Failure to Thrive

"Be careful around the baby....."

My husband and I hear these words all the time.  No, they aren't talking about our 5 month old, they are talking about Toby, when he's running around a play-yard with other kids his age. Once, I even felt the cold stare from another mom  - as if she was reprimanding me for letting such a little baby play with the big kids. I could hear her thinking - "Its not my kids fault if HE gets hurt."  I try not to take these non verbal cues too personally. They don't know how old he is, and from the looks of it, Toby looks like your typical almost 1 year old.  He tries so hard to keep up, and climb the same obstacles, only to be met with the dust left behind from the "older" kids.  This makes me determined.  When Toby is old enough to understand - He will NOT be afraid to keep going.  I will NOT let him think he is any different. He will know he is loved UNCONDITIONALLY by his family, despite any non verbal (or verbal) signs he receives from others.  He will forever be raised that it is the size of your heart and not the size of your body that matters.  

Awww, was he a premie?...And other questions......

Its comical to me when we go to the doctor and Toby waddles around, noticing all the attention he gets. First off, he's a charmer.  When those big baby blues suck you in, its hard to look away. (Trust me, there are many nights spent by me utterly lost gazing into them - I'm sure his grandmas agree too). 

Toby 22 months - 18 lbs - 9 month clothes

The question comes, every time...

"He is so cute! How old is he?"

When I tell them his age, you can see the wheels start spinning.  You know they are caught off guard because they were MONTHS off of their guess, if not a year.  And usually, its followed with - "Awww, was he a preemie?"  Again, I can't be mad at a question like that.  If I were in their shoes, I might have assumed the same thing. (I wouldn't have asked it, but would have thought it none the less :-) )

Every time I'm asked that, for a split second, I think - I wish he had been.  Before you react, I don't mean it in the way it sounds.  I can't imagine the trials and tribulations of taking care of a preemie, nor am I comparing or suggesting that Toby is comparable.  What I mean is, I wish I had a reason.  An excuse.  Something easy to tell people.  How nice would it be to say, Yes he was - And look how happy and great he's doing now!  End of conversation!  But alas, I typically respond no, and the conversation steers into some awkward pause and we move right along. How do I explain why my child is half the size he should be?  Do I have to? 

Toby enjoying ice cream on his first birthday - 15 lbs - 6 month clothes

Enjoying presents bigger than himself at his first birthday party.  I ordered this 6 month Reds outfit online  - Big Mistake. 

With his good friend Austin - Who is just 5 months older. 

With one of his cousins, who is also 5 months older. 

Toby didn't sit up by himself until he was 8 months old.  He didn't crawl until his first birthday.  And he didn't walk until we brought his sister home at 17 months.  He is a smart little guy - saving it for a time when he needed to get all the attention back on him.  The other day at the same said doctors office, Toby was minding his business toddling around in the lobby, when he approached a sweet older lady sitting and waiting.  She smiled a warm grin, like they all do, and Toby says "Hi!!", in his tiny high pitched voice.  Her eyes got wide and she said, "Well, I didn't expect that to come out of your mouth!"  Its easy for me to forget that a child who appears his age shouldn't be saying the things he does.  If again, I put myself in her shoes and saw a 9 month old toddle over to me, I certainly wouldn't think he would say hi to me either.  Having said that, it always seems to trigger a laugh, or an even bigger smile, and I smile - because I know he will have this effect his whole life.  I can't wait to experience those as he grows. (And I can't imagine the difference I will feel when he starts to date - Oh Brother). 

The Riddle Effect

Much like I see wheels spinning in the minds of folks who hear his age for the first time, I see them spinning in the minds of the doctors we meet.  

Let me start by saying his pediatrician is a blessing.  He has given me 4 numbers to contact him at- Day/Night/Weekend.  He draws me pictures when I have a lost look on my face. He tells me, He actually tells me, I'm doing good.  That my husband is a good father.  He takes the time to empower us and relate to us, and for that I am so grateful.   As I have mentioned before, at 6 months he began to worry and at 9 months the tests began.  First it was cystic fibrosis, and I'm sure a lot of other worse assumptions that needed to be ruled out that I wasn't made privy to, something I'm happy I wasn't aware of.  (No need to upset me until I need to be, right?)  

