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The Last Hurdle Before Home


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.

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