Look at Me!

I’m tube free!
That’s right people. The little man did it–he’s tube free! Albeit a messy, unnatural process, he is taking all of his calories orally these days. Last Friday we actually pulled the tube! Since then… we’ve run into another problem though…

He eats TOO MUCH! <– yes, you read that right. His intake at some meals is actually too high, meaning he ends up having large emesis’ (emeses?). So on one hand we’re thrilled with his crazy progress, but on another, we’re frustrated that he’s actually puking more. So we have some plans in motion with Sam’s treating therapists to figure out ways to track our volume better throughout the meal.

Just so you guys can see an example, here’s a video of how we feed Sam (this one was taken over two weeks ago, so he has gotten a LOT better since then).

His goal:  150cc 5x/day.

The process:

1. Weigh 2 Haberman bottles and record their weights in grams on a chart

2. Get Sam all covered with paper towels/washcloths/etc. so we can weigh everything he expels.

3. Start feeding him–right now we are doing 40 “squirts” in a row (technically they’re called “drinks,” but as you can see, it’s definitely more of a squirt 🙂 )

4. After two 40-squirt sessions, we weigh everything–what the bottles weigh post-feed, and subtract to see the total volume expelled. Then we weigh all of the paper towels/washcloths and subtract their “before” weights so we can see how much spill he had.  Then we subtract the volume expelled from the spill. That is how many grams he got in, and we can see how far we are from our goal!

Yes, it seems like a lot, and it is. But it gets more natural and easy every day.

Our insurance agreed to extend him an additional week, so we are thanking God for that! And thank you for all the prayers. While he is tube-free, we want to fine-tune his feeding as much as possible. Truth be told, we can’t really afford 2.5 bottles of formula a day (he needs only 750cc total, but he expels that much and more).

Sam’s vomiting continues to be an issue, and we have no clue why. Behavioral? Maybe. Anatomical? Maybe. This kid is a walking mystery.

In other StibbeFam updates:

**I quit my job! My last day will be Sept. 30th, and then I will begin the toughest job I’ll ever have… being a Stay-At-Home-Mom (SAHM)!! Absolutely thrilled.

**The twins had their TIPS clinic yesterday–it’s the NICU Follow-Up clinic. Both did very well. Jack is right where he should be for his adjusted age, and Sam is just slightly behind. As always, the physician prefaced telling us about Sam’s “delay” with, “Considering everything he went through, he is doing amazing!” Yes, our little miracle is doing amazing! 🙂

**Today, Sam had an Upper GI and Small Bowel Series–Sam’s GI doctor wanted to rule out the possibility that Sam had a stricture in his bowel (remember when Sam had a perforation in his small intestine?). There was always a possibility that a stricture would form, and if it had, it could possibly explain Sam’s vomiting. He does NOT have a stricture, thank goodness! So now, we know his vomiting is probably just due to volume.

That’s it for us! Here are some pictures of the 2 best-looking boys around.

5 Comments Add yours

  1. Randy & Nancy says:

    Way to go Sam!! You continue to show what a determined little boy you are – which you’ve done since day one! Glad to hear that both boys had a good check-up. The pictures are sooo cute – as usual. Enjoy being a stay at home mommy, Trish. Just think of all the exciting little things you’ll get to see as they happen. Fun! Take Care. Love to all…Nancy

  2. Carol says:

    CONGRATULATIONS Sam on being tube free–what FABULOUS news!! We will hope that the feeding process gets better with each day of working at it!!! Love all the pictures—the boys are looking so grown up! Trish–I couldn’t be happier for you making the decision to be an at home mommy. This time is so precious and it goes by so quickly–enjoy every minute. We’ll be waiting for many pictures!!!!! Love and hugs…….Carol

  3. Krysta says:


  4. Pam Eganhouse says:

    So happy to hear Sam is tube free! We started the program yesterday! Derek is in the nap room next to Sam. The first day was rough, but he was happy to come back for day 2. Maybe we will see you sometime this week.


  5. That is fabulous!! Tube-free is the way to be!

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