The NEW formula!!

I’ve been holding back until now to talk about the new formula that we’ve started for River. It’s been a completely amazing discovery for us. But first I have to go back a little bit to explain.

River began throwing up a lot when she was about 3 months old. The doctor’s only explanation was “reflux”. She was diagnosed with GERD. They put her on a PPI (Prevacid) and we began trying new formulas. At the time she was on breastmilk mixed with Neosure formula. Slowly over time my breastmilk supply decreased, and we had to go up on using formula. Her throwing up also got worse. It also caused her oral aversion. After her heart surgery in August, we finally got a long awaited GI consult. He recommended the most hypoallergenic formula, Elecare. They also wanted breastmilk completely removed from her diet, as maybe something in my milk was the culprit for her intolerance. Was it reflux or intolerance? Dr. Pickens has always referred to it as River’s Puzzle. We tried ruling out various things, like they gave her a gastric emptying study (nuclear medicine, horrible horrible test where they fed her radioactive formula and strapped her to a board for an hour). The study came back normal. They gave her a reflux frequency test, which required a tube placed down her nostril, just like the NG tube, which measured how many reflux events occured in a 24 hour period. This test came back without exciting results. She refluxed about 7 times in that 24 hour period, and they were non-acidic which indicated the Prevacid was working. That concluded their tests, and the rest was whatever other pieces of the puzzle that I brought to them. Her vomiting continued, it got a little better, but still a daily event. And multiple times a day if something made her retch, like oral stimulation.

I put my trust in these medical professionals, and I trusted that this was the best formula for her, until recently. Still she was throwing up at least once a day, and ever since getting her g-tube placed was having lots of gas in her tummy, and that would make her throw up too. I went on the hunt for another formula. Our GI doctor and nutritionist gave us Neocate to try as it was the only other formula they had in their case of magic formulas. That turned out even worse. So back to the Elecare. Elecare has also always made her have really runny stools. This always baffled the doc because he said normally it causes constipation. Another little red flag.

ALL powdered formulas on the market are made of corn products: corn syrup, corn starch. And lots of it. I wondered if it was that she was reacting too. We, as a family, usually ban all high fructose corn syrup products and the like. There is one formula out there made of rice syrup. I couldn’t wait to try it!!! Within a day or two of trying it, no vomiting. Less gas. Magic had occurred. But after a few days of trying it, she vomited. I was bummed. And then she got a cold, a bad one, while we were in Utah. This made her throw up A LOT! All the mucus, snot, coughing and sneezing would trigger her sensitive gag reflex. We waited this out with hope. After the cold passed, the vomiting got less and less.

We have had her on this for almost a month now, and her system has changed. She no longer has phantom vomiting episodes. She might spit up on occasion, but it actually looks like spit up, not ounces and ounces of stomach contents. She burps more like normal. If we have to vent her, there is gas in her tummy, but not a lot. And her stomach contents have begun to look like what one would expect, like digestion is taking place. Also not to mention, due to her improvement and some adverse things I’ve learned about PPI’s(Prevacid) I’ve taken her off this acid-blocker medication. PPI’s can cause problems in bone density and bone growth, and one doctor has recently done a study on it adversely affecting growth in babies. SCARY.

Now that it’s been a month I feel free to tell every one that it’s working!! Her poop is even normal!! It’s funny how parents get about poop, but if you are a parent then you know what I mean.

So, last Friday, we had our check-up with the GI Clinic. Dr. Pickens, and Judy the nutritionist. They were both excited to see that River was doing better. I believe they were both taken back a bit by my proactive approach, but screw ’em. I’ve put my trust enough in them only to still not find the answers. I had to find them myself. But none-the-less, they were pleased that River is on the up and up, and they agree that it must have been an intolerance to the corn products. River’s growth stats though were a bit down on the curve then the previous visit. I hope this is just temporary, and maybe due to her throwing up so much for a week when she was sick. We are also beginning to feed her organic food straight into her tube. Once or twice a day I am replacing a formula feeding with a watered down puree (and a scoop of formula) and syringing it into her tube. This way her body can start to eat real food too! So far this has gone really well. We make sure to also let her smell and taste the food we are giving her. Surprisingly the other night I let her sample the spinach & potatoes I was feeding her. To my shock she actually swallowed the little bite without a grimace or a gag! I could cry I’m so happy. And I couldn’t be more thrilled about this company and their formula: http://www.naturesone.com/

My feisty little non-eater

River’s feistiness has been shining through lately, and it has always been talked about since the day she was born. The NICU nurses were pleased to see how “feisty” our little 3 pounder was, it was a good sign. And I believe that her spirit has helped her through her many challenges. Lately, she is very adamant about what she likes, and what she does not. And strong, her little arms are strong when she forces our hands away from her mouth! Here is a video of some recent feeding therapy sessions. She is being pretty defensive lately with food, and I am having trouble with getting the purees in there! She is willing to teethe on a biscuit every now and then, and I am constantly handing her foods to play and experiment with.

My little feisty non-eater, River Belle. How we love you so.

The New Mic-Key

Yesterday, 1/11/11, was a very long but very good day at the doctor’s! River had two big appointments. First was a short sweet visit with Dr. Escobar as her surgical mic-g tube was switched out for the mic-key button! River was not happy about it, but in the end, the switch went well, and now she has a tiny little device in her tummy, and both of our comfort levels will go WAY up!!

Here is a close up with the feeding tube attached, during a bolus feed.

And here’s our sweetie with just the button! Nice!