When my second daughter was born, she presented right away with eating problems, FTT, and crying a lot. At 3 months old, after the ped was still blaming it on colic, I took her to ER desperate for help. She stayed for 6 days and came home with an NG tube. I never had imagined that I would have a tube-fed baby. It was so hard. She was on slow intermittent and continuous feeds. She started to grow and got hand control and would pull her NG tube out and I would have to put it back in over and over and over again. She stopped bonding with me. She vomited and vomited so, so much and cried and it was just really a nightmare. At 8 months old she still had no dx but she got a g-tube put in. She continued to vomit, be sick a lot, but due to the constant pushing of formula she did grow pretty well. We had her in feeding therapy with limited success, and OT for her sensory issues that she had developed. Was not a happy baby or toddler a lot of the time. At 2 years old we still had no dx and she was starting to not grow as well again and still vomiting. I finally decided to see another GI doctor.
Within 2 weeks of seeing the new doctor she was dx with EE (eosinophilic esophagitis) and she had a very severe case of it with lots of esophageal damage. She was just a couple of weeks shy of her 3rd bday. The plan was to take away ALL foods and start over from scratch, and put her on elemental formula for a couple of months. Within 2 weeks her skin started to glow and she lost the dark circles under her eyes and she was actually a little bit chubby. She got tall really fast. We then had to introduce 3 foods and then scope to see if they caused inflammation. 3 more foods, another scope and so on. Finally by age 5 she had a reasonable diet although she was vegan (no animal proteins, no nuts, etc). She started Kindargarten and she is for the most part a very happy child now, doing great in school and with friends. She's also tall for her age. :-)
She made it through the winter without needing her tube to get through illnesses. She got sick a lot because we never had her in daycare and we had protected her from crowds, but she got through the illnesses just fine. Today, after 5 years, 7 months, and 12 days, she got her g-tube removed!!! and I got to do it!!
My daughter will never be cured from EE. It is related to asthma and eczema-- like having eczema on the inside of her GI tract. She will always have a limited diet. But she no longer needs the tube. She's going to grow up and be just fine. And through the process of caring for her I decided to be a nurse and am now going to graduate next March.
I have never ever regretted the G-tube. It saved her life. It was a HARD journey but I learned so much, and learned what really matters in life, and found out who my true friends were. I also found out a couple of years ago that my other daughter has Celiac disease!! They are not related at all-- the EE is from my side and the Celiac Disease is from my husband's side (he found out he has it too, after we all got tested). Meal times are interesting, but thank goodness for the health of my family. I see people in the hospitals who are so sick and I really count my blessings.
Anyway, just wanted to share my happy news.
ETA: she's 56% for weight, 76% for height. Thriving and growing!! :-)