We have such a great team of Dr's and therapists built up around us! Today we added another piece of the puzzle by meeting with a GI specialist.
As I have described before, Mabel is considered 'failure to thrive' medically speaking. Since 6 months of age she has only gained a pound. We have tried (and are still trying) high calorie formulas and foods to get her the proper nutrition but it is so hard for this little girl to grow.
She gets tired from sucking. She can only have so much food or formula before she hits her threshold and vomits. She gags, chokes, coughs and pukes. She chews a couple bites of food but it takes so much energy for her to do it that by the time she is finished, she probably burned more calories than she consumed. She works so hard at it, but it's just not quite enough.
Also, she is constantly constipated. Since she was a newborn, I have had to assist her in almost every bowel movement. Her body trembles with seizures when she tries to push and she is so exhausted after a bowel movement that she could sleep for hours. It's just too much work for her body to do what it should do naturally. We have tried miralax to no avail and we used to put pear juice in every single bottle of formula. However, when we started seeing that there was a need for more calories, we tried to take the juice away as they are a waste of caloric value during a feeding.
So all of these issues needed to be addressed with a GI specialist today. We need to get established with this Dr. anyway because if Mabel does have a mitochondrial disease, this is often a high concern. The Dr. today basically listened and agreed with me when I said that I feel like we have absolutely done all we can do to try and help Mabel gain weight. So at this point, we will be running some tests on her that will be sent to a surgeon for review. It is very probable that we will go ahead with a feeding tube at this point. He mentioned that Mabel will still be able to eat and drink regularly even with a tube, but we would be able to help her meet a higher thresh hold of calories and get her the proper amount of nutrition in a more efficient way.
Daniel and I have talked alot about it and prayed and we feel like this is our best chance at helping Mabel grow and give her more energy. We feel like, at this point, she is not developing even at a slow rate and if she had the proper nutrition maybe she would begin to make some greater strides. Whatever we decide, we feel that the Lord already knows and He is guiding us.
The nurse today was rather overwhelmed with Mabel and all we have done in the past 7 months. It reminded me that I really am settling into this new life and it is becoming pretty 'normal' for me. I've gotten good at talking with Dr's, and advocating for Mabel and...dare I say that I feel like I am at a really good place. Looking back, I see how far I have come in this emotional journey and it makes me hopeful that I will continue to feel better with each day, each appointment, and each change that comes our way.
I am amazed at Mabel. I am amazed at our Lord.
I am so truly blessed.