December 23rd 2009, I wake up super early and call the ICCU right away. His night was fine he's doing as expected so far. Ok we will be over soon. I get up get dressed and I'm ready to head over right away. I expect to spend my days at his bedside that's what you do when your kid is in the hospital right? Well We eat and head over. He's more puffy that he was the night before and there are still a lot of people around him always busy.
There are two ecmo specialists one is training and there is a nurse and a respiratory therapist that comes in once an hour. There are fellows, his cardiologist and the main doctor on the floor. They let us sit down but warn us not to touch ECMO or bump the cords they can easily get a clot which could then be fatal if they didn't catch it. Big Daddy and I sit for a second I ask if I can touch him and if he can hear me. Yes and yes but don't touch a lot it may overload him. He is totally sedated so he is feeling no pain and they will start to wean him somewhere down the line. I remember the loudness of the room the beeping and whoosh of the chest tubes. The pumps and monitors. The had probes on his forehead checking his brain waves and a probe over his kidneys. It is such a weird feeling to want to hold your baby and not be able to in short it is torture! and they are on me to pump which I want to do but it still isn't going right. UGH! I was not pleased , but he was on the mend right?
Wrong, the next day we walk in and he has some blood showing through on his chest dressing not good. I point it out it is assessed and they decide it is fine. Being that I can do nothing else in a helpful capacity I watch that dressing like a hawk. If you look at the pics you can see what looks like a sideways eye opening well, you could see the blood starting to accumulate there. Again they look call the head ICCU Dr and it's fine we will watch it. OK, We go get lunch and come back to visit him again and it is really pooled in there and is starting to leak out the top. Again I bring it up and they look at it and decide to call his surgeon. They still watch it but he is concerned. If you could meet him you would just know that he is pretty easy to read and he is worried in turn I get worried.
It's Christmas the babies first and he will be sedated and completely unaware. Having two other kids that were ripped from their nice happy normal lives where Mom is there 24/7 we make the hard decision to spend Christmas Eve and Morning at my mom and dad's to give the kids the best Christmas we can. It was so hard for me to leave my baby all by himself on Christmas. I feel like the worst mom ever! It's like choosing who is more important. My original plan was to have Christmas a Ronald Mcdonald house in our room. Making my mom pack up the kids and everything she is amazing and was going to. After a lot of coaxing from Big Daddy and the Nurses we head out. I feel sick to my stomach the whole time. But I sure feel wonderful when my big kids are so happy to see me! I LOVE my babies!! I would have 100 if I could they are that fabulous. Our Christmas was brought to us by RMDH they had a day where you could go to this big room and pick out a present for your kids ,not just your sick kids but all of them. They got a filled stocking each, stocking stuffers on top of that, a toy, and other little stuff they even had wrapping paper. My mom literally bought everything else. Big Daddy did grab Sassy's big gift and a smaller box of stuff I had been squirreling away. We also stopped and did a last minute shop at Target and then Fred Meyer. I think our kids had a Wonderful Christmas despite all the insanity. Luckily they are good kids and grateful for all they get. Around noon Christmas day I start feeling really guilty about the baby and we can't stay for dinner. We kiss goodbye and I cry and we head back. That was one of the hardest things for me was having to focus on my baby and not the other two. Whew talk about questioning if you are doing what is best for your kids or not that is a struggle!
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