Wednesday, February 23, 2011

Failure to Thrive

Those that follow me on Twitter and of course family and friends that are on Facebook already know about what's been going on this week... for the rest though, here's an update - thoughts and prayers for us and little Jay are much appreciated!

As I mentioned over the weekend, we switched Jay to formula as at his doctor's appointment on Friday showed that he had LOST weight rather than gained any and the doctor wanted us to supplement with formula to see if that would put the weight on him, thinking maybe my milk supply just wasn't doing the job.

Well first thing Monday morning we went in for a follow-up again just to see if the formula was doing the trick... well he hadn't lost anymore weight, but he didn't gain any either, holding steady at 6lbs, 1oz, which was the same as his hospital discharge weight after he was born.

Our doctor said that wasn't acceptable and had his receptionist call over and get us admitted at the hospital so they could look into why he wasn't gaining any weight despite us feeding him every 2-3hours.
Jay with feeding tube & pump
Well, Monday we met with the pediatric doctor here who explained that it's possible Jay just has what is called "failure to thrive" meaning that for whatever reason he just "got behind" and hasn't seemed to catch up. He looked him over and said that Jay appears to be completely healthy - he was very impressed at his strength too, despite his small size, and how well he was already holding his head up! They ran another renal ultrasound on Jay just to check and make sure his left kidney (the enlarged one) hadn't grown any in the past 2 weeks, possibly putting pressure on his stomach causing it make him feel full when he actually isn't, and they drew some blood for some blood work tests too. They also had us feeding him formula via a bottle and then pumping the rest in via a pump hooked up to his feeding tube, as he needs to be eating 2.5oz per feeding to get in the calories he needs to grow (at home we were doing good if we could get him to take 1oz per feeding - getting anymore than that into him before he fell asleep or spit it up was rare!).

About 1am on Tuesday we had a bit of a scare too - Jay started spitting up and coughing up A TON of mucus! It was really scary as at one point it seemed like he was choking trying to cough it up and the nurses had to suction a ton of it out of his noes and the back of his throat... seemed like it was taking forever to get it to stop coming up and yeah... it was just really scary!

Tuesday morning we had the results of the ultrasound, which came back fine - his kidney hasn't grown or changed since so that's not the issue, and all the tests they did with his blood came back fine as well. They suggested we do this barium x-ray where they mix barium in with formula and feed it to him and watch via an x-ray to see how it's going through his system, down his throat, into his stomach and through to his intestines, making sure there's nothing blocking or obstructing the flow that would cause him not to eat much or spit up when he eats more than a certain amount. That came back fine though too - nothing abnormal, everything was going through him fine.

He kept his 11am feeding down pretty well but spit up most of the 2pm feeding. They hooked him to an IV bag with formula in it that is slowly continuously pumping the food into him via his feeding tube. He spit up a little at 8pm and again at 130am. I fell asleep around 3am and they said he spit up again at about 4am so they turned down the amount he was getting per hour from 20ml to 10ml and he hasn't spit up since (as of 930pm Wednesday night).

Today (Wednesday) we had a pediatric GI specialist come in and take a look at him to see if she could think of any other reason that what we've already ruled out that could be the cause for this. She said the same thing the pediatric doctor did - he seems perfectly healthy! She said it just seems he "got behind" and needs the push to get him to eat more and hold it down. She also increased his calorie intake from 24 to 27, so it seems like going back to breastfeeding won't be an option for us as he needs high calorie formula to catch up and push his growth.
Keeping calm in mommy's arms with his
binky while continuously being fed via
feeding tube.
The pediatric doctor said that for tonight they're going to keep him on the continuous feeding to see if he continues to grow more (he's gained 4oz since we've been here, now at 6lbs 5oz, up from 6lbs, 1oz) and then tomorrow we'll try giving him a bottle again and pumping in what he doesn't finish every 3 hours to see if he can stomach it now that he's been having it continuously going into his system for over 24hours. He said we'll be here at least through Friday if not through the weekend and it's possible they might send us home with his feeding tube still in him so we can give him a bottle and pump in the rest via a syringe - hopefully he does well enough though the next few days with the bottle though that we won't have to do that. He also said the feeding tube can last for several months before needing to be changed out, however he said he doesn't see Jay needing it for more than a few weeks after we go home if at all. He also said that they'll leave us alone as much as possible, meaning they won't be doing anymore tests or poking/prodding of Jay unless there's an absolute reason for it as he'd rather just see how he takes to the feedings.

I must say though, this pediatric doctor has been great! I like his approach of let's not do anything unnecessary when it comes to the testing and all that and he's very easy to talk to - I think when our family doctor retires (we believe he's in his early-mid 60s) I might try to see if we can get on under this guy.

Jay has been quite the little trooper too, taking everything so well! Sure, he cried when they put the feeding tube in (which was hard for me to watch too) and got a little fussy near the end of them drawing blood from his heel and at the end of the ultrasound and while they took the big scary x-ray of his belly, but for a barely 3 week year old he's been doing very well! He's been sucking on his binky quite a bit too, using that as his security item it seems, as Monday while everything was going on he was sucking on it like crazy while holding onto my finger. He had a little bit of a crying fit earlier - nothing seemed to comfort him for about 10 minutes, but then he was fine - I think he's just a little stressed, having to be back in the hospital and hooked up to a machine with nurses coming in throughout the day to check his vitals... I don't blame him for having a good cry - the situation sucks.

My mom's been coming up during the late morning and staying through the afternoon so I can get a nap and shower in (I've only been getting a few hours of sleep at night here in the hospital as I don't want to leave Jay alone up here - he's too little and only a few faces are really familiar to him) while hubby's been coming up after work in the evenings and staying til around midnight - fortunately he took this week off as his vacation from UPS as we were expecting Jay to be born this past weekend so he doesn't have to rush off to his night job this week.

So that's where we are with things - we'll be here at least through Friday, possibly through the weekend, all depending on how much Jay grows and how well he does with the bottle the next few days.

Thanks in advance for your prayers and thoughts - hopefully things continue to progress and get better and he's able to eat as much as he should be on his own!

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