Let me just go ahead and sum up the big events of the day:
1. Emary's feeding tube was removed.
2. Her PICC line AND IV were removed, meaning...
3. No more pain medication and no more fluid feeding through the IV.
4. In one day, she went from eating 20 cc's in a bottle, to 45 cc's, to 50 cc's. (30 cc's is about an ounce, and most newborns eat 2 to 3 ounces per feeding.)
5. She is maintaining her own temperature, so with everything listed above removed, she was able to move to a big girl's crib in the NICU. (Same location, different crib.)
6. They measure length and head circumference on Sunday nights; due to the fluid on her brain, the head circumference is a big deal, but the increase in her head size was very reasonable and not concerning (to the nurse, at least).
Russell and I both changed a diaper today. Russell changed 2 actually, and he was really itching to change the first one. This REALLY bodes well for me :) He also took her temperature. He is proving to be a very hands-on daddy! I'm more nervous than he is about changing her diaper and moving her back too much.
Dr. Troup didn't come to see Emma today, but we should see him tomorrow. We are pleased with the incision, but we obviously have no medical background to back this up. However, we think the doc will surely be pleased as well - his concern was the skin pulling apart, and it definitely is NOT doing that.
Emma entertained us tonight during her 9:00 feeding. The nurse said that she "sings" when she eats. As the feeding went on, Emma just kept on making this sweet little noise of contentment, right on rhythm. Russell grabbed the camera, so we have most of it on video. She sang and sang the whole time she ate, and the nurse even said, "It's too good to be true!" She told us that most babies do not do it so loudly, for so long, and so on rhythm. The nurse told us that she does have pretty big hands and feet and long fingers. This might all mean that she has long piano fingers and great rhythm, which would delight Mary Jane (my mother-in-law) to pieces, since no one else is even close to being as musically inclined as she is. I almost posted the video, but it's a little long, and I'm trying to exercise some self-control and not be one of "those" moms.
I, personally, am still in a little pain. It's getting a little better each day, but I have my moments. Russell is only allowing me two trips up and down the stairs, but it's really not the stairs that get me - it's getting in and out of chairs. He's not a very bossy person, but he is when it comes to my health. He is a wonderful caregiver, and I thank God for him every day for so many reasons.
Today's picture is of her in her Furman cap, in her big girl bed, squeezing my finger. They put a hat, socks, and a small folded blanket on her back to keep her warm since she's not under the warmer anymore. We will be able to bring clothes for her very soon! We will most likely bring gowns that have elastic at the bottom and snaps that make the gown either be a gown or pants. The reason she needs snaps is that they will put them on her backwards, so the snaps are on the back and they can leave the snaps open where the incision is.
Thanks to all of you for your continued prayers. God has not healed Emma of the complications from spina bifida...not YET. This is still our prayer; in the meantime, He is blessing her and us with great strides in other areas. Even though she made a lot of progress today, I still found myself in a glass-half-empty state of mind every once in a while: other newborns are doing all these things on Day 1 of their lives. Emma wasn't born with any complications that prevented her from doing these things on Day 1, so when you think about it that way, maybe she DIDN'T make that much progress...she was just catching up to things she should have been doing all along. I know this kind of thinking isn't healthy, but I just get frustrated sometimes that the spina bifida surgery has kept her from doing the non-spina bifida things that she was capable of doing anyway. I'm not complaining, and I'm thankful for her progress, but these are the small disappointments that I still pray for relief from.
Well, enough of that negativity - I have to get to bed so that I will be refreshed for my sweet little girl tomorrow! Thanks again to all of you for keeping up with us and being the best support we could ask for.
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Thanks so much for the blog. I love keeping updated on Emma without bothering you two -- however, if you need anything from me, feel free to call office or cell. Stay positive! I think Emma is making great progress! Every child is different so just enjoy her milestones whenever they happen! Love you! Marcia
ReplyDeleteThank you for the blog! This is the firstthing I do when I get on my computer in the am. I look forward to hearing what Emma is doing. I can only imagine the ups and downs ya'll are going through. I am still praying for healing and I know Emma is going to be a remarkable young lady!
ReplyDeleteHolly
Mary Beth,
ReplyDeleteI think you are doing great. I can't imagine the emotional roller coaster you are on. Just take this time to truly treasure each new thing Emma does and don't worry if she does it different from others. She will feel special because of the love you and your husband are giving her. She is very blessed to have such caring parents who obviously love her so much already. Just know that this is just the beginning of a very wonderful life for all of you. May God hold her in His hands and heal her with His touch. God Bless you all!
Sandy Brundage