 |
| Getting her bed ready at home!!! She'll be right next to us. The pool noodle is to keep her in the centered position so her torso is elevated for preventing aspiration from reflux. |
What a whirlwind week.... really our past
three weeks have been a flurry of school starting and steady progress for Audrey until she has finally been cleared for departure! I am thrilled and exhausted. It has been a long road, and there are many miles yet to cover, but I know that home will heal much that is wrong in the universe. Today is my last morning at home without her. Things are deceptively quiet... the sunlight is dancing on her new pack n play bassinet nestled between my side of the bed and the window, where I think we have finally figured out a combination of means to get her torso sufficiently elevated.
 |
| Thank you Ashli!! |
Yesterday I had gone up super early to say good-bye to our cute night nurse Ashli, with the intention to come home around noon and get the kids from their early out Friday school schedule. Instead, I learned around 7 am that our friend Melissa and her baby had been life flighted to Primary overnight,
 |
| Melissa and Colin meet Audrey |
and her husband had had to return home to help with their other children, so I spent the morning with her and we navigated that craziness together, then I went upstairs to get trained in one rapid succession of home feeding pump, G-tube emergency, Apnea monitor, and mathematical food mixing, then we got our car seat safety check, and then I drove Melissa and baby Colin home, afterward stopped in the driveway of my house to pick up baby Gideon and run to the grocery store with him, then came home for just a few minutes to prep food and freshen up for a church dinner. I was falling asleep while posting photos online! But today we are back at it after a lazy Saturday morning. Wanted to share a few things about our past several days:
Taking Audrey outdoors was the culmination of a long-held dream, and it was everything I had hoped. The first time we just went out to the enclosed patio on the third floor, but the second time we went all the way to the Angel Garden, near the front entrance of the hospital, where there is a waterfall and lots of trees and birds to look at. It was perfect. She looked at everything with round curious eyes, up, down, and all around. There was a magical moment when a breeze picked up and wafted over her face, lifting her hair, and she closed her eyes as if to say, “wow.”
 |
| Tired, tired momma. But so happy to be outside in the Angel Garden at last. |
Two days later we finally got the family together for the first time, by bringing her out to the patio where all of her siblings were scrubbed and waiting. Her big baby brother Gideon and she met for the first time, and they smiled and cooed at each other. He was pretty impressed with her wagon and wanted to climb in with her, and got frustrated when Daddy would not let him kiss her or touch her face. We have done this same kind of family meeting twice since then, and each time she has had less stuff attached to her. I'm calling this Sunday's impending release “Audrey: Unplugged” because in the past couple of weeks she has ditched the picc line (which clotted off and had to be removed) and a series of about seven peripheral I.V.s (which also each went bad within about 24 hours) that were needed to continue a steadily smaller amount of intravenous nutrition until her stomach could handle “full volume.” It takes time for damaged veins to heal, and we had used so many that we
were running out of them for I.V.s, so when the last P.I.V. went bad we
actually pulled it about a day early. Her poor tummy was really
struggling with the large amount of milk needed to satisfy the
mathematical formula of how much they say she needs; it was like that
"post-Thanksgiving dinner" feeling all the time for her, she would moan
and fuss with how full her belly felt, and some days she couldn't sleep
normally. I felt so bad for her! There was no hope of relief until
her stomach stretched bigger, because the pump is continuous. None of
my babies have ever been as big as she at this age, so we tried gently
arguing about it, but they said they had pushed the math as far as they
dared, and she actually has a small stomach because of her EA and that
by pushing the volume it encourages it to stretch and grow quickly, and
of course by stretching out that total volume over an entire day of
continuous pumped feeds, it makes it less hard on her stomach than a
larger volume of bolus “meals”. That will be our next step, to build
into larger volumes over shorter times, with breaks in between, but that
can be tackled with the help of her doctors after getting home.
Annnnnd, happy, happy news about her pancreas: this week she had a
six-hour "fast" when they turned off her pump and checked her blood
sugar every hour (poke poke! so sad, she got to cringing whenever the
hall door would open around the hour mark!) but at the end, her readings
were perfect! She passed with flying colors! And they said they think
that scare is at last behind us. Our biggest challenge since ditching
the TPN has been the refluxing. At least once a day she will suddenly
start heaving and suddenly milk bubbles out her mouth and sometimes even
her nose. It is always so scary to watch her struggle for breath as
she works to swallow and sort out things in her throat! Her paralyzed
vocal chord is hopefully in the process of healing so that she can
protect her lungs from spit and reflux, and we are grateful that she
hasn't had any further episodes of fluid in the lungs-- we also keep her
torso elevated all the time which helps keep her airway clear. We have
an appointment near the end of October to scope her throat again and
see if her vocal chords are healed so that she can begin trying eating
by mouth again. That will be the key to a lot of things, but the
delayed timing will be good in a lot of ways. Currently, her oral
aversion is so severe that she will not open her mouth for ANYthing
except to yawn. She even cries with her mouth closed, and gags any time
something begins to go past her lips... it is so sad to think that this
has developed since her surgery, but it is one of the primary things I
see opportunities to heal at home. One day about a week ago, I tried
non nutritive breastfeeding for the first time in ages-- it was so sweet
to see that she remembered how to root, and that she was frustrated
with herself for not being able to open her mouth without starting to
gag. She fell asleep in my arms nestled against my chest, and the next
day Kiley was amazed to see that she was doing a lot better at not
gagging as she stroked her lips with a lollipop.
It has been kind of surreal managing the onslaught of upcoming doctor appointments and equipment training and emergency skills, but I think we are finally about there. It definitely feels like being about to give birth again, then patiently extricating my baby from the hospital while simultaneously feeling twinges of worry about my own abilities to handle her special needs. Months ago, there was a story shared in parent hour that has proved relevant time and time again. It was called “Welcome to Holland,” and I've shared it below. I
hope that one day Audrey will be able to eat normally and manage her reflux safely, I hope that her G tube will some day soon be a thing of the past, I hope that one day she will be running around normally with faded scars eating mac n cheese. But I will never, never forget what it is like to know that my baby is different. She is now almost sixteen pounds, and 142 days old, and tomorrow she will leave the hospital for the first time. That should make me happy, and of course it does! ...but in another sense I grieve. I will look at those tiny clothes that were supposed to be hers, that I had saved for her from my first baby and some even from my own babyhood, that she will never wear, and I will feel a little sad. But then I will look at this beautiful, strong, happy child who has been through so much, and I will remember that so many babies have it so much harder, and I will thank my lucky stars—and my amazing God who has cradled us through it all—for the blessings that we have. Family and friends, nurses and doctors, therapists and helpers of every flavor, you have been our angels. Here's to team Audrey and the adventures yet to come!
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
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.
