Tuesday, September 6

Thank you again, with all our hearts, to everyone who has prayed and fasted for our little Audrey! Crazy life hasn't left much time for writing in the blog, but she is improving every day! No promises but.... really.... it might be days, not weeks, before she is in our arms to stay!

A few of the special people in Audrey's world!  Above center, Robyn is our angelic hospital "Auntie" who visited Audrey on some of the days we could not, for the sole purpose of cuddling and playtime. She made a huuuuuuge difference in my guilt level and we are so thankful for her tender attention to our baby girl.  Above right, is our fantastic dietician, Cecilia. What an awesome lady. I will miss her!  Below center, our sweet friend Angie and her family were our neighbors a few years ago, and this June when she gave birth 16 weeks early to her beautiful baby Charly, we became neighbors again, this time in the NICU.  It has been a joy and privilege to share in their family's journey both in person and online at her gorgeous website, charlybella.blogspot.com  Below left, our mutual friend Lynn and I attended Charly's baby shower, and then went to visit Audrey that evening, where Lynn filled the NICU with her beautiful singing voice as she sang "A Song For the Mira" to Audrey.

Audrey was delighted with her lullaby serenade from Lynn. She stared at her and couldn't stop smiling, and then her eyes gradually closed, and then after a minute she opened them again to smile at Lynn just one more time, then closed them and slept peacefully.
 
I wish I had time or the energy right now to write about the past few days, weeks, whatever it is that mush of time since I last updated things, but here's a nutshell update on just the medical stuff: her refluxing is strong but only happening a couple of times a day at the moment, Sunday morning her Picc line went bad so we had to go to a peripheral IV to give her TPN, which made the IVs go bad SUPER fast (like she was getting it replaced within 24 hrs, poor baby!), and today we dropped that yucky TPN at last and she will just get the less caustic part of the TPN through her IV until we finally get her up to full feeds again through her g tube... which hopefully will be in a couple of days. They've been raising the milk amounts faster since the picc went bad, but we are all super concerned that it may be too fast for her stomach to handle. Today was the first time that she has had milk come out of her mouth (and nose) when she refluxed, since right after surgery... but it only happened once today and she was good the rest of the day. She is still on continuous feeds and might even come home that way, because of the concerns over her low blood sugars from a while ago, but so far there hasn't been a chance for us to really see whether her pancreas has improved because she hasn't ever been without a constant stream of sugar coming in, still they are checking her fairly often (poke poke, sad!) but the results are good. Her liver problem has dropped to ONE FOURTH of when we were so scared last week, so that is a huge YAY too. And we also think her voice is sounding much stronger, so we are hoping there is some measurable improvement there too--which would be a step toward mouth feeds! She is still not opening her mouth much at all, but we see tiny improvements almost daily now even with that.... what a beautiful lesson in patience this is!! I just know that having her home is going to give us the time we need to do things at her pace, with all the positive sweet reinforcements she will need to overcome this!

Occupational therapy with Kylie! It still makes me giggle to think that Audrey's "occupation" is pretty much just normal baby stuff, flexing and exercising the right muscles to scoot, and so forth.  But watching you could see that Audrey was working hard-- this stuff was pretty difficult for her and she didn't like having to do it, but she looked so good when she did! The gunk on her face is from the hearing test electrodes-- whatever that stuff was, it was really tough to get off without hurting her! I really am so proud of her for enduring so patiently! I think she knows good things are coming!

She's working on getting used to hands by the mouth. Her oral aversion causes her to gag any time something goes past her lips, so we are working on just getting gently used to normal baby things like that. I love that chunky monkey grin! 

 

Car Seat Test! 

 

When a baby is nearing discharge, one requirement is that they have you bring in your infant car seat so they can check it for safety and test to see if the baby will tolerate being in the seat for the time it takes to get home.  In our case, she only had to sit buckled in her seat for a little over an hour, and to my delight she did great!  Since Utah is so large and our hospital also serves several nearby states, some babies have to endure even longer tests, and they don't always pass so easily.  We felt blessed that she did so well on her first try.  It means one less obstacle in our path to discharge!