Sorry I haven't been on in a while, we've been struggling. First the good news.....Early On (our birth to 3 program) came and did Madilyn's 6 month evaluation on her IFSP goals and I am very proud to say that she has already passed all of her 6 month and 1 year goals. She is already passed the goals they set for mid-January 2014 for sitting, speech and fine motor skills which puts me over the moon. New goals have been written and we are working towards them now!!!
Now for the rest of it.......as everyone knows feedings have been our biggest struggle ever. The puking, oh the dreaded puking has caused so many problems, frustrations and tears. We have a new GI doctor that we are pleased with, his communication skills are great and he's easy to talk to. I feel like he really listens to me and he is very thorough with his explanations. We switched at the end of last month to a higher calorie formula mix from Pediasure and while it has made a big difference, it's not enough. The puking is back with a vengeance. The puking makes the back of Madilyn's tongue raw and irritated and she digs at it and won't eat. I can't even begin to imagine what it has done to her stomach and esophagus. The end of May she weighed 14lbs and it's almost August and she's only 14lbs 1.5 ounces. At one point we were up to 14lbs 4.5 ounces.......I made a promise to God, myself and Madilyn that I would always do what was best for her and the time has come. We are looking into (per the recommendation of 2 GI doctor's and the Special Needs Care Coordination Clinic) switching from a G-tube to a G/J tube. The G-tube we currently use feeds directly into her stomach while the J-tube part of it feeds directly into her intestines. The Care Coordination Clinic is helping us to work out a schedule so we will still use her stomach (G-tube) at times during the day otherwise the setbacks are way to expansive to even begin talking about. The J-tube feeds will be longer but she will gain weight faster (we hope) and it will give her the reprieve she needs from the constant puking, it will allow things to heal and hopefully we will be able to make real progress with the oral feedings and get her taking more food.
They will be doing an EGD scope at the same time to look at the potential damage all of the puking has done and to see if there is something wrong that can be easily corrected. It has the potential to answer all of our questions or absolutely none of them. Sometimes children with neurological problems like Madilyn just have disconnections between the brain and parts of the body and there is no explanation at all as to why things don't work properly. Either way it can't be put off any longer. She has only gained 2 pounds in 6 months and while she is thriving in every other way and stretching we run the risk of undoing all of that without proper weight gain. We can get way more formula into her than the Pediasure but we are at a point that it's not physically possible to up her feeds any more as she cannot tolerate them and her calorie consumption cannot keep up with her increasing activity levels.
It will change the challenges that we face daily........instead of figuring out how to keep her upright and somewhat immobile so her feeds stay in we'll have to figure out how to chase her around and play in her toys with a 3 foot feeding tube attached to her. We'll deal more often with the pump/tube than packing like we're running away from home with multiple outfit changes, extra carseat/stroller padding for all of the potential puke.
This has not been an easy decision and tons of tears have been shed and a stress migraine has been brewing for 2 days. We run the risk that she may never be able to come off of the J-tube feeds. We also run the risk that we may do this and other than a break from the puking to let things heal it might not make any difference with her weight gain. With Madilyn's chromosome abnormality there's no comparison so we have no idea how big she's supposed to be or how big she'll get, but at least by trying we will know.
She will be hospitalized for a few days while they figure out the new feed rates and tolerance levels and it will mean even more trips to Milwaukee as the tube will need to be switched every 3 months and this one I cannot change myself. It brings with it more stresses about money as I will have to miss quite a bit of time from work for this transition and it's an unexpected several day trip to Milwaukee with another one coming up the first week of September.
I have always said that everything happens for a reason and that I will never not trust my gut instincts so even though I don't know and may never know the reasons I am going to trust my gut that this is the best thing for Madilyn...............and I will pray
