The Good, The Bad & The Ugly

The Good:
So the good news from yesterday is that we get to deliver the baby in Des Moines. I’m so excited by this news, it means the boys can stay in school and I won’t have to worry about them the way I would have if we’d been in Iowa City, and I’ll be able to be at home with them each evening. The baby will probably not do great after delivery and they’re expecting him to need to stay in the hospital for about one to two weeks afterwards. The main concern is feeding. Children with heart defects do not eat well, it takes a lot of energy to eat, and they just don’t have it. If he doesn’t do well he might have to go home with a nose tube for feeding, especially if they don’t want him to use up the calories it takes to breast/bottle feed.
We’re also hoping to let him get about 4-6 months old before needing surgery, which will be nice because it will be in the summer then and more convenient with the older boys to go out to Iowa City for a few weeks.
We got a tour of the hospital, it is really nice and their pediatric center is amazingly staffed with places to stay and totally family oriented. I was even informed that they have specialty nurses primarily for the entertainment of the children, to do activities with them. The nurse coordinator told me that they would take my older boys and do activities with them and keep them busy throughout the day so that I could be with the baby. And each room is equipped with dvds, movies, and playstations. Tom was excited about the playstation, but if I had to sit in a hospital room with him playing Steve Madden Football, I think I’d eventually kill him.

The Bad:
His heart condition is more than just the atrial and ventricular septum defect. The official title is Atrioventricular Septal Defect. So besides those two holes, the atrial hole is so big that it spans down into the ventricular hole causing one large atrioventricular valve to exist rather than two separate valves. This causes the oxygenated and un-oxygenated blood to mix together freely, there is no separation in the chambers of the heart, and everything is free flowing, the two valves that flow into the right side, and the three that flow into the left side are swinging all over the place.
Here is a normal heart:
Here is what my baby’s heart looks like:
When he is born the right side of his heart and his lungs will receive too much blood, and the body won’t receive enough oxygenated blood. Plus the one large AV valve might not work well and may allow blood to reenter the top chambers, which we won’t be able to see until he’s born. He will be on a lot of heart medication to keep the strain off his body and heart for as long as possible for him to get older before the surgery. He will most likely stay weak and small until the condition is fixed.
Here is a picture of the surgical procedure: (Sorry about the pics, they should have red in them so you can tell the difference between the oxygenated & un-oxygenated blood flow in the heart, but the printer ran out of ink at the hospital, so these are the pics I got, and I couldn't find ones of this condition on the Internet, probably just didn't look hard enough!)
What they will do is separate the top two chambers of the heart and the bottom two chambers, and make two functioning valves out of the one large atrioventricular valve. This will have to be done with open heart surgery while he’s on bypass. It’s a scary thought to think that they’ll be stopping his heart completely.
Now if he starts going into heart failure a lot earlier and they don’t want to perform the surgery on a newborn, they can do a temporary fix where they put a pulmonary artery band to restrict the extra blood flow to the lungs until open heart surgery could be done when he’s bigger and stronger. This procedure is done with a small incision in the side, and the band is taken off during the later surgery.

The Ugly:
The hospitals, the wires, the medicine, the stress of a sick child…I sometimes wonder if I’m strong enough to do this. I know I won’t sleep for a long time, and I hope I can stay semi sane for Talin and Collin throughout this whole process. And I’m just scared. I’m extremely blessed and feel such gratitude that we have modern medicine that can just about fix anything, but it’s still scary. I don’t want my baby to suffer, to feel pain or fear when he’s so young, I can’t stand the thought of all he’ll endure, and I wish I could take it on myself so he didn’t have to suffer through any of it. But I also have a lot of faith that the Lord will be by his side doing just that.
I just wish it wasn’t so complicated now. The ASD was easily fixable, not such stress, but the added in problems are scary, there is too much that can go wrong. I have to have too much faith in the surgeon to fix it properly the first time and hopefully the only time. I also realize that I can’t focus on all the if’s and I have to be grateful and upbeat about all the positive things. If nothing else it will make our little family stronger, right?

And just a quick thanks to everyone who has commented, emailed, called me with well wishing, prayers and thoughts, it’s more than I deserve. I have such a great support system I really don’t know what I would do without family, even though everyone is thousands of miles away!