5-year-old Audrey was born with her lungs connected to her stomach and an incomplete esophagus (Long Gap EA/TEF or Esophageal Atresia). After two big surgeries and 142 days in the NICU in Utah, Audrey finally moved home but has since needed much more surgery, now in Boston. Much of her food still comes through a tube directly into her stomach, and she has had many procedures to help her swallow food, but she is thriving today. Thank you for blessing us with your love and prayers.
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Sunday, September 18, 2011
Our NICU Slumber Party and Audrey's Big "Lawnch" Sunday, September 18
What a wild 'n craaazy slumber party we had! But life would be too boring if everything went according to plan, right? I should have taken it as a sign when very first thing I ran into another poor mom who had thought she was going home that day, had even bought balloons and then her baby had a tiny hiccup that kept them there for a few extra days, argh!..... and then, when we went to room in, the crib couldn't fit through the doorway of the private room and the nurses weren't sure what to do... finally they found someone who had been here when our other long-termer buddy Craig had gone home last week (biggest babies=biggest NICU cribs), who knew they had had to remove the corner bumpers with a screwdriver! hahahahah. We got somewhat settled in and all went swimmingly for a while. Usually Audrey goes to sleep around 9pm and it was at least that by the time we really got in there and were left to our own devices, and she was still wide awake so I pulled out our "Laughter Kit" which was a special good-bye gift from her hospital "Auntie" Robyn, and read her the book Tickle Monster then snuggled a bit, gave her her night meds, dressed her in her jammies and laid her down for bed. It was 10pm and we were all ready to switch to the home feeding pump, so the nurse came in to supervise and together we realized that despite all of the great demonstrations I had had of the many settings of this thing, the actual pump part did not work! It was crazy, we were on the phone with the 24 hour help line and they said the "Error 13" message we were getting was a mechanical failure that would require replacement, so we ended up using a hospital pump overnight after all and the nurse took care of it instead of me, it was so nice of her! But I felt guilty thinking, so much for hands on experience! (And good thing I'm not superstitious right? Error 13, hahaha! after all those uses of the word HOME.... that's why we say picnic instead!) Audrey normally sleeps through almost the whole night-- but she was very stimulated by the new room, and had two nasty diapers in the night, several refluxes and a ton of desats (we think it was just because her feet are so chubby and so active so it was getting a bad signal... ugh that stupid alarm kept BOTH of us awake all night!) Brooke was our night nurse, what a cutie and she was the primary nurse for our "predecessor" Sawyer! As she left she woefully said, "I hate to say this but this might keep you guys here longer!" My heart sank and it took a moment to register that she meant just a few hours longer if the replacement pump took a while to come. The loose frequent messy diapers didn't worry her, and we discussed lots of things about mixing the milk so that when Yvonne came on.... wonderful, magical, amazing Yvonne, everything went fine for the rest of the day, the new pump arrived and I got it figured out without a hitch, and sure enough, we were out of there and on the road by 3:45! Thank you and good bye for now, Primary Children's!! Audrey really took everything in stride, her siblings, the car ride, the outdoors, she snoozed half of the ride home, Gideon kept waving and cooing "hi!" to her from his carseat next to her, and tried several times to give her his sippy cup and favorite stuffed animal monkey. She woke up soon after we pulled in the driveway, and it was so hard to decide what to do first! We almost took her on a stroller ride, but everyone was hungry so we stayed home to fix something and I had to get her stuff set up, so we held off for the time being but did linger outside long enough to greet two of our friends who passed by, and it took us a moment to notice that she was staring, huge-eyed, at the ground by our feet as we stood on the lawn. She had never seen grass before.
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