While ultimately this update is not alarming (I hope), 8/9 was a most difficult day. In fact, I’m writing this on the 10th because I just couldn’t deal with the day and its events.
Charlotte’s weekly weigh-in (Baby Weight Watchers, I like to call it): I was optimistic that she’d gained weight even though she’s barely getting 500 ml food a day if we feed her only when she asks for food and then finish those feeds with the NG tube.
I was partially right. Charlotte weighed in at 9 lbs. 11 oz., gaining only 2 oz. since last week. She should gain 0.5 oz/day or about 3.5 oz/week, so this wasn’t good news. Dr. Ramadan (who we fell in love with, by the way) spent about 15 minutes calculating exactly how many K-calories per kilo Charlotte should take in each day. I forget that number, but the bottom line is that 430 ml/day is “maintenance” and Charlotte needs more like 520-560 ml/day to grow. So we’re back to “how do we get all that food into her without feeding her in her sleep with the NG tube and pump or waking her up? And still wean her off the tube? And especially now that she’s sleeping 5-7 hours a night?”
New feeding strategy:
–Let her tell us when she’s hungry.
–Let her eat for 30 minutes and then stop so she doesn’t fatigue.
–Count a feed as 90 ml (rather than 70) and if she doesn’t eat that much, chase through the NG tube.
–If she goes more than 3 hours without asking for food, get her to eat.
In other words, I’m back to obsessing about every drop of intake and spending my entire day feeding the baby, it seems. I ended up sitting in the doctor’s office, in fact, for an hour because I fed her, but she only at 40 ml, so I had to feed 45 ml by syringe by hand through the tube. Tears streaming down my face from exhaustion and exasperation. Later, she fell asleep eating again and I put her in her crib and attached the pump. She woke up halfway into the feed and whimpered (still hungry, not realizing she was eating) until it was done. I whimpered in sympathy.
Got better toward the end of the day—she ate better and ended the day several mls ahead (enough that she gave several of them back to us, if you know what I mean :-)).
Yet another diagnosis: Charlotte constantly turns her head to the left and twists her body in this direction. We’ve observed this getting worse so we mentioned it to Dr. Ramadan. The doctor took a good look at her, flipped her over and massaged her neck and diagnosed Torticollis or “wryneck.” Basically, she’s got shortened, stiffened muscles on the right side of her neck so it’s hard for her to turn her neck that way. Torticollis leads to flat head and flat head to Torticollis. Best information (and least alarmist) that we’ve found is at http://www.childrensmemorial.org/depts/rehab/torticollis.asp.
Charlotte’s primary nurse, Nancy Smith, told me today that this is very common in babies who have spent a lot of time in the ICU and that she know it can be overcome.
This is fixable (thank G-d!). Charlotte needs “tons” of tummy time. She’ll likely need physical therapy and occupational therapy as well. The state Early Intervention team should be assessing her next week anyway, so we’ll work with them to arrange that. In the meantime, we sit on her non-preferred side, dangle toys there, and tummy time, tummy time, tummy time. Looks like it’s a good thing I’m not working right now since she’ll need lots of special attention and more appointments with doctors, therapists, etc.
(By the way, we’re hearing from lot of people (physical therapists, education students, RNs) that sleeping on the back may be on the way out as the advisable thing—children who sleep on their back apparently are not developing back/neck/trunk muscles appropriately and are prone to flat head. So the folks who advise on these things are re-thinking the whole approach to preventing SIDS.)