June 30

The wound nurse Kathy removed the dressing on her hand, leaving only a gel barrier, said she felt the skin needs air and a break from adhesives. I'm a little nervous to leave it unprotected, it still looks awfully wet and pink to me. But her new skin is filling in the wound almost completely now, and the huge chunks of calcium "shrapnel" have come out on their own, leaving her skin looking nearly smooth! Once we have the photos, we'll post a little progression of her calcium wound, for those brave interested souls; it's exciting to see it come so far, and they now think she may even avoid scarring almost completely.

Visit from Aunt Carmen and Uncle Jared for the first time!

June 29 -- Five Minutes of Pink

 Arrived in a stressed mess. We were very, very anxious about the meeting with the surgeon.

Our meeting with Dr Downey started out flat, then grew much more relaxed and fluid about halfway through. We are happy with the ideas he expressed about the care of her condition.

We did a fast photo session for baby announcements-- Yvonne was here, and conditions were perfect so... FAST. "Pull the tubes, and bring on the FROO!" We got five minutes without tubes on her face, and you never heard the camera shutter fly so fast! We got only tiny smiles here and there but she seemed to enjoy herself very much, which was only natural: no tubes, both parents AND Yvonne giving her lots of cutesy attention, fuzzy blankets and of course, lots and LOTS of pink!   Some people would say we should just have taken the photos with the tube in, but I have to level with you.  It was more than a little special to have my baby virtually tube free for a few minutes, it was exhilarating.  I look at these photos and I see a moment of triumphant defiance in the face of adversity, and a promise of better days to come.

This was a moment of happy excitement, as if she was saying, "We can do this!!"

 

At long last, and to my great surprise, who should show up at the bedside but the music therapist! YAY!! Audrey was tired and starting to fall asleep, but Carissa played while I sang Teddy Bear's Picnic and a 12-verse version of Twinkle Twinkle Little Star. I'd never seen the children's book with the extra verses before, and choked up on one of the last verses, something about "time to bring you home, thank you for this magic ride." It really had been a magical day.

And Voila!

 

June 25 - 28

Very sleepy girl. She was given humidified warm air through a nasal cannula starting Saturday morning, and ever since she has seemed so much more comfortable, and been gagging much less. The coughing and gagging that had started mid-week last week had continued, so I was grateful they had found a solution that worked so well. Our primary NP, Ann Camp, however, thought something about this didn't feel right, so she ordered a swab test for the common cold, and it came back positive. Audrey was moved into isolation, in a room of her own with her own private nurse, until she can test negative again.

She had her first round of vaccinations just after midnight on Tuesday, and was fussy later that morning, with a mild temp, and they had given her Tylenol just before I got there. It was good for me to walk in when the nurse was not expecting me (she did not have her Vocera pager on so didn't know I was coming in) and to see the nurse being very tender and nurturing with her. Makes me feel so much better about not being there to comfort Audrey after her middle of the night poke for vaccinations-- something I have never missed with any of my kids. Baby slept in my arms most of the visit, yet again, and in spite of rooting, she immediately gagged when I tried a little non-nutritive feeding. It was ok, we still enjoyed snuggling. Sleep is the best thing for her right now. Get feeling better soon, baby! Tomorrow is our big meeting with Dr. Downey..... time for a little shuteye of my own.

June 24

Well, for better or worse, the change was made on paper last night, and Dr Downey is our new surgeon for the moment. Also last night our bed was moved to a new location--coincidence? (my first thought was, we DID get a black mark!) no more window suite-- it was so shocking to walk into our bedspace and find a warmer bassinette there, and no Audrey!
 

The view out Audrey's window-- we enjoyed this view for eight weeks before being moved to another area! It helped me to deal with the claustrophobia of being indoors all the time through the spring.

