First Dilation

She's such a trooper. The surgeon made progress. She'll be back in for more next week, and each week after that for at least four or five times he said, and he said to expect it to close in again in the future. But for now, we have come up from a very miniscule hole to about a quarter inch opening, which is wonderful! Post surgery, she had to wear arm restraints and she was panicked because when she came out of surgery she couldn't bend her arms... it was sad to watch. Plus the IV in her foot was hurting and there was a board on it preventing her from bending her foot, and into her nose and out her belly, taped all over her body is a funny looking string, looks like dental floss, that the surgeon left in as a guide for the next dilations. Not sure how long she'll need to wear it, but it looks sooo uncomfortable. Tylenol, rest, and she is back to smiles, but poor baby! I'm supposed to have her wear the arm restraints at night and any time I'm not right with her, to keep her from pulling on the string. Even though it's taped down, it is suture thread, sharp compared with skin and could injure her if she pulled it against her little nostril. Do I have the guts to put those things back on her? She was terrified and flailing at the hospital, as she came out of anesthesia.

Pressing Forward with Faith

Four and a half weeks home, and it seems like a blink. I've been avoiding the computer for the past two of them, reading my kids' library books and trying to figure out what to say in a blog post... but feeling pretty drained of artistic eloquence. There is so much to share, but a lot of it is just, well, mucking through the plain old hard work part of being home again with our other four kids, plus Audrey. We have ups and downs (and sometimes the downs and downs) of discouragement and feeling overwhelmed, and then there are these moments of sweetness and light where I just think, ok, this is worth it, and infinitely more.

Her first five days at home were pretty eventful. She and I slept most of the first two days, and oh she was a precious sight, sleeping in her little pink cloud of a bed beside my sunny bedroom window, right beside my bed. I could hardly leave her side. On the third day we took her to her first regular appointment with her new pediatrician. It was a huge production just to get her out the door, since we were still getting used to her gear and everything, and a busy doctor's office full of sick children was the last place I wanted to take her. We made it through that, and she came home to the happy welcome of her loving siblings, joined us for family dinner in her own high chair (even though she can't eat, she can watch! It's great therapy for her to watch her family eating-- it's something she's never seen, and I am convinced it will help her to get used to the idea that that's what mouths are for. It has worked! All that observation, plus teasing and relaxed play over the past month, has released her oral aversion to where she will finally open her mouth and put her own fingers in, a huge hooray!).

And then on her fifth night home, she got sick with a nasty head cold. Aside from the usual aches and stuffiness, it made her reflux much worse. When she refluxes, she suddenly gags, then chokes and sputters and gasps for breath while thick bubbles come out her mouth and nose. At the end of each episode, when she finally finishes wrestling with herself, she looks up at us and smiles wide as if to say, "I did it!" It normally happens about 10-15 times a day. That night alone she must have topped thirty. We set her an appointment to see her pediatrician again that afternoon—their earliest opening, and daddy took her to that while I took our oldest child to a much-anticipated broadway show in Salt Lake for an early birthday gift from grandma. I called after the show and learned that Audrey had been measured at the high 80s for her oxygen saturation, and that the doctor had said if she got any worse, to take her back up to the hospital. Audrey had been terrified in the doctor's office, and kept looking all around with a very worried expression and trembling, as if she knew they might not let her go back home. Up in Salt Lake, I was supposed to be enjoying myself with my oldest, but I could barely pull my mind away from worrying about Audrey. Would she have to go back to the hospital so soon after coming home at last? Was this what our life was going to be like from now on? In and out of the hospital, and back again on the turn of a dime? I had been blessed to be strong through so many challenges this summer, but when I thought of this I could hardly bear the thought. On the drive home, my oldest fell asleep in the car, and I had a few minutes alone with my thoughts. I felt more than ever the split life that I'd been living, away from my children, away from my husband, away from my parents in Oregon and my sweet grandmothers, one of whom has just lost her husband this summer. I missed them all so terribly. I knew that the hospital is a wonderful place, that they have taken incredible care of my baby, but I was so homesick for my family to be together. I thought about a beautiful dream I'd had that week, that had stuck with me profoundly--the Savior had come again to earth, and though I didn't see his return with my eyes, I had been filled with the peace and the joy of that sure knowledge, and then after a few moments, just a tinge of worry and wondering about whether I was prepared. Not long after, Christ came to my home to heal my baby, but in order to let him in, I was asked to recognize him out of a crowd. My eyes searched each of the faces, and finally rested on a man being held in the arms of his friends. I reached forward to take his hand, and the Savior “started from disguise.” I felt wrapped in love and so comforted in that moment, and when I awoke it was a different type of homesickness that left me filled with longing. Now, as I drove home from the city, seemingly halfway between so many worlds, tears filled my eyes as a song I'd never heard before played. It seemed like the echo of my heart, replete with so many meanings:

You're in a better place, I've heard a thousand times
And at least a thousand times I've rejoiced for you
But the reason why I'm broken, the reason why I cry
Is how long must I wait to be with you

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

Help me Lord cause I don't understand your ways
The reason why I wonder if I'll ever know
But, even if you showed me, the hurt would be the same
Cause I'm still here so far away from home

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

In Christ, there are no goodbyes
And in Christ, there is no end
So I'll hold onto Jesus with all that I have
To see you again
To see you again

And I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow

I've never been more homesick than now

(“Homesick”, by Mercy Me)

Once again, that night I called upon our friends and family for prayers for Audrey, and by morning she had turned the corner toward being well again.

