Friday, June 12, 2015

June 12 - Dear Nicholas Sparks (Guest Bloggers Brad, Shelley, Justin and Tyler Bruce)

Dear Mr. Sparks,

My first pregnancy (Tyler's brother, Justin) was close to perfect, I felt great and had a beautiful healthy baby boy. So at age 28 when I became pregnant with Tyler, it never occurred to me that there could be anything wrong. I had Hypermesis gravidarum (excessive vomiting) and was placed on medication (which I kept blaming for Tyler's birth defects.) A couple of times I was told my uterus was too big for my due dates, but I had three ultrasounds, the last at 28 weeks, and no problems were detected. I often blame my family doctor because there were little things that should have been checked out. Anyway, when I went into labour on 2 Jul 97, the only thing I was worried about was whether or not the Canadian Forces would be able to get my husband out of the field 4 hours away and to the hospital on time. I thank God that he did get there in time, and my Mom was there as well (she was my coach, as we did not know if my Husband Brad would make it or not). My Mom has been there every step of the way, I don't know what we would've done without family and friends.

After Tyler was born, there was all of a sudden many doctors and nurses in the room and he was whisked away before I even got to hold or touch him. When the doctor came back and told us what was wrong, we were in shock. We were told he had a right sided CDH and a 50/50 chance. Every hour he lasted would improve the odds. My husband didn't believe the doctor, and to this day when we see that doctor, he laughs and says he remembers the look on Brad's face, that Brad knew he was full of it. We were told that the hole had to be fixed, and that no consensus had ever been reached on when the best time to do this was. However, they wanted to do it right away, mostly because of the anesthesiologist who was there, he was excellent with children and that was something they desperately needed. So after trying to keep him stabilized for 10 hours, Tyler had his first surgery. Thankfully, it was successful.

Tyler had what we considered a fairly complicated stay at the NICU. We were told that he would be in the hospital for at least a couple of months, but it was only 6½ weeks before we were allowed to take him home. Tyler started out on the oscillating ventilator, and he was paralysed using Pavulon and medicated with Morphine. He did so well that within a few days he was on a normal respirator, and when he was six days old, he was taken off the Pavulon. At 10 days, they tried taking him off the respirator, and all hell broke loose. His good lung collapsed, and triggered Supra Ventricular Tachycardia (SVT), a sort of short circuit within his heart controller in which the heart beats upwards of 300 beats/min. He had three bouts of this which were brought under control normally, but the fourth required adrenaline to calm it down. For the rest of his stay, a needle of this was by his bedside.

Just before we left the hospital, Tyler started developing white milky-looking bowel movements, and developed jaundice soon after bringing him home. The doctors here in Kingston were certain that it was a result of the TPN (IV food) and the fact that Tyler's liver and bowels had been herniated into the chest cavity, a somewhat strange fact in itself, as normally the liver acts as a plug in right-sided CDHs. However, we were sent to Toronto Hospital for Sick Children to be sure.

It was there that we learned about Tyler's second birth defect, called a choledochal cyst. To keep it simple, it is a malformation of the bile tract. Tyler's is a type IV, which means that his bile duct and the tract into the liver were formed more as sausages then as tubes. This is more rare than a right-sided CDH, and is found in boys in only 20% of those cases. The odds of the two of them together are quite a bit higher than of winning the lottery (why didn't we?) Anyway, at 12 weeks of age, Tyler had his second major surgery. This time they removed his bile duct and gall bladder, and made a bypass directly into his small intestine. They also put his appendix back on the correct side, something we didn't even know was wrong! Unfortunately, they couldn't do much with the ducts in the liver, so it is a wait-and-see game as to whether he will eventually require a liver transplant.

Which brings us to now. Tyler is almost 17 months old now, and he is approx. 29" tall and 19½ lbs., not much considering he was just under average (6 lb 8 oz) at birth. For the first few months after his second surgery, he was considered a failure-to-thrive baby. Numerous times we were told "if he doesn't gain any weight soon, we will have to admit him." As well, he has a medium-severe milk and egg allergy (God threw that one in just for fun!), so we carry an epi-pen wherever we go. Tyler is still sick at least 1 week out of every month, whether it be pneumonia, bronchial problems, or flu-like symptoms, but so far has only required one additional hospital stay, (pneumonia) and that was to ensure he didn't dehydrate. I spend a lot of time in Doctors' offices, clinics and hospitals, but I guess that is par for the course, it could have been much worse for everyone. Developmentally, he is very close to normal (whatever that is!). He is a rough and tumble little boy who picks on his big brother all the time. He is funny to watch, being so tiny, but he runs everywhere, and is slowly starting to talk now. I use to wonder "why us" and "why our child", but I now realize that it's because our family has a great deal of love and strength. Whatever happens in the future, we will face it together.

Tyler's family, Brad, Shelley, Justin and Tyler Bruce. (Canada)

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