Once we had stood by her bed for a few minutes getting oriented by the nurse, Dr Downey came up to meet me and he literally seemed to be walking on eggshells. The first thing he said to me was, "are you sure you want to do this? Dr Black is an excellent surgeon." I assured him that I have no issue with Dr Black, we had simply been impressed with the communication level he had had with the Grow family and wanted to meet him. We had also heard that he was moving down to UVRMC, the Provo Hospital, in September, which would be wonderful for follow up exams. We discussed a couple of my questions, and set up a time for next week to meet and talk for longer when Justin can attend. I was a little nervous about his apparent anxiousness to perform the surgery as soon as possible, and his description of the esophagram test--he uses a probe up inside the stomach, through the g-tube site, to press upward, as well as a probe down the throat to press downward. Poor baby! That helpless feeling caught me again, a terrible sense that seemingly little decisions we make now, will affect her for the rest of her life. Justin and I would both rather deal with feeding issues than the scary side effects of a tight repair.... we want to wait as long as needed to get a more relaxed repair, but we'll see what Dr Downey says at our conference Wednesday. He initially told me that his maximum wait is four months. He started listing the alternatives at that point, old terms I had hoped we'd left long behind.... colonic interposition (plugging the gap with a piece of colon, a lifesaving but problematic solution), gastric pull up (a deliberate hernia to bring the stomach up to connect to the fragment of esophagus, causing lifelong reflux and many worse problems), and a spit fistula (a hole in the neck to allow saliva to drain out instead of constantly being suctioned by a replogle tube while waiting for her to grow--yet another huge scar). Maybe he was trying to scare me into sticking with Dr Black. ;) Anyway, looking forward to Wednesday with some nerves and some hope.

June 23

What a strange, comical experience this morning. One by one, the involved people came to talk to me about my interest in possibly switching surgeons. Two of them encouraged me to stay with Dr. Black, while the other two encouraged me to continue moving forward with a change until I was comfortable. It was quite an ordeal, actually-- and I'm afraid that in the end I made the waves I had been hoping to avoid, in spite of all my efforts to the contrary. I told Laura, the social worker, that I was afraid I now had a black mark on our chart-- she told me "no, of course not. It's red."

June 22

Justin's brother Luke, who is visiting from California, lent us his wife Melissa who joined us for the day! Their first child had a lot of medical needs when he was born, as well, so she is a total pro and veteran NICU mom herself. Audrey was sleepy today so we had some good time to chat.

Attended the parent lunch and enjoyed a presentation by the music therapist. She is the only one for the whole hospital, imagine that!! So I feel a lot better about her (now 3) missed times when she's said she was coming to Audrey's bedside and it didn't work out. Wow. But she talked about the different ways music is used in the healing process, it was fascinating. And she said that she offers to write a special lullaby for the baby with the help of the siblings and parents. Cool! If she's really that busy, it may never work out, but what a beautiful service she gives. I loved her South African accent and lovely singing voice as she demonstrated her lullaby version of a Rolling Stones song, to prove that babies love the melodies and music they heard in utero.

Dr Black, our surgeon, stopped by very briefly and very unexpectedly. I had been thinking a lot about our upcoming esophagram (the test where they measure her growth)-- since the simple puff of air into her throat was so much less traumatic than the liquid contrast and pressing down with an instrument, as he had previously described planning to do but which had never happened, I asked him whether we could do that again the same way. He had never come to talk to us before, during, or after the June 1 esophagram, nor given us a report about the results-- we had asked repeatedly throughout the day until our nurse finally found out the gap length for us from Radiology. Vanessa Grow, Sawyer's mom, had told me that we got lucky by having the test so simplified. I was hoping we could get away with that again, but whatever possessed me to ask the surgeon directly about it, I'm not sure... just nerves I guess. But the next day I found out that he was changing her esophagram date from July 1 to the 29th so that he could be there for the dilation etc.... I wondered if I had just caused my baby extra pain by asking the question. His answer had been a repeat of his original explanation of what he likes to do, push down on the top pouch to cause gagging and a reflux of the contrast in the stomach, plus to stretch the pouch and see how far down it could go. I got to thinking about this and realized that if the June 1 measurement was unstretched, and they want to do this one stretched, how could we figure out a rate of growth to estimate how much longer it would take to grow her tube? If we want to see how quickly she is growing, wouldn't we want to compare "apples to apples" by getting a second unstretched x ray to compare with the one from June 1? Last time the difference sounded so small unless you realize we were comparing 3.5cm stretched (at birth) to 3.2cm (unstretched) at June 1. Now if we stretch it, it will look like she's grown a huge amount. And more importantly from my perspective, why put Audrey through the trauma of that stretching process if it is unnecessary? Melissa felt like the surgeon kind of blew off my questions.... it's hard to describe, because even though I know he was probably just making a fast rounds, I just felt that frustration creep up again, where his decisions about her care just seemed to change arbitrarily and without warning. I remembered Vanessa's description of her excellent communication level with her own surgeon, Dr. Downey, and again I wondered if we ought to request a change of surgeons. Since our initial assignment to Dr. Black was simply based on the fact he was on call the day Audrey was born, I thought it should be simple to change. But in a cooperative of partner surgeons, I was worried about making waves and wanted to keep good relations with Dr. Black in case we weren't ready to switch after talking with Dr. Downey. I have talked with our social worker and a couple of trusted nurses about these thoughts, several times to get their take on things, and our social worker promised to talk to the right people and get back with me. I had hoped that by doing things that way I could avoid making unnecessary waves. I was wrong.

