We have been anxious and excited to meet with the NICU coordinator, our neurosurgeon, and tour the facilities. It was an enormous relief to see how well organized and coordinated all of the people involved in Baby Jake's care are already! They all meet once a week to discuss upcoming arrivals, and all of the babies info is kept in a binder until the big day. That way, when we come in, all of our history is immediately available, along with all of the doctors that need to be contacted. The NICU coordinator was extremely helpful, and was able to answer most of our general questions. She took us to see the operating rooms on L&D and told us to request a latex free OR due to the fact that babies with underdeveloped neurological systems can have latex allergies. The rooms are pretty small, and I am not sure how all of the people that are supposed to be in attendance will squeeze in, but I am sure they will manange. She told us if Jake is healthy and breathing clearly when he is born, they will let Dave bring him to see me before they take him to NICU, which I was VERY excited to hear. They said they could also roll him out for a minute for our family to see him and take a few pictures. As soon as they finish with me, and I spend the alloted amount of time in the recovery room (about an hour) then they will wheel me down to see him! She told Dave that this is the time he needs to switch from "hospital mode" to "daddy mode". (I have my doubts, but Dave is very excited for the chance to prove me wrong! :) ) After he is stable, they will perform an ultrasound of his brain to assess the ventricle size, shunt placement, and decide when is the best time for surgery.
As of our last appointment this week, Jake is doing well and is averaging about six pounds. We ask how big his ventricles are at every appointment, and as of lately, our doctors are reluctant to give us an answer. Because he is head down, it is difficult to get a picture that would not be at a slanted angle (making it very difficult to measure accurately). We also know that because his skull is not fused like an adults, there is no way to judge whether or not the vent size is indicative of increased pressure. So, right now, we are just feeling very thankful that he is doing so well, gaining weight, and presenting on target in every other area. The amnio we had a few weeks ago is the last of the genetic tests that we can perform before he is born and will better help us to decide what he will need in the future. We are testing to see if his condition is x-linked. This is not a common test done in utero, and they had to send the fluid to Emory to have it done, therefore, we will be waiting a few more weeks for the results. We are praying that it is not x-linked, as this would mean a better outcome for Jake, as well as more future treatment options.
We want to thank everyone for your continued prayers and support, as well as your cards and emails. We feel very comforted by all of the people that God has put in our lives as well as Baby Jake's. We were reassured by our visit to the NICU, our meetings with various doctors, and your support. We know that without God, no amount of knowledge or support would bring us comfort right now. So, as much as we want to thank you and our doctors, we also want to make sure that we are giving God all the glory for what he already has done, and is continuing to do in our lives, as well as Baby Jakes.
"Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort. Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we are comforted of God." -2 Corinthians :3-4
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