In honor of Feeding Tube Awareness Week, I asked my best friend, Sarah, to share her son’s story on my blog. It is my hope, that through the sharing of her life, we can all become more aware.
I recently learned a little secret…
There’s a week dedicated to feeding tube awareness.
And a website dedicated to educate people about feeding tubes.
This means more than I can explain because I am a mother of a tube-fed child, or a “tubie.” I have three wonderful sons and I am happy to brag on them any day, and at any time. No joke! Text me at 5:00 am, and you will find me awake and ready to share all about my fantastic, charming, and caring sons. But, the reason I will be awake is my sweet Sullivan, or Sully, as we call him.
Sullivan is 16 months old, with sandy-blonde hair and beautiful blue eyes.
He is active!
He is silly.
He loves to be tossed around with his big brothers, who are five and three. He loves to wrestle with daddy.
He loves the movie “Toy Story,” and equally loves its characters — Buzz and Woody.
Sullivan is a mommy’s boy. He loves to bury his face in my hair and have his back rubbed.
He is also a daddy’s boy when he’s feeling particularly ornery.
He loves big dogs and peek-a-boo.
He isn’t afraid of anything so far — not even the dark.
He’s my big, brave boy.
And did I mention Sullivan is also a tubie?
Sullivan has a mic-KEY g-button in his tummy.
Sully started out as a breastfed, smiley baby boy. He came into the world at eight pounds and six ounces. He was amazingly patient and easy-going. He was born to be a third-child, as he fit into our family perfectly. We brought him home and planned the next 18 years of his life, just as we did for our other boys.
Things seemed easy.
I had done this twice before. I couldn’t mess this up, right?
Then, everything changed. We began to redefine normal. When Sully was six weeks of age, I wasn’t making milk.
I freaked out. I was so confused.
Why wasn’t this working? Hadn’t I done this hundreds, if not thousands, of times before over the last few years?
I went to a lactation nurse, took medication, and pumped like crazy. I got a Supplemental Nutrition System, tried bottles of formula mixed with breast milk, and took several showers where all I did was cry.
Finally we switched Sullivan over to an entirely formula diet. He still would not eat. He might take a sip, or an ounce at most, and often he would vomit it up everywhere.
We couldn’t figure it out.
We tried several types of nipples. We saw lots of doctors.
The doctors finally did diagnose him with severe acid reflux. We began to treat it. We put him on a broken-down formula and eventually put him on soy. Each change we made gave us a second (or third, fourth, fifth etc.) wind. But each time ended the same.
Sullivan would not eat.
This was our new normal.
Things improved for an hour or two, and occasionally a day. Then we would be back to where we were at the beginning.
A little, baby boy who wouldn’t eat.
It was heartbreaking.
Every doctor responded in the same way. “Feeding is a basic instinct. He’ll eat when he’s hungry and ready.”
The problem was, “hungry and ready” never came. You would expect a six-month-old baby living on 15 ounces of formula to be fussy or distraught.
Not my boy.
He was content to starve. Literally. He would sleep all the time since he wasn’t getting enough calories and nutrients. He was much like a newborn baby: sleep 20 hours a day, wake up to smile and coo, and then nod off after 15 minutes of playtime.
At 7 months old, the only time I could get Sullivan to eat was when he was completely asleep. Even then, it was only tiny sips.
No words could describe what was going on.
Not even the videos I took to show his doctors were enough.
The doctors saw me as a crazy, tired, dishevelled mess, with a sweet little boy who was sleepy, but happy and content.
Sullivan was losing weight (naturally), but the constant sleep helped to keep it from getting too concerning.
When Sullivan turned eight months old, he was eating roughly ten ounces daily.
On rare (but good) days he might eat closer to 15.
His Gastro-Intestinal specialist had me do an experiment; I was to stop feeding him asleep. I was instructed to only feed him awake. I did this for 24 hours and he ate one ounce.
I was told by the doctors that he’d probably end up in the hospital, but the feeding issues were because Sullivan had “behavior problems.” He was “being difficult.” They said that Sully would eventually eat if I held out long enough.
Something in me knew that that would never happen.
My husband and I fought for every drop our son ate. He would not accept food, period. This was clearly not behavioral. Something was wrong.
Finally, we got an appointment with a nutritonalist. She said something I had long feared, but something that I needed to hear:
My son needed a feeding tube. This was going to be our new normal.
Sullivan needed the nutrition of which his body had been deprived.
Before this all happened, I didn’t even really know what a feeding tube was. I thought they were for elderly people and extremely tiny kids. I was wrong.
After a few long fights with Sullivan’s GI specialist, we finally got the approval we needed to have Sullivan’s G-tube surgically implanted.
On June 10th, 2011, our son got his tube!
The surgeons made an incision in the stomach (this hole is called the stoma) and put in a g-button through which liquid food (formula) can be given. The stomach is sewn to the abdomen wall to keep it together. This way food can be given and it can bypass the mouth. (That’s the simplest terms… I am not a doctor and I promise that Wikipedia can give a much more educated-sounding definition!)
Sullivan’s surgery was tough. He woke up in a lot of pain, and I found myself questioning if I had made the best choice for my son.
Really though, was there even a choice?
We spent the night in the hospital and the next day, Sullivan was allowed formula. He was able to get food! It didn’t matter that he turned his head away and refused to eat; I could give him what his body needed without him struggling. It was amazing.
Now, because of the feeding tube, our day begins at 5:00 am with medication. Sully’s first feeding begins at 6:00. Every 90 minutes, Sullivan alternates water and formula throughout the day until 11:00 pm. With every feeding, we still offer Sully a bottle of formula to take by mouth. Some feedings, Sully will snub his bottle completely. Those feedings are becoming less frequent. Some feedings though, he will drink the entire bottle and not even need his tube. These are beginning to happen more often. He is always improving.
Sullivan nibbles very cautiously on some solid foods, but never enough to measure. We still can’t say, “He ate a cracker.” or “He ate a cheeto.” etc. He eats only what feels comfortable and safe.
Today, Sullivan isn’t all “figured out.” A lot of things are still a mystery.
Sully is delayed in speech — he actually doesn’t say any words consistently, but sometimes I think I make out a “mama” or a “hi.” He’s also delayed in motor skills, general development, and, of course, nutrition.
Since birth, our 16-month-old son has received anesthesia four different times. He’s had five separate surgical procedures. He’s endured countless tests — including an MRI. Every one of the tests has come back “normal,” including blood tests for metabolic disorders and autism. For this, we are very blessed!
Sullivan has five therapists, three doctors, and a specialist. We’ve gone through three GI doctors and we probably aren’t done.
But through all of this, I have found a new normal.
I’ve never had to possess so much faith in my life. In a way, Sullivan’s struggles are a blessing, because my relationship with Jesus is stronger than ever. I can rely on Him completely with the most precious thing — the three boys He gave my husband and me.
A lot of people are shocked to find out that Sullivan is a special-needs child. I have been told, “He looks so normal!”
And he does.
He’s our normal.
Yes, he eats differently, develops differently, and reacts differently.
But, truth be told, we are all our own kind of normal.
In my family – the Miller family – normal is three active boys in a house that we outgrew two kids ago. Normal is a stay-at-home mom and a hard-working dad. Normal is jumping on mom and dad’s bed, pretending to be Batman, and playing hide-and-seek.
And normal is a little boy with a feeding tube that helped save his life.
For more information on feeding tube awareness, please visit this website.