It's the simple things

It's something so simple. Something innate in every woman, every mother. When your baby is upset, you pick him up and you comfort him; Hold him against your skin and speak soothing words--This is what gets to me sometimes.
Skyler has done really well but the last couple days have been pretty rough for him. They told us there would be ups and downs but I was naive about what the "downs" were. Skyler has been doing so well that I thought a down day was him having high sodium levels or not peeing very well. But the 27th was an actual down day. The PDA or opening in his heart began to affect him more. He had fluid in his lungs making it difficult for him to breath. They think he might have pneumonia so they started him on antibiotics.They also started him on medicine for his PDA. He also had to have an LP--kind of like a spinal tap and get some more lines and IVS in his body. Poor guy had two IVs just in his head. Plus the nurse practitioner told us she made a mistake and he wasn't releasing his carbon dioxide like he should. I could go on with how the medicine made him extremely puffy and other things that were affecting him but I'm sure you get the idea.
I could just see the pain and discomfort on his poor little face as he squirmed. And that's all I could do--just watch. I watched for hours and bugged the nurse about things that could help him. The only good that did was annoy the nurse.
How I wished I could do something so simple. Just hold him and comfort him. But holding him would only bother him more, what with the ventilator and all the cords and monitors attached to him. But I still wished it was in my power to comfort him. That I could take away his pain and discomfort.
Those rough days really took a toll on me. I guess everything has. See, that's how I know I have been given strength beyond my own. Some of you have been saying how strong I've been. But truth is, it's a strength that's not my own and I can't take credit for it. But even with that strength, during those rough days, I worried about him so much that I felt light headed. Like I was going to pass out by his incubator. Thinking of him feeling pain literally makes me ill.


Skyler with one eye open and his tongue sticking out. He's the cutest. Even with two IVs in his head and the arterial line in his hand, poor guy. This was before he got all puffy.

We came home from seeing Skyler that day and I got mad at Chris for something. Then while I am getting on to him, I just crumple on the floor and cry. I say, "I can't help him. And the nurse practitioner just laughs and says she made a mistake. It's her job but for him it's life and death..." Chris holds me and I tell him how I just wish I could comfort him.
So I guess I write this to say that I'm not always great at this. I'm not always on top of things. I want to be real and not earn praise that isn't really mine to earn.
We went to the temple the next day and it really helped. The thought came to me to enjoy it. I think to enjoy the journey, not just want it to be over. Not that I can enjoy him being in pain or sick, but I can enjoy seeing him grow every day and do the little things. Like a couple of days ago he opened his eyes for the first time. And the other day I watched him suck on his teeny tiny thumb. It was the most precious thing I had ever seen.
Chris is better at enjoying the moment than I am. Before that prompting I just thought he was plumb in denial about the whole thing--being happy at Skyler's bedside all the time. But maybe he understood something I didn't very well all along.
Today Skyler had a really good day. His oxygen levels were in a good range and he didn't have as much fluid in his lungs. They put him on his stomach for a while and he loves that. Yay :) They put another picc line in him, or a deep IV, so they don't have to prick him as often and can take out some of the other IVs. The nurse told us it was the fastest picc placement she had ever seen and that it went really well. I love hearing that because it means he wasn't in a lot of pain, and it can save him some pokes in the future. Just another blessing and answer to our prayers. He's such a little (big) miracle
Tomorrow we will find out if the medicine closed the PDA in his heart. I'll keep you posted.