately 10 years old…however, since then they have stated he might need one around the age of 5 for his tricuspid valve. We continue to believe in miracles and are continuously praying for another miracle.

Lane’s diagnosis is “Pulmonary Artresia and Tricuspid Valve Dysplasia”. He will require a few more open heart surgeries as he grows. They are now actually growing heart valves in petri dishes…about 5 years out – wonderful news! He will be getting his Mic-Key button off soon. As most heart babies, he didn’t eat very well at first so we used the Mic-Key to administer breast milk and all of his medications. NOW, he is only on two medications and eats more calories than I do in a day. He would be a little fatty if it weren’t for his fast heart rate giving him a high metabolism!

Lane has been a little behind in some areas developing, but ahead in others. He FINALLY just now started walking. He still doesn’t talk (he babbles) but doesn’t say any words, however he puts sentences together by pointing to things…he definitely gets his points across. Just when I really start to worry about what he isn’t doing yet, he starts doing whatever it is. One thing our family laughs about over and over again is “everything is on Lane’s time”.

I am now a stay at home mom taking care of baby Lane. My husband is a home inspector now. We were both in the mortgage business; I was also in interior décor. It was a blessing in disguise, as my husband Tony was laid off from his job with Wells Fargo-WCI Mortgage only a few days before Lane was born. At least he was able to stay with us at the hospital; on the downside he didn’t have work for quite a long time. We thought we had enough in savings for “emergency”….. Ha! I don’t think one could ever prepare for that. THEN, shortly after we brought Lane home from his first surgery we received a letter from his insurance company stating he had already met his 2 million dollar lifetime max. Hence the benefit on July 29th. The economy has only made matters worse, but we are very fortunate that Tony was able to find a job in another area especially in this economy.

It is truly sad to see all of the little children, and there are A LOT of them, in the hospital going through all they go through. This has truly been a life changing experience. I don’t ever see a commercial of a sick kid that I don’t start crying. Once Lane gets a little older I plan on getting involved with something to help people that are going through what we went through. Not exactly sure what yet, but I figure God gave us Lane and this heart of his for a reason.