When Ariana was born and she had her 2 month stay in the NICU because of her “feeding” issues I never imagined the long, complicated experience to follow over her G-tube removal.
The day Ariana was born she was handed to me a couple hours after birth. I held her maybe 5 minutes. In those 5 minutes she refused the bottle and the breast so she was taken to the NICU.
Fast forward to July 2014, Ariana is still in the NICU. We are beginning to lose hope, we just wanted our baby home. I didn’t feel like she needed to be there, she would eat she just wouldn’t eat the amount the doctors felt she needed to eat to be a “healthy baby”. Honestly if she didn’t have Down syndrome she wouldn’t have been taken to the NICU so soon. The doctors completely jumped to conclusions, “She has a feeding issue, it’s very common with downs.”
I remember sitting across the team of doctors that was assembled to analyze Ariana’s feeding problems and assess the situation. I remember them telling me “this is your only option” “do you want your daughter home?”
Pressured and bullied we agreed.
July 26 2014, Ariana finally came home.
I would be lying if I told you all that we didn’t use the G-tube, We used it the first week. I followed the crazy feeding schedule that they gave me. I fed her every 2 hours, I wrote down every ounce she drank and ever time she drank that ounce. But after that week I had enough, Ariana had enough. I sat down on the couch with her, I looked at her and said “baby.. we’re gonna eat with our mouth now, okay?” I felt positive about my decision.
Ariana breastfed for 17 months, she started eating solids at 12 months, she started drinking from a cup at 9 months and mastered the straw at 10!
Ariana hasn’t used her gtube for 2 years! And still her Gastroenterologist refused to remove it. We waited for her ASD/VSD to heal, and it did! Then we waited for her to gain weight, and she did! But yet, her doctor refused to remove it.
August 31st 2016 Ariana visited her NEW Gastroenterologist. 5 minutes into her visit and her doctor said “Let’s get that G-tube out!” Yes please!
I cried when the doctor agreed with me. I just became so overwhelmed with emotion that I just started crying.
It came out and Ariana just looked up at me and smiled… I know she is just as relieved as I was to finally have it out. Nothing is holding her back anymore.