July 25-30

Drrrrrrrama. A fairly good week overall, but we are having belly issues. We've been "compressing" her feeds, meaning that she is getting milk through her G tube over shorter and shorter amounts of time, with breaks between meals, stretching her stomach to make it more and more like a normal baby's meal routine. Yvonne, our primary nurse, even asked them to omit the 3am feed because she said Audrey is old enough to almost sleep through the night. Her G-tube handled the changes well, needing only two courses of steroid cream for minor flare-ups as her stomach got used to it. But then, some new troubles started. You may remember way back when we started adding formula to her breastmilk (to reduce her needs for liver-damaging lipids from the intravenous TPN) they had accidentally started her on regular Similac, even though I had been paranoid about milk sensitivity because two of our other kids had had terrible colic from it. It gave her watery BMs, so she was immediately switched to a very basic, gentle soy formula called Pregestimil. This week we began thinking ahead to home, and Pregestimil is not on store shelves-- it's a hospital formula. So they tried switching her to Similac Sensitive, which is lactose free but still has the milk protein, casein. She was really gassy the first day, which was very out of the ordinary, but they said it was only during my visit and that she was fine the rest of the time. So we stuck with it for two days until suddenly on Sunday night the nasty blowouts started, complete with traces of blood. She was switched to full breastmilk, but that ran out quickly because my body has figured out that a pump is not a baby and I am currently working overtime to convince it that yes, additional milk is on the menu. In the meantime, we went back to Pregestimil, and then, because it's not on store shelves you see, we switched to Nutramigen, which has only a very minor difference from the hospital formula and can be found at your local Wal Mart. Thennn, someone casually checked her blood sugar as part of a regular panel of tests, only to find it was way below normal. So then, poor baby, she got poked and poked and poked in her heel for repeated glucose tests, and an Endocrinologist is checking her blood for insulin, hormones, whatever else they do. Now she flinches whenever we play with her feet. Meanwhile, I am a pumping robot thinking maybe solid breastmilk will solve everything.


One of the nurses this week who we'd never seen before, did two things that were amazing. First, I was crushed because Audrey's been super sleepy in the mornings but on that particular Wednesday was finally perky and ready to play when it was time for me to leave, so I suggested that the nurse call Audrey's "friends" the therapist, or child life or music therapy, to see if they could play, and I walked out with the intention to go visit a friend's new baby at another hospital. I pumped, and peeked back in on Audrey when delivering the milk before leaving, only to find that none of her usual visitors were able to come that day, and the baby next door was particularly needy at the time so the nurse had just wrapped Audrey tightly (like a newborn) turned out the lights and left her alone looking up at the ceiling with bright eyes and hands tight at her sides. It wasn't dangerous, it wasn't wrong, it just broke my heart because she needed something different and no one could give it to her... except me. After wrestling with myself for a moment, I sent a text begging forgiveness from my friend and went back to play with Audrey until she fell asleep. But that nurse totally redeemed herself in my eyes by doing something huge for us. I had expressed frustration yet again, just in the course of conversation, about how much time pumping takes, especially when I'm visiting and it's time away from time with Audrey. After an hour and a half drive, a hard-and-fast return time for the sitter, the need for increased pump time and frequency, it feels like I'm getting very little time with Audrey in the day. I go to great efforts to get there only to have to spend much of it across the hall from the unit in the pump room. I own my own pump but have been told before that I couldn't pump at the bedside for this or that policy reason.  This nurse got an idea and went straight to the director of the unit, Susan Fox, to ask permission for me to pump at the bedside. And she GOT IT. You would almost have to have been at the Primary Children's NICU for a while to know what a big deal that is. The nurse even put a big sign on the crib and on the chart to that effect. So whether it lasts or not, the past couple of days I have been able to pump (discreetly, with a hospital gown over my clothes) while blissfully gazing at my baby's fuzzy head as she rests in her crib.

Haven't written about her hand wound in ages. Posted a photo in excitement because it looks relatively fabulous!

This is what's left of her "calcium burn" that ate a big hole in the back of her hand on May 11th. It's amazing how much better this looks finally!! It's come so far since being a crater, now only a couple pieces of calcium left to work their way out! But the skin is smooth and pink, and she doesn't seem to mind it being touched. The plastic surgery team now says they won't do a skin graft unless the scar tissue overgrows into the tendon and restricts her movement, which still remains to be seen, but for now she is using it normally. The body is so amazing!  Only a few small bits of calcium "shrapnel" remain, and each week her body pushes them closer to the surface where they'll eventually pop out. She moves her hand normally too. Kiley showed me what they are worried about though. When they bend her wrist, you can see a white sunburst around the scar, heading out both in front and behind. It means the scar is tight, and Kiley said the scar will continue to grow and send out tiny tendrils that could attach to the tendon because the wound is so deep. So, she may end up with surgery after all, a skin graft or scar "release" when she is one or two years old, but for now they will continue to watch it and wait to see what happens.

