Taylor's formula was hooked up to the tube feed before I woke up so I didn't have a chance to try the bottle. But her breakfast tray was here so I mixed everything together and gave it a whirl. She ate the whole meal....GO SUPERGIRL!!!
Mom arrived a little while later with a latte for me, and just in time to be here for rounds. The docs were very pleased to hear that Taylor was starting to eat. We're going to see if she'll take some formula from the bottle at lunchtime. At this point, with Taylor's willingness to eat, they don't really have any questions for the GI docs. And there continues to be no indication or reason for them to think she's aspirating.
Lunchtime arrived, Taylor had been cuddling nicely in Granny's arms so we just kept her there and gave the bottle a try first. Francis arrived shortly after and got to see Taylor drinking...she drank 65 mLs!!!!! We were sure celebrating that accomplishment. First drink she's taken since 3pm on Thursday. Granny handed her over to Daddy for his turn to cuddle and then her food tray arrived so I mixed it up and she ate two thirds of it!!! What progress my sweet girl is making! Starting to see the light at the end of the tunnel.
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| First bottle feed in 5 days! |
Just as Francis was about to head back to work, the Music Therapist came through our door, so he stayed while she was here. We know Sarah, she does Music Therapy through JB Music at Pace on Friday mornings. We were going to have her come to Taylor's little birthday party, but it didn't work out when Taylor's struggles last week escalated and we landed in the hospital. She knew we were here so when she got to our unit she came looking for us...what a nice surprise! How nice to have our own private time as a family with Sarah. She played her guitar and sang for a bit, then we put Taylor's hand on the strings and let her feel them and make sounds. She had a few other instruments that she used with Taylor and spent some time letting her explore them. After that she played her guitar again and sang a very beautiful, very tender rendition of "You Are My Sunshine", followed by "Let The Sunshine In". It was very touching, Francis got pretty emotional, then I started, and I think Sarah fled the scene before she joined in! She was wonderful with Taylor and she has the most beautiful voice. I feel very grateful that we got to share this with Taylor today. Thank you so very much Sarah, you have a very special gift in what you do.
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| Taylor's turn on the guitar |
Dad and Marny arrived just as Sarah was finishing, and with Crave cupcakes in hand......Mmmmm. Taylor was so very relaxed, calm and quiet all day today. Sort of zoned out really. She was very receptive to being held and cuddled...so we all took up the opportunity to get in our snuggles while we could. Granny had a good long one this morning, then Daddy over lunchtime. She had a bit of a sleep when Dad and Marny arrived, then they each had a long cuddle with the little angel. The OT popped in to see how Taylor was making out and she was very happy to hear that she's been eating and drinking a bit.
She had some leakage through her sleeper so when I changed her diaper I decided to put on one of the outfits they brought her for her birthday. She looked ADORABLE. It was nice to see the little munchkin in something other than a sleeper. I strapped her into the wheelchair and went downstairs to see the fish, say goodbye to Grandma and Grandpa, and get some tea.
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| Can't get enough of how sweet she looks sleeping |
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| In one of her b-day outfits from Grandma & Grandpa |
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| GORGEOUS xoxoxo |
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| Watching the fish |
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| On our walkabout...or wheelabout! |
Shortly after I got back to the room it was feeding time. She took about 45 out of the 140mL of formula by bottle, then the rest went through the tube. When her supper came she didn't disappoint, ate 84% of it. Good job sweetheart! Spoon in one hand, camera in the other, I managed to get a shot of her nice open mouth ready to take a bite! Now we just need the drinking to improve.
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| Nice open mouth Taylor...keep up the good work! |
Taylor is sound asleep as I finish this so I just had the nurse put her last feed through the tube instead of waking her up and trying the bottle. We'll get back at it in the morning.
Natasha, Thanks so very much for keeping everyone up to date with Taylor's progress. It really sounds like things are finally turning around for her. So happy she's able to eat and drink better, and that she doesn't appear to be in pain anymore.
ReplyDeleteOn another note, just wanted to say that I believe that YOU are the real Supergirl. All your time and energy is spent at the hospital or at home at Taylor's side. She is so very blessed that you have been chosen to be her mother. I know that many, many times it must feel overwhelming, and you must be so tired. I think about you often, and it's always with such respect and admiration. Wish I could be there to give you a break from time to time.
Thanks for keeping up the blog. It's so good to be kept up to date with all Taylor's ups and downs, and her major accomplishments. It's like being there. I'm sure it's also cathartic for you to be able talk about it.
Take care, you two Supergirls. You both amaze me every single day!!!!!
xoxo
Barbara