Tuesday, November 22, 2005

Drew Update

I had my amniocentesis on 11/3. Drew did not like the procedure and freaked out! He started thrashing around and his heart rate spiked a little bit. It took him almost 2 weeks to calm back down. He was not harmed at all, didn't even come close to the needle, he just did not like the invasion of his space. The procedure itself was not that bad, just strange. The cramping afterwards was pretty bad but it stopped after about 24 hours and Drew let me know by his kicks that he was ok.

The results came back last week and they are "clean," meaning there are no chromosomal issues to worry about. That's good news--we are not dealing with some kind of syndrome (such as Trisonomy 18 or something) where the diaphragmatic hernia is a side effect. The main issue we are dealing with is the CDH. In other words, Drew's odds of survival remain at 50% and do not drop dramatically. Also, there is virtually no chance that this condition is genetic in our case, it's just one of those things that happens and no one knows exactly why. The hole in the diaphragm that every fetus has that closes between weeks 7 and 10 just did not close in Drew's case. There is no known cause and that's very hard to accept but there it is. Heart abnormalities are still a very real possiblity.

My OB care has been completely turned over to a perinatologist (high risk doctor). I really like and trust him. He will induce me at around 38 weeks (beginning of March) at OU Children's Hospital. I am being induced so that I do not go into labor in the middle of the night or something--the entire medical team needs to be on hand when Drew arrives. There is a very real chance that Drew will immediately be intubated and put on a ventilator after birth. Based on my previous pregnancy, we are going to try and avoid a c-section and, at this point, there is no reason to think this won't work. It will not put undue stress on Drew and will actually help his lungs as traveling down the birth canal squeezes fluid out of the lungs.

The lungs, oh the lungs. The problem is not the strength of his lungs, it's the amount of lung tissue and alveoli (sacs on the lung surface) that has had the chance to develop. That is something that just cannot be known until he's born. Ultrasound technology is amazing but it cannot pick up details on organs like the lungs.

We saw the peri today for another Level III ultrasound. I'm having them every 3-4 weeks now. Drew's stomach is 100% in his chest cavity and the heart is smashed/squished on the right side of his chest. Even though it's squished, it's functioning well. His heart rate has been ranging from 130-155 beats per minute. The liver is still located below the diaphragm and it's pretty important that it remain down there. There is probably some bowel up in the chest cavity too but again, it cannot be seen on US. He currently weighs 1 pound 8 ounces and is measuring a week ahead (I am 23 weeks, 5 days and he's measuring about 25 weeks).

We are meeting with a pediatric surgeon at OU Children's Hospital on the morning of December 19. That afternoon, I'll have another Level III US.

Right now, the feeling that Raymond and I have is that if we have to deal with CDH, we have the best case scenario. No one will come right out and say that (liability issues, I suppose) but Drew appears perfect in every other way. There is no build-up of fluid around any of his organs (i.e. brain, heart, spine, etc.). I just hate the uncertainty because so much cannot be known until he's born. His survival is up in the air and there are just no guarantees. As the doctor said, so much depends on the baby himself. He's seen it go either way--those he thought would be ok, passed away and those he just knew would not survive, are thriving.

At this point, I can say that Drew's temperament seems much different from Elizabeth's. He's much more laid back in utero than Elizabeth EVER was and the doctor assured me that this is not due to the CDH! (In case you don't know, Elizabeth is a very, um, spirited child--not bad, just a notch or two above the "normal" toddler.) We just cannot wait to meet him and are trying to remain optimistic.