Had a really cute visit Monday, where Kiley came and we had a blast. Audrey pushed up and worked her muscles like a champ! She even took a nap on her belly, cute cute. Thursday she was very "giving" and responsive also, and Justin took off work to relieve the babysitter so that I could stay with her-- I read her a story book and she actually looked at the book, and looked at me several times that day and seemed to be talking to me, then music therapy came and we did some little singing and music games, but Audrey was a bit inattentive, maybe overstimulated because she kept looking away and kept her fists closed. I stayed until 7 that day. Also had a great visit with Justin on Friday-- he had taken the day off to work on finishing the chicken coop, but went up with me in the morning and we had a rare visit together. We finally got a little music player figured out so that Audrey could have some playtime music, we put instructions on the little gadget and hopefully the nurses will use it. The kids and I will read her stories and sing into a recording also for the little player, which we've been planning for a while. Hoping to also catch her big baby brother's laughter and babbling, so she gets accustomed to the sounds of home.

My mother gave us this darling layette set before Audrey was born, size "newborn" with a regular onesie, and I felt so bummed that Audrey would never wear it because with her picc line everything had to snap up the front. But yayyy, it's stretchy!! Happy dance.

"Whooo disturbs my slumber?" ....and WHO, pray tell, is this chunky child?? Haha! This is what happens when all of your calories are being counted for you and fed to you without any of the typical fuss.

"Five more minutes?"

On Thursday, slightly hyperventilating:
Big news.... and big surprise for us, August 8th might be the big day. Still waiting to consult with the surgeon and ask our big questions, but a messenger came saying Dr D wants to do the Esophagram, then flip her on her side and go for it. Lots of mixed feelings today!

Our ten-year-old, Eden, asked, "Do you think, when Audrey's tube is fixed, will she find the taste of things surprising and delightful?" :-)

Saturday: called in the morning to find out the results of her rhinovirus swab from Thursday evening. Turns out, they tested for everything BUT rhinovirus. Aaagh, hahaha! Nice to know she was negative for RSV etc, but let's get this kid out of isolation already! I want to take her on a stroller ride!! The mistake was caught, the test resent, and tonight I called back in great anticipation....... and the results were...... "Equivocal." What? I said. The nurse laughed with me and said she had never seen it before. It means, not positive, but not quite absolutely negative. Sheesh.

July 17-24

Love this little sundress! Got it for her long before she was born, and then worried she would never wear it. Love being able to dress her in normal clothes now.

Second test, STILL positive for rhinovirus, which means we're in for yet another week of isolation. She seems much more comfortable this week, however, and I've heard many reports of smiles from her afternoon caregivers. Since my visits are in the morning, she is usually sleepy and sometimes rather grumpy... Yvonne says she is "just not a morning girl."

July 19: I was SO happy to see her sucking on the pacifier, it had been a long time, since before she caught the cold, since she had taken it easily without gagging.

She's getting humongo!  There is definitely meat on this kid now.

Wonderful Kiley, who just kept trying the pacifier with her all these weeks!

A text from her assigned "Auntie" Robyn on Saturday read: "I had my best visit with Audrey today. When I got there she was in her swing... happy as could be. I played with her for an hour and half. She was so responsive and smiley!! She focused right on my face. I see that she has found her tongue! When she got tired I rocked her to sleep. What a beautiful baby! I was also surprised at how strong her little legs have gotten!" :)

She's definitely getting more wiggly! On Tuesday I came in to find her sleeping sideways in her crib.

 Today I put her on the floor on her mat, flat on her belly, and she wiggled her little legs up under her, and pushed up on her arms, lifting her head repeatedly completely off the mat! Not even a squeak of complaint. She exhausted herself and then fell into a cozy snooze on the floor.

She can push up! Practiced on her tummy for about 15 minutes before falling into a snooze, without a peep of complaint. It was impressive (and adorable)! (July 24)

Any day when we get to have our "primary nurse" Yvonne is a good day. :) The gown and mask are just nurse protocol for as long as Audrey continues to test positive for the cold virus.

On Sunday I walked in to have Audrey smile right at me. Finally caught her grin on camera.

Caught it! Finally caught a full smile at me on camera!