At each visit, I have a list of new things I ask him - Me playing doctor based on the things I read on the internet.  I was am a clinician's worst nightmare - Web MDing all night when I can't sleep. They should make that a verb for all us crazy mothers out there. I pretend my 12 years working in the healthcare industry provides some extra clues as to whats going on. (I work with medical record software - This provides me no added knowledge. I'm a computer geek.  C'mon Lindsey - pull it together!) Each visit, after I read to him my new list of rare diseases or allergic reactions - He just smiles a warm smile and nods his head - "Yes, it could be that..."We will get there, we will find out, I promise."  He doesn't laugh at me, or reprimand me, or strangle me (Like I'm sure he want's to), he just lets me do my worried mom speech, and continues with the visit.  Even though I know what he is going to say, I am softened by his response, every time, and I relax for a few.  His nurse Linda is also wonderful.  She knows me by name now, and has gone out of her way numerous times to make my life easier.  Thank God for these little moments. 

His ongoing diagnosis is Failure to Thrive, along with additional randoms like poor weight gain, feeding difficulties, yada yada yada.  Failure to Thrive - what an awful thing to see typed on your discharge instructions as you read them on the ride home.  I remember the first time I read it I started to cry immediately.  Why can't they just code it something a bit softer - like, "Tiny little bugger" or "Itty Bitty ole thing".  I mean, wouldn't that be a little easier to look at for us crazy parents?  Wouldn't you save yourself the misery of sopping up tears every time you say those words in the office?

Between 12 months and 16 months Toby gained almost 3 lbs, this was a huge feat by his standards.  Then he just stopped.  You would think that would make him look like a 16 month old, but even at that age, he was the size of a 9 month old.  His statistics dropped from being in the 4th percentile, to falling completely off the chart.  He's not even on the grid.  My doctor doesn't bother showing me anymore.  The last stat we got before the decent off the driftwood into the great deep black ocean of numbers and decimal points (Think Titanic - "I'll never let go Jack"...Drifting down into the sea) was 0.025%. For those of you who aren't good with numbers (MaryJane), this translates to:

Out of 1,000 children his age, he is bigger than .025 of them.  

16 months - 18 lbs.  This is also his current weight.  

For your Reference, here are some averages for boys from a reliable source.  Please keep in mind most charts vary by 1-2 lbs.  The CDC's chart actually states that Toby's current weight should be 31 lbs.  

Age		Average Weight
New born		7.16 lbs
1 Mth		9.15 lbs
2 Mths		10.91 lbs
3 Mths		12.56 lbs
4 Mths		14 lbs
5 Mths	Toby at 1 year	15.43 lbs
6 Mths		16.53 lbs
7 Mths		17.64 lbs
8 Mths	Toby from 16 months to present day 23 months old	18.74 lbs
9 Mths	Give or take 1 lb	19.62 lbs
10 Mths		20.28 lbs
11 Mths		21.05 lbs
1 Yrs		22 lbs
13 Mths		22.27 lbs
14 Mths		22.82 lbs
15 Mths		23.26 lbs
16 Mths		23.7 lbs
17 Mths		24.14 lbs
18 Mths		24.58 lbs
19 Mths		25.02 lbs
20 Mths		25.35 lbs
21 Mths		25.79 lbs
22 Mths		26.12 lbs
23 Mths		26.57 lbs
2 Yrs	Where Toby should be in 3.5 weeks	28.4 lbs
3 Yrs		33 lbs
4 Yrs		35 -37 lbs
5 Yrs		41.8 lbs

At the age of 15 months, his first Endoscopy was performed.  This is when a small camera is inserted through the mouth and they look at the upper digestive track.  They were looking for signs of reflux, or an allergic disorder like Celiac Disease or EEG. They obtained additional blood work for evaluation.  When the results came in, they were both good and bad at the same time. Nothing.  Nada.  Zilch.  Nothing to point them in any direction what-so-ever.  Everything was fine.  I guess I'm supposed to be happy to hear this, right?  At that same visit we were given the results, it was decided that perhaps this was a behavioral issue, that needed to be addressed with Diet and Speech Therapy.  (I didn't know at the time, but quickly figured out, speech therapists also assist with problems of eating, chewing, and swallowing.)  At this point, it was all we had to go on, and I was all to happy to oblige.  I will try anything to get this kid to eat. 

