Monday, August 23, 2010

Our journey with CHD

I think it's a great idea that Stefenie is hosting "Every heart has a story", over on her blog. I have decided to join in to be able to make connections with more members of this vast heart community I have been getting to know over the past couple of years.

Our story started a day after our third child, Bilal was born. We had been a family of four, for nearly eight years until he came into our life. One of those last decisions you make when you're about to turn thirty-five, and realize, if you don't choose to have your third child now, it might get too late. After a fairly uneventful pregnancy, except for an induction eight days before my due date for intrauterine growth retardation, (meaning he was so small that at 36 weeks he wasn't even measuring on the charts), and an easy labor, Bilal came into our lives at 11:19am on July 24, 2006. He was small for sure, weighing only 5 pounds and nine ounces, but loud and pink! Who would have thought that the news we were soon to receive would change our lives for ever?

The next day the neonatologist casually mentioned a murmur, but was not too concerned about it; so neither was I. On the day of our scheduled discharge her partner was rounding and came to talk to us. He informed us that he had asked the pediatric cardiologist to evaluate him, so we had to wait to be discharged. Hours passed by, until 5:30pm that evening when Dr. C walked into the room to talk to me. My husband, after spending hours waiting for discharge, had just gone home to drop our older two children off. So I was alone in the hospital room. Dr. C started to explain the anatomy of the heart, but I reassured him I was a doctor, and understood all that. I still didn't expect the bombshell that was to come next. He told me that Bilal had Tetralogy of Fallot. I couldn't believe it! Not my beautiful pink baby boy! My image of tet kids was 6 and 7 year old children, blue as a blueberry, and squatting, as in the old medical textbook photos. I just started fumbling for the phone, trying to get my husband on the line. I needed to be held by him and reassured, and he was still on the road.

We learned that Bilal was a pink tet, so he should do fine at home for months, as long as we had frequent follow ups with the PC. Large VSD, relatively mild pulmonary stenosis. Surgery was probably going to be at 4-6 months of age. So home we went, and I steadily watched him gain weigh as he nursed well. There were many, many sleepless nights, that had nothing to do with a newborn frequently waking up to eat. It had everything to do with the knowledge that I had a heart baby in the bassinet next to me, and I didn't know what to expect. We started noticing that he would breathe rapidly when nursing, and fall asleep often. His lips would often become dusky, although he continued to grow. In the weeks following we were at the PC's office every two weeks. The time frame for surgery went for 4-6 months to 4 months, then 3 months, then when he was 6 weeks old Dr. C decided it was time for The Repair within a couple of weeks. By then his growth rate had tapered off and he was taking Lasix for pulmonary congestion. So months before we had anticipated, Bilal went in for open heart surgery, at 8 weeks of age and weighing less than 9 pounds.

Handing over a child for heart surgery is probably the hardest thing I have ever done, but we survived, and I remember spending the morning praying and crying, and pumping. Praying and crying and pumping. Until surgery was over, and he was in the ICU. I barely left his side for a couple of hours for the days he was in the hospital. He remained on the vent overnight, mostly for pain control, and needed to be transfused twice. But within 36 hours of the first incision he was alert, and nursing actively. Two days in the CVICU, one day on the step down floor, and we were home! So surgery on Monday morning, home by Thursday. Amazing!

The first two weeks at home were not easy; Bilal could not tolerate ibuprofen because of vomiting and reflux, so Tylenol was all he could get. The reflux induced hiccups were horrible! But gradually, things improved, and life started falling back into place.

Less than three months after open heart surgery

All his follow up appointments have been encouraging. A residual VSD has closed on its own. He continues to have pulmonary insufficiency, and we have been told that valve replacement though not inevitable, is probable in the future. He has been cleared for 18-24 month appointments, evidence of how well he actually is doing. And now, we are enjoying Bilal with all his energy, and feistiness. He is a true blessing.

I did not personally know a single family affected by congenital heart defects when Bilal was born. It was a scary, lonely journey in the beginning. But now I know he is 1 in 100. That's very common. And I am proud to know so many heart warriors and their families, thanks to my blog, facebook, and a small local heart community. I feel like they are my extended family now. Click on the link below if you would also like to make connections with this amazing heart community. You will read some heroic stories, I promise you ♥

Every Heart Has a Story


Stefenie said...

I have been following your journey for a little while now but had no idea how your journey began.

Thanks for joining my blog event and sharing your story!

Wodzisz Family said...

I am so glad you shared your story here. I have read through your carepages, but it is so great to read the whole story on your blog. If you are anything like brought back a whole flood of emotions writing out everything. The memories came back like it was yesterday.

You all remain in my thoughts and prayers.

Shannon said...

I've been reading for a while too, but didn't know the beginning. I'm so glad you shared!

Bilal's baby pictures are PRECIOUS!! I'm not surprised though, he's sure a cutie now! :)

The Portas said...

I love reading "heart stories." Thank you so much for sharing this. Bilal is certainly a superstar. Wow, what a great recovery, and he is doing incredibly well!

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