Sorry everyone, I'm a bad blogger. It's so much easier to just post a quick update on my facebook status! If you're following the blog, feel free to add me as a friend on facebook. You'll get smaller, more frequent updates that way. Plus a bunch of updates on mundane stuff that happens during my day.
Okay, back to Katie.
Short story: She's up to 7 pounds, 12 ounces. As of this weekend, she has been moved to a bigger, quieter room so a new baby can have her specialized room. They now have her on "on demand" feeds, which means she is no longer woken up every 3 hours to eat. She has a minimum of 245ml every 12 hours she has to consume. She still has to do this without any brady/desat episodes (which she hasn't had any since she started this new feeding schedule), continue peeing (so we know she isn't dehydrated), and continue gaining weight (so we know the schedule isn't working her too hard).
Long story: Since the last time I've blogged, she's had a few setbacks. We were told on January 23rd to prepare for her coming home on January 29th. We planned to do our 24-hour stay that weekend.
January 25th, Katie's nurse, nurse practitioner, and discharge coordinator came to her room while we were visiting. They told us that the doctor wants to reset her 5-day timer on Monday, January 28th. That she has been continuing to have these brady/desat episodes, and that she just needs more time to grow out of it. That we probably shouldn't do the 24-hour stay until closer to time for her to go home, and that she'd have to redo her carseat test. That they weren't going to sign Ron's FMLA paperwork (he's taking two weeks unpaid when she comes home) until they have a set day that she is going to be discharged.
I'd like to think that I've held it together pretty well. But this was my breaking point (kudos for lasting almost 4 months without losing it, right?). I must have been crying, because the discharge coordinator asked if I was okay. I couldn't say anything because I was still trying to be calm. I was holding Katie and didn't want her to pick up on how I was reacting. I just stared at her monitor and tried concentrating on making my chest stop thumping so hard.
I calm down enough to realize that it was just me, Ron, Katie, and the discharge coordinator left in the room. I honestly don't remember the other two women leaving, or even what they said after I spaced out. I finally get focused enough that I can actually participate in the discussion. The discharge coordinator tells us to do the 24-hour stay that weekend. Try breastfeeding each feed to see how she responds. Be present during rounds so we can make sure our concerns are going straight to the doctor.
We stayed at the hospital Saturday night/Sunday morning. The nurse made the decision that we were going to breastfeed every other time, because she has vitamins every 12 hours and every bottle is fortified with formula and protein, and didn't want her to miss the benefit of that. Even that was rough. Waking her up when it's time to eat every 3 hours was hard. Pumping after breastfeeding (I've been pumping since day 1, so my supply is much more than she needs right now. If I don't pump after I breastfeed, it tells my body to stop making so much milk, which is hard to come back from!) and after giving her a bottle was the worse. A chemical is produced during breastfeeding that makes you sleepy, so you can rest when the baby does. Going on 2 hours of sleep+chemical telling me to sleep+knowing she's asleep so I should be too.. makes me wonder how any mom in the history of the world ever gets anything done. I'm not wishing any of it away.. but I am looking forward to her sleeping through the night, and she's not even home yet. I'm in trouble, aren't I?
We got to talk to the doctor during rounds Sunday morning. She pretty much ignored our asking to switch her to on demand feeds ("we can do that when she's closer to coming home"). She told Ron that she would come back "later" to sign his FMLA paperwork (which didn't end up getting signed for 6 days after that).
We had to sit through a week of her being Katie's doctor (and them putting in orders telling her to have every-4th-feed through her tube because she was sleepy for every 4th feed, they figured she just needed rest) before it was time for her to rotate off and we could get a doctor who (to us) actually wanted to send Katie home.
Fast forward to yesterday (Sunday, February 3rd). Ron and I get a phone call letting us know that they have moved her to a different room so a sicker baby can have her room. We make it up there right before 11am, and I start breastfeeding her as soon as I could. Doctors rounded around 11:15, and Ron went out to talk to them. He says the same things he said to the other doctor.. but this time, they listen. They put in the orders immediately for her to be switched to on demand feeds. To take out the tube. Let her sleep and wake up and eat when she's hungry, not when the clock says so (within reason.. if she's not already awake, she has to be woken up after 4-4.5 hours to eat).
Hopefully this new schedule will prove to be exactly what she needs. Seriously hoping I don't have to go to work next week (not that there's anything wrong with any of you.. I just prefer Katie)!