Tuesday, March 13, 2007

24-Week Ultrasound

We went back to The Kirklin Clinic today for another high-res ultrasound. We saw a different doctor than last month and he was really nice. He said that he has seen several CDH babies and that Claire's hernia doesn't appear to be a severe case, that it is more in the middle range. Her heart looks good, her organs haven't shifted around any since last month, her liver is still down, and he saw some lung tissue. She is just the size she should be. He said that girl babies seem to do better with this than boys because they are little fighters. If she inherits mine or James' stubbornness then I know she'll be a fighter.

The doctor we saw last month said they would probably induce me a few weeks early, but this doctor said if there were no problems they would let me go into labor on my own as long as I don't go over 41 weeks. He said Claire would be at UAB Hospital for only a few hours before being transferred to Children's, and that I can go over and see her as soon as I'm up and around.

I don't have another ultrasound appointment until May, so there won't be much to report for a while. Here is a picture of her face from the ultrasound this morning. She was moving a lot and it's hard to tell what you are looking at (we had to ask them to point it out to us). I drew an outline to make it a bit easier to see.


Thursday, March 8, 2007

Meeting with Surgeon

Today we met with Dr. S at Children's Hospital in Birmingham. She said they see around 15 CDH babies there per year, and that she and her four partners all have experience treating them. The surgeon we get depends on which one of them is on call at the time I deliver. James talked to one of the nurses afterward and she had good things to say about all five of the surgeons.

Dr. S said Claire will be born at UAB Hospital and stabilized in the NICU there, then transported to the NICU at Children's (a few blocks away). She will most likely need to be put on a ventilator as soon as she is born. Worst case she will need to be put on an ECMO (heart/lung bypass) machine. Children's Hospital has 5 ECMO machines, and one is always reserved as a backup.

After she is stable (at least 3 or 4 days, maybe longer) they will do the surgery. They will wean her off the ventilator as she can tolerate it (may take awhile). She will be fed intravenously until after the surgery and her intestines start working, then will have a feeding tube, then they will try bottle-feeding. She said the shortest hospital stay we can expect is 3 weeks (that's the absolute best case), but that the average is 2 months.

She couldn't really give us any specifics as to how severe Claire's condition was. So far the liver is down and her heart looks okay, but things can change between now and June, and they will continue to monitor her with ultrasounds. She said it is hard to predict how a CDH baby is going to do until they get here because there are so many factors involved.

We toured the NICU and there were two other CDH babies there. One was a 3-day old girl who had surgery this morning and was no longer on a ventilator. The second was a boy who has been there since November. He had been on ECMO and is still on a ventilator.

The sicker babies are assigned their very own nurse. The babies who are doing better share a nurse with another baby. There were 26 babies in there today and nurses everywhere. The NICU is open from 9am - 2pm, 5pm - 10pm, and midnight - 6am. Only two people may be at the baby's bedside at one time.

Everyone we talked to was really nice and answered all of our questions. We both feel very confident now in their ability to take good care of Claire there.

Tuesday, March 6, 2007

Amnio Results

The amniocentesis results FINALLY came back today and everything is normal! They said the composition of the chromosomes is 46XX, which means the baby is definitely a girl and has 46 chromosomes like she is supposed to. James and I are both very relieved. We had read that CDH is often associated with chromosomal abnormalities, so at least now we know that is not the case with our baby.

Friday, March 2, 2007

Still No News

A lot of people have asked if there has been anymore news since our last OB appointment. We still haven't gotten the amnio results back; they are now saying 3-4 weeks and it has been almost 3. For the past few weeks we have just been waiting, reading everything we can about CDH, and talking to other parents who have already been through this. Sorry for the lack of posts -- there just hasn't been anything new to report so far.

Our meeting with the pediatric surgeon at Children's Hospital is on Thursday. We should get a lot more information then about the severity of Claire's condition, the plan for delivering her, and the surgery. I will let everyone know how that appointment goes.

We also have an appointment with the high-risk OB the following Tuesday, and should definitely get the amnio results then, if not sooner. They will probably do another ultrasound, so we will get to see more pictures of little miss Claire. She has been wiggling around a lot lately and I am getting bigger.

For those who are interested, I added an email subscription feature to this blog (see the menu on the right). If you sign up you will receive an email notification whenever a new post is added.

Thanks so much to everyone who has posted comments on here or has called or emailed us. Your kind words and prayers mean a LOT.