She went to high flow on Thursday, and did awesome! They started her out on 5 liters and not to long after...on that same day, they turned her down to 4. She did so well and everyone was so happy with how well she was progressing. They made quite a few other changes that day as well....they changed her feedings from an hour to 30 minutes, they started to wein her hydrocortizone, they added iron to her vitamins, they up'd her feedings. Just a lot of changes. But she was doing so well with everything, that it was ok. There was talk on Thursday night to go down even more on her oxygen, to maybe 3 liters.....but thankfully Meredith, one of our primary nurses was on that night and she advised against it. That's what's so nice about having primary nurses....they know her so well and they know what she needs. We already learned that baby Katea doesn't like us to move too fast, so she was firm with not weining her down another liter. I'm glad she did that!
Her 'honeymoon' period lasted about a day and then she started showing small signs of distress. Her Fi02 was swinging quite a bit, and she even had a few ABD episodes. She just didn't seem like she was comfortable, and something wasn't right. The thing is that so many things were changed at once on Thursday, that it's a little hard to tell what exactly it was that she wasn't tolerating. They ended up going back up on her oxygen to 4.5 liters, and we're going to sit there for a while. I'm really glad that they didn't end up going all the way down to 3 liters, it just makes me think she might have failed hard and would have had to be put back on the tubes.....thank you Meredith for preventing that! :) That's why we LOVE our primary nurses!
The also moved her feedings back to an hour and that seems to be working better. Her bowels have been working really well, pretty much since she's been born.....she's been peeing and having stools on a regular basis. Lately she's been really gassy and her stools have been so runny that it looks like she has diarreha. Her little bottom started to get red, so we were putting an ointment to help prevent a rash. They aren't really sure why she all the sudden is having such loose stools, because it could be a number of things. One thing they've done to try and remedy it is they changed the formula for her food she gets. She's still getting the 27 calories, with betaprotein...but they're adding microlipids to the mix. So now, she's getting 33ml of breastmilk fortified with human milk fortifier to 24 calories, added microlipids(fat) that takes it up to the 27 calories, with a scoop of betaprotein. It really amazes me at the science that goes into everything that happens here. All the difficult formulas that have to be calculated so these babies can get exactly the dosage they need, not more and not less. It's amazing!
Her weight gain has slowed down quite a bit....probably because she's been pooping so much....but the NNP's are concerned that she's not gaining or growing enough. She had a huge weight gain yesterday, she jumped up 65grams and now weighs 1975, which translates into 4lbs.5oz. but the days before that, she either didn't gain or she only gained 5-10grams. They don't look at the weight gain for one day, they look at the whole week....and well, she didn't gain that much this week. Yesterday, she didn't grow in length at all either. To me, she's grown a ton....I mean from 1 lb. to 4 lbs. is huge in 2 months, but they would like her to be growing more and faster. Today when I got there, Stacey was there. She told me they had changed her feedings. She'd been a little higher on her Fi02, like between 27-33%, which is still ok, but higher than she'd been....and if she could just grow, her lungs would get stronger. The plan they'd made in their rounds this morning was to increase her feedings from 33ml to 37ml.....and possibly fortify it to 30 calories instead of 27. Just to try and get her to gain weight and grow. She got her first feeding at 2pm today, Stacey didn't want to jump 4ml so quickly so for that feeding she gave her 35ml, fortified to 27 calories....just the same formula I explained before but 2 more ml. I noticed that she was squirming a lot more and she acted like she was uncomfortable....and she spit up a bit. When I called to see how she was doing tonight, the nurse told me that she wasn't tolerating the up'd feedings.....I guess at the 5pm cares they gave her the 37ml and she spit up then too. So, they changed the plan back to the 33ml fortified to 27 calories....but they're doubling the betaprotein (giving her two scoops)....wow, that's a lot of information isn't it! haha but that's what's going on with my baby girl!
She's still on 4.5 liters of oxygen and she's going to be there for a while.....the plan is not to force her, but to go at her pace. When she can consistantly keep her Fi02 at 24-25%, then they'll go down a half a liter....they'll wait at 4 liters until she's consistanly at 24-25%, and then go down a half a liter more.....it'll take a little while for her to get down to the 2 liters to be able to start breastfeeding, but that's totally ok! The NNP's and nurses don't want to rush her, and neither do we. There was a glimmer of hope that we might be able to take her home for Christmas....but not anymore....and honestly, we're in no rush at all. We're happy to stay in the NICU as long as we need to so that she can be READY to come home....no matter how long she needs!
Grateful for the staff at the NICU, especially our primary nurses....I know I've said it a million times, but I really am so grateful for everything they do for my baby girl! I'm not looking at these changes as steps backwards....but more as Katea's timeframe, and we all need to figure out what that is and get onboard! Afterall, she's the boss!