June 21

So happy to have my mom's company for a week! She had a plane ticket that had to be used by the end of this month, and I was the lucky beneficiary of her valuable time. A good visit with baby, tried non-nutritive feeding again (where I pump just before trying breastfeeding her, just to teach her the process so that when she is finally able to eat for real, hopefully it won't be so strange to her). I had been worried she was losing her root reflex, but to my relief she proved me wrong. She was uncomfortable lying on her left side, the arm that has both her pic line and her calcium burn in the hand, and rooted only halfheartedly in between crying, so I tried switching sides, and she calmed right down, rooted, latched on with a gentle "I'm full but this is comforting" type of suck, and fell into a comfortable sleep for a few minutes. When a little of my milk let down briefly, she stopped sucking and just thought about it. That is exactly what the doctors want, because of course they are anxious to protect her airways and prevent her from aspirating milk, and don't want her actually swallowing milk.

She got a fun time on the floor mat with her Occupational Therapist, Kiley! Great pics.

Audrey met all of her milestones, following an object with her head and eyes, moving her muscles well, etc.

She is tasting her lips after having a taste of strawberry chapstick. Oral stimulation can help prevent the food aversion that plagues many NICU babies.

One sad thing, she is coughing and gagging a lot. She scared us by coughing up thick brown mucous. Why is this suddenly happening?

June 20

A great day! Baby got to dip her legs into her little bathtub for the first time today! She has only had sponge baths before, and even though it was just her legs and feet that were ok to dip in the water, just that small milestone was such a happy thing. More fake nursing success, and she slept in my arms while I talked with my mom.

June 16 - 19: Scars

Baby Sawyer got to go home! His parents had decided to continue with G-tube feedings and work on oral feedings at home. I ran into them standing in the hospital lobby with their empty baby carseat as I arrived one day, and was overjoyed for them at the same time as I held back a lump in my throat. They have had a long wait, longer than ours, and this is their first baby, and they live in Idaho. How hard!! Our other friends, the baby and his family who have been next door to Audrey the whole time, also got to go home after nearly 8 long months. That was also a bittersweet good-bye. The NICU feels lonelier now, but it was bound to happen. I am so happy for my new friends and look forward to our own homecoming day.

Casting her spells on us in her sleep with Abracadabra hands!

What a busy week! Cub Scout camp, a carnival, visiting cousins, and Father's Day. Saturday morning I went up to the hospital very early and then picked up my mother at the airport, then we came home to catch the end of a church service project--the ward had chosen several families in need of some extra helping hands, and concentrated the efforts of our congregation for that morning, and it is amazing how much they were able to do-- our yard was one of the lucky ones to benefit from their generosity, and it looked so beautiful as mom and I pulled into the driveway. Our kids had gone around the neighborhood with the other children and picked up any trash they could find. After the potluck, we drove to Justin's sister's house in Riverton for a dinner celebrating a visit from their brother Luke and his family. Father's Day we spent the entire day at the hospital, where the kids played at the Forever Young Zone playroom while my mom watched them, each of them getting a turn with Audrey, and for a rare treat Justin and I were both able to be with the baby at the same time for a while. We had a great chat with our primary NP, Ann Camp, who answered a lot of questions that we'd built up. She has been heading up a sub section of the NICU just for long term patients such as Audrey, and has talked with me about it a couple of times. The advantage of us being included in that group would be having fewer nurses rotating in and out, so that hopefully all of them would get to know Audrey better. The disadvantages would be losing our sweet spot by the window and moving to a new room, and probably losing our primary nurses whom I've grown to adore, because certain nurses would be specifically assigned to that group. (Correction--I have since learned that we will not lose our primary nurses, hooray! They are just limited in the number of kids in the group and we are on a waiting list to join, apparently.)

When I brought Eden to visit on Friday, the picc line pump started giving us a message indicating a block somewhere in the line. To my shock, the nurse and I discovered liquid shooting out of it from a microscopic hole in the line-- it was so scary! I was dreading having to have the line replaced, which had been traumatic and scary the first time, but amazingly they were able to repair it with a tiny metal tube slipped over the plastic one. The metal tube is now taped to her arm with the rest of the pic line dressing, but it was a huge relief that it didn't need to be replaced. (The pic line is the intravenous tube that runs up through her arm vein into the large vein adjacent to her heart. They x ray it every week to make sure it is no closer or farther from the heart. Placement is traumatic and infections can be very dangerous, but it saves her from many new pokes and painful peripheral (traditional) IVs for new medications or nutritional supplements.

