Monday, April 03, 2006

Being fed by a pump

Upon her first days home from surgery, unfortunately, Kaitlyn’s vomiting seemed to have gotten much WORSE after her g-tube insertion rather than better. We were devastated, distraught and extremely frustrated. On Friday, after talking to an on call-GI and taking K to a f/u pediatrician appointment, they decided that Kaitlyn should go on a feeding pump.

There are 2 ways to feed babies on feeding tubes, Bolus and Continuous Feeds. Kaitlyn has always been on Bolus feeds. Bolus feeds are the way a “normal” baby eats, they suck a bottle/breast fairly quickly (5- 20 min a session) and then don’t eat again for a number of hours. Preemies on the other hand have digestive/reflux issues in which bolus feeds can be a problem as their stomach’s cannot handle the v0lumne of food at one time.

A feeding pump allows for a slow drip of food into the stomach. It’s hoped that the feeding pump will allow for Kaitlyn to better handle the milk which will hopefully diminish the vomiting.

We started Kaitlyn on a feeding pump on Saturday. It was very frustrating, as the pump was delivered to us on Friday night, with no instruction what so ever. (The home health delivery company was supposed to have someone that could show us how to use it, but that wasn’t the case).

So Saturday afternoon Brian figured out what to do, and the Doc instructed us to try it out with half her food delivered over 30 minutes. Thankfully, it seemed to go fairly well. An hour later, we delivered the remainder of her feed (normally she would have gotten 130 cc’s every 4 hours).

It’s now Monday morning, and her vomiting HAS decreased. It’s not gone, and we are still feeding her over an hour versus continuous. There’s varying thoughts regarding feeding either bolus or continous. Long-term bolus is better, as it teaches the baby to feel hungry and want to eat, where continuous feeds don’t - but preemies have problems handling that much volume over a short period of time. Thankfully, Katilyn’s digestive system (bowels) have never had a problem, it’s more digestive (reflux) and air bubbles that cause her all the projectile vomiting we believe. In some ways, we still wonder how much she really has reflux, as the test she had back in the NICU showed that she didn’t, but she shows all the classic signs of reflux, (upset, arching her back, vomiting, vomiting an hour or 2 after her feed). She’s been on reflex meds now for some time, but I never really saw much of a difference.

Saturday, we found ourselves in a huge state of depression. It really set in that Kaitlyn’s eating issues are a long-term problem. People ask how she’s doing, and we say she is having terrible eating issues. I think people who don’t understand preemies think, “Oh, she’s isn’t latching on to my breast and is spitting up.” Instead our daughter projectile vomits everything you just worked so hard to get down, all over you, herself, the floor, the couch, what ever she is sitting on, it’s awful!

OK, it’s been about 1.5 hours since I wrote the above. Due to an extremely upset Kaitlyn and multiple vomiting episodes. She was covered in it. Projectile vomit, all over everything. I’ve changed her, and she’s finally calmed down. This all happened about ¾ of the way through her feed on the pump. This is the first time for me that the pump session went like this. Other sessions, she’s been calm throughout it and only threw up a little bit afterwards. It’s so frustrating.

On a positive note, we think that she is starting to somewhat reach for a hanging toy on her chair. Reading this, it sounds like she knows that she’s reaching, I wouldn’t say that yet, it’s almost like wow, there’s a toy, and my hand seems to be affecting it somewhat. We’ll see if this continues and she gets a bit more coordinated.

She still isn’t smiling, which babies should be by 3 months (which Katilyn will be tomorrow, 3 months adjusted, and 6 months from when she was born.)

Here's Kaitlyn being fed by pump (the pump is behind her), she's not looking very happy, this is her typical expression as an 'upset' episode gets started (which usually leads to vomiting)

Reaching for the toy (purposively? who knows)

Katilyn looking at the dangly toy I mentioned in the post above


Anonymous said...

Don't worry about the smiling! My mircopreemie didn't smile for a long time either. I think it was all the throwing up from reflux, etc. You have to think that even when they're not vomiting, they still feel icky. Makes sense.

Now she is almost 13 months adjusted and smiles and laughs like a maniac. Your daughter has catch-up to do on many levels, and she will! I do remember the reflux (we never tested for it) as the most traumatic event of the whole first year. It can be frustrating and terrifying and I am sorry you are experiencing this.

Anonymous said...

I forgot to add that none of the reflux meds did much for us either. -E

Charlotte's Mom said...

Hi Liz,
We learned from our GI that it is not uncommon for the vomiting to increase after the G-tube is inserted. Oddly enough, the G-tube can worsen the reflux. It lets the baby with reflux get nutrition, but it can (and with us, did) exacerbate the problem).

Once she gets used to it, maybe a month or so, you'll be able to speed up your feeds. We started with a full feed over an hour and still do that at night. Other feeds we base the duration on a) how bad reflux is at the moment 2) how much volume we need to make up.

We use Pepcid. Zantac stopped working, Prevacid made it worse. *Nothing* makes the vomiting go away. Sorry :(

Hang tight. Once you get a Zevex Infinity pump, you won't think twice about taking her out with a pump. I promise.

Ilene (Chicbean on P2P)

michelle flannagan said...

Liz- We were late on the smiling too, it did happen but late (with both of them). I hope the tube feeds go better soon. A lot of the reflux meds didn't work for us either. We're now on Prilosec and that seems to be working (even though she's already had the fundoplication surgery, she still has episodes of reflux).

The pump feeds are tough sometimes to figure out exactly how fast it should be done, it took us awhile to find the right speed. We did start small and worked our way up. We did continous feeds at night only, never during the day though, only if Anna was sick, and then only pedialyte. We did have a jtube which is different, since it bypasses the stomach. I do hope it gets better soon, I remember those vomit filled days too well. Take care, Michelle