Another pretty good one! Lily's still on the SiPAP, its oxygen setting was at 40-45% for most of the day, and she was stat'ing pretty well. I stopped by the NICU and held Lily for an hour, which was great. She stat'ed in the mid 90s for the most part while I held her, so she liked it today!
She did have two bradycardias, one of which was during Sara's visit in the morning. "Bradys", they're called. They're horrible. Seeing your kid's pulse drop to 35bpm - about one beat every two seconds - is terrifying. But, they're apparently a very typical part of prematurity and RDS (respiratory distress syndrome). It's just a matter of getting them to come out of it... usually by light tapping on her chest or back, like a jump-start.
Lily's hematocrits (crits) are coming in borderline... They like to see a level of 130, she's at 130.5. In the past, they've transfused blood to replace the crit levels, but they're not doing another transfusion just yet. If they keep transfusing blood, her bone marrow may get the wrong message to stop generating crits, in which case she'd become reliant on transfusions- which we obviously don't want to happen.
Otherwise, her sodium levels are still a bit low so she's getting the occasional sodium vial into her feeding tube. She's still tolerating the 6.5 ml/hr breast milk nicely, which is huge.
So, all said... a good day! The fact that she's digesting well, breathing on her own (with some help), and isn't showing any signs of infection or brain bleed - each are miracles! Thank you everyone for the thoughts and prayers. The blog just passed 15,000 views in a bit under a month - amazing!
I am praying for your family, your story has pulled at my heart strings. I had twins at 26 weeks, we lost one little girl. Our first twin, Eve is now 10 years old and is a very beautiful, bright and clever little girl. We spent 11 weeks in SCBU and went through a similar experience to you.
ReplyDeleteThank you for keeping us up to date and please find strength in knowing that you now have friends all over the world who are rooting for Lily to win this battle. xxxxxxx
Max,
ReplyDeleteI just found your thread on WSO. I'm so sorry your family is going through this right now, but it sounds like things are on the upswing. Lily's gonna have a heckuva story to tell later in life, that's for sure. Your family is in my thoughts and prayers. Be strong for them.
Eddie