Unexpected news

It’s been cold and rainy the past few days so we didn’t do much this weekend, just stayed nice, toasty and dry at home. But today we were forced to take Natalia out since she had a follow up appointment with her GI doctor. So I bundled her up to face the cold (no hat of course).

She had an upper GI test a few weeks ago and we were given the un-official results then and there that her Fundo is holding up perfectly. We were thrilled and that’s what we were expecting to hear in today's GI apointment, so it was a complete surprise to hear the other news her doctor had for us: Natalia has a hernia in her tiny stomach!! The doc thinks that the hernia developed now that she's spending more time sitting than laying down. That extra weight bearing in her stomach may have caused her stomach muscle to rub with her gtube and caused the hernia. I was in complete shock... I just never new this could happen. . My only comfort is that I don’t believe Natalia’s in any pain, she can communicate pain really well. There really isn’t much we can do now so we’re just going to observe her and see how she does and evaluate if surgery in needed. I'm praying she doesn't, last surgery was tough on her.

She isn’t gaining a lot of weight either; she only gained about 6 oz since Dec. But I now that she’s on her own agenda with that as well… although she still is plotting very well in the CdLS height and weight charts, so I’m not going to loose any sleep about this. She's the pink dot.

Her stats at 17 months: Weight 15lbs; Height 25.5 inches. and 100% CUTEPIE!!

Up, up ...and down

I’ve had a loss of inspiration since I lost my camera two weeks ago :( … and no, I haven’t bought a new one just yet but I wanted to share how Natalia’s feeding was going.

On Natalia’s appointment with her GI doctor about 6 weeks ago, she said she was time to change her feedings from Isomil to Nutren Jr, a more calorie rich and age appropriate formula. She gave us the game plan: transition slowly with just one feeding a day, and every 2 days change a feeding until she has 120mls of Nutren for her 3 day bolus feeds. Monitor her for 3 days after that is done, and if that goes well then change her 250mls at 30ml/hr continuous night feeding. If everything was still ok then we could start slowly upping the bolus rate to have Natalia finish her day feedings in 30 minutes instead of 1hr 15 mins.

We followed the exact instructions, and it went very smoothly… soon we were upping the feeding rate slowly 5mls per day. We started at 90mls and moved steadily to 130, our goal was 200mls an hour. We were transitioning like experts! Yayyy!!

Then one day Natalia was fussy and extremely gassy, her stomach was extended and she has having a lot of residual (the formula that comes out of the gtube if you vent it). We had celebrated too soon. After calling her dietitian she confirmed that Nati wasn’t tolerating her feeds, and we should slow the rate down, waayyyy down. So that’s what we did, all the way down to 75mls!!! So Natalia was taking almost 2 hrs to finish her daily feedings. We are SLOWLY bringing the rate back up, and after 2 weeks we’re at a 100mls/hr rate, this rate seems to be working well for her, so we’re letting her stick to it for a while before we try to up the rate again. What’s important is that she’s getting the food she needs with the least discomfort.

I'm not counting my chickens before they hatch again...