Eleanor's Story

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

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

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