G-tube Journey ~ One Year Later

One year ago today our little men became tubies.  They had their first (and hopefully only) surgery.  G-tubes!!

Button Brothers!

Our world turned upside down the night Aidan was born, when we found out he was having constant seizures... which led to his brain condition diagnosis the next day.  Our world shook again when Ty was diagnosed with the same condition while in the womb a year later.

And our "normal for us"/comfy/cozy/predictable everyday life was flipped like a light switch in September of 2011.  About a year and a half ago... when both Aidan (then 3) and Ty (then 2) clamped their mouths shut and refused to eat. Soon they went into a complete existential funk - brains were going haywire!  The kicking began, the thrashing, sweating til they were completely soaked from head to toe, constant crying, little to no sleeping.... Our quiet lives had become pure chaos as we watched our boys change in the most painful way.  Aidan, who used to eat baby food and drink from a special cup for every meal, was not eating.  Ty, who loved milk more than anything on this earth, shook his head anytime a bottle came near him.  We were heartbroken.

As parents, one of our most primal instincts is to feed our kids, right?  And here we couldn't do it.  For weeks we fought to get every ounce of milk, every bite of food, into their mouths.  We would sit with them for hours.  Most of the food going every where but their mouths.  All while trying to keep up with our ever busy 9 month old.

We finally resorted to using an NG tube (nasal-gastric feeding tube).  Aidan had used one his first few months of life (before I 'taught' him how to eat), and we had learned how to place one back then.  It was time to use one again, for both boys.  It was horrible seeing those tubes in their noses & taped to their faces.  The tubes annoyed them, and they covered up their beautiful cheekers.  But they were needed.  We had no other way to feed them.

Aidan at 2 months old

We had hoped whatever was going on with them was a momentary thing - a virus?  Reaction to the flu shot they got a week earlier?  A phase in their growth??  Yet as their health spiraled downward, and their bodies weakened... we had no other option but to use a NG tube, for their bodies were too fragile to endure surgery to have a g-tube placed.

Ty was actually worse off at first.  Then Aidan hit the roughest point.  Many times we thought we were going to lose them during those months.  That Fall consisted of their first hospital stay, followed by hospice care, then hopeful moments & signing out of hospice, then another trip to St. Paul Children's for Aidan (almost the full month of November!), and a very rough Christmas...

January 2012 marked a new year.  We prayed the boys would be well, and be with us, for their little brother Cole's 1st birthday on the 29th.  We got our wish and then some, as both Aidan and Ty were on the mend.  Once again, like a switch, they were back to their old selves.  We were so very thankful.

Aidan right before Cole's birthday.

Coming out of his 'funk'!

Tyler doing well!  January 2012

We continued to keep their NG tubes in, so that we could build their health back up.  Ty began eating bottles again, and was doing really well (so his NG wasn't in at all times). Aidan had a much rougher battle that Fall, so he had much more to recover from.  He never really did take to eating by mouth again, until recently.  He has been taking a few bites of nut butter here & there (need those calories!!).

Aidan eating by NG tube - hooked up to a pump.

Ty ate much faster at this time & had already finished!

February 2012

Ty in February 2012

Eating by bottle again,

but using NG at times for extra poundage =)

We watched their health improve and their weight soar in February of last year.  Soon they were the heaviest they had ever been (as toddlers)!  They were plump and oh, so squishable!

Most importantly they were healthy enough to go through a surgery (albeit still a scary notion... anesthesia and brain conditions/immature brains don't always mix!!)....

Lounging on the couch!  Bare bellies =)

Ty guy comfy & cozy (except for this tube crap, Mom!)

So now, we as parents, had to make the big decision - do we go ahead with the g-tube surgery?  This would be life changing.  We would be altering the way we fed the boys. This would be a whole new avenue for us.  It may sound like a small thing (hey, it's just a hole in their tummy - a means to feed them, right?!)  But to a parent, who can no longer do what EVERY parent is supposed to - FEED their child.... it is very hard to make that choice. It was a no-brainer choice of course.  We knew we HAD to.  But it was a sad time for us. In a way it meant their health wasn't at it's peak like it had been for years, and in another way, we were altering their little bodies.  We were going to have doctors place a hole into their tummy and then stick a balloon in there?!  As hard as it was to wrap our minds around this new step, we had to realize this was not admitting defeat (aka us as parents, no longer being able to feed our children).  It was just a step in their journey.  One that had to be taken.

Big brother Aidan saying to little brother Ty, 

'We're in this together!'

We have always been lucky to have such great medical professionals working with us, through all these years.  We remember and appreciate each and every one we've met along the way.  Even all the way back to Aidan's NICU nurses!  We have worked closely off & on with our local Palliative Care team ~ they helped Aidan & Ty get into their surgeries when the time was right.  When their health had improved.  We knew we might only have a small window (where they were both of decent weight and health), so we are very thankful Palliative Care helped make their g-tube surgery happen!

The boys were rockstars when it came time for the surgery. It took less than 45 minutes for both boys' g-tubes to be placed!

 Aidan resting (about an hour after surgery).

Ty just waking up from surgery...

Looking for his blankie I think!  :)

The hospital was wonderful at getting the boys a double room for their recovery.  And even though they each had their own bed, Aidan eventually ended up next to Ty - sharing one bed!  =)

Look what happens when these two wake up!

Hammin' it up together!

(oh, their sweet giggles)

Day after surgery... Resting & working hard at being cute.

