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.


Anonymous said...

Well, as scary as all of this is, it sounds like they are pretty familiar with your situation and will be able to take good care of Claire. I'm going to take it as good news. I know I'm a long way away but if there is anything I can do for you guys let me know.


Anonymous said...

Cindy & James,

I just want you to know that Claire is on the prayer list at Parkview and the staff at Central is also praying for her (you and James as well).

I know this is such a difficult time and about all most of us can do is pray and let you know that we are there for you. I have faith that Miss Claire will be just fine.

I can't wait to see the new pictures of her.

Myra Phillips

carole said...

I'm so glad that you guys feel comfortable with the NICU. I know that will bring you peace in these months ahead.

Praying for you both and baby Claire.

joy said...

uab is a great place. it's really nice that you got to tour and get familiar with the surgeons and procedures so you'll know what to expect. i love your tummy pic in the photo gallery!


Anonymous said...

It sounds like baby claire is going to be well taken care of and I know that has to be some comfort to you both. My prayers continue daily.

May God continue to bless you,

Linda Faust

Vikki said...

I work at TCH as well as UAB and you will be very happy at both places. Dr. Saito and the other surgeons here at TCH are very good. Let me know if you need anything once you are here.

Lauren said...

I am so glad that you feel comfortable with the hospital and staff. It sounds like you are in good hands. A positive attitude will go a long way in ensuring that Claire is the toughest little fighter that she can be. I will pray for the other CDH babies that you saw as well.

Love Lauren
Avery's Mommy