Steven here...
I know, I know...I'm a terrible blogger. But, in my defense, it's been a little crazy and hectic.
Last Tuesday, Jamie decided it was time for me to go back to work; at least temporarily. She says it was because she wants me to save up some days off for when Miss Elliot comes home; I know better though...she just wants to hog that little bundle of joy all to herself!!! Or she's sick of seeing me 24/7!!! ;-) For those in Rio Linda (as the great El Rushbo says), I write that dripping in sarcasm; in fact, your monitor could probably use a wiping down. :-)
As the week progressed, Ellie kept making baby steps progress towards going home. Overnight Thursday night, Ellie got moved from her radiant heater bed to a "big girl" bed. In doing so, they moved us to a corner area with far more privacy and room to sit, feed, etc. She likes this new little home and is regulating her temperature well. In fact, they've had to quit swaddling her in 2 blankets due to an internal furnance apparently inherited from me. As you may know, I'd wear shorts in Antarctica if the wind wasn't blowing!
Friday saw me work the afternoon from the hospital as Jamie had a bit of a rough morning. Dr. Tolentino hadn't heard Ellie's murmur in several days but heard it Friday morning while making rounds. He noted that this was possibly due to the amount of fluid (Lipids and TPN) being "fed" through the PICC line. As you will recall, the PICC line starts at her left forearm, runs up a vein and outlets in her chest near her heart and lungs. Given the "outlet" location, the fluid being put in her body could be (was?) putting excess pressure on her heart and lungs.
Late Friday evening, Elliot received a single dose of lasix to get the exess TPN and Lipid fluid out of her system. BOY DID IT WORK. I have never seen a diaper so loaded! In fact, she soaked through her two swaddling blankets AND both her folded-in-fourths blankets that she was laying on. Suffice it to say the fluid issue was resolved!
Over the course of Saturday (the 27th), they finalized the weaning process from TPN and discontinued her lipids altogether. This was able to be done due to Ellie's ability to eat increasing content's of milk (albeit from a feeding tube).
In addition, we slowly kept backing her nasal cannula oxygen down to zero. By Saturday afternoon, Elliot was OFF OF OXYGEN!!!! Dr. Tolentino even mentioned that he was hopeful (not to be confused with thought, believed, certain, or any other more confident word/phrase) that Ellie would go home sometime in the middle of next week. In order to do that, she is going to have to eat 8 consecutive feedings by herself, without receiving any food through her tube.
We are so so close, but this last hurdle is pretty high. I've gotten her to eat 5cc out of a bottle on a couple of different occasions; Jamie has done the same as well as getting her to breastfeed a couple of times. But, nothing monumental; we WILL GET THERE! Right after she was born, Ellie did fine with a suck-swallow-breath test in the nursery before her downward turn during her bath. Difference between now and then, at least in my non-medical head, is that she's had LOTS of oral stimulation - feeding tube (which has since been moved) and a ventilator tube, not to mention oral swabs to clean her mouth and lips, bottles, a Soothie (pacifier), her fingers/thumbs/fists, etc. She is staring to figure out that when she wants food, she has to work for it to a certain degree; she's just lazy and likes getting a full belly while relaxing and taking a nap. After many morning runs to the donut shop and Chick-fil-a, I know EXACTLY where that comes from...her Momma! LOL
When I went in for her 9:00am feeding (we changed the schedule from 12-4-9 to 12-3-6-9 yesterday), Nurse Jamie couldn't wait and immediately asked me if I noticed anything different! I looked hard and fast, but not quick enough. Nurse Jamie uncovered Ellie's left arm to reveal a lack of a PICC line! NO MORE IV ANYTHING!!!
Another step closer to home!!!
What a great weekend and Sunday it has been. Not to mention, and I shamefully almost forgot, it's Palm Sunday. What a gift we have all received marked by this coming week and weekend.
Praise be to God.
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So happy to hear all the good news! Hang in there sounds like you are in the home stretch!
ReplyDeleteAmen. Such wonderful news! I believe you're on the downhill slide. We're so excited for you!
ReplyDeleteSo happy to hear the great update on Ellie. Sounds like she is going to be home in time for Easter. I am so happy to hear that she is doing well and making great progress. Praise God!!!
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