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 45th percentile at birth to the 95th. 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.
It is good to get an update!
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