Early: feeding Clancy and Zachary (not pictured)
8:30ish: Breakfast and waiting for the bus. It has actually warmed up for a couple of days so she isn't freezing.
9:30 was a blur trying to get out the door for Clancy's follow-up appointment with the surgeon.
Here's what your appointment sheet looks like when you you get discharged from the NICU with a feeding tube (this is minus today's appointment). It also lacks the follow up appointments with OT and PT I still need to make.
11:30: Babies, toddler and toys scattered everywhere.
12:30: "No Mama!" I don't actually remember what he was upset about, but this is a face we see often these days. It's much more difficult to be a big brother than one might imagine.
Sometime after 12:30:Time to feed the babies...again.
So in February the time Zachary was getting ready for discharge, Clancy began having an enormous amount of pain associated with eating. Consequently, he would drink a bit from a bottle and then scream in pain. This went on for a few days and he then began to show the early signs of an oral aversion as he associated eating with pain and didn't even want to put the bottle in his mouth. As you can imagine, this isn't a good thing. Since he couldn't come home without being able to eat, we tried multiple things to try and stop the pain. They gave him medicine for reflux, changed his diet, and various other things, but ultimately we were faced with the choice to have Clancy stay much longer in the NICU, have him go home with an NG feeding tube (that goes down his nose into his stomach, like he'd had all along) or get Clancy a feeding "G-tube" which would require a transfer to the main Children's hospital and a surgical procedure.
We knew he needed to be home--so we needed to figure out which feeding option made the most sense for us. This was a difficult decision for us, but ultimately we chose the G-tube. I could go into a lot of details as to how we came to that decision, but I'll spare you the super long narrative. When we tell people Clancy has a feeding tube, most people tell us some story about someone they know with several severe disabilities and developmental delays. And I'll be honest, this was one of the fears I had in making this choice. But, they great thing is that this isn't Clancy. Aside from not wanting to eat because it causes his a lot of pain, his is growing and developing right on track--he's even socially advanced according to some. (I think this is from all the flirting he did with the nurses in the hospital, but who can blame the kid.)
So, to feed Clancy, we first offer him a bottle, which he will drink anywhere from 5ml to 45ml and then we will tube feed him the difference. We have more tests scheduled to figure out what is causing the pain when he eats, but in the meantime, it is getting better which is good. And I think no having a tube down his nose and throat is helping. We'll keep you posted.
A lot of people are curious, so I thought I'd show you some pictures of what it all actually looks like. Here is a picture of the "Tube" or "button". It lays pretty close to his skin and when we aren't feeding him, we don't notice it much. He can do tummy time, take a bath, etc. just like any other kid.
When it's time to feed him, we attach the tube extender. It locks into place and is nice as it doesn't leak or make a mess (unless I forget to clamp it before I remove the feeding syringe).
Here is the feeding syringe and our IV pole. Yep, we have our very own! I put his food in there, hook it to the purple connector above, and then gravity will help it flow into his belly. We don't know how long he will need his tube, but I am grateful we made the choice we did and happy to have him home.
Afternoon: Babies sleeping. Shhhhh....
4:30: Alyssa is home from school and taking a break by coloring.
5:30: Eating dinner with Nana. I wanted to make sure there was proof that we do eat something besides pizza.
Colin would rather have pizza.
Evening: Playing with babies.
As you ca see there's never a dull moment. Hope you enjoyed our day!
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