In less than three hours Gage will be one week old. Boy has it been one heck of a week.
I posted and update on the CaringBridge site. Gage has a lot of things going on right now... stomach, lungs, heart and of course the brain bleeds. So much of it is "common" for such a premature baby, but boy it feels like he's bound and determined to have every "common" thing go wrong. I'm probably not the first NICU mom to feel like that but some day's, like today when we found out about his heart, it's pretty overwhelming.
I try to celebrate the good things that happen- but on days like today it doesn't seem like there is much positive going on.... well the fact that he's still with us is positive but if asked how he is doing I can't bring myself to say good. Chris can, but I'm more of a- he's okay. His oxygen levels keep dipping way down and now he's on a medication that could help his heart but could make other things worse. How can I say he's doing "good." He's hanging in there. I'm thanking God for every minute we have with him. I hope that someday the NICU will just be a memory and I'll be watching my two boys playing happily together. But I know there isn't a guarantee and my mantra has just been, Thy will be done. I just have to keep saying that to remind myself that it's so out of my hands and I just need to trust in God that one way or another Gage will get better- it just might not be here on earth. Don't get me wrong- I still have such hope for him. He seems to be a fighter and there is always hope, because all things are possible with God.
On a separate topic- I'm so easily irritated and so irrationally emotional with some things it is crazy. I'm easily irritated by people hanging around. I know everyone just wants to be supportive, but when I'm going through something like this I dislike having people hover. Always asking, "how are you" and such. I love that everyone wants to visit Gage, but I'd really like them to come see him for a little bit and then go home. I don't need them sitting up here with us for hours. I find myself getting easily irritated by well meant comments and questions. Like my mother in law saying, "Oh he seems to recognize Chris' voice, do you think he recognizes yours?" I'm his mother, he heard me talking everyday, every time I talked, yes I think he recognizes my voice. Or both my mother in law and sister in law asking how much breast milk I'm pumping. Or my mother in law asking "How is our baby today?" He's MY baby- he's your GRAND baby but not YOUR baby!
I also have not been able to bring myself to make a list of people who can go visit Gage without us having to be with. I just can't do it. As I confessed this very irrational emotion to Chris today (and he was very supportive of me even though he doesn't feel the same way) I realized part of my issue with it is that I don't want to hear things about what Gage does when we aren't there from anyone but his nurses. I don't want someone to say, "oh his ___ kept dropping" or "they turned his oxygen up/down" or anything like that. Or tell me that my son is doing good or not good. I know the nurses won't give information out on him to others, but it's not hard to observe things like desats or when an RT or nurse turns up oxygen. It's kind of like how I don't want anyone to tell me if Hunter is walking or saying real words- I'd rather think those first things are happening right in front of me for the first time. I think another part of it is if something really bad happens, I don't want to have someone else there potentially witnessing his last heartbeat or breath or something like that if it happened really suddenly. I guess I just feel very possessive of Gage.
**sigh** I write all this with a heavy heart because I feel so ungrateful and like a mean terrible person. I just had to get it out. I was able to share how I felt with Chris today and he took it well. It seems like I have a problem with his family only, but really that's just because my family isn't here. If they were I would feel the same way about them hovering, although I think that my grandma would be the only one who would. I've been trying to pray about it and tried to just remind myself to relax but so far I've not been able to shake any of the above feelings.
So that's where I am on Gage's one week birthday. Overwhelmed, scared, frustrated, irritable, tightly wound... Just breath deeply and pray right?