Sunday, January 18, 2015

Day 45 Update

Sam is still making very slow progress, even with an unnecessary bump in the road this week. A general peds surgeon who didn't do Sam's GI surgery visited with us yesterday and said it's going to take longer for Sam to heal than a baby with a normally functioning heart. Also, Sam has been on methadone for a week, and it inhibits gut motility. 

I'm just going to sprinkle pictures throughout. 

This has been a really really hard week for me. Stephen went back to work Monday. I cannot express how incredibly thankful I am to Stephen's boss for telling him to take the amount of time off that he has. The five weeks Stephen was up here with us is the longest amount of time he and I have ever spent together. I didn't realize how much I depended on Stephen to carry me through all of this until he was gone. Also, I'm just lonely. Sam and I are rarely alone in his room, what with all of the nurses and doctors in and out, but being here is very isolating. 

I was looking at Sam one day this week when it just hit me how sick he looks. He has his OHS scar, the incision from his GI surgery, stoma, colostomy bag, NG tube, broviac line, plus all the uninvasive lines that monitor his stats. He just looks like a sick baby. Well, he looks great, actually. His eyes are perky, his color is great, he smiles and coos, and he has been pretty content this week. But he has a lot of stuff that shows where he has been and what he's recovering from right now.   And then Thursday happened.  Sam stopped breathing as a result of an incorrect methadone dose. The medical team revived him pretty quickly, but it was just an incredibly stressful afternoon because they didn't know immediately why he wasn't breathing, and then afterward I was worried.  We're doing a lot of waiting, and it's just hard. Sam is calling all the shots here. We're waiting for his body to be ready to process feeds normally again. 

Hopefully, we'll get to go home for a few weeks, but then we'll be back for Sam to have the stoma reversed. He'll have to recover from that, so who knows how long it will be before we're home for good for a while. I have never been a highly anxious person, but I'm feeling it these days. I feel guilty no matter where I am because I'm never with all of my children, where I'm supposed to be. I know that soon I'll be sitting in the waiting room while Sam is in surgery again. My mama heart is weary. There isn't anything that anyone can say right now that makes me feel any better. I just want Sam to be better and for the five of us to be together again. 

We had lunch today and visited with some friends of ours whose baby was born at at 26 weeks. While their journey is much different than ours, we were all able to just kind of air out our frustrations about what a crappy place this is to be in as a parent.  It's nice to talk to families who can relate. 

Stephen and I have been talking about trying to find the silver lining in all of this. One thing that's really pretty nice is that Sam is usually pretty easily calmed, and I have plenty of time with no other obligations to sit and rock him and hold him while he sleeps. 
When the girls were babies, I never felt like holding them while they slept was a good use of my time because there was so much else I needed to be doing. 

I want to blog more regularly, but I also don't want to share a lot of what is going on. I don't like the spotlight or pity, but I know that comes with our situation. Also, there are lots of days when I don't share anything on Facebook because either not much has happened or I just don't want to. Sometimes it's just hard to put into words what Sam is going through. 

But he's cute. 

1 comment:

  1. Danielle, you have said it all so well. There is nothing to add except that many are sending thoughts and prayers to you all. And you are right, he is really cute!

    Joyce Gholson