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The Little Peanut That Could

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 into the body
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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

9lbs, 10oz!

Eleanor is quickly growing out of newborn clothing and moving into 0-3 months. Everything I think will be huge on her ends up fitting quite well, and it is both very exciting and very sad. Eleanor has entered the last three weeks of her steroid regimen, and her dose is weaned every Tuesday and Friday! Eleanor is mildly in love with her unicorn toy (thank you, Lydia!). Her face lights up when she sees it and she will occasionally bat at it. All the other toys spark minimal interest. She has been seen playing with her pulse-ox and heart rate monitor wires. It’s too bad they don’t make toys like that! She m ost definitely has big, beautiful, brown eyes. Her h air is growing like a weed; it's still a toss-up as to what color it will be. Some days it looks blonde, some days dark brown, some days it has a reddish tint to it. She still has two major bald spots from where her head was shaved to accommodate IVs. She just went two days with no poops and was very upset about this

A Nine-Pound Peanut

It’s been a while since the last update! This is the start of (I believe) week 4 of Eleanor’s steroid regimen. The steroids are doing their job and Eleanor is weaning her support settings well. The little lady hit NINE POUNDS today and, as always, is looking adorable as all get-out in all her onesies and holiday-themed outfits and gigantic head bows. The past several visits have all been so rewarding. I got to hold my niece for the first time Friday afternoon! Her Grandpa Bob held her on Monday morning. Eleanor is alert (and looking like brown-eyed girl more and more every day!!), expressive (so fun seeing her responses), and it’s a whole different experience getting to hear her (helps, not having a tube down your throat, I’d reckon). Also want to note how amazing a four-day weekend probably was for Kim and Alex. A happy Memorial Day weekend it was, indeed. This weekend, Eleanor also got upgraded to a larger crib (more room for activities!) and is really set up in the toy dep

Into the Swing of Things

Happy (belated) Mother’s Day! Eleanor got her vent tube removed on Saturday and is doing WONDERFULLY! Behold the power of steroids! They placed her on a CPap nasal cannula instead of the elephant mask, but she still is actively annoyed with the prongs in her nose and has figured out that she can remove them by smooshing her face against anything and jerking her head away. She’s too smart for her own good. She has also already begun weaning her CPap support settings and hangs out at room air (21%) oxygen almost all of the time. She is breathing comfortably unless she is super angry, and who really breathes well when they are sobbing anyway? Doctors have discussed moving her to Vapotherm (this is a high flow nasal cannula that makes oxygenated gas that pumps into the lungs and is a great oxygenation tool and less invasive than CPap...read more here:  https://vapotherm.com/hi-vni-technology/ ) on Thursday. This makes Mom and Dad really nervous that they are pushing her too hard befo

Aiming for September

Eleanor is thiiiiis close to weighing a whopping EIGHT pounds! She loves her food, even though her protein supplement gives her the most epic gas. And I do mean epic. She farts as loud as a grown adult; nurses down the hall can hear her. The plan for the little miss to get off of respiratory support has FINALLY commenced. Eleanor started an 8-week course of steroids on Tuesday. She will get two full weeks of the big kahuna dose and then taper down until she weans off at the end of the 8 weeks. Should she need more steroids closer to time to get off, they can increase the dose for a few days without causing negative effects. She is on the big kid steroid Orapred (similar to Predinisone, which I am sure many of you have heard of) which is an oral steroid she can take through her NG tube and doesn’t require an IV or any other new accessories. She will be a 'roid raging little pistol butt for the first two weeks and should calm down after her dose begins weaning. The plan is

No More Pneumonia!

Eleanor has had a productive week, to say the least. She began a course of antibiotics on Monday post pneumonia diagnosis. Initially, she was given Cefepime and Vancomycin (both bacteria-killing antibiotics), until her blood cultures and urine cultures came back negative and she was switched from the Vancomycin (too much of this antibiotic can cause toxicity and must be monitored) to Ampicillin. She has responded very well to the antibiotics and has weaned back to her original pressure settings and sits comfortably at 30% oxygen all day. She is not allowed to wean below 30%, even if her pulse ox level suggests she should be bumped down. The doctors want to keep her comfortable and not force her to work hard. She did, however, need to have a midline IV inserted, as her teeny uncooperative veins kept blowing through regular IVs (I think she was on her third one come Wednesday morning...a mere three days into her antibiotics). This is a soft catheter that is placed in the vein. It is much