Monday, February 9, 2009

CHD Awareness Week - Post 2

Yesterday I posted about how our journey began as parents of a daughter with CHD. I will continue that today. Zoe spent the first 5 weeks or so of her life at the Seattle Children's Hospital. I cried the first time I saw her laying in the infant ICU, hooked up to various monitors, with IV lines running and a feeding tube in her nose. I thought how unfair it was that a baby so small should be subjected to so much, and this was before they cut her open! She spent 2 weeks in the Infant ICU before her surgery. That surgery went well, and I went back to see her in the cardica ICU, and cried some more. This time, it was even worse. Those of you who have had a kid undergo surgery know that they look different when they come out, and it's not just the fact that they have a scar and lots of machines going, they really do look physically different. It was hard to see her like that, but I and my mother in law and sister in law spent some time by her side, and then left after a while since there wasn't much of anything to do. So I went back to the hotel where I was staying. Several hours later, I received a call from the nurses saying that Zoe's oxygen levels were dropping and they couldn't get them back up. I needed to get there ASAP so I could sign a consent form for them to put her on an ECMO machine. I remember crying some more and just praying that God would save my little baby girl. I was so scared when I got to the hospital, not just because of what was happening to her, but because when I saw her, she didn't look blue! The surgeon came in and didn't believe what the monitors were saying because she didn't look cyanotic. That freaked me out because I thought "if she doesn't look blue at 47% oxygen what on earth will I do if something happens at home??" I signed the consent form and they hooked Zoe up to the ECMO machine. They assured me that it would be only for a day or so until they found out what the problem was and could fix it. The next day, Zoe went in for cath and they discovered that her right pulmonary artery had collapsed, so they put a stent in her artery to open it back up. This however, did not mean she could come off the machine. She ended up staying on for about a week or so because everytime they tried to unhook her, her oxygen levels would drop too low. Now, a bit of explanation - ECMO means "Extracorporeal membrane oxygenation" and what that means is that the machine pumps blood out of the body, oxygenates it, and pumps it back in. How does it do this? By the means of 2 cannulae (tubes) inserted into the main blood vessels in her neck. For a week, I got to look at my poor baby laying on her back, with a breathing tube down her throat and tubes coming out of her neck -stitched on so they wouldn't wiggle. It was awful. If I thought Zoe looked awful after surgery, it was even worse after that! We were lucky though, because other kids on that machine suffered awful things like strokes while they were on it, and we escaped with none of those. Eventually though, Zoe recovered enough to be unhooked, and the rest of her recovery went uneventfully, and we came home to Alaska in September - still with a feeding tube however, since all that time in the hospital had made it so Zoe had no idea how to eat. We had to teach her all from the beginning.

Zoe had her 2nd surgery in February of 2005, which was the Bi Directional Glenn. This procedure disconnected her Superior Vena Cava (the blood vessel that returns blood to the heart from the upper part of her body) and connected it directly to the pulmonary arteries. In stark contrast to her 1st surgery, Zoe flew through this one, and was out of the hospital completely in less than a week!

Zoe had her 3rd surgery this last March. This was the Fontan. In this surgery the Inferior Vena Cava (the blood vessel that returns blood to the heart from the lower part of her body) was disconnected and a shunt connected it directly to the pulmonary arteries. This also was an uneventful recovery. Timewise, she was in the hospital for about 2 weeks, but we had no setbacks in her recovery.

I am grateful today to have my little girl with me. I know that other children with similar defects are not so lucky and they don't make it. Tomorrow's post will deal more with the facts about heart defects.

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