Ok. So that's probably an exaggeration, but we WERE at the Dr with Riley for over 4 hours today. Had we been expecting that, it wouldn't have been sooo bad. But we weren't expecting that. So a long visit it was. But it was a profitable one we hope.
First off...the weigh-in. These always make me nervous and today was no exception. Riley is eating a full 10oz LESS a day than they would like. To be sure he has lost weight or at the very least not gained any. He averages 1 to 2oz a WEEK in weight gain, sometimes not even that. His last weight, on April 15, was 12lb6oz. Up 2 oz from the week prior. Todays weight???
Are you ready for this?
I cheered. I was stunned. Then I cheered some more.
How on EARTH has he had his best weight gain EVER when he's not eating like he should be?!?! More on that in a bit.
Next was the visit with the nutritionist. This was short and to the point. She basically feels it's best we stick with what the nutritionist at Duke recommends. Mixed feelings on this.
Then a Physical Therapist comes in and evaluates Riley for all sorts of stuff. The end result is he is a little delayed in a few areas, but not by much, and not enough to recommend any kind of special therapy (such as Physical or Occupational therapy) at this point. Overall, he rates at a 6-7 month old level, which considering his true age is only about 2 days shy of 7 months and his adjusted age is just over 6 months, this is right on track. So good news there overall. We got some pointers on the areas he's weak on, and we will be working hard with him on that. Considering the length of time he was in the hospital, the severity of the illness he had, the amount of effort his body had/has to do in order to heal from the infections and the current work of adapting to reduced intestinal function, they were tickled pink at how good he's doing! Even the areas he's weak on, he is still doing soooo much better than they expected he would be.
So after this part, another few people come in, which was of no real benefit, just procedure I guess, and then the doctor comes in. We were told we were seeing the Nurse Practitioner that runs the clinic. But one of our docs from the NICU who also works in the follow-up clinic made sure to be the one to check out Riley. Which was good, because I knew as soon as we mentioned that Riley wasn't eating well, he wouldn't let the somewhat wishy washy answers we've been getting from the GI team go any further than today. True to form, as I was telling him the latest news, he literally had his hand on the phone on his side, fingers itching to do the dialing to Duke. He got right on the phone to them and had a lengthy conversation, at the end of which, he explained some things to us that we didn't previously understand, and then also had some suggestions on where to go from here.
So this is where we are:
We KNOW (well....make that we are pretty darn sure) that the reason Riley is eating less formula now, is because we have introduced him to all these wonderful and yummy new tastes such as rice cereal (made with mommy milk -- yumm), and veggies. So now, that Pregestimil formula that he has to drink, that has ALWAYS tasted nasty, now tastes even worse because he KNOWS there are better tastes out there.
So we must feed Riley a formula that he LIKES the taste of, in order to get him to drink it. However, Riley cannot have plain old Enfamil or Similac or even some of the more special soy formulas. His gut simply will not tolerate them, and there would be no quicker way for him to land back in a hospital bed, than to feed him one of those. So...we have now entered the world of the TRULY special infant formulas. We are going to be transitioning him from the Pregestimil to Vanilla Elecare over the course of the next few weeks. As the name says, the Elecare is a Vanilla flavor, so hopefully he will be encouraged to drink more of it due to this. We will be mixing it at the 24kcal/oz ratio. Those of you who have recently gifted us with Pregestimil, never fear! It is still going to good use...it is going to be a slow transition, so Riley still has to suffer through the taste of it for a while longer. Slow changes with little guys such as him. IF he tolerates the switch, and IF this switch doesn't land him in the hospital due to intolerance (always a possibility), and IF he drinks an appropriate amount of formula on the Elecare, then that is what he will stick with. We will have to special order it from a pharmacy. And no, insurance does not cover it. But, if he eats it, eats the amount he is supposed to and GROWS well on it...it'll be worth every penny. That was another thought on the Pregestimil...he's growing better drinking LESS of it than what he should be drinking...he could be not processing it like he should be, even though it's not causing him any real visible issues.
So that is about all for todays appointment. I am still on cloud 9 over that weight gain. He may actually get a little bit of chunkiness on him after all!!
Some recent cuteness:
Having a chat with Bear
You've seen bear before....remember these?
Ummm, I don't think that is how that paci goes Riley! (he chews on the little tab on the back)
I can suck my toes!
Travis recently did some serious fishing at Pepa's pond!
I think that's all for today! Oh, and the blog header change is for Ms Kathleen! Thanks so much for all your kindness!!! :o)