As I held my sleeping baby early in the morning on Saturday, for some reason a scripture came strongly to my mind. "For God so loved the world that he gave his only begotten...." There was something precious and new in that scripture for me that morning. I don't know if I can quite put it into words, but I was pondering on Audrey's scars, so many and so large it feels, and I wondered if she would ever want cosmetic surgery to remove them, particularly when she is a teen. I had an image of her asking us to instead help other children with that money. And then I felt those words of the verse so strongly, with a change, that in that same sort of loving way, Audrey herself was willing to come to this Earth and accept these scars to her mortal body, to fight to stay here, because she loves the world, because of what it means to be here, the opportunity to learn and to love and to serve and to give.

June 15

For reasons that are hard to explain, this was my hardest visit ever with Audrey. I had looked forward to a visit from the music therapist, but she didn't show during my visit that day. It was pouring and nasty outside, Audrey had both a nurse and an NP I had never met before (and more importantly were unfamiliar with Audrey), she had a terrible rash on her face from the tape adhesive, (a skin sensitivity she obviously shares with me and my mother, but today it was particularly bad,) and it was just a tough day-- Audrey obviously wasn't feeling good and yet there was nothing documentably "wrong" with her. She looked pale, and was fussier than usual. When I tried non-nutritive feeding, before we really began she spontaneously started gagging and sputtering, with lots of white saliva coming out of her mouth. I calmed her and we suctioned her out. It was so unsettling, so I just held her for skin to skin time for a while, then requested to talk with the Nurse Practitioner. I tried to explain my feeling to the NP that she just wasn't feeling well, told her the things that were worrying me, and as we talked I just got the sense that I was being patronized; a well meaning person was trying to calm my worries while believing themselves that they were unfounded. She basically told me they were doing everything they can, and to try not to worry. But a couple of the things she said were things I knew otherwise, which reinforced the feeling that I was leaving my baby with strangers. I cried all the way home.

I love this photo of her! Abracadabra hands! The only sad thing is her little cheek has a rash from the tape that held her Replogle on that side the day before. Audrey and I share a sensitivity to bandaid adhesive.

June 14

Finally got a call from Dr. Black, her surgeon-- we are now on the same page that the goal for her gap is about 1cm before the repair would ideally be done. The rumors I had heard of 2cm were an absolute max, kind of a worst case thing-- if it is true that she grows about 1cm per month, then that would put us around the first of August. I later learned that Dr Black called me not because of my several previous messages through the nurses and NPs, but because when he stopped at the bedside that day our primary nurse asked him to call me.

The other baby who had his repair on Sunday May 30, Sawyer Grow, is *almost* but not quite ready to go home. His surgery was a success, but he is still too afraid to swallow milk-- this was a disappointment to (of course his parents and to) us, because he has had such a similar situation to Audrey and we have considered him a sort of "watch and learn" example for what we may go through. He too had a great suck reflex and no problem swallowing his saliva, but somehow swallowing milk is too scary for him. They were preparing to take him home with tube feeds, something we may end up with for Audrey until she learns to eat too, but one other setback has kept them here a few extra days. One sad side effect of surgery on babies is that they often become addicted to morphine, and he is still weaning off the painkiller. Sawyer's mom says that if she could have it to do again, she would have pushed to give him tastes of milk on his pacifier and to do the non-nutritive breastfeeding on a consistent basis. She feels like he has lost his rooting instinct and strongly encouraged me to work consistently with Audrey. Starting today I am going to do skin to skin time every morning for part of my visit, hoping she will learn to "nurse" over time.

June 8 - 13 Abacadabra Hands

Tuckered out after play time, Sunday night June 5th. When she is in a deep sleep, she often holds her fingers out straight as though she is casting a spell on you--- I call it "abacadabra". The blanket is tucking her hands in sideways, but she would otherwise be pointing them straight at the camera, even though she is completely relaxed. All of my babies have done abacadabra at this age-- maybe all babies do. But it is just one of those newborn things I find so darn cute.

