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   Tuesday, March 15, 2011  

Sunday night we had the scariest moment since leaving the NICU behind us more than five years ago.  The lowercase came into our room at 2am saying he was cold.  He got into our bed and asked to be covered up and immediately fell back asleep.  When we covered him, he wasn't just cold he was cold.  As cold to the touch as he was the day we had to return him to the NICU as a baby.  His first temperature readings (we took one, then tested the thermometer on ourselves to be sure it was working, then him again) were 95.6 and 95.9.  Mr. W called the pediatrician while I pulled the lowercase, sleeping in just a tee shirt and underwear, the same as me, up onto my body, wrapping my bar legs around his and sliding his arms inside my shirt and cocooning us both in blankets.  In the 30 minute span between wrapping up like that and leaving a message for the doc on call, his temp came up only 0.5 degrees.  He was still just SO cold.  We were told that because of the lack of any other symptom at all and because his temp was above 95 degrees, that a trip to the ER in the cold night would be more risky than beneficial.  However, we had to get that temp up NOW.  So at nearly 3am, I woke my son up, got in a warm bath with him to both hold him up and hope that my body heat would help him warm up faster.  Mr. W put a towel, a blanket and a pair of flannel pajamas in the dryer to warm.  After 30 minutes, his temperature was finally back to normal and the doc on call said to call for an appointment in the morning.  He slept with me, bundled up and snuggled close and his temp remained normal all night and throughout the day Monday.  Our appointment was scheduled for 5:20 in the evening, so we just waited not knowing what had caused the temperature drop.

I don't know really anything from the appointment.  His temp was a bit low there, but not something that couldn't be "normal" - roughly 97 to 97.5 degrees during the appointment.  The ped was concerned about what happened Sunday night, but lacking any symptoms of anything else... there just isn't anything we can logically think of to test.  He said that since this isn't something that one generally sees, he wouldn't know how to go about testing or whom to refer us to fora hypothermia workup.  We discussed that he is extremely thin -- he weighs EXACTLY what he weighed in October at his 5 year physical.  So was Sunday night's episode related to some asymptomatic viral or bacterial infection that he's fighting off?  Or was it kind of a "perfect storm" of conditions that allowed a child with a BMI in the 3rd percentile to just ... get cold?  When he had a temp plunge as a baby, it was assumed it was conditional (it was December, very cold, and he was a VERY tiny baby) and that his lack of body fat made it that much harder to raise his temperature once it had dropped.  So is this the same thing?  Or is it just a weird fluke...something that just happened?

Which led us to the fact that he doesn't seem to gain fat and that all weight gain seems to be in correlation to height gain (as it was in the NICU; which, again, was assumed to be the cause of his temperature instability that kept him in the isolette far longer than we had expected given how well he was otherwise doing).

We don't want to go crazy testing for anything and everything willy nilly because by all rights, he seems to be a healthy, normal THIN boy.  We also don't want to ignore something that might be something just because he seems so normal and healthy.   He acts fine.  He's bright, engaged, active - by all appearances he's just a normal, if precocious, little boy.

As a baby one test showed him to have odd thyroid levels - the showed that he should be expected to be on the heavier end of the spectrum and yet he was the opposite.  It kind of made us scratch our heads, but he was so normal, there were other things going on and we agreed with his doctors that it must have been lab error and that we just didn't want to stick him another time for no real reason.

We've battled constipation off and on with him since he was born.  He came home on prune juice to keep things working.  We thought that was an immature digestive system due to his prematurity.  Is that related to what happened?  To his size?

We left with a plan.  We watch things, we live our lives and see how he does.  If he has a problem, we go in right away.  If things are just normal every day life, we wait and see the ped in July for a well visit to check height, weight, temp and BMI.  Then we'll have his 6 year physical in October as usual.  We want to watch his growth more carefully and see that he's staying on the curve (albeit a very low curve, about the 5th percentile) rather than flatlining or falling off.  It still could be that he's just naturally thin.  Or it could be that he's actually not.  The ped said (though he doubted it) that we could be looking at a diagnosis of "failure to thrive" at which point we would start testing...something.

We also mentioned that on Monday my 9-year old nephew was given a preliminary diagnosis of celiac disease pending the results of some blood work that aren't back yet.  His only symptom had been constipation that began about a year ago and progressed to some pretty severe problems rather quickly.  (Though up until the apparent vomiting of fecal matter, his symptoms appeared very similar to the lowercase)  Celiac disease is hereditary so our ped thinks that if his cousin does have it, there could be a chance that the lowercase does as well which could explain some of the constipation, some of the thinness due to inability to absorb nutrients.  But of course, we don't want to make assumptions and jump to a (difficult at best) gluten free diet if that isn't called for.  So for now, we wait, but we at least have an idea of where to start testing if we see that there is an actual need for testing.

I just don't know what to think.  Our plan is very reasonable, in my opinion, and logically I know it's best and am comfortable with it.  At the same time, it's killing me to hear that "failure to thrive" is even a possibility.  This sounds so conceited and ridiculous but that kind of thing just doesn't happen to people like me.  I followed all the rules!  I have paid extreme attention to his diet from the minute he was born.  We buy organic foods!  We're a family of foodies for crying out loud!  I just feel like, as a mother, that one phrase says more about me than about him - that I didn't do something right, that I missed something, that it's my fault.  Honestly, he's always been around the 5th percentile once he reached the charts at all, so if it's now deemed failure to thrive, then he has ALWAYS been failing to thrive -- that's FIVE AND A HALF YEARS of mama failure.  

Of course it could all be tiny issues, completely unrelated, he's just thin and in a world riddled with obesity, isn't it good that he doesn't have that battle to fight.  For now, we wait, we watch things, and try not to worry until there's cause.  Good luck on that one.

   [ posted  @ 2:37 PM ] [ Post a Comment ] [ View Comments (3) ]
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  Comments about my post, "":
I can only imagine your worry, your concerns, your fears, all of it. No doubt it all just sucks.

There is one thing you don't need to worry about though--and that is the guilt, the 'mama failure.' Hon, there is nothing you've done or not done to bring any of this upon him or you. I know, I know, easy to say, hard to do...but honestly, the rational part of your brain knows that this is the truth, yes? No doubt you've been an awesome mama to him for 5 1/2 years, you know that, right? I understand the guilt, the 'what if's,' the stress, all of it, but give yourself a break (please). You're one hell of a great mama!

My niece was a 'failure to thrive' baby and it wasn't because of anything my SIL did or didn't do. It just was what it was. She's still thin but what of it? As you said, perhaps it's better to be fighting that battle as opposed to the opposite end of the spectrum.

Hang in there...and may you get some answers soon. One day at a time my friend, one day at a time.
I have no advice as I have no doubt that as the awesome mom you are you are doing everything you can.

All I can do is send HUGS and stay warm/grow little guy vibes.
I cannot imagine how scary this might be, but there is no way you should be feeling mama failure - come on! You did everything anyone could think of or suggest.

I hope they come up with an answer soon so he feels better and you can as well!
Keep us posted, now I'm sure there's a circle of women praying for him as well!

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