The next couple of weeks she steadily gained in strength and stamina until we eventually decided she was ready to make it out on some adventures. We took her on an exciting hike where she got to participate in the annual homecoming tradition of “lighting the Y” on the mountain at dusk.

We made it!


With Cosmo, the Cougar

We are still a bit clumsy with her G-tube-- it accidentally came out twice that first week, until we figured out that we needed to pin the tube to her diaper. Ever since then, she has leaked a fair amount whenever she puts any pressure on her stomach by laying or even resting on her tummy, but our trick has worked well and it has never come out again, but on the hike it had come undone from the tube and leaked all over, making her wet and hungry, so it wasn't as nice for her as we'd hoped, but she's been very patient with our learning curve. Our million-dollar baby also needed straight Neosporin on her poor little bum for the first couple of weeks, because apparently the simple switch from (hospital-only) liquid to (home) powdered formula (even though it was the same type, Nutramigen) was enough to give her the worst diaper rash we'd ever seen, a topical staph infection that refused to go away with anything but antibiotics. And six weeks later she still has a stubborn rash from the adhesive on the hospital monitor leads, that I am now treating like an eczema flareup, with success.

Her first followup visit to see Dr. Downey in his new practice, he evaluated her weight gain according to the growth chart and showed me how she had steadily climbed from the 45^th percentile at birth to the 95^th. He felt she was being overfed, and looking at her chubby rolls, then back at our other petite children, we totally agreed. He lowered her overall calories and since then I feel her reflux has improved, until the past few days. He ordered a swallow study to evaluate the way she is swallowing liquids, which is the first step toward oral feeds, and he advised us that once she does begin to take a little food by mouth, she will probably not take a bottle at all. She will probably take food only by a spoon, due to some differences in the way the mouth handles the two methods, but he did say that breastfeeding was different in his mind, and should still be fine as a creature comfort. We haven't been successful with non-nutritive feeding since being at home, but I have continued to pump milk for her in hopes that the antibodies will help her to fight off any viral infections the family may encounter.

So, last Friday we finally had a swallow study, her first fluoroscopy to see what the inside of her throat looks like when she swallows-- this study is the key to the question of whether she can protect her airways when she swallows, a requirement before she can be approved to try any eating by mouth. First, the doctor tried to give her the contrast (a liquid that shows up on the x ray) in a bottle, and while Audrey allowed her to put it in her mouth, she did not suck on it. Then they squeezed a little of the contrast into her mouth from a syringe. Audrey widened her eyes in surprise, she sputtered and panicked a little, but then swallowed! We now saw exactly what the problem is. It's exactly as Dr. Downey described, a wide normal-sized opening at the back of her throat, until it reaches the surgery site, ending abruptly in a tiny opening that leads down to her stomach, like a funnel. It was amazing, and heartbreaking at the same time--- I watched her struggle against her gag reflex, trying to keep it from coming back up as that pocket of liquid just sat halfway down her throat for several minutes, with tiny droplets trickling down toward her stomach a bit at a time. The doctor called Dr. Downey and he was able to stop by and see the results right there, and told me that he felt Audrey is ready for a series of dilations where they will gently widen that area in her throat a little bit at a time. He told me to let him know if she seemed to be getting worse, and that we would probably do the first dilation in about two weeks. As if on cue, over the weekend she seemed to get worse. The past several nights she has woken up multiple times sputtering and sneezing and coughing and gasping, fighting for breath-- and what she sneezes out isn't the thick green gunk of a headcold, but seems to be normal clear saliva. She isn't drooling, which would be the sign of a totally closed hole, so we've patiently waited as the hospitals and doctors have sorted out where she was going to have her first dilation. Soon she'll be able to have them down here in our hometown, but until Dr. Downey gets the instruments he wants down here, we'll have to travel up to Primary... starting bright and early tomorrow morning! Hopefully this will be the start of big improvements, since once she's able to swallow more completely, I hope she won't have to fight her own throat so much. Unfortunately there's also a good chance that her reflux may bring up more milk in the future, but we'll cross that bridge when we come to it, and on a good note we might get to try feeding her some tastes by mouth for the first time! At any rate, it has been a very busy time, and we are so grateful for the help of our friends and family and caregivers. My life is a little--ok, maybe a lot--insane, the bills don't stop flooding in, and it seems like our other kids have each had their own little medical dramas going on, but in the past month we've also seen the oral aversion subside dramatically, enjoyed some family fun time, and heard her precious first giggles. Through it all we have each other, and we just try to keep pressing forward with faith.

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.

Facebook Status Update: Saturday, September 17

Heading north to have a slumber party with my sweet baby girl! Packing for the hospital and feeling almost like we're leaving for the birth!

Tic Toc, Tic Toc, DINGALINGALING!!! Saturday, September 17

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.

Friday, September 16

Eeeeeeeee!!!! Today is my last normal visit! Tomorrow I am coming to stay at the hospital with Audrey overnight to learn her home equipment-- the fam will bring me North, and then I am NOT GOING HOME WITHOUT MY BABY GIRL!!!!!

Tuesday, September 13

All a-flutter with excitement for the new release coming out this Sunday!!!! "Audrey: Unplugged." ♥ ♥ ♥

AUDREY IS COMING HOME THIS SUNDAY!!!!!!!!!!! But at the NICU, a baby's health can change so quickly, there are sometimes hiccups in those plans that extend a stay past the hoped-for discharge date. So there is a cute superstition about the word "Home" jinxing things... instead we say "picnic."

Our family went up for an evening visit to see Audrey, and had a very sweet time all together out on the patio in the dark, with our sweet primary night nurse Ashli!