Well, the sad day finally came that Justin's parents had to go home. We are all adjusting. Our new babysitter is wonderful in every way except that she is new to our kids-- so that makes it more of an adjustment for everyone, especially for Eden, the oldest. She has felt very unsure of our new friend and is feeling protective of her baby brother. Most days have gone really well. However, there was one day when the doors to the house were locked when all the kids got home from school, --because Gideon has been figuring out how to open the door and go outside on his own-- and because she was upstairs when they knocked repeatedly, no one came to the door, and Eden became very frightened. Her imagination went wild with worries over her baby brother, and when the door finally opened she was angry with our new sitter and shouted at her before running to the playhouse for a secret phone call to me. We talked for a while and she calmed down. She knew her fears were irrational, but it was a sad example of how the stress over our family situation is affecting her. The other kids show their stress in other ways. My 8 year old has been having continence issues during the day and clings to me, and my 6 year old has been more moody and disobedient than usual. We're all working out our kinks, and time together is the best therapy. This too shall pass.

The hardest thing about our new schedule is that Justin's time with the baby is very limited. He made a spontaneous visit on Friday night and she was very awake for him. He and the nurse gave her a bath, and he didn't realize that her outfit was a special favorite of mine, something that belonged to her and was labeled in the collar with her name. It was thrown in the general hospital laundry and I hope we see it again! At this writing it has been two weeks of asking every day and it hasn't yet shown up in their linen room.

Go ahead and say it. Awwwwww.

So, I asked the nurse, (being of limited experience with the froo froo girly baby thing), how do they get the bow to stick? I'd heard of KY jelly, but this stays way better. It's Elmer's Glue. LOL! Makes sense, I suppose, water soluble and all, just seems incredibly funny.

Because Dr Black has opted to increase her milk feedings intermittently instead of tying her milk amount to a ratio according to her weight increases, her TPN (intravenous nutrition that is dangerous to the liver) has been creeping up again. Justin was worried about this, and during his visit the nurse mentioned that one thing they can do is to fortify her breastmilk with formula, which somehow allows them to give her less TPN. We agreed to it, and they started her almost immediately, while warning us that some babies do not tolerate the rich milk well. We decided to give it a try. During rounds on Monday the nutritionist (who knows my concern about colic in my other babies and their sensitivity to dairy in my diet, and who agreed with me that I ought to go off cow's milk until we know whether she is sensitive to it) noted that the formula being mixed into my milk was normal Similac, a cow's milk based formula. While my babies have liked this after about 4 months of age, before that age it has given some of them upset stomach. We decided to see what happened-- since she can't reflux, they watch the diapers for signs of a problem. And by Tuesday yes, we definitely got signs of a problem.... sooooo, she was put on a special formula for sensitive stomachs. Pregestimil, I think it is called. Since then she has seemed to do all right.

Ever since her hand surgery was canceled, she's been treated with a special salve called Meta Honey. Literally a medical grade metabolized honey, it somehow dissolves the dead tissue and leaks it away in a watery liquid, and stimulates the growth of new skin cells. When it was done, I could see how much of her skin had actually been killed by the calcium citrate, and it was a little scary. The hole was deep and almost the entire back of her hand. But when the edges of it were pink and bleeding (instead of white as they'd been before), I was told the wound nurse was really happy because that was a sign things were now truly healing and progressing as they should, because it meant the tissue is living.

June 7

She now weighs well over 8 lbs!

Aaron's second chance to hold Audrey. He said, "She is sooooooo cute!"

Handsome JJ loving his baby sister.

June 6

Apparently Dr. Black came up to look for me twice over the weekend, but I was at home for a special family event. We had been told Dr Black wasn't going to be at the hospital over the weekend, so the news surprised us-- how ironic that I had waited all day hoping to see him for much of the week, only to have him come when I couldn't be there. He must just be so busy, I understand, we just have to get a better way to communicate!