Better together than apart =)

Sharing a bed as young'uns!

Aidan 2 years old & Ty 14 months old

The very next day after surgery, the boys were able to come home!!  The first week was rough, as we were all adjusting... But by 2 weeks post-op, everything was pretty well healed up!

Tyler 6 days post-op.

Aidan 1 week post-op.

This band protected their tender buttons.

We tape their extension tubes on (with amazing mepitac tape!) to keep them stable & to help prevent accidental yanking/pulling.

A rare moment 'unhooked'...

So, where are we now on this g-tube journey??  First off, Ty went right back to bottling after getting his g-tube.  He bottled great for months!  We still used his tube when he was sleeping to make sure he always got his daily requirement (before the tubes we would have to wake him for his scheduled bottles - or wake ourselves in the middle of the night to feed him when he chose to be awake!)  When this past August came though, his mouth clamped back shut. He hasn't had a bottle since :(  He hasn't been well for months now....

I must admit, it's been a love-hate relationship with these tubes.  On one hand, we are so thankful for their Mini-One buttons.  Grateful for the ability to feed them when their little mouths won't open.  Glad to have the option to get calories in them while they sleep.  On the other hand, it can be a pain to get around the house - if we want to go from room to room & they are hooked up - then we have to haul the pump, bag of food, tubing, etc ... for not just one, but two boys.  So we often stay put in one room (while they eat).  Which might not sound too bad - until you realize how long they are hooked up to eat - both boys eat almost constantly!  The boys have to eat at a much slower pace now that they have g-tubes.  I admit, I would much rather be holding & feeding my children by mouth as I had done before.  There is just that closeness that I miss... but we have grown accustomed to the tubie lifestyle.  It's all second nature to us now!

The boys hooked up & catching Zzzz's

We've also figured out tricks and ways around a lot of things regarding their tubes.  We've mastered the art of carrying the boys plus their pump/feeding bag/tubing/ice pack (for their goat milk)... all at the same time.  We figured out a trick to get the tubing to rinse faster when we are flushing the milk out of the bags.  And, after a lot of trial and error, I even figured out a way to turn the volume down on their pumps (they are So.Freakin.Loud!)...  We know how to replace the buttons every 3 months & we know what do to if they yank or pull them out (ahem, Aidan!!).

The tubie brothers today.

Mr. Sleepyhead & Mr. Sleep?!What's that?!

Check out their camo on their buttons!  Those tubie toppers are named after the boys - green for Aidan and blue for Ty. Our little troopers!  You can find these handy dandy Tubie Topper's here!

I wish I could say getting their g-tubes has been a magical answer to their weight issues.  But it hasn't always been peachy.   Aidan and Ty were at their heaviest (in ratio to their height at that time) right before surgery and have yet to get back to that weight.  They both continue to burn calories faster than they can take them in.  And they have been puking more than ever after their g-tube.  They were able to eat faster and puked less with their NG tube, and I think it's because the brain could 'register' food going down the throat (as it should).  Rather than food missing the normal steps (into mouth, down throat, into stomach).  With the g-tube it's just straight into the stomach!

February 2013

There are good days & bad days with their feedings.  Both Aidan & Ty haven't responded perfectly to this method of feeding as one would hope, but it is surely do-able. And most importantly, we had no other option.  No other way to feed them.  So their g-tubes have been essential.  We can feed them at any time - including when they decide to sleep for 36 hours straight - or when they decide to stay up for that long as well.  When they are sick, we can keep them hydrated.  And their meds never have to touch their taste buds - blech!

I went back and forth on posting pictures of the boys at their lowest weights (Aidan, about a year ago) and Ty (recently! now!)... But I couldn't bring myself to do it, at least not the pictures that really show them so tiny.  It makes me sad to see them so small.  So fragile looking.  And knowing they are eating more now than ever before... Knowing they work so hard at taking all this food in, yet the weight won't stay on.  Aidan isn't too bad but could still use a few pounds.  But Ty... oh, how I wish he could feel better, be himself again.

It's not the g-tube that is causing them to lose weight (although the brain definitely registers food going into the mouth better than it does straight into the stomach!!)... We have been seeing things in the boys that are unique - their symptoms come and go (more on this in an upcoming genetics update post).  Their weight loss is the nature of their condition...  (mostly due to constant calorie burning from thrashing, sweating, crying, arching, extreme stiffness)...  Right now, Tyler is just under 18 pounds.  Six months ago he was a solid 23 pounds.  We've seen Aidan at 15 pounds & then shoot right back up to 25 pounds.  ?!?! We try to not focus on the numbers/pounds/weight.  We'd rather focus on their overall comfort.  Their happiness.  A lot of this is out of our control... We do what we can.  And the g-tube is just one thing, one step along our journey, to make things easier/more comfortable for the boys.

Do I still have all of Ty's bottles sitting in the kitchen cupboard, just in case?  Yes, I do.  Are there still jars of baby food in the pantry for Aidan, should we happen to see him do his 'I'm hungry' lip smack?  You bet.  I'll always hold onto hope.. that's what Mother's do.  But I'll also do whatever is necessary, whatever is best for my boys. Making decisions to the best of my ability.  That's where the trusty g-tube comes into play =)  It's one year later, and I am so glad we made the choice.

“It does not take much strength to do things, but it requires a great deal of strength to decide what to do.” 

― Elbert Hubbard