Am I doing it wrong?

So, When did Toby become disinterested in eating?

I get asked that question all the time.  From every new provider we see.  The answer is simple, he has never wanted to eat.  No matter how much really bad-for-you-good-tasting stuff we offer (or really good for you food too), he has never really been fond of a traditional meal. How is it possible that this is MY child? 

Falling off the Curve

Toby was 5 lbs 9 oz when he was born on April 10th, 2012. Tiny by newborn standards, but not too small to need assistance; he was born considered full term, at 37.5 weeks. He had no health issues.  I remember in the hospital, trying to get Toby to eat his first bottle, and he couldn't have been less interested.  

Wait, what? No book I read prepared me for an infant who didn't want to eat?  Did I skip a chapter? 

The doctors almost wouldn't let him leave with me because he wouldn't finish 1 ounce of formula.  It was only after I begged, and Toby was force fed 29 ml's (1 ml away), did they allow him to come home on day 5.  Despite the early problems, his pediatrician (Who I LOVE) wasn't that concerned, and assumed that when Toby got home and relaxed a bit, he would get into the groove of things.  When he left the hospital he weighed 5.2 lbs. 

Having been a first time mom, I had no clue what I was doing.  No clue what to expect, and every reason to freak out about everything.  He hadn't gained much his first check up, but he had gained, and that was what was important.  He continued to gain VERY slowly, but steadily, making his own curve in the 4th percentile. 

First Doctor Appt 

2 Weeks

1 month  - 7.2 lbs 

I'm not going to lie, T was a difficult baby.  He was fussy.  He needed attention.  And he spit up - A LOT.  In hindsight, i'm thinking I fed him too much.  Mistakenly thinking he was hungry, but now knowing his disinterest in eating - I was probably the cause of his misery.  

"Am I doing it wrong?"  I can't imagine any new parent that hasn't asked themselves that question, but for me, it was a constant.  Why can't I figure out what my child wants?

One thing that was VERY evident early on, Toby liked his naps.  He loved bedtime, and often slept with a smile on his face.  He slept 12 hours straight - often times more than that, by 8 weeks old. 

At his 6 month visit, T weighed 13 lbs, and the doctor started asking questions.  Toby had gained each check up, but this time, it was minuscule.   After we talked for a while, he reassured me that once Toby started eating more solid foods, his diet would round out and take on a more normal structure.  "Babies can be tiny, that is not a problem.  Every child eats at their own pace.  As long as they maintain a curve, even if its their own curve and not in the standards, that's what's most important."

Over the next 3 months, Toby gained 1 lb. And that's when he took the plummet, (Picture Thelma and Louise style) off the curve. 

Toby after his 9 month visit - 14 lbs - wearing 3 month clothes with the sleeves rolled up. 

I remember at that appointment, asking for more time before we did testing.   Even though I knew he wasn't "normal", I wasn't ready to accept the fact that something could be medically wrong with him. 

"I can get him to eat, I swear.  There isn't anything wrong with him, Its me, I'm doing it wrong.  I just haven't made the right food, or fed him at the right time?!  Right??"  I remember vividly the days before each weight check trying to my best to get him to eat loaded mashed potatoes, anything with cheese, even ranch dressing.  It was met with blank stares. How is this my child?? I like to go to restaurants just because they have good ranch dressing!. 

Right around this time, I should mention, a new surprise made itself known.  

When Toby was a mere 8 months old, his sister was conceived. *Insert uber- emotional- hormonal-pregnant- mom melt downs here*.  I had wanted to have my children close together, but how could I focus on my son's health when I have a fetus to take care of.  What if this baby doesn't grow either.  Why now?  I think I've answered that question, but I'll wait for another blog to elaborate. 

Let's just check a few things to be sure.....

At one of our check ups, we talked about next steps.  We're just going to do some testing to be sure. 

To be sure. About what. Tell me that something serious isn't wrong with my sweet tiny boy.  

The words Cystic Fibrosis spewed from the doctor's mouth.  Noooo, that can't be right??  I know that disease.  That's not good.  That's really not good.  *Hormonal Mom Breakdown Now*. 

"Let's just check to be sure."

  Sweat Test

That happy face, the one above, that's because the test was negative.  And my pediatrician called me on a Tuesday at 10 pm to give me the results - because he KNEW i would be panicking about them.  He was right.  The relief I had was indescribable. 

Additional blood work came back normal.  And so the wait began.  For more signs of something.  For not so good well checks.  For something to happen to lead us down a new path.  And eventually, it did. 

He just stopped growing altogether.