Our Personal GERD story:
GERD is the reason My Tubey Books exist--our daughter was born with a severe case, and it led to her being tube fed for three years. Luckily she was my second baby, so I knew pretty quickly that she wasn't just "spitting up". She was an erupting volcano of every last ounce of milk she had managed to drink, which wasn't ever very much to begin with!
I knew within her third day of life that something wasn't right, and by the end of her first week, I was a mess. The medical folks weren't listening to me, my sleep deprivation was taking a toll, and my brain couldn't handle the incessant screaming coming from my tiny, red-faced newborn. Not to mention the horrible helpless feeling I had, knowing nothing I could do was a comfort to her.
She screamed for hours and hours all day and all night with very little break. The back-arching was powerfully acrobatic and horrible to see. My heart broke at least seven times a day when she would vomit every bit of food I had painstakingly fed her with a medicine dropper, or by breast when she was sleeping (sleep-feeding).Every time my neighbor/best friend came to check on me, she could hear the awful screams from the sidewalk before she ever got to my door.
Finally, at around 8 days old, a lactation nurse who watched me trying to nurse my baby, called the pediatrician and demanded a prescription for Zantac. And that began a long line of medications, interventions, tests, and ultimately, a feeding tube.
Finally, it was me that demanded a tube.She was 8 weeks old, had gained just a few ounces over her birth weight, and I was attempting to feed her up to 17 times per day. She was scaring me with her skinny little legs and arms, and the whole family was exhausted.
None of the extra calorie formula mixtures were working, none of the reflux meds, and the Reglan was a failure. She did not want to eat. And as time went on it was getting harder and harder to "trick" her into eating. If I so much as put my breast to her mouth, she would now gag and vomit. A bottle was out of the question. A medicine dropper was just a mess as she wriggled to get away from us.
I went in for a "nutrition" visit at the GI clinic and I told the nurse I was NOT leaving without a feeding tube. She believed me. They came in with an NG-tube and proceeded to show me how to place it. I was scared, my lips were quivering, I could barely pay attention, and my baby was choking and gagging as the nurse put the tube into her nose and blew air into her little face to help her swallow it down (a reflex). How could we do this to her at home, without a nurse to help us?
As we walked away, I had such a mix of emotions. I was sad, and relieved. I felt SO relieved. I could feed her! I could FEED HER! For the first time, there would be no struggle.
She had the NG-tube for 6 months. The GI team kept telling me, "oh, as soon as she gains some weight and strength, she'll start eating." She didn't. "Oh, as soon as she starts to roll over, she'll stop throwing up, she just needs to develop her trunk strength." She didn't stop, not when she rolled over, not when she began to crawl, not when she began to walk. I finally asked them to give it to me straight. "Tell me what the worst case scenario is with a kid with GERD. How long is the longest you've seen one with a feeding tube." The doctor looked at me and said "school-age."
So at 8 months old, when I had finally had it with my active baby pulling out her NG tube several times a day and the not fun time of having to put it back in (6 times in one day was the record), we moved right along to the G-tube, thank you very much. And all I could think after we had had it for just a few days, was, why didn't we do this sooner? It was SO much better. So much. And I could see her beautiful face! And she was happier! And people didn't stare! I do not overstate it when I say I LOVED her G-tube. I honestly didn't care how long she had it. The only concern I now had was how long was she going to suffer from her GERD. And when would she start to eat?
Check back later for more!
Click here for a recent life update: Life after GERD: Our Story.
