So my dad told me last week about a distant relative's son that retched and puked so much the enamel on his teeth was warn away, and he had a feeding button. I was shocked and obviously wanted to know more because it seems like whenever I do research to try to find solutions for McKenna nobody has the same problem we do, or nobody has solutions. Not only that but I can't find a support group which is totally what I could use right now, a shoulder to cry on that is going through what we are going through.
I was further in awe when my dad told me about Jack, the little boy, being weaned off the feeding tube. He no longer retches and is eating 100% orally...no feeding tube. Can't even imagine that. So I emailed Krista asking if I can call and ask her a million questions and she was so helpful to send me a blog and two web sites along with details on the weaning process at home. I am dying and eager to start this weaning process, but planning to wait until we go to Chicago and do the swallow study and make sure that they are okay with us moving forward with a drastic approach like this.
Basically you take a week to decrease tube feeds and by day 6 you are off tube feeds completely. Babies lose average of 6% weight which means McKenna would lose about 1 1/2 lbs and they will allow baby to lose up to 10% but anything over that they make you get back on the feeding tube.
So yesterday I started doing more research, looking at blogs, watching youtube videos etc and it is so sad to see kids that can't eat that want to. They looked so confused and frustrated in the video and it made me question if I really will have the courage to go forward with this process. I want to try it but making McKenna go without food breaks my heart.
So, I am in prayer. We would like to wait to do it until the beginning of March. Who are we kidding, would be easiest to do it when daddy is out of town because he stresses so much about this stuff, but he won't be gone for several months so I am just praying that God give me direction and if this is something we are suppose to do that Kyle would be on board and we would start this approach by beginning of March.
In the mean time, I am giving McKenna cheerios throughout the day. She spits them out, chews them up and spits them out or just throws them, but she needs to be okay with playing with food, or more so IIII need to be okay with her playing. Also I have not really orally fed her for two days. I always give her purees but she doesn't like babyfood and it is so routine, so I am trying more of the weaning approach. Giving her solids like string cheese, crackers, cereal, pizza, etc and letting her play with it and put it in her mouth and chew it and spit it, etc. Hope doing this doesn't set her backward, but honestly we need to try something different at this point, so I am doing this, and giving her a sippy cup all day long to carry around with her. She took multiple drinks of water from it today and even took drinks from a play teacup. I was in tears. So grateful.
I can't even begin to imagine what it will be like when McKenna starts eating again. So many things we take for grantit, but I will be so grateful for my daughter not having to retch all day long, not waking up to retching, not sitting outside her bedroom during nap time until she falls asleep to make sure she doesn't retch, getting to go to church and put the kids in nursery, not having to send her to a special education classroom because of the retching and feeding tube, both kids getting to go to pre-school, mommy going out with friends before 7 pm because daddy would be able to feed both kids, going on playdates or running errands without scheduling it around a 2 1/2 hour return home to tube and oral feed at same time, not cleaning up puke from carseat every week, not changing 4 plus outfits on McKenna everyday from puke, not having to run laundry loads daily because of spit cloths smelling up the house every night, not having to stack up on carpet cleaner because of the puke...the list could go on and on...yes will be more convenient for me, but more importantly will be so good for McKenna. NO more painful retching, no more painful tube changes or cleanings or possible tearing it out, or risk of infections or fear of her getting sick because she is more at risk and suffers more from gagging/puking, no more sore throat and erroded esophagus from retching...please Lord, let this be a possible answer for us.