Wednesday, May 10, 2017

Small Step Back

Jason and I are on our way out of the country, traveling to the U.K., partly sponsored by his company. I wanted to give a quick update of how our week has been. And other than lots of COLD baseball, and both boys starting a cold, it's basically a medical update.

Jax had his 6 month checkup with his GI specialist and I wasn't looking forward to it knowing Jax's weight wasn't great. We also had made the plan last fall with the GI doc to try and increase the speed of Jax's feeding pump at night. The thought was to get it really fast so we could just bolus feed him half his formula at bedtime, and then again before Jay and I went to bed. This may help Jax be able to be free of the pump at night and to work toward getting out of diapers then. We went too fast with the pump, and he was getting "dumping syndrome" and having diarrhea at school the next day.
So, we pulled way back and I've been slowly but surely increasing only 2-3ml's every couple of days. I've got him up to 170mls/hr (that's about 5.5 oz each hour) so he's on the pump for about 3 hrs. If I'm up past 11pm, I remove him from the pump so he can wake up without it. But most nights I don't make it that late, so he just brings me the machine (in a backpack) in the morning to be disconnected.
Little by little I guess...

Well, that goal we've been working toward just got further away. Jax's height came in GREAT at 50", which is 25% on the charts! The not-so-great news is that he's only 49lbs (with all his clothes on), which is only 5%. His BMI is going down steadily, and it's really upsetting because this is the time of year he historically GAINS weight and then plateaus each summer. Ugh.

We took a step backward, and I didn't realize it would upset me so much. We have to add more formula at night and more powder to the formula he drinks during the day (which is already 24oz daily).
I told the doctor that Brady was about the same height and maybe only a couple pounds more. The doc said that it's not unhealthy to be naturally small, and of course we need to always be mindful to push calories on a kid like Brady, but Brady is at this height and weight without any medical intervention. If Brady was given nightly growth hormone injections and tube feedings, he'd be substantially bigger. The problem here, is that Jax has received these interventions his entire life and is only at this size. We're not leaving a lot of wiggle room if he gets really sick again.

Yes, this all makes sense when organized like that.

Then the doctor told me that Jax's body will always WANT to be small. With the way he was born so small for gestation and not knowing the extent of the HIE (his brain injury from lack of oxygen) on his growth, he will always fight to be big enough to be healthy. I kind of stared at him while he was saying these words... then he said it. "Jax needs these interventions to thrive, that's just how it will be."

I didn't have the heart, or the nerve, to ask him to elaborate. What does 'will be' mean? I know he can't take growth hormone past puberty, so is he talking about the tube?
Do you see where my thoughts go at night?

So, the dietician came back in to discuss recipe changes for his tube feedings, etc. She looked at me and said, "what do you think of this?"...
It happened.
I couldn't stop the tears. I had to turn from Jax (who was thankfully playing baseball on his iPad) and silently get thru that moment with the dietician. She decided to email me the info instead of handing it to me and instead to give my hand some tissue and a squeeze. I just wanted to teleport out of there asap.


My anxiety is really high this week, so I'm sure that is part of it. I get edgy when planning to leave the boys and be far away. There's so many checklists, but thankfully they're in great hands and they LOVE their sitter. The independence is good for them. But the schedule change with all the extra baseball in the cold weather didn't help, or the boys starting colds, or struggling through homework with Jax while they prepare for MAPS testing at school. I've just had a tough week mentally. We all have 'em, right?

B on the left, J on the right

Big B pitching during a weeknight league game.

Big B batting during a tournament Braves game (I couldn't get a good pic of Jax because he's a lefty and I was too cold to run to the other side for a pic! Next time...)

I thought this was cute. Jason was running late from a meeting so he was out on the field coaching in a full suit (watching Brady pitch here)

This CRACKS me up! Happy Birthday Jason! (Jax said he wrote "bat and ball Jax" in the corner - he tries)

1 comment:

Matt & Shana said...

Hugs to you and I hope you have a great vacation!!