A Tough Day

Sweet Baby Girl,

Today was tough for you. Daddy and I want you to know how much we love you and what a strong baby you are. We wish we could take your place and go through this for you. They increased your feeds last night and you didn't tolerate it...early in the morning you threw up and they cut back your feeds, but you were producing way too much stool again (because they fed you too much!) and so they stopped feeding you formula and put you on pedialyte for the day and on top of that they put you back on isolation...so now I have to wear the scratchy yellow gown when I hold you. So your tummy was hurting this morning when Nana and I got there. They also put a catheter in you because they want to collect urine for 24 hours to give them information about your kidney stone (which you've had since birth and it hasn't affected you yet...). I think the catheter was also making you uncomfortable. At about 1:30 your catheter came out and there was a big concern that part of it was still in you and that it was blocking you from peeing. Thankfully that ended up not being true and you finally peed which made me very happy. I was really upset about the whole thing because this is the 3rd time they've tried and the catheter hasn't stayed in, so I told the doctors that they couldn't do it again...if they wanted to collect your urine they'd need to use a bag instead. It was just too hard for me to see you uncomfortable again. The worst part of your day was when they came to draw blood to make sure you were ok since you'd had a lot of stool earlier. I told the lab lady that she needed to be real good because you were a difficult one to get blood from and that I did not want you to be poked needlessly since you'd gone through so much already. It took her two tries to get enough blood from you and in the process you got so angry that you pulled your feeding tube out of your nose. Nobody blamed you because of what you had to go through, but that meant you had to get another nose tube put in. Nana got to hold you after all of that and you finally fell asleep in her arms. That was real nice. Later you cried every time someone touched you because you thought it was going to be bad and I wished I could make it better. A nurse who keeps track of you came by to see you later and she was so impressed with how well you were doing! She told me that the fact that you are moving both sides of your face when you smile and that your tongue is moving are such positive signs. She was really encouraged. She also said that your cry is a normal angry baby cry and that you were crying because you understood what was happening and she said that is different than a cry of a baby that doesn't understand...so she said that was real encouraging also. The best part of your day came in the evening when Daddy and Aunt Laura (aka Aunt Goose) and Grampa Flash came to see you. We were sad to see them go, but know that we'll see them soon. I finally got you to sleep and left myself, but I always come back. Mommy and Daddy always come back. We love you baby girl!!!

Love always,
Mommy and Daddy

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Please pray for Mia's feedings, that she would tolerate the formula tomorrow and get to a level they would be happy with. Please pray for them to get rid of the room air blowing in her nose, we are so close...the respiratory therapist said her pneumonia is gone, her lungs are clear, but they are still weaning her very slowing from the air. And please continue to pray for her tolerating less seizure medicine. And then also pray for continued healing. And wisdom on the part of the doctors. Thank you thank you thank you for praying, it means so much to us. God is faithful and continues to be so gracious and good to our sweet baby girl.