July 10-16

I'm really starting to feel claustrophobic on Audrey's behalf. She is definitely waking up more now and pretty aware of her surroundings, so it drives me crazy that she is stuck indoors with the same four walls, same obnoxious sounds of alarms beeping, when there are so many beautiful things to see outside! I finally asked and learned, to my astonishment, that yes, there is a special stroller for NICU babies and yes, she might get to go on a little stroller ride around the unit and perhaps eventually even outdoors... what I really want is to take her to the Angel Garden by the main hospital entrance. Let her see the flowers, the fountains, the sunshine. Unfortunately though, the head nurse is very worried about the potential for her catching some sort of infection from the germy hallways outside the unit, and they won't let HER go out until she is free from the virus she had weeks ago.Still, I was excited for something, ANYthing, different for her from the same four walls in her little room, until we got the results back from her test showing that she was still positive for the common cold virus. She's been symptom free for weeks now, but they said babies with "compromised immune systems" which apparently she is categorized as, often take six weeks to finish shedding a simple virus like this.

July 8

Picc line is out!!! Her arm is officially free. She wore a onesie for the first time today. I used to feel sad to look at the little clothes she would never wear, but now this is a happy happy day. Thank you Dr Downey!

A couple of my favorite Facebook comments to this were:

• (Dana E.) Yaaaaaaaay!! One less thing attaching her to the hospital!
• (Melissa R.) Woot! Not only is the arm free but a major infection risk is gone too.
• (Tamara W.) Whoohoo! Progress is a wonderful thing. Does that mean no more TPN as well? (YES, YES, a resounding YES!)

July 6

The big day, her second esophagram! Audrey's stomach had to be empty because they were putting her under full sedation for the test. So they stopped her feeding pump at 9 that morning in anticipation of her 3:30 appointment, but 3:30 came and went and there was still no call for us to come down. 4:30, 5:30, three hours later and nothing. I was getting worried about her little tummy hurting her, but she bore those extra hours like a champ. (I loved my friend Adrienne's comment on Facebook: "Poor little thing. Get that kid a cheeseburger, STAT!") At 7:45 we went down, and she was wide awake this time for her field trip through the hospital! Dr Downey checked and double checked that all of my questions were answered before they took her back, and my final question was simply, were they planning to change her G tube out for a button? He said, Oh, good idea.... so I was really glad I had asked. The nurses had all been talking like it was part of the plan, but it was not. A "button" G tube is smaller than the kind she had placed at first while her body was getting used to it, and the button (named for its ability to simply be buttoned shut when not in use) makes it so that she can comfortably lay flat on her belly! Anyway, I bought a cheeseburger (Audrey could enjoy it later in her "Mama Juice" as my friend Tamara calls breastmilk) and a bag of chocolate covered gummy bears, went to the waiting room... and it seemed like so fast before he brought in the results! He had humored me and taken a photo of the way things looked before being pushed on with the instruments. Wow, I was amazed at how far apart those pieces really are. It was like, half her chest. Four inches, seriously. Then when they were moved, it was much closer, maybe two vertebrae widths apart. He said that while they can't connect the pieces yet, they probably would be able to in about a month. He said, they wouldn't be touching in a month, but he thought they could do some dissecting to get the tissue to mesh together. Wow, I hadn't realized it was possible to do that, and it didn't sound so great but I really took his word for it. I was excited to think of being only a month away from surgery, but when I talked with Justin he reminded me that we might still choose to wait one more month beyond that, in order to make SURE they could connect the two ends and avoid a tight repair or an unnecessary gastric pull up, the intentional hernia that would be the best way to connect the two ends if it was impossible to do so without it. Anyway, I went back to help Audrey as she was coming out of sedation, and the time flew as we worked with her. Although she did well, there was so much to do to help her get warmed up and re started again-- I mean, they even had her on a breathing machine with a tube down her throat to help her breathe while under the morphine. They bring them up slowly, but it seemed so fast-- she had no Replogle when she came back, so we had to put one together for her and it seemed to take forever. In her half-sleep she began to panic as the saliva built up in her mouth, and at one point she lurched forward in her bed, lifting her little torso six inches off the mattress. I didn't know she could do that! Great abs, baby! By the time we were done, I looked at the clock and it was after 11pm. I don't do late night driving, so opted for a nap in the parent lounge around midnight, and ultimately decided to just sleep as much as I could until it got light outside and go home early in the morning. It worked out well and I was grateful for the pillow and blanket and welcoming attitude of the night nurses whom I'd never met. Another EA mom who knows said to me, "You know your baby is doing really well when you start getting lots of nurses you've never seen before, because they are the float pool," less experienced nurses who are assigned to stable low-maintenance kiddos. Ours did great that night.

