Things aren’t going the way they were supposed to. Our baby was supposed to go into the NICU for a few days, learn to feed and then come home in two or three weeks.
Somehow we’ve gone from that, to him being the biggest mystery in the NICU. The pediatrician and neos in the NICU have called consults from hematology, neurology, and the GI and liver departments (oh and anesthesiology for one procedure). He’s had two brain ultrasounds, a liver ultrasound, an MRI, so much labwork I can’t even begin to list it, and now they’re talking about doing a spinal tap.
A spinal tap. On my six day old, tiny little baby boy.
Today I had my first uncontrollable weep in the NICU waiting room as I spoke with the NP from the GI department. Then more sobbing in the waiting room at the MRI. I shuffled through the hospital in pajamas clutching a box of tissues so I wouldn’t have to see the pity and curiosity in the eyes of everyone I passed.
There’s talk of possibly transferring him to Stan.ford if his liver doesn’t start to improve in the next 24 hours. Apparently they specialize in livers there or something.
I just can’t quite figure out how we’ve gotten here. It feels like I’m trapped in a nightmare. Please? Why can’t this just be a nightmare? And I would wake up and take my healthy baby home like all the doctors were telling me would happen soon just three days ago.
Part of me just wants to shrivel up and die.
I’m so sorry baby. I should have tried harder.
Praying. Thanks for the update. I will be praying for your little sweet babe.
I’ll keep him in my prayers. Tears here too.
I know this feeling so so so well. You did amazingly even if it doesn’t feel like it. None of the doctors thought you’d be here but look at you with a beautiful baby boy! No doubt he has your determination and he will pull through this. You all are in our thoughts and prayers. Hoping very soon soon everything falls into place and he’s home with you!
Please keep us updated, we’re praying.