Feeding update

We had feeding therapy on Thursday. It went well, I think.

I can't believe how willing and accepting Harlie is to her feedings. Getting her to take a drink is rarely difficult. Our struggles are with her belly - and that it just can't handle the volume. Well, that's our guess, anyway. The GI area of the body is a complete mystery.

Yes, stuff goes in, stuff comes out and when it works that's great. But when it doesn't, well, good luck!

I still can't wrap my head around why we've always had such an issue with volume control. To watch Cooper down an eight ounce bottle in mere minutes proves my point. Harlie has NEVER been able to have an 8 ounce feeding. She's three and a half and is getting just five ounces. And still throwing up daily - after reflux meds and surgical intervention!

We've determined that she's more likely to keep more down if we give her half a feeding orally (over 30 minutes) and then finish the feeding through the tube and feeding pump over the next 30 minutes.

So, on Thursday, Allison (her therapist) fed her an ounce of pureed sweet potatoes and two ounces of Pediasure. She did beautifully. But then threw up with only 4 bites/sips left. Ugh. But at least she got to see what I was talking about. After she threw up a good amount, she went right back to feeding and finished it. With no complaint.

Seriously? Who throws up and then goes right back to eating/drinking what they just threw up with NO complaints??? She is really something.

Well, the big news is that Allison said that she is going to refer her to the inpatient feeding program.

This means that she will send Harlie's name to the team for consideration for admission to the intensive feeding program. We have our meeting with the whole team on May 11th. So, I'll learn more that day about what they think. In the meantime, I guess they will talk with Allison and review her file or something to see if they think she's ready, too.

Basically, the intensive feeding program lasts 6-8 weeks. It is an all day program (8am - 3pm) where the child stays there for all meals, Monday through Friday. Yeah, it's intense, alright!

Allison said that they will be able to try all different kinds of food/beverage combinations/frequencies to figure out what works best for her. With as willing and cooperative as she is, we just can't let this opportunity slip by.

I know there is a waiting list to get a spot. But I don't know how long it is. Allison said that summer is a busy time since parents don't want their school-aged children to miss school.

So, we'll see.

It is pretty weird to think how far we've come. Admission into this program has been like a pipe dream for us. I would have never guessed that we would be here now. I don't want to get ahead of myself. We aren't there yet. But, this is certainly the farthest we've ever come!

Even though I am not a planner - I am aching to know when things are going to happen.

I called to get her next heart catheterization scheduled. Hopefully I will hear back on Monday. Once she has her heart cath then they will tell me when her next heart surgery will be. I just hope we can pull all this off without the times conflicting. And I want to give her enough time to recover before throwing her into the next thing. Especially something as intensive as this feeding program.

I would have scheduled this heart cath a lot sooner if I could have. But, with her bone infection, we had to wait until she was at least half way through the antibiotic treatment. More on that later.

Having things this big hanging out there is very unsettling. I will feel so much better once we have them on the books so I can start to "prepare" myself. Thinking about heart surgery again - after what happened in February - makes me shudder. But, avoiding it would only make it worse.

That's it for now. Thanks for reading!
~Christy