Sunday, May 16, 2010

Doing Well So Far...

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.


  1. I want you to know that I read every post you write and pray specifically for you guys daily.. You probably get sick of people saying, "I can't imagine..." but honestly until you've been there you just can't!! I know nothing I can say will change anything or make you feel better but please know that you're thought of daily and I've already lifted your family up in prayer this morning.. I hope ML understands what is going on today and that her stomach will be relieved!! Maggie still amazes me, as do you!! You probably don't hear it enough, you're a great mom!!

  2. How awesome that she is taking the bottles!!! Lee, you are would be so hard to be making decisions and working with Maggie and trying your best to be a good mom for her...if she was the only one...let alone, having a wonderful little girl who you also want to be a perfect mom for...we are only 8 weeks into having two children, but I am a total crazy quick story to make you feel a little more normal maybe (cause I think the mother's of two little kids are all crazy...) A few weeks back, Emily was maybe 5 weeks old, I took both of them to Walmart just to get some diapers and a few other things. As soon as he walked in, Kelly saw a box of crackers and asked if he could have it. Then, a few minutes later, he asked if we were going home after this...and he never really asks that, and I said yes...a little further into the store, he told me he was hungry...and i looked at my watch and it was 10:30, and Id totally forgotten to feed him that morning...Emily was fed, we were all fully clothed, but the poor boy had been without breakfast...nothing a donut at the Walmart bakery couldn't solve, but I too am nuts.

    We are praying for yall, and that the inpatient time will be a blessing from God, and a healing time for all four of you!!