Exactly one week ago I was listening to Josh’s doctor explain everything that was wrong with him and how long the road ahead would be. I can’t believe it’s been a week since my baby boy was born. He certainly knows how to make an entrance.
This is the informational part of the blog – I’m going to give you some facts about Josh’s condition and his goals so updates will make more sense.
A few important terms: Oxygen assistance or FI02. This is how much oxygen they are giving him. The lower this number is, the better, but anything below 50% is pretty good. Then there is his oxygen saturation level – they want this number to be between 88% and 94%. His average blood pressure or BP (or bp when I am really lazy) needs to be between 34 and 40. And his dopamine, which helps control/regulate his bp (see?), can go all the way up to 20 mics but we want it to be as low as possible. When it stays below 10 for long enough he gets to start feedings with real milk and not just the IV.
I think that’s it for the main numbers. His heart rate hangs out in the 170s/180s but goes down to the 160s when he’s really happy. Most of the time he’s kind of mad.
So if you just want information, thank you for reading and enjoy your day :) If you stick with it, this is now the part of the blog where Kristen shares her feelings. Yay, feelings!
I think it would be helpful for me to write down what I’m feeling. I’m better with words than anything else and I think it will be cathartic.
This sucks. Truly, completely, totally sucks. I hate it. I hate every moment of it. I hate that I have to brace myself every single morning to hear bad news about my son. I hate that every time my phone rings I dread answering it because it could be the hospital. I hate that stupid other baby in the NICU who cries non-stop when my own baby can’t cry at all. He wants to but he can’t because he can’t breathe on his own and has to have a tube shoved down his throat so he can’t even tell me when he’s sad.
People keep telling me how strong I am. I don’t feel strong. I feel weak and like I can’t handle it. I don’t know how we will keep doing this for 13 more weeks. Just typing that out makes me sad. I want to be strong and courageous, like we keep telling Josh to be. But it’s too hard. I can’t do it. I can’t even pray. I haven’t spoken to God in a week. I’ve been able to pray for others but I can’t talk to Him about Josh. I am so angry.
When my mom was diagnosed with cancer and my dad lost his job and then my mom got sepsis and was sick for 3 years, I thought that was the worst part of my life. I thought that at the very least my family might get some peace in the future.
We can’t get peace. We can’t be happy. For whatever reason that isn’t the plan. Did you know our cat got out and ran away in the middle of all this? Our freaking cat. I feel like I’m being pranked or I’m part of some cruel experiment.
I know we have a lot to be thankful for. Our baby is alive and he’s at one of the best NICUs in the country. Our family and friends have supported us and people have prayed all over the world. Daniel has been great through all of this and we have a house and jobs and food on the table. And God’s plan isn’t to make us happy. I know all of this.
But I feel like I have done something terrible, something that must warrant all of this punishment. Maybe it isn’t punishment but it sure feels like it. Am I not praying enough? Do I not read my Bible enough? I would do anything, anything, to figure out what I’ve done so I can fix it and bring my baby home.
I keep watching other parents bring their babies out of the NICU and into the elevator to go home. Every time I visit Josh I have to pass by the stupid transition nursery where the babies are fat and being held by their moms and go home a few days after they arrive. I want to hold Joshua so bad it hurts. But I can’t.
I don’t know how to end this. It helped to write it out. And I’m really okay. Just frustrated and confused. But it comes with the territory. It won’t be like this forever.
Thanks for reading.