July 4

On Independence Day, our family attended the parade here in Provo, cooking breakfast burritos on the sidewalk and sharing them with the sweet girl who shared her space on the grass with us. (Who knew that three hours early was not early enough to get a space big enough for a six-person family at the parade in Provo? We had thought about camping out, but decided to save that for next year in favor of our comfy beds--and noted that even at 8pm the night before the entire parade route was positively packed, except for the areas restricted until morning. The girl who shared her spot with us had been there since 4:45 am, the earliest people were allowed in that area.) The kids and Justin played board games and blew bubbles, and we all loved the "Star Wars guys" of the Fallen Warrior Project, a full garrison of full-costumed Star Wars characters ostensibly raising money for injured American soldiers. I was reading the names of some of the best floats to the kids as they passed, and when one really lovely one went by, I started calling out, "Primary Childrens Medical..." and the rest got caught in my throat. In the sunshine and stress and fun, for a few minutes I had completely forgotten my crazy fragmented life... but in that moment was struck with the strangeness of not having my family all together.

July 3

Justin is visiting her alone today. It worked out simplest that way, and gives me a taste of his own vicarious enjoyment of my visits. Three days without being with her.... can I make it??? At least Tuesday morning I can be there fresh when the doors open. She is now officially in the long-term care group! Justin called me on Skype this morning so I could at least look at her and talk to her.... and she smiled as soon as she heard my voice, multiple times, and looked around like she was trying to find me, aww.

I'm overjoyed! Dr Downey is raising her to full feeds over the next week, then slowly compressing feeds to larger amounts over shorter time rather than continuous pumping of a steady amount, then bullous (intermittent) feeds and (gasp!) then perhaps removing her picc line!!!! This will mean her stomach will stretch to where it can handle normal infant meals. This is a MAJOR change from Dr. Black's approach. It means ditching the TPN that has had us worried for her liver. It could mean freedom for her left arm at long last. She may not even need a picc line for her surgery stuff, they said. Wow. I asked Justin if he wishes we had done this change sooner, but he reassured me that he thinks we did things in the right way, at the right time, slowly and carefully as it should be, and I realized to my surprised relief, that I agree.

Her Esophagram will be Wednesday, she will be fully sedated for it which means a break from food for a few hours ahead of the test. Looking forward to the results, wondering how much she has grown. Even if they could perhaps do the repair right away, unless the two ends are practically "kissing" he will still give her a few more weeks to grow before doing the surgery. He'll remove the G Tube to press upward from inside, and watch on a video monitor. She might get a "button" G tube, another step toward home and a more normal life. This G tube button can be easily disconnected from the pump and snapped shut for playtime, baths, etc. when desired. I'm getting more excited as things progress and the days pass, home is getting closer, I can feel it--- as much as it sounds scary in one sense to imagine mixing our busy crazy home life with her special needs, little by little each hurdle is looking smaller and closer. I "sucked it up" as they say, and changed her G tube dressing myself on Friday, a task that has always scared me-- what is up with all these moms who say a G tube is no big deal? For me it is. I just keep telling myself, this thing is giving her life, it's ok, it's better than ok, thank God for it. It struck me recently that this whole experience is like a second pregnancy. At the end she'll finally come home, and nothing will ever be the same. But we'll snuggle and rock and sing and play, and Gideon, we, and her siblings will fawn over her every move. The G tube will become part of our normal every day life, and then one day we'll ditch it, and she'll have only scars to remember all of this by. Her sterile world forgotten, she'll live surrounded by love, wake to the smiles of her parents, drink in the sounds of birds and children playing, feel the sunshine, the scents of outdoors. I can almost taste it.

July 1

She is being given more milk! The amount had stalled while we were sorting things out with surgeons. Dr Downey indicated in our talk that he wasn't worried about the surgical site any more at this point, and hinted he might even go up to full milk feeds for her. Waiting to see, but this is a BIG BIG DEAL!!!

She smiled in response to my playing with her, and also to my voice!

She seemed uncomfortable today. Tried some non-nutritive feeding for the first time in a few days. She rooted but then gagged the instant it passed her lips, so she took a comforting skin to skin nap instead.

OT reports also that she is gagging on the pacifier and on their gentle finger in her mouth. This is a setback. Could possibly be related to headcold/pneumonia, or to new tube (nasal cannula), hard to say. Patience, diligence, then patience some more.

Reading Sawyer's blog-- imagining once we're home: practicing nursing, then attempting bottle feed, then using G-tube, then pumping, every. three. hours. And mothering a toddler in between. Yikes.