Thursday, January 31, 2013

No More Feeding Tube

Feeding Tube Removal
Addison thinks it's no big deal that her tube is finally gone!

That's it. It's so final. And was so "brief". I don't know what I expected to happen when GI decided it was time. It just...happened.

On Day 95 of tube weaning and 75 days after her last tube feeding, Jan. 30 2013 she is officially without a feeding tube.

We had her regularly scheduled weight check/follow up regarding out tube weaning. Our regular GI was out so we saw her colleague  she reviewed everything with me. Once. Twice. And then I heard those words that I longed to hear "I think we've reached the point where we can safely remove it." She asked if I wanted to do the honor, or allow her to. I've changed it a million times, but today I couldn't bring myself to take it out. Instead I let the doc do it. I held Addison's hand, explained how proud we were of her and what this all meant. And then in an instant her lifeline, the safety net, that one thing that kept her alive and well for so long...was gone. In it's place a tiny whole (smaller then the diameter of a pencil) with a band-aid covering it-remained.

We did it. SHE did it. All that hard work. The months of stress, crying over thrown food and wishing she would just take ONE bite, suddenly was done. A chapter closed. My little itty bitty once 1lb 12oz baby girl who has had a feeding tube her entire life, is no longer feeding tube dependent and she is THRIVING. She weighed in today at 22lbs 12ozs (naked baby weight) and 32 1/2 inches tall. (25th percentile).

I've stared at her belly a million times. Admiring that flat surface when her Mini-One button once stuck out. And I had to laugh just thinking, exactly how long would it be until I go to change her clothes or a diaper and "forget" that it's supposed to be gone and panic that her button is no longer there... ya know, for just that split second. I am still trying to wrap my head around all of this. Proud doesn't even begin to describe how I feel about this accomplishment.

I totally wasn't expecting to walk in to this appointment and have her tube removed. I thought they would be hesitant and resistant, but the doctor was anything BUT that. After reviewing everything with me, she too felt confident that we could easily do this with no issues. As she pointed out, I still have several more options and resources to get added calories into her diet should the need arise.

I think sometimes it becomes hard for a doctor to look past what's on paper or in a textbook and actually consider the whole situation. That's what happened today. The GI doctor looked at Addison as a whole, and I was once again reminded just how lucky we are that she doesn't have many of the issues that other tube fed kids are faced with. That's another huge factor in why things have likely gone so well. Addison doesn't aspirate, her reflux has been well managed since her Nissin surgery, she doesn't gag or choke on her food, and most importantly both developmentally and psychically there is NO reason why she can't eat. A blessing for sure.

Time will tell if the site closes on its own. We are hoping to avoid having it surgically closed, but it could require that. Today so far I've seen minimal draining even when she eats or drinks, so I am hopeful that we might just dodge that bullet.

Another preemie/feeding tube momma asked me "If I thought six months ago that she would be tube free by her 2nd birthday." My short answer - No. I long ago accepted the fact that "one day" we might be able to remove it, made peace that she might need her feeding tube for the rest of her life (even if it was just for small supplements to her oral intake), not because I doubted her, but because it was my defense is many ways. Six months ago she was not ready, six months ago we were lucky if she ate more then 4 ounces  in one day and took more then one sip of milk. Six months ago she hated food, she hated me when I tried to make her eat.

What changed? I don't know. Time-perhaps. Her OT always told me one day it would just click. And I prayed, we all did. And then it just happened. It took some nudging and a few leaps of faith but it happened. And we have not looked back.

Just because her feeding tube is gone, does not mean her struggles with eating are over. The hard part is though. I assure you we still have days where she doesn't want to eat this or that, and would rather graze all day. Or days where she really tests my patience when it comes to peaking her interest to eat.Which really truly could also just simply be a toddler thing, honestly. But even with all of that, she still gets enough nutrition and maintains/gains weight. The next thing we'll have to begin working on now that we've crossed the first bridge, is letting other people feed her (or just watch her eat, if she is self feeding)...getting past some of the behaviors and teaching others how to respond to those behaviors. And getting her to eat BETTER in public places or crowds. (This is yet another thing that she does well sometimes and then other times gets overwhelmed and distracted.)

I do believe it will all come in due time. For now I am taking a moment to step back, thank God for this amazing blessing and rejoicing.

Breakfast at Friendly's
After her appt, we enjoyed a celebratory breakfast before heading home.
Here she is enjoying a sausage link, after already inhaling half a pancake and downing milk.

Chocolate Frosty
And here she is with the evidence of a celebratory lunch - Frosty, Fries and Nuggets.

Tonight we took her to one of our favorite places, Red Lobster, for dinner. (Thanks to our last gift card from Christmas, from Jake's cousin!) She enjoyed half a cheddar biscit, some fries and believe it or not she ate a whole filet of broiled fish! I was shocked. But she just kept going to town. She amazes my For desert I bought her (and Blake) a heart shaped cookie that says "You Rock" on it, but they were both too sleepy to even enjoy it. That's ok, I saved them for tomorrow and we will just keep right on celebrating this HUGE accomplishment.

Also its been just 24 short hours and her stoma looks as if it has closed up! (HOW AWESOME IS THIS? Yet another of God's many miracles.) She had relativity no drainage from the site since it was removed, with the exception of once today when I changed her diaper and noticed her onesie was a little damp (like not even enough that her shirt on top of the onesie was wet!) We'll see how this continues to progress, but it's looking promising!

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  1. Woohoo!Congrats and good job!

  2. Thanks Tatum!

    It's been a long road, but we made it!

  3. This is fantastic news! Congrats to all of you for hitting such a huge milestone!!!

    1. Thank you Becca! We are so excited about this new journey!