We are here at MCH. We have been here for almost 3 weeks now. We have decided that everything takes a little bit longer than expected when you have a baby with special needs. Therefore we have stopped putting time expectations on things like going home. We have had several goal dates that have come and gone and we are still living out of a NICU. Everytime our goal date passes we are so disappointed. We have decided just to take one day at a time and go on the timeline of what Teryn needs.
As soon as we got here things were already in motion to complete the tests that were ordered. After 3 weeks here is what we know:
Cardiovascular: Teryn had a tiny pinhole when she was born. We were told it was fairly common and that it would close on it own. It has!!!!! Resolved.
Neurolgy: An MRI was done. As we know she has hydrocephalus. What we found out about her corpus callosum is that it is dysplatic, or thin. Again there is no way to know if there will be any implications on her development from this. We will continue therapy when she gets home to be sure she has every advantage possible.
Craniofacial/Plastics: Her palate will be scheduled for repair sometime around one year of age. Everyone agrees that her small jaw is very mild and does not need any type of surgical procedure. This is barely noticeable and will grow out over time.
Genetics: A more comprehensive scan off all chromosomes is normal. No abnormalities.
ENT: Teryn will probably need to have tubes placed in her ears in the future since babies with clefts tend to have a lot of fluid build up. It will more than likely be paired with another surgery such as her palate repair in the future.
Gastrointestinal: When Teryn arrived an ND tube (tube from her nose into the duodenum - bypassing her stomach) was placed for feedings. She is currently on full feeds for her weight. She is handling feeds this way fairly well. Meds for reflux were changed - maybe it will make a difference. A possible modification will be made to her gtube.
Apnea: This has been mostly better lately. Any desats she has had recently have not needed stimulation. She has been correcting it on her own.
Opthamology: She had another eye exam here. There was concern because her left eye tend to turn in occasionally. Everything looks good right now and she will have a follow up in several months. Structurally everything is great.
Audiology: Teryn passed her hearing test in both ears with flying colors.
This is just the brief summary. I will continue to update along the way.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment