When feeding was easy
And we were, for about a month. Then gradually Reese started taking less & less at each feeding while also increasing the time spent at the bottle. Not a good combo. With heart babies, a single feeding should last no longer than 30 minutes to prevent fatigue & to eliminate the risk of burning too many calories. Sucking not only requires insane coordination, it's also a bit of a workout. To complicate things even more, heart babies actually have higher caloric requirements compared to typical babies to compensate for the increased demand on the heart & increased work of breathing. We were spiraling downhill fast.
Long story short, Reese ended up with a nasogastric tube at 3 months of age. We still offered her a bottle with each feeding. She ate what she could & got the rest through the tube. This was okay for awhile & then it was not. Not at all okay. I won't go into detail, partly because it's very medical & partly because it brings back memories of very stressful times where our lives literally revolved around eating & calories & weight gain, but her team decided a G-tube was her best option while awaiting her heart surgery.
Feeling okay about the tube
Not so okay with it here
Dad became a pro at supplemental feedings
So did aunts & cousins
So on February 29th, I packed up our little bundle & headed to Children's Mercy Hospital. I couldn't decide if having the surgery on Leap Day was good, bad or indifferent. I don't think of myself as a superstitious person but all bets are off when your flesh & blood is undergoing surgery. Normally G-tube insertions are very safe & complications are rare, but we were told her unrepaired heart made things slightly tricky. Reese was accustomed to tricky & she did just fine.
At her pre-op appointment
The night before surgery - no more tape on that pretty face
The Handoff - Ugh...
Her new hardware
Reese was fed primarily via her G-tube for two full months. We still offered a bottle at each feeding in hopes of retaining her suck reflex but she could only take a few sips before tuckering out. I'll be honest, I dreaded meal times. It was so depressing to see her struggle so much with something that should be so natural. What should have been moments of bonding became moments of trepidation. We took Reese to an OT who specialized in feeding in hopes of learning some technique, some trick to improve her efforts. It didn't work. We put all of our hopes in heart surgery fixing the problem.
Heart surgery came & went. I begged & pleaded & coerced the physicians to okay a bottle probably before it was time. I was so excited to watch her gulp it down. Surely her new & improved ticker would make eating a snap. Holy bonkers, I couldn't have been more wrong. She would not let a bottle anywhere near her mouth. She darn near pulled a Linda Blair trying to avoid the thing Finally the nurses had to intervene. "She just doesn't want it & trying to force it will do more harm than good." So we went home with her completely dependent on her G-tube. I was defeated.
I shouldn't have been so upset. Her surgery was a huge success. Heck, she spent 5 days in the hospital when we had been prepared for 2 weeks. She was pink, she could breathe with ease & she was happy. But I wanted her to eat. Was that really so much to ask?
We were told to avoid bottles altogether for a week. At the crack of dawn on the 8th day, I prepared a 2-ounce bottle & said a little prayer. Reese practically threw herself at the bottle & 2 ounces was gone in minutes. I was shocked & amazed & I bawled like a baby. Two ounces is not much. You & I could easily gulp it down in seconds. But it was more than she'd eaten in 6 months & I was hopeful.
Well, in true Reese fashion, she decided to buck authority again, & the G-tube is now history. Gone. It was removed roughly 10 hours ago. It's been a good day.
Waiting room jitters
Sissy there to offer support
Baby makes everything better
Tube in
Warning: Ensuing pictures are slightly graphic. May want to skip if grossed out by medical stuff.
Going...
Going...
Gone!!!
That little hole is covered with some gauze & should close up completely on it's own. In the meantime, our little hoover is eating everything in sight.
I didn't know this! That is FANTASTIC! You are definitely among the lucky ones. Josie has been "clean and sober" for 2 months now (freed from G tube depedence) but ours won't come out until Spring. I'm so glad your journey was easier. Go Reese!!!
ReplyDeleteThanks Elizabeth. I know we are so fortunate. Everyone, I mean everyone, keeps telling me this is very unusual, that having the G-tube for only 7 months is almost unheard of. Well, we'll take unusual any day!! And congrats to Josie on her "clean & sober" status. I know this has been a long road for you so I am thrilled!!
DeleteOh so so jealous! Our little guys is 3.5 years old and we are still on that stinking g-tube. He just won't eat :( Congrats to you guys.
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