I am the cutest baby ever, even if my outfit is SUPER DORKY!!!! lol...Little Dinky is doing ok... he is up to 3ml on his feeds and still loves getting those 2 precious bottles each day! We met our new doctor and he seems nice and very educated which is always a positive factor! After our little 'episode' with the NNP the other night we had a nice thorough meeting and voiced our concerns... he was very receptive and now emails us after rounds each day just to give us updates.. that is sooo nice to have!
One big huge shocking setback is that Lincoln's ROP (preemie eye issue) progressed and is now stage 3 zone 3. This is not good.. what is most shocking is that this is almost unheard of in a baby of his age... he is 47 weeks gestation and should not be facing this issue... but that's our luck! They cannot do anything at this time other than perform weekly eye exams to see if it worsens or goes away.. the odds are that it will go away but you KNOW how crappy our ODDS are!!!!!! What I understand is that even if it does worsen that they can perform laser surgery or other forms of intervention to repair the damage. He will likely have vision issues such as needing glasses etc.... but that is typical for all preemies.
We also learned that they are planning on transferring Lincoln to a permanent room in the "G-Unit' in October. This unit specializes in babies with short gut syndrome such as Lincoln. They will be able to focus more on Lincoln's feeding issues and nutrition so that is a good thing. The feeding issues are the major concern for Lincoln at this time... I know there are children in that hospital that are 4 years old and have NEVER left the hospital... I asked if that could be Lincoln's fate and they said they 'sure hope not'.... grrrrrrrrrrrrrrrrrrr!!!!!!!!!!!! I cannot possibly imagine having a child in that hospital for years... sooo unfair and sad. Having said this, once Lincoln is moved to this room he will be in a room all alone and will have a nurse that will also be caring for several other kids so he will be seriously lacking in attention and stimulation. For all my friends and family that would like to spend time with him, you are more than welcome. It kills us to imagine that precious sweet boy lying in a little room alone all day... it makes us sick... if we can somehow work it out financially I will quit working and be with him all day each day, instead of just evenings and weekends, but that is not a very likely scenario at this time.
He is cooing now and grabbing his toys... soooo adorable!!!! I promised him I would buy him more cd's, I'm pretty sure the 2 he has are getting pretty old!
Greg is sooo busy with athletic events that he is busy handling volleyball games or football games and can't be there to see Linc as much as he wants to be... this is sooo hard on him and on me as I make the long drive down there alone... but we are doing the best we can in this situation... it's awful and heartbreaking but unfortunately it is our reality...
Kiss and hug your healthy, happy families and thank God for them each day... Every smile Lincoln gives us and every time we see him renews our faith that he will be home with us someday a happy, giggling, mischevious little boy!
Lora,
ReplyDeleteI would love to start going down on Wednesdays with you to see Linc, please let me know when you leave and I can come to the house or you can pick me up. That way your drive will not be alone, I worry about you after a ruff day, in the evenings and when the weather turns, ok well I worry everyday! At least this way I can give you some company. If you need help mowing the lawn, picking up Cole, making dinner please ask. I am sure your friends and family are willing to help!!!!
Christy
He is very cute! So sorry to hear that his ROP has progressed, but I know of worse cases that have improved a great deal. Hang in there.
ReplyDeleteIf you haven't already, you might want to visit the March of Dimes online community for parents of preemies called Share Your Story. You can chat with other parents who are or have gone through what you are experiencing with Linc. It helps a lot to share your experiences, fears, suggestions. Here's the link: http://www.shareyourstory.org/
Best wishes to you and your little family.