Visit to the NICU

We visited the neonatal ICU on Sunday afternoon. We talked with the neonatologist for a while and then took a tour of the NICU. The neonatologist was very honest with us about what to expect. She's been a neonatologist for over 30 years and she has only seen one triploid baby. That's how rare it is for them to survive to term. She reminded us that Elam still may not survive to be born alive. I have been very aware of this-- it's something I've thought of every day for the last 3 months. It seems that every doctor we meet (except my regular OB) wants to make sure we fully understand the seriousness of Elam's diagnosis, and so they are not hopeful or encouraging at all. But I know that the doctors are trying to be helpful and make sure we have realistic expectations.

So it was hard to talk to the neonatologist because her outlook seems so negative. She told us that because his condition is lethal, they usually try not to intervene medically. I told her that I do want the doctors and nurses to do what they can to keep him alive so we can spend time with him. She told us that they will probably not be able to intubate him because his mouth will probably be too small. So we'll just have to see how much he can handle when he's born. It's been hard for me because it seems like everyone, especially the doctors, aren't wanting to help him at all, but I do. I don't necessarily want him to be kept alive like a vegetable, but I do think we should help him if he's fighting to live. I think the doctors and nurses at the NICU will eventually do whatever we want, but I think we just might have to fight for it.

The doctor also told us that we should seriously reconsider having a c-section. Recently, I had finally come to the decision that that's what I wanted to do. It has been a hard decision-- I know there are risks and scars, and recovery is a lot longer. But it looks like Elam will still be breech and regardless of his position, a vaginal delivery could be too stressful and kill him. The neonatologist told us that there are a lot of risks for me and our future children if I have a c-section. She really thought that a c-section would be a bad idea, even if Elam is still breech. This was also discouraging for me. I think she was just very opinionated, like many people are, about how birth should be. I'll ask my regular OB if she thinks I should reconsider, but otherwise, I think I'm going to stick with my decision.

She did tell us about some things that were helpful and encouraging. They will be assigning us a nurse just for Elam while I'm recovering in the hospital. She'll be at our beck and call 24-7. In cases like Elam's, they will keep him with us, as opposed to in the NICU, as much as we like. They like to help the families enjoy their babies while they have them, and they try to help you preserve their memories. They have a photo studio so you can take nice pictures and they provide belongings for them to keep.

We took the tour of the NICU. They have recently remodeled and redesigned their facilities. They are very nice! They have a room we can stay in during the day to visit him if he is still there after I am discharged from the hospital. The doctor showed us a baby that was a little over 2 pounds so we could know what to expect, as far as Elam's size. The baby was so precious! It was comforting to see her. She just looked like a miniature newborn. So sweet and so tiny!

While we were at the hospital, we went to labor and delivery to preregister for admission. We also filled out Elam's birth certificate information. It was nice to get that stuff done! We'll go back pretty soon for a tour of labor and delivery.

So, overall, the experience was somewhat helpful. Talking with the neonatologist was discouraging, but the tour was nice. Seeing the tiny baby was definitely the highlight of the experience for me! We just have a lot of difficult decisions ahead of us if Elam is born alive, but I think it's worth it if we get to spend some time with him.

I have an appointment with my OB on Monday and an ultrasound on Thursday next week. Please continue to pray for Elam. We know that God can do whatever He wants with Elam's life. While I know that the most likely outcome is that God takes our little one before he is born, I also know that a miracle is not out of the question! Our trust is not in doctors, statistics, or ultrasounds, but in the Lord.