Saturday, May 23, 2015

Starting Solids

For the past month or so, Ezra has been showing interest in food. I've let him taste avocado & banana so far but he wasn't really excited about eating.
Yesterday, he had an appointment with OT & we tried feeding him avocado with breastmilk. He was obsessed. Like trying to grab the food and lunging at the spoon obsessed. It was great.

So today was day two of solids. He's still loving it. I made a batch and stored it in small plastic containers, I think there's about 6 with two teaspoons each. Here he is today:

The next foods we'll be trying are carrots or parsnips, depending on which I find. I've got a whole list of what we'll try after that. I can't wait to see how he reacts to different foods. :)


You'll notice he has no ng tube...
look at that face. ugh I love him.
It was out when we woke up yesterday morning, I replaced it to feed him, and then he threw it up. He eats more by mouth when the tube is out, but not quite enough. The spikes on the following charts are days with the tube out:
Unfortunately, he still only eats about 30% of his total volume, which is no where near enough.
Anyways, I'll probably replace the tube at some point today. I'm working on a post about our ng placement routine. I'm excited about it because I only found a few posts about it when Ezra first came home with tube, and they were way more helpful than the majority of the things I learned from nurses/doctors about tube placement.

Thanks for reading!

Monday, May 18, 2015

An Introduction to Ezra

Hi! I'm excited to start this blog. It'll be a good way for me to document Ezra's life, health, challenges, and what not. Maybe even help out families with similar circumstances! I wish I would have done this sooner.

Ezra is 5 months old and was diagnosed with Tetralogy of Fallot with Pulmonary Atresia at birth. He's gotten the majority of his food via an ng tube since he was only a few days old. He was born weighing a healthy 9lbs 2oz, so his weight has never been a problem. However, he has never been able to be off of the ng tube.

Here he is at about a month old & now:

Although Ezra hasn't been able to take full feeds, he has always been able to eat very small amounts fairly well. He's eaten anything from 5 mLs to 105 mLs with his average being 20 mLs to an ounce. 

We always thought that after his open heart surgery he'd have more energy and feel better, allowing him to eat completely on his own. Unfortunately, the surgery came (April 8, 2015) and went with very little change in his feeding habits. 

More recently, his feeding has gotten even worse, which can attributed to the fact that he is becoming more and more aware of his ng tube. He hates it, and it's worsening his oral aversion. 

He now goes to weekly feeding therapy, which isn't super helpful because the therapists think he's too old to relearn how to take full feeds. I don't believe that, and I refuse to give up trying.  He will also be getting a g-tube in the near future. I'm sad about that because it just seems more permanent and serious.. But I know that it's what he needs & it will be good for him.

I'll try to update this blog weekly, maybe more often if he has any appointments of notable things going on. Thanks for reading! :)