Thursday, April 14, 2011

"See You Next Year"

I'm sitting here, sipping my chai. As I look out the window, I still see lots of brown. We live in the woods. Bark, pine needles, dirt roads, and huge Montana boulders.  But if I inspect further, I can see little green buds on the trees. And I actually see lots of green grass. Thank goodness for green. Out with old, in with the new.

This winter has been rough, but not near as hard as last year's. It was our first winter home from the NICU and we were instructed with our RSV protocol - no public outings for Jack (besides the hospital) and since I was going to be taking care of him, it pretty much meant that I would be following this protocol as well. And Jack wasn't eating. It's like he ate great for a few months around Christmas, but then he just quit eating. And here we'd thought that maybe, just maybe we had been spared one of ailments of extreme prematurity. I remember saying to Jon "well at least we don't have g-tube to deal with"... 

When Jack stopped eating, I can't even begin to describe the amount of angst this caused. I specifically remember Easter weekend, having to drive around just in hopes that Jack would kinda fall asleep, and mindlessly eat. On the worst days, he would drink about seven ounces... when he needed over forty. I found myself doing crazy things like using Jack's little 1ml syringe, what we normally use for meds, to get formula, any amount, into his mouth. So when he would need 6 ounces, I would fill up that little syringe 180 times and try to make him tolerate it. And for us, that was considered "good".

Jack proceeded to loose a pound. And when you weigh thirteen pounds, that is not a good ratio. We knew something had to give, or it would be our sanity. And as I stare out the window today, I can look back to this time last year, remember how we came to the decision for a g-tube, and how thankful I am for it. It seems like no big deal now, but then, it was huge. I guess what I'm trying to say is that sometimes we are in the midst of something that seems like such an excruciating hill to climb. We don't know if we will make it. We are confused, depressed, and exhausted. We have reached our limit. But we WILL make it.

Here at the Clancy compound we have something like two weeks left of RSV isolation. It's really hard to wrap my brain around that fact. I have been living, in what feels like limbo, for two years now. It is difficult to imagine what my life will be like in a month. We won't be throwing all caution to the wind, but it certainly won't be the same. We have lived in bubble for so long.

The most exciting thing on the horizon is some intensive feeding therapy for Jack at Seattle Children's Hospital come the end of May. We will start reducing Jack's calories via the tube a week before we go and then this "weaning" will continue for weeks after. Jack will be in therapy four times a day for two weeks and he will be stretched like never before. I will be blogging and giving updates daily while we are there and since this blog - with all your encouraging comments and emails - is such a big part of me, I will make sure to let you all know how we are doing.

Last week Jack had his NICU follow up. As we were leaving after two hours of testing, Jack's Neonatologist looked down at her notes, then back up at me and said "see you next year". Those four words were incredibly powerful for me to hear.  I remember how touch and go it was when Jack was born. How we were just seeing if he could make it another second. Then it turned into minutes. A couple of months in, I clearly remember the doc telling us that things has progressed from hour by hour, to day by day. And I took a deep breath. And now we are told "see you in a year". Deep breath. We are going to make it.
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Shannon said...

Such a touching post, Jessi. I understand completely where you are coming from. Can't wait until you are sprung from the bubble. I'm so anxious to see how Jack does with this next big adventure.

Emily said...

Amazing! Beautiful! Totally celebrating with you guys!!

Carmen Reynolds said...

Gabe and I are waiting on Easter Sunday and then we can go out more. We just had our 1 year (adjusted) NICU follow up on Tuesday and all went well for a child who screams whenever he's in a medical facility. He's come a long way.

I can't wait to hear about the feeding program. We have a feeding specialist we see from time to time but there is disagreement about what Gabe should be doing. The developmental pediatrician at the feeding program says one thing and the state nutritionist says something else and the NICU nutritionist has a totally different outlook. Sometimes I get overwhelmed. Eventually when I calm down, I just use common sense.

I agree with you about the g-tube. It was the one thing that broke me emotionally at the time but it was the right move for Gabe at that time.

Forgive my rambling. I am emotionally and physically tired today. We're fighting severe allergies right now and that has restricted us from even going outside for fresh air. So, I have a super grumpy and snotty baby and he has a super grumpy and sneezy mommy.

I appreciate your blog.


Jessi said...

Hi Carmen. Thanks for your comment! I am so sorry about the allergies... ugh! Sometimes things just feel so difficult and like you can't catch a break. Like you, I think we will make our first family outing on Easter sunday as long as we have good weather... never know, it could snow here in Montana. I can't wait!

Julie said...

See you in a year! I love that. So happy for the mountain that you have moved behind you and excited about the chance for God to do yet another miracle in your Super Jack with his eating! We are going to make it!!!!

Babs said...

Yay, Jack! What an inspiring guy!

I have loved watching your writing grow throughout this long winter.