Maggie never had her feeding tube put back in cause she's been eating all of her bottles - go Maggie! Each day they are slowly increasing her required volume so the pressure is on to get her to keep finishing them.
We haven't changed much about how we are feeding her - except that instead of swaddling her with her arms down (like a newborn) we leave her arms bent up so her hands are around her face and she can self -soothe by sucking on her fingers or clasping her hands together. I think most of our success is due to being in a quiet, darkened room with little distraction. Sure the nurses and techs and therapists are all barging in throughout the day like they did when I was on bed rest and never really got to "rest." We have gotten very frustrated a few times as we feel like half of the stress we are dealing with is trying to protect Maggie from the around the clock monitoring and testing that gets her off her routine. We say "no" when people want to wake her up to give her meds or treatments and "no more" when they try four times to get a urine sample without success and want to keep trying. She's just a baby; she needs a break.
Overall, though, Maggie is just as joyful as ever. She grins at every stranger that walks in her door. I wish I could be so joyful! Mary Lawrence has acclimated herself well here, too. Just like she did last Fall, as soon as she walks in the room she kicks her shoes off and makes herself right at home. I am keeping several of her toys in the room for her to play with and we also visit the hospital's playrooms and a playground.
Justin and I are just trying to get through each day an hour at a time. As Justin said the other day, we have never been under so much psychological stress in our entire lives as we have been during this past year. And it just seems to never end! But we know this hospital stay is just temporary and our prayer is that this intensive therapy will prevent Maggie from having to get a g-tube, and that itself will save us a lot of stress in the coming years.
Mary Lawrence will be admitted tomorrow morning to another hospital for her procedure. Praying for her not to be frightened and that I can explain to her in terms that she will understand why we are making her go through this. I also am praying that the procedure goes perfectly and she can go home tomorrow night feeling a million times better.