Molly has had a gtube since she was 7 months old. Her belly was never fed for about the first 6 months of her life which made it very hard to gain weight. The fact that she was on a low fat formula for about 6 months didn't help matters either. But we did what we had to do to get her better. No regrets with anything so far. We also say that the trach was the best medical decision that we made for Molly but the gtube definitely runs a close second. Especially because it has taken so long to get her eating by mouth. She is 27 months old and we still rely on that tube for some things. When Molly came home from the hospital back in January 2011 she was on continuous over night feeds and I can't remember what her day time feeds were but it was pretty frequent. Growth and Nutrition has helped us transition from low fat formula to regular formula and from continuous feeds to bolus feeds. Then we started spreading the feeds out further apart hoping she would get hungry forcing her to eat by mouth. It has been a very long battle. Molly is very VERY stubborn. Hmm :) Over the last month she has learned to love food. Not all and we've had to get pretty creative with getting milk and veggies into her. She eats just about everything - veggie burgers, pancakes, cheesburgers, fries, fish, pasta, etc. It's so rewarding to not only see her eat like a "normal" kid but to know that our hard work has paid off. We never gave up no matter how many times we wanted to. We stuck with it and look at her now!!! We saw Growth & Nutrition today and we were able to get rid of her last gtube feed. I am so excited. Not because I don't want to be bothered but because it's one step closer to her getting the tube out and being more like every other kid...on the outside anyway :) We are so close yet kind of far away from removing the tube. We're not in a hurry because that tube has saved us during surgeries and illnesses when she doesn't feel like eating but we think we are safe when it comes to the eating. The thing that is holding us back is the amount of fluids she takes by mouth. She's still not drinking enough by mouth. We are still giving her 8oz of fluid through her g tube a day and she's only drinking about 4-6oz by mouth a day. We are also still giving her her meds through her tube. But I don't think that's going to be a big deal to take by mouth. Even once she starts taking everything by mouth we can't touch her tube for 6 months before it can be removed but it's OK. She has already come this far. There is no need to rush anything. All of her doctors are so impressed with her and so are we.
I have been taking Molly to the Early Intervention scensory room once a week and she loves it. They have all kinds of equipment and things for her to do. She climbs up foam hills, rocks a little boat, crawls through tunnels. It really just amazes me how far she has come because leaving the hospital the way she did I never would've believed this is where she would be today. I still get down about how rough things have been for her but anyone in our position would. Then when I see her crawling over to Jay's planter and pulling the dirt out of it for the 500th time today it makes me so happy to see her getting into things she shouldn't and not listening to me when I tell her no (I know I'm going to regret that statement some day). We are also on a waiting list for a play group through Early Intervention. I think she would benefit from it and I can be there to supervise, sanitize and disinfect :) She is doing so great with standing and walking and I think this will help her so much more. Not to mention she loves being around other kids and to be around other kids and parents that are in a similar situation to us would be good for me too. It's hard not having anyone that can relate to you.
So we don't have to go back to Endocrine for 6 months and Growth & Nutrition for 3 months but we do have cardiology next month and that includes and echo and EKG :( I'm already stressing about it and it's not until the end of September. That is one appointment I can never put out of my mind. For now I'm going to enjoy all of the progress that she has made and continues to make every day.
As always, thank you for following the most amazing person I have ever met!
Kerry
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