Eleanor's Story

Eleanor has been growing like a weed! Using little to no energy to eat allows for all those calories to be stored, aside from the hundreds she burns kicking all day long.  Eleanor had a swallow study this week where it was determined she needed thicker milk. There are no thickeners for breast milk that are NICU approved so she, reluctantly, is now trying out formula. She gets to attempt one ounce via a bottle and the remainder through her ng-tube. The remainder is still breast milk, so we’re not completely throwing in the towel.  Thicker food has made a significant difference in the feeding process. What used to be terrifying and stressful, as Eleanor would choke and stop breathing, is now a wonderful experience. The only problem is Eleanor often just gums the bottle and isn’t actually drinking anything. But she’s still happy, so we’re okay with it.  This weekend she is to repeat her stim(ulation) test. Recall from the last post, this is the synthetic injected ...

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...