Sunday, May 1, 2011

Ups and downs

Friday was a pretty tough day for me which is why I did not post an update. We spent all day Thursday inside the Cardinal Glennon Children's Hospital in St Louis. There were ultrasounds and meetings with this specialist and that coordinator, this doctor and that surgeon. By 6:30 pm I was mentally and emotionally drained. Then Friday, it was back to reality. Back to work. Back to dealing with all the emotions that come with this diagnosis for our baby girl that we are really just coming to terms with. I think I had some unrealistic expectations for what the outcome will be. I thought, "she'll have surgery on her back and she will be 'fixed' and she will be a regular little girl." And I had unrealistic expectations that the doctors would be able to tell us exactly what they could do for her and exactly how that will work. They can look at all the scans and all the tests and tell us the percentages for what they have done before. They can't say, "this is what is going to work for your baby." There are still so many unknowns.

We do know that we are the parents of a child with disabilities. The extent of which we will not know until she is here and maybe not for years to come. We are going to have to work on changing our expectations and hopes for this baby girl. We are not hopeless, we just have different hopes now. And I have to think of how different all this will be once she is here. Now she is just an image on a screen. But once we can hold her, see her little face and enjoy the simple joys and rewards of being parents I know things will feel differently. Now it is just so much uncertainty.

I have started to feel her kick on the outside now. And daddy got to feel a couple kicks Saturday morning for the first time. That was really cool! It was funny, Wednesday we had an MRI to get a good scan of our little nubbin. They gave me a pretty good dose of Xanax to relax both baby and me for the scan. Well, momma got pretty loopy, but as they rolled me into the machine to start the scan I could feel our baby girl just kicking away. Luckily, they still got the images they needed. I think they didn't give it quite enough time to make her sleepy, that and I am starting to think this little girl is quite stubborn. Later that afternoon we went back to the hotel for a pretty awesome nap for momma. Then Wednesday evening we went to Babies R Us to check out some gear that we might need for our wee one. Shopping for this stuff online is hard for me, it definitely helped to see the strollers and cribs in person. We closed down the store, but probably could have used another hour or so to check out everything!

Daddy is ready to get nubbin moving with some music. I have been spending some time the last couple days with headphones on my belly getting baby acquainted with Motown. Her senses are continuing to develop, mainly her sense of touch. In the ultrasound we could see her reaching around with her little hand, touching her face and even sucking her thumb. She is weighing in right at one pound now. And it appears she likes to sit breech when they are trying to get good pics of her back and booty. Dr Vlastos was able to push on mommy's tummy a bit and get her to scoot into a better position.

We still have a lot to learn and think about the possibility of prenatal surgery. Dr. Yang is pretty much an all-star in this field and our impression is that he is cool as a cucumber. He is interested in trying the procedure using laproscopic techniques that have not really been done before. Exciting and scary at the same time. Dr. Eicholtz is the neurosurgeon who will repair nubbin's back whether we decide on pre or postnatal surgery. He much more like an engineer, pretty dry and straight-forward. And although we didn't see him with his shirt off, it appears that his man-muff could rival Ron's. Dr. Vlastos is the "baby guy." He specializes in fetal care and is very warm and caring. He even recommended a book of meditations that he said might help us deal with all the stress and anxiety. Everyone we met at the Fetal Care Institute was really amazing. Cardinal Glennon is a nice hospital. We met with a neonatologist who told us all about the NICU where our little girl will be spending some time. I was glad to hear that they have private NICU rooms and one or both of us will be able to stay with her 24/7. I know with my sisters, who each had a preemie, going home and leaving their babies at the hospital was one of the most difficult things they had to do.

What are the next steps? We are going in to meet with Dr Martin on Monday, on her day off, to talk about everything. She has spoken with Dr Yang and gotten the results and info about what we talked about. If we are interested in pursuing the prenatal surgery we need to have an amniocentesis as the last "piece of the puzzle" to give the docs all the info they need. The window is closing on that option and if we do the surgery it needs to be done before 26 weeks...within four weeks. Oh yeah, and Ron is trying to study, write and finish up law school during all this too. His last graduation ceremony ever is in two weeks!

So this is a really long post and kind of jumps around a lot. It's kind of a stream of consciousness thing as I process all my thoughts and try to share them with you.
Thank you all so much for your continued thoughts and prayers.

1 comment:

  1. Carmen, thank you so much for the update. Thought about you two all weekend. Whatever decision you guys make, it will be the right one. Glad to hear the doctors are all so wonderful. Im sure it makes this whole process a bit easier to swallow. Love you both!