My has the time flown (but at the same time crawled)! Eleanor
is now 5 months old and this morning weighed in at 10lbs, 13oz! She officially
is too big for newborn clothes as well as the tiny baby socks. She poops on her
ensemble approximately once a day and still enjoys playing and being held.
She is doing very well post-steroid regimen. Her last dose of the
big guns was on Friday morning. She has since switched to hydrocortisone so
that her adrenal gland knows to kick it back into gear and her body doesn’t go
into a shock of sorts without the steroid boost. She will have to have an ACTH
test in two weeks when she is finished with this round of steroids. ACTH is a
hormone injected into the shoulder muscle. They draw blood before and
after to measure how well the adrenal gland responds.
Eleanor has also been learning bottles. She started off
pretty well, initially taking bottles with understanding the general concept of
suck, swallow, breathe, but she oftentimes just wants to guzzle and forgets the
breathing part. This is obviously not okay, and we have been trying
to work with her to find the way that works best. Trying to pace her (pulling
the bottle out every 8 or so sucks) seems to annoy the crap out of her, but at
least she breathes. In order to go home without a g-tube (the tube placed directly into the stomach), she needs to be able
to take at least 80% of her 80ml each feeding, and she currently barely manages
20ml. As with all new things, practice makes perfect. This has been the most
frustrating point of our NICU journey: so close to home that we can see the light at the end of the tunnel, but it seemingly just keeps moving farther and
farther away.
It’s not the end of the world if she has to have a g-tube; it's just kind of upsetting given all of the things she has conquered, and food turning out to be the hardest task (as it is for most babies in the NICU). We feel she
will do amazingly once she is home, so it could be the best thing for her when we
can feed her on her cues rather than a strict every three hours, whether she is
hungry or not.
We are thankful for the hospital for providing such excellent
care for our tiny peanut, but ever since moving to the “feeder and grower”
floor, we have experienced less than stellar care and less than ideal attention
paid to Eleanor. More often than not, nurses are assigned to three babies, all
of which are to eat on the same schedule, and it is just impossible for one
person to feed three babies at a time. Especially when all three babies are presumably learning how to eat. We are very thankful that Eleanor's grandmas have been able to be present with her to give her more support.
So many things have happened in the last month, but those are
the big points. Continued thoughts and prayers are much appreciated.
Gotta send my love to the Grandmothers!
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