I wouldn't say that Gaines is having a bad day today but I certainly don't think it's one of his best. This oxygen business is still really weighing on my heart. I feel silly for being a little down about Gaines' lack of progress after my last two posts about how far he has come. He has come a long way and I am SO thankful for that but he still has a long way to go. His oxygen requirement has crept back up again and is around 40%. It looks like the nose piece issue that his nurse told me about isn't the problem as they found a way to fix it and it didn't really help. Also, he got a blood transfusion yesterday that we hoped would help with the oxygen and it hasn't so I'm a little discouraged. I just want my baby to be well. I want to take him home and be a family with him. My heart aches for this as I am just so tired.
I'm tired of walking in that hospital every day...several times a day. I'm tired of sitting in a hospital by my baby's bed and watching numbers and hoping they get better. I'm tired of walking to his bed so hopeful that they will be improving just to be let down. I want so badly to be in my home with Beau, my two boys and Jack. I want to cook dinner for my family, give my babies baths and just be normal. I'm sorry...I've just been homesick for several days now but I've been trying to focus on the positive and honestly I'm just tired of that too. I know that I have so much to be thankful for...I mean I really do...Like I said, I just want my baby to be well.
I had a long talk with the doctor last night about several things. I asked what would be done next if his oxygen requirement kept going up. He said that they'd probably repeat the heart echo at some point to see if that would give them any insight. They aren't doing it right now because he and the attending doctors all believe that Gaines just has bad lungs (my words not theirs...I have to sort of summarize and repeat back to them what I think they've told me to be sure I understand). By that I mean that he not only has the problems associated with being born at 29 weeks, but he also has underdeveloped lungs because of my water breaking so early. I pray that there are no outlying issues and that his lungs start improving these next two weeks.
If you remember, if he still needs oxygen at 36 weeks, he will be diagnosed with Chronic Lung Disease. This is something that he will eventually grow out of but will leave him with decreased lung capacity. I just really want to avoid this if at all possible. PLEASE, pray with me for Gaines' lungs and everything else.
He's still growing...he gained 65 grams last night and is now officially 4 lbs. Such a big gain is probably due to him getting blood yesterday but I think part of it is actual weight.
I guess that's about it for now. Please continue to keep Gaines and our family in your prayers.
Love to all,