We met with nutritionists and speech therapists.  I was given a list of foods that I needed to incorporate into his diet:  Heavy Cream, butter, whipped cream, peanut butter, greek yogurt, avocado, cream cheese, cheese, chocolate, fried foods.  Anything you learned in parenting 101 about a diet for your child - do the opposite.  That's what I took out of our meeting.  I remember hearing - get as many calories into him as you possibly can, and lets see if he starts growing. We will address the picky eating (ie. Not eating veggies whatsoever) when he is older and can conversate. At 12 months, he had transitioned off of infant formula to Pediasure. Thank god for this miracle elixir, which is keeping my child alive.  Because in essence, Toby told me to shove that list the nutritionist gave me where the proverbial "Sun don't shine."  He wasn't having it.  

Am I in some Twilight Zone here?  My child doesn't want oooozy, buttery, creamy, peanut buttery, chocolaty goodness on everything? Most of the time, I could get him to try a bite, but that would be it, nothing more. 

So what does he eat, you ask?

I was asked to keep a food diary to document his diet for 3 days.  She handed me a freshly printed stack of papers, each with a grid filling the whole page where I was to log his intake.  I giggled to myself thinking, we just wasted 5 of these pages because I'm only going to need 1 sheet.  

Toby's typical Daily Intake 

Time	Diet
4am- 6am	Toby wakes up and wants a “baba”.  This is usually 4-8 oz’s of Pediasure Vanilla.  He goes right back to sleep.
9am	BREAKFAST – Cereal: 5-10 pieces of Cheerios or Chex
11am	SNACK  - 1 bite of a cracker or 1 bite of bread
1230	4-8 ozs of Pediasure Vanilla before a nap
4pm	SNACK - Half of 1 Belvita cookie or 4-5 pretzel sticks
630pm	DINNER – 2 spaghetti noodles OR 1 cocktail wiener OR 1 French fry
8pm	8 oz of Pediasure Vanilla – Don’t try another flavor or the most god-awful tantrum will ensue.

Its true, some days are better than others - but typically those days, are days he vomits.  I'm sorry I've gotten to a gross part of this topic, but its true. Toby empties his stomach, a lot.  So much so that I've started a calendar to show his doctors, because I'm not sure they believe just how much he throws up.  These phases usually last 4 or 5 nights in a row, then stop for a few weeks, then come back.  Usually, he vomits once a day, right before bed, then goes about playing until he falls peacefully asleep.  This past January, it was rougher than usual.  

This occurs so frequently that I can see just by the look in his eyes when its going to happen.  I swoop him up and run to the kitchen, perfecting my stance and the trajectory into the sink.  Clean up takes a few minutes, and he is back running around.  Only when he vomits in the middle of the night and my heroic arms can't get to him fast enough, will it upset him.  These nights are hard.  These weeks our washer and dryer run non stop.  These weeks Mom and Dad worry more than usual.  

We are referred from specialist to specialist.  Each meeting starts with the same questions, and we can tell when they walk into the room already deducting what's wrong with him.  I can see their thoughts - "Ah, I've seen cases like this before, its just going to be ..... *insert some random illness here*.  Its only when our interview ensues and Mom and Dad don't answer the questions they way they thought we would, do you see an eyebrow go up.  You hear a sigh, or see a scratch of the head.  Its something I've said, isn't it.  Something I just said made you change your mind about his diagnosis completely.  We're shuffled off to get stuck again, and the sweet child life workers try their best to calm his fear by shaking glow sticks, and tinker toys, and IPAD games in his face.  It doesn't work.  He knows by now whats happening.  He gives me that look that is all too familiar, and by now I really feel he understands my gaze back.  Just be strong buddy - it will only be a few minutes - and we'll be back in the car with blanky.  

The results come in, we meet again, and the riddle continues.  No further in a direction.  In the days that have passed, no light bulbs have gone off.  Its still complete darkness. 

These visits kept going, until the last one.  This last appointment just weeks ago, when FINALLY something happened.  Something that chills me to the core reliving.  Something terrifying to think about.  And results that hopefully will provide some answer or direction to this riddle once and for all - One can only hope. 

Thank you for Listening, 

Lindsey