The First of the Setbacks

Today was Noah mans first “bad” day. Last night into this morning he ate really well, no flaws no problems. Well this morning between his 9am and noon feedings they adjusted his shunt flow rate and since has nearly completely quit eating. He usually either nurses very well or eats between 35-45 mLs. He was set to go home on Friday. In fact, they had us set up on discharge classes, videos, and rooming in…


After his shunt, he ate: 20mLs, 18mLs, nursed poorly with 4mLs supplemented… So they placed a ng feeding tube agaaaain and gave him the rest of the 50mL via ng. At 9pm, he nursed terribly and supplemented nothing. So 50mLs went into his ng.

On the bright side, last night he weighed 7lb 2.8oz and this morning he was 7 lb 4 oz.. My worry was that tonight’s weight check would be way less. He lost 5g. So, not significant to worry, and that is awesome!!! See! I told you my baby fights even when it gets tough 😍 so now since he didn’t loose the weight, hopefully us being with him constantly for the full 24 hours will help him start eating again and add on weight. I pray tomorrow’s visit to Kara won’t be a setback for him with us missing two feedings tomorrow. We’ll miss the noon and 3 pm feeding. But, Kara needs us too && we need her πŸ’• and it helps a ton we adore his nurses so far!


He will have a ultrasound to check his brain again on Thursday morning. This morning, his ultrasound showed next to no change from the one directly before his surgery. Not definitive, but probably not a good thing. The doctor just really isn’t confident he will ever develop beyond an infancy state of being, and someone along the way said he may not develop a communication pattern. I call BS, and don’t believe it. He cries when he’s mad, which is already communication at 8 days old 😎 couldn’t ask for more!

Despite grim news and unfortunate circumstances today, we adore the neonatologist who has taken over his case. He trusts us and believes us. He is confident in our abilities and interested in our concerns. He spent 45 minutes sitting on the floor talking to us today, answering questions, and offering support. && he’s willing to do that everyday between now and the day we go home. We have nothing but thankfulness to express! And you know what happened tonight? He got his first meal with chef daddy πŸ’πŸΌ


The doctor did tell us we would be sent home with an apnea monitor for any time we are not in direct touch contact with him. As he grows well reassess to see what activities he needs it for, but ultimately it’ll send a shrill alarm if he doesn’t breathe or if his heart rate drops.

If he doesn’t start eating, he’ll be given another week to determine if he goes home on a feeding tube or if he needs to stay here longer. If he does start eating, he can go home when he is ready. πŸ’πŸ’•


^^^ oh and another blessing! How could I forget! Physical therapy came by today and gave us the thumb splints for Noah bear ❀


^^ I bring life changing gifts to my baby every 12 hours 😍 🍼🍼

Previous Posts about Noah:
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


5 thoughts on “The First of the Setbacks”

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s