We are in the midst of week 5. Maxen is not taking anything by mouth. It’s weird to not have to feed your baby. He is getting all the calories he needs through his NJ tube but still weird. He is still gagging and spitting up some mostly when we move him around. It’s hard to be worried about picking up your baby. Since his tummy is pretty much empty (because the NJ tube empties into his intestines and not his tummy) the spit up is yellow bile and smells like rotten fish. I haven’t gagged myself which is pretty great. I guess my motherly instincts are taking over so I can be there for my kid. His labs have been all over the place.  They keep giving him different diuretics to help the fluid come off but he still will gain weight and labs will still look like he is retaining fluid. They tell me all of this is normal for liver failure, nothing out of the ordinary. But it just means he is getting sicker and he needs a new liver soon. Dr. Rao is going to try to get his transplant score bumped up.

I’m not doing that great. My jealousy/sadness of life is in full gear. I normally can pep talk myself into knowing that this is just a season and there will be a light at the end of the tunnel. But I’m not able to do that because as I look at what I know about life after transplant it’s still hard. It’s 2-3 weeks in hospital. It’s 3 months of lots of outpatient clinics and checks to make sure everything is going ok. There is always a possibility of rejection. There is always possibility of other issues popping up. There will be lots of therapy to get Max to where he needs to be developmentally. He is still a baby which is demanding and overwhelming in general. And Jon and I juggling daily life as well. I can’t see the light and it just makes me sad. I know there is the possibility that his new liver can cure everything and besides the typical things that come with transplant, Maxen could be a completely healthy and normal kid/adult. But even knowing if that’s a reality is so far down the road.

I’m tired of always feeling guilty that I’m not there for one of my kids because they aren’t in the same place. It leaves little time for self care for myself and time for Jon and I to focus on each other. In a weird way, we should jump at this opportunity and do things for ourselves because we have the best babysitters for both Maxen and Bexley. But the guilt just overwhelms me. And I don’t have the mental capacity to try to plan anything with anyone. We are planning a date night this weekend since we know we need one. Since we have been here awhile, the hospital gave us tickets to Colts game so we are going to that. It’s a night game so we aren’t even sure how long we will last.  We are that lame!

Everyday is getting harder. I’ve been crying more each day. I was watching him swing today and listening to this one song and I just couldn’t keep it in. This is not want I want for my child. This is not how I want to spend my days. I put my rosy white hand in his yellow one and I just cry cause that’s another reminder that he is sick. I’m trying really hard to lean into Jesus. To know that he is with us in this suffering. But I just want it to all go away.

https://m.youtube.com/watch?v=3CYxNwp5E9Q