would like someone to talk to

beckymason1988

im lookin for any moms or families that have had children born with gastroschisis or any nurses or doctors who r familiar with it.

our daughter has it and Im new at this and just wanna tak to someone who will get it

beckymason1988

she had her primary closure the day sfter she was born

gutsymama

I'm sorry you're dealing with this! My son was born with gastroschisis in May so I absolutely know what you're going through. What can I help you with? 

beckymason1988

im so sorry ur lil guy has to have it too.how r things goin with him?

I just feel like no one else understands how hard it all is because unless ur kid has it u have no idea.

I feel like we were doin so well and things were supposed to get easier but they r still so hard all the time

when do we get a break

gutsymama

@beckymason1988 - I'm sorry it took me a little while to reply, and I wanted to make sure you saw this. 

We're doing ok, but this whole thing has been really, really, really hard. He's 3 months old and we're still in the hospital. He's got his 3rd surgery coming up in 9 days, which will hopefully reconnect his intestines so we can start feeding him once it heals; he's been on 100% IV nutrition since he was born, but he's growing really well and his liver is handling it like a champ. And he doesn't have any other issues, so that helps a lot, even though this one issue is a really big one. In between surgeries he's really happy most of the time, and we've been getting lots of smiles! 

I think the hardest part for us is all the unknown. We don't know for sure what the outcomes of his surgeries will be. We don't know whether his intestines will be functional once he's all hooked up, or if they are, how long it will take before he can eat and digest normally. We don't have any idea how long it will be before we can go home, or whether we'll be going home with an IV or not. 

At the beginning of this, I thought we would have our time in the NICU and then when we went home he would be fixed and we could put it behind us. But I'm realizing more and more that this is going to drag on, and we can't know how long, and it might not have a clear ending point. 

I also really hate it that people don't know how to talk about a sick baby, and they just want us to tell them that he's going to be fine and we're going home soon, but we can't say that for sure. And I hate it that most people just think of him as a sick baby, and feel sorry for us, when actually we have a really awesome kid and we feel absolutely blessed, we just hate it that he has to deal with all this. 

How's your daughter doing? What in particular are you struggling with? I wish I had something to say to make it better, but I'm in the middle of struggling with the same things and I don't know how to fix it. Hopefully that can help a little bit, thought, to know that some other people do understand. I think it helps sometimes to remember the things you love about your baby - when I'm not at the hospital I keep a picture of Luke smiling with me, because it makes me really really happy to see that smile. What are some of your favorite things about your daughter? 

gutsymama

Also, feel free to PM me or page me on the July 2013 board if you want (I was due in July)