Confessional

It's been a long couple of days. I spent all day yesterday at the hospital, and Philip and I stayed until nearly 2 a.m. last night. Addie did very well when they did her ventricular tap, but they took so much off that she is still struggling to recalibrate. She's spitting up a lot more, bradying (dropping her heart rate) and dropping her O2 sats a lot more. Thankfully today she looks at least a teeny tiny bit better. She's still spitting up, but she's not dropping her heart rate and sats as badly. We're concerned about the spitting up because she is off IV supplementation now, and losing all of those calories means weight loss and that her body is lower on fuel. She can and will turn this around, but it certainly makes for exhausting days for everyone involved.

Last night was a struggle for me personally for a lot of reasons. It's excruciating to see you tiny infant suffer and know that the day before she was happy and healthy, that her changes are due to a procedure you signed off on no matter how necessary you physically know it was. There's so much guilt in this place for the parents who care.. .and there are a surprising number here who don't care. But I'm not here to get on my soap box about them. This is to give you insight into the thoughts of the rest of us and maybe it will help someone else who is or will go through this to know they aren't alone.

Guilt comes with the territory, or at least I think so. I struggled last night with guilt for putting Addie through such a hard procedure, guilt for not objecting to a bath for her last night when she'd already had an exhausting day - after her bath she dropped her HR and sats much more.. she was exhausted - guilt when I looked at the baby girl sleeping to Addie's left because she and Addie would have been the same gestational age, 31 weeks, and this baby was doing well and weighed 3 pounds. Her dad was shocked by how little Addie was. If I could have kept from having her so early, so much of this wouldn't have happened.. .she just needed a few more weeks. This baby was handling food well, breathing on a canula, and pink and happy. Addie is struggling with all of the above. Everyone tells me I did everything I could and not to feel guilty. If you've ever had a child in a similar situation, though, you understand the guilt is just something you have to accept and not dwell on. I will always feel guilty, and that's ok. Most days I don't think about it but on others it threatens to swallow me. She's handled everything so well all along - everything she's supposed to handle anyway. It's just issues with her brain bleed that keep coming up.. .and that bleed was caused when she was born, I have no doubt, due to my divided uterus, and it was made worse because of her young gestational age.. which was also a result of my uterus. I understand I couldn't help either issue, really, but it relates back to my body.. .so I feel guilty. She's been perfect from her first ultrasound. It's just when my body got in the way that she started to struggle. I wouldn't trade Addie for all the healthy, "normal" babies in the world, but I hate to see her struggle when surely somehow it could have been prevented.

I don't have great insight to leave you with, but I will try to have better news to report in with soon. I love bringing you warm, cuddly news, but the reality is this is a tough world we're living in right now. It will get better, and I know that. I wouldn't be sharing our story if I didn't share the struggles - whether they're Addie's, mine or even Philip's.

Love and hugs!

Rachel