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.