April 25th - Nothing really new to report. They are still trying the to wean Ava off her ventilator. I did get to hold her quite a bit. She was really mad about something and if she hadn't had the tube in her throat the whole NICU would have been able to here her.
The webelos had a field trip to a construction site for part of thier engineering pin requirements. Didn't get to talke to Blake to find out how that went, maybe he'll tell me about it when Ava and I are finally able to go home, whenever that is.
Robert, Blake and Zane are out for a ride in Great Falls, so it must be a nice day there too.
April 21st - Today Ava moved out of her isolette (condo), they opened the sky light to let in more fresh air and she was able to hold her own temp.
The webelos had a field trip to a construction site for part of thier engineering pin requirements. Didn't get to talke to Blake to find out how that went, maybe he'll tell me about it when Ava and I are finally able to go home, whenever that is.
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April 24th - Today was better for Ava as she didn't destat as often as she is happy with her steroid, she was a hot body in her onsie, sleeper and wrapped up in her blanket. Took awhile today to get a chance to hold her, but held her in just her blankie trying to cool off the hot body. I asked the nurse today what she weighs these days in pounds and ounces as everything is in grams or kilograms. She is upto 3 lbs 12 oz.
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April 23rd - We got a package from Dad all our clothes and one from my friend Rita. She sent a really cute outfit and the most appropriate burp cloth.
The burp cloth is so Ava as she seems to have the RT and Nurse and every other nurse or rt arround coming into her room at day and night some days as she constantly sets off her alarms by dropping her oxygenation levels or heart rate. I've decided to get some permanant markers or fabric markers and have the staff at both NICU's sign it as a keepsake.
On the medical front. The Pulmonary Care specialists for asked for consult on her to give suggestion on how to best help her to get off the ventilator. They are suggestion the steroid burt (3 days), then weaning her off instead of the cold turkey approach. She started the steroid today. They also want to do a scope of her bronchial tube. She still destats down into the 60's and 70's and is on a high level of oxygen.
I got some holding time in about 2 hours worth, before i had to head to the RM House.
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April 22nd - Today was a beautiful day in Seattle. Warm and sunny. Now that Ava is in her big girl bed it is easier to hold her. Still no idea as to when she'll get released back to Great Falls. Now her daily plan says when no surgical intervention is needed, and we know she needs one more surgery for sure but was originally told that would take place in 6 months, until then the major plan includes strengthening her lungs so we can get her off the ventilator and eventually off all air support. Robert, Blake and Zane are out for a ride in Great Falls, so it must be a nice day there too.
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April 21st - Today Ava moved out of her isolette (condo), they opened the sky light to let in more fresh air and she was able to hold her own temp.
and into a big girl bed. She was able to hold her temperature for 24 hours.
Being watched over by her Brother Zane the Lion, Our friends the Christensen's, and Blake Brother Bear
While mom and fun with Dottie, Ranae and Kye. Ava got a NICU Spa treatment from her favorite primary Nurse Alayne - sponge bath, lotion run and her hair scrubbed and washed and styled.
I hear tell that the Tiger Scouts visited the Lewis & Clark Museum, Hiked over to the Park along the River and had a Picnic today.
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April 20th- She's been a good girl while mom's there, when she starts to drop her stats mom let's her know she's there. She started feeds again at 10 am, fingers crossed she stays on them and starts taking on more milk as the days go by.
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April 19th -
Little Ava - 9 Weeks old today.
The Surgeon's gave the go ahead to let Ava start back on feeds, 1/2 ml per hour. otherwise Ava is still doing the newborn thing. She did fairly good today. Only a few minor destats that mom was able to help her out of by rubbing her head. She had a fever about 4pm just before Maxine, Nancy and Kayla arrived for care time. They got to see all the things they do (all the blood draws, just missed the diaper change and temp check), repositioning ectra. After they got to spend some time with Ava we headed down to University Village and found me a umbrella - since its about time i got one for the wonderful rainy weather around here. We also went on a hunt for the perfect bag/diaper bag - found styles I liked but not colors I like. Tried out the food at the Ram Restaurant and Brewery - good food, they were a little over zealous with the cilantro - it was in the coleslaw and the soup as well.
Ava had a couple brady's during shift change - just letting Julie the nurse know who's boss and one episode of destating overnight that required bagging back up. So since she brady'd and the temp thing the took her off feeds for the night even though she was tolerating them well.
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