Friday, March 2, 2012


We took Josiah to the cardiologist today for his first office follow-up appointment, since his surgery.  His EKG was great!  Then, they weighed him.  He weighed in at 9lbs 1.3oz.  At best, given that each office has it's own scale, he neither gained nor lost weight.  At worst, he lost 2oz since last Friday (at the pediatrician's office).  I cannot begin to describe the feeling of complete exasperation, frustration, and despair.

Perhaps it seems like a small thing; perhaps it is.  All I know is this: Josiah weighed 7lbs on 10/12/2011.  Today, 3/2/12, he weighed 9lbs 1oz.  He will be five months old, in ten days.  At Jesse's four-month check up, he weighed 15lbs.  James, at the same check up, weighed 13lbs.  I know the DS plays a role in the slow weight gain, but this isn't right. 

We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain.  That excuse can no longer be used.  Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate).  Is it the Down Syndrome?  Is it a feeding issue?  Is he not getting enough calories?  Does he simply need more calories than an average child?  Should we start feeding him cereal?  UGH!  The questions race through my tired mind.

The surgeon was very pleased with the outcome of Josiah's surgery.  Josiah's heart "sounds perfect."  His color is good.  "He looks like a different kid."  "He looks more mature in the way he's moving around."  However, "I expected him to come in here having gained a lot of weight so this is disappointing."  (Yeah, tell me about it!)

Up until now, Josiah has been exclusively breastfed.  He doesn't like the bottle; he won't drink from a bottle.  Since surgery, he's been eating every 2-3 hours.  It seems impossible to me that the child has gained no weight but numbers do not lie.  I don't know what to do....that's the feeling.  I hate that feeling.  I'm tired and feel I has so little left to give....

We made our way out of the cardiologists office.  I immediately walked down the hall to the pediatrician's office.  I talked to our favorite nurse M.  I voiced my frustration.  I asked if we should start Josiah on cereal.  I assured her we were doing everything we could to properly nourish our son.  She already knows that we are.  She said she'd call me later.

We did a few errands, picked up Jesse from school, and made our way home.  I was exhausted.  I left a message for our EI worker K.  I know I'll hear from her as soon as she's available.  This afternoon I fed and usual.  I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one.  It's worth a try.

I talked to M from the pedi's office.  The MD said we can start Josiah on cereal.  I needed more than that.  I didn't know what I needed, but that wasn't enough.  I guess I wanted an instant fix....  I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information.  I ended the call for lack of knowing what else to say.  Carl was very supportive of my frustration level.  He called the MD's office back again and spoke with our pediatrician.  The pedi is sympathetic to the situation and understands the frustration level.  He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such.  We'll see the pediatrician next Thursday for another weight check.

I called the lactation specialist KF and heard back from her promptly.  We chatted for some time.  It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight.  She offered some great suggestions.  One by one, I'll try them all.

I talked to K for quite some time after.  She is another fantastic support.  K will put in a referral for OT early next week.  It will be, specifically, for feeding.  I've entrusted that task to her.  We'll see K on Monday and will discuss the details further.

Tomorrow, I'll email A from the DS clinic.  I'll explain what's going on with Josiah.  I'll ask her what I need to do to initiate a consult with one of their nutritionists.  I'll probably hear back from her on Monday.

It's the weekend now....two days, at home, with my wonderful family.  I'm going to try to relax a little.  I'll attempt some of the new suggestions given to me.  Hopefully something will work.  I'm going to try to not let it become all-consuming (although it already feels that way sometimes). 

In the end, everything will work out.  Even the cardiologist said "this is just another little hurdle we have to climb over."  Everything will work out.

Climbing up the down staircase isn't always easy....but it's worth every single step <3

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