Failure to Thrive: Part 1

Time for a family update.

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5 day old Jake!

On the 18th, Jake will be 6 months old… which is kind of crazy when I take the time to think about it. A lot has happened in his little life. When Jake was born, he was 7 lbs 10 oz and 21 inches long. 97% for height. Joe and I were shocked. How did we average height folk produce such a future basketball prodigy?!

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He continued to track pretty tall for the first few months and was packing weight on like a champ. Which is a lot to say for a baby who is a champion spitter. I’m talking exorcist baby.

At each of his appointments, he was tracking well, hitting his milestones, etc. After the two month appointment, the next one isn’t for 2 more months.

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So proud of outgrowing his swaddle.

Jake was doing great. He was already standing up (assisted), trying to talk, growing out of clothes, all typical/normal things to expect was a growing baby. So when we got to the pediatrician on November 19th we were looking forward to seeing how much he had grown. Turns out… he hadn’t grown at all. In two whole months, Jake had only grown .25 inches and gained less than a pound of weight. The pedi wasn’t too concerned and gave us a prescription for Zantec, an anti-reflux medicine to help the little guy keep his food down, and scheduled us for a weight check in a week. One week later… some improvement! Looks like the meds helped him pack on a few more ounces. Just to be safe, they had us come back in two more weeks for another weight check….

And…. he got taller! But no change in weight. He was tracking in everything developmentally but just wasn’t gaining weight. So they sent us to Children’s Medical Center to meet with a gastrointestinal doctor to see if there was something more serious going on.

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Let me tell you… putting that infant hospital gown on my son was pretty surreal. I’ve known friends who have had to admit their children to the hospital for pretty serious matters and I cannot imagine the strength it takes to see your child in that place day after day. But for now, Jake was having fun in his new outfit and almost rolled over for the first time on the hospital bed waiting for the doctor to see us.

The doctor was super nice and kind. The said that Jake looked super healthy. He had chubby legs, was active, alert, engaging… all good signs. He actually wasn’t concerned about the weight… what he was concerned about was the height.

“Um… excuse me?”

You mean the one thing Jake has going for him? His height? How on earth could that be an issue? He then proceeded to tell us that while taking his vitals, they measured him and did not get the numbers our pediatrician did. In fact, they show he hadn’t grown really at all height wise in more than 2 months. Below you can see the highlighted dot… that’s what the hospital got when they measured him. As you can see, his growth pattern is a hot mess…. and it appears that he shrunk. height

The GI told us to meet with his dietitian after the exam to discuss feeding options and that he wanted to get full blood work done, a skeleton scan, and get Jake an appointment with an endocrinologist.

Jake had officially been labeled “failure to thrive”. It was quite a lot to take in.

We immediately scheduled the skeleton scan (the little guy got 23 x-rays taken) and the blood work done as well as started his new diet of highly concentrated formula during the day while I was at work. The endocrinologist couldn’t see us until April so we waited for the results…

X-Rays: NORMAL.

Blood work: NORMAL.

Which was a huge relief. Poor Jake had been through the ringer. He was getting Zantac twice a day. All those x-rays, his blood drawn. Being poked and prodded. On top of that he had a cold and had started teething. Not to mention the fact that we found out he was tested for alopecia… We were glad to be done with it.IMG_0429

And then the doctor called.

“His blood work looks good. All normal. But he did have elevated liver enzymes… now this isn’t something to be alarmed about necessarily. The liver processes everything in the body. So for example, the enzymes would be elevated if say he was fighting a virus [he had a cold]. But to be safe. I want to schedule him for a sonogram of the liver.”

You have got to be kidding me.

And so that is where we are. Trying to schedule a sonogram of a 6 month old’s liver. It’s really hard not knowing what’s wrong (or if there is anything wrong at all!). We’ve been tossed back and forth between doctors who all think something different. One thinks his weight is an issue but to the height. The other thinks the weight is fine, but the height is worrisome. Start him on solids early. “DON’T START HIM ON SOLIDS YET!!” “Everything looks normal but let’s just double check…”

Truthfully, this has all been exhausting and, ultimately, this has been a rough reminder that we are not in control. God is. The Lord knit Jake inside my womb. He knows every hair on his NOT HAIRLESS head (I swear he has eyebrows!). He has counted his days and knows exactly what is happening in his tiny little body. We can rest in knowing that no matter what happens. God is with us. We don’t know what 2019 holds for Jake or for our family but we know that we serve a good and loving God who knew 2019 before the he created this planet and that is a comfort indeed.

2 Comments Add yours

  1. Judy Hendry says:

    Ali. Did you see Dr. Megison? We know him personally and he is awesome. We are praying for you all. I know this must be stressful!

    1. ali_batir says:

      Hey Judy! We met with a Dr. Gurram. He was recommended by our pedi. Thanks for your prayers!

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