Ditch this tube!

We've made it through a crazy pregnancy, NICU, surgery, and literally hundreds of doctor's appointments and therapies; after all that the only thing holding Finn back from being a happy typical baby is this feeding tube! We've tried a couple home weans without success and have been doing crazy amounts of research. Between the Omphalocele mom group and the tubie mom group there was always one recommendation that popped up over and over with so so many good reviews and success stories, and that's GIE (Growing Independent Eaters). They are a consultation group who only does tube weaning for kids, they have an excellent success rate and set baby up with an individualized plan and constant communication with your team if you have any questions or concerns. This is exactly what we need. A team. Finn has a lot of doctors and a lot of therapists, but we have no way of contacting them all together or even getting them on the same page, one question turns into days of phone calls and multiple answers. Our doctors are great, but none of them have much experience weaning. The only downside to this process is that it is quite expensive and it is not at all covered by insurance. We'll start a page on fb about his weaning journey so everyone who wants updates can be involved and we're still accepting all the prayers we can get! I know God has blessed us and I see His miracles in Finn every day. Through everything we've been through I never thought that feeding would be the thing that would break me, but it has. I've been debating creating this because it's not something either Ryan or me want to do, but the biggest lesson we've learned is when to ask for help. Thank you all for everything you've already done for our family and the wonderful encouragement and support we've received over the last year.

fb group here 
Link to GIE website -if you'd like to learn more about tube weaning