So let’s start out with the good since its been a few days since our last chime in with you guys! There really hasn’t been a whole lot to report. We’re waiting on him. We went home and spent Tuesday through the night with our daughter Kara.
However, little man has been resting, recouping, and recovering from a hard two weeks of life so far! We have had our battles and decisions. Doctors fortified baby boys breastmilk with formula for two feedings (1 teaspoon for 3 oz of milk) for two feedings; I had a talk with the neonatologist that last juuuuust over 2 hours before we came to the decision I was super uncomfortable with that and didn’t want it anymore. Instead, for a little more than 48 hours, we only offered food by mouth every 6 hours. On the odd 3 hour shifts that weren’t by mouth, it dumped into his ng feeding tube to let him rest. Starting yesterday, he decided he wanted full bottles!
For those of you who wanna know why I care SO much about NO FORMULA right now….
as he gets older, if he needs formula at that point or I can’t keep up with what he needs, we’ll take it as it comes. But for now, I gotta follow my gut.
Soooo….. What’s happened in the past 48 hours then?
Well, 7 days ago, he had his shunt adjusted to flow faster, and he stopped eating all together. 4 days ago, he was taking anywhere from 5 to 18 mLs (of 60 mLs offered). I contacted lactation and got speech therapy involved. I started using frankincense EO on his feet and spine. And the neonatologist started the every other feeding by mouth. 2 days ago, he took his first whole 60mL bottle completed! In the past 24 hours he’s had 3 full bottles!!!!!! And tonight he took his first complete bottle from me (nurses had fed him previously when we weren’t here). He chuuuuugged that sucker too let me tell yah!
So, we had another chat with speech, bc we needed support on our side we weren’t getting from his nurse at the time to change orders and give us a doctor. We convinced the doctor to change her orders. Now, instead of automatically switching between oral feeds and tube feeds every three hours….. We feed on his cue every 3 hours. We can’t feed on demand which is what we wanted, but we’re satisfied with the compromise right now. His weight is up (7 lb 9 oz…. We’ve been struggling to leave the 3 oz range), and he’s happy. Since swapping to cue, he’s only received one full feeding by tube (he slept through temperature and diaper change), eaten 35mLs once, 45mLs once, and 60 mLs once. We’ll see what happens here in another hour.
So, what does this mean for little mans future?
Well, tomorrow we will still schedule his surgery for his permanent feeding tube. He will be getting a peg tube. While we are reluctant, and obviously don’t WANT it for our kiddo, we’ve heard nothing bad about it ever. All the parents are happy they got it, most wish they would have gotten it sooner. With the intent I have to nurse exclusively at some point soon, the ng tube is more of a annoyance to him than anything and I don’t want that annoyance to deter him. Pumping is hard!
That reminds me, side note: hospice stopped by today as well as optimology. Optimology released him as they believe he can see and even with “lazy eye,” on the right side, believe it is common and perfectly fine!!! Praise God!!! Hospice also stopped in. Last week they placed a recommendation/referral in Noahs name to have a hospice nurse come to the house 3x a week to ensure his happiness. His progress is far beyond what this doctor presumed he would be capable of. He is officially released from Hospice care, referral is cancelled, as they believe he has a chance at a higher quality of life, no matter the length, than they ever thought possible. Again… Hallelujah! HE is good! 🙌🙌🙏 💙
So tomorrow morning, Noah is going to have an upper GI series or a barium swallow study to make sure all the anatomy of his intestines and GI system is anatomically correct. Complications are nausea, constipation, or (rarely) a blockage. We’re hoping none of these happen as all will affect how well he eats but we need the test to make sure that there is nothing anatomically wrong making him not gain weight and eat on his own & that the tube will be placed flawlessly. Basically, it’s an X-ray.
Then GI will come talk to us and we’ll set a date and time for surgery. If needed. Well cancel surgery. But, we’re gonna go ahead and schedule it so that Id he does still need it next week we are closer to coming home and making our family whole again 😍
What is Wrong with Our Baby Boy?
Baby Boy Eagle Has A Name! He’s Born!
My Two Day Old Warrior
Totally In Love, Noah’s Improving at 5 days old
Noah’s Moving On Up
There’s Hope In Progressive
The First of the Setbacks
Back on the Road to Recovery
Slow and Steady Wins the Race