Spending my last nights up in SLC for a little while. I miss my family so much and look forward to sleeping in my own bed at night, and a hundred other normal things I used to take for granted. Sunday night we second guessed the plan I thought we'd settled on, and have spent the better part of the past two days brainstorming, discussing, pondering and praying over a number of different ideas for how to best split our time between the kids and home. This "commuter parenting" thing stinks! :) Tried to see if we could transfer her down to the hospital in Provo while she grows, which is all fine except for the $3000+ medical transfer that our insurance will not cover, drat! (I say we just bust her outta here and make a break for it.) We are kind of sad that we will always be away from her in the evenings because Audrey is so awake in the evenings right now, 8pm-ish seems to be her play time for a couple of hours. Both last night and Sunday she was just adorably wide awake, and when she is, that's the best time for her to get to know us and to practice her normal baby stuff like holding her head up and reaching for things (instead of having her hands wrapped in and laying in a bed most of the time). We very nearly changed our plan entirely to keep the room instead of checking out, and have one of us up here every night trading off like a tag team-- the rule is that someone always has to be sleeping in our room at the RMH, every night, or else we are asked to check out so that someone else can use it. That use-it-or-lose-it policy makes total sense but means we would not have the safety cushion of a place to crash on those late nights instead of driving back to Provo (it's about an hour and twenty minutes door to door, and there's some nasty construction with poorly marked roads and elbow-close side walls that are scary in the dark; my drowsy self can't handle it) so I guess mornings are it for now. I did find out that we can do her bath any time so perhaps if I can do that during our visits, she will wake up afterward for a good play time with me in the mornings. Since the bath is a two person job and the nurse is assigned to two babies at a time, it could be kind of tricky in the busy morning hours, but we'll give it a try. Maybe we can do it when the other baby's parents are there. I hope Justin can figure out a time to join me for a visit once or twice every week-- it's during those combined visits that we just really gel as a family. I sing to her, he rocks her and plays with her, it's just some of our most precious time. We plan to bring the kids up each Sunday morning, but only two visitors can be with her at any time (Justin or me with one child or other visitor-- you're all welcome and invited, I should be there each week day about 8-1) and the other of us will be in the playroom with the other children on those Sunday mornings.

My house buddy Omie got to go home on Saturday!!! As in, HOME, home. With her BABY Silas!!!! She has been a ray of SUNSHINE to all who have met her here, which has been basically everyone because she seeks out every new or gloomy face and draws them out with her generous unconditional love, in spite of her own massive trials. Our first week here I felt pretty antisocial, but she and her husband Ray just would not let me stay incognito. Her deep faith and bold testimony of God gave me courage and strength when I needed it most! I have since learned that that's how things are here; you come in shellshocked, you receive strength and encouragement from others, and then there comes a time when you adjust and are ready to help newcomers yourself. ♥ you Omie!

I completely forgot to write last week about walking back with Audrey from her esophagram Wednesday, and being met by a doctor who told me that she was scheduled for surgery in the morning for her hand, not a skin graft but a clean up of dead skin and stuff to promote faster healing. He wanted me to sign a permission to put her under general anesthesia and perform the surgery, but he talked so fast and seemed to contradict himself so often that--forgive me--he reminded me of a stereotypical fast talking salesman. (Hey, they work with unconscious infants, who needs bedside manner? LOL) Obviously, they're the experts not me (although his paperwork also said the right hand instead of the left) so I figured my red flags were probably overreacting. The only problem was, I had not seen her wound in a few days but it hadn't looked that bad the last time I had, so I was surprised and a little confused, and I somehow couldn't bring myself to sign the paper right away-- so I politely asked whether he could come show me what they were talking about first, just so that I could understand better what they were planning to do. The weird thing was, when we opened up the dressing, it seemed like he couldn't actually see the problems he'd been talking about on her wound, and he seemed to falter and almost even be making things up as he talked. Even though I figured they must know what they were talking about, I still felt uncomfortable about it and asked as politely as I could for the surgeon to come and explain things to me first. My nurse was so awesome, she explained the procedure really clearly to me in a whisper, to the point that I signed the permission form before he left, but I was told I could revoke it at any time prior to surgery-- and interestingly enough, when the surgeon (from plastics, a skin surgeon, this is not her primary surgeon for her esophagus) came later that day to explain things, he too totally faltered when he saw the wound. It was one of the stranger things I've ever seen, to watch this surgeon be literally tongue tied and embarrassed as he pointed out elements of the wound and explained that it looked much better than he had been told, and that since he gets his information mostly second hand the decision to do the surgery was based on some misinformation (I suspect they had mixed her up with one of the other three babies who also still has a nasty wound from the calcium, or that we were subject to some slightly overenthusiastic (and/or sleep deprived) medical students)--and that he was cancelling the surgery. He said, I can go in and dig around in there trying to get out the calcified layer beneath the healthy skin, but that would be more dangerous to the tiny tendons than leaving it alone for now and allowing it to continue to heal. I said, can her body figure out how to absorb it or get rid of it on its own? And he said yes, it might. Wow. Ok, that was good, but the experience spooked me a bit-- I can just see what could have happened--the nurses would have wheeled her down there in the morning, she would have been sedated, and then, under full sedation, they would have looked at her wound and said oh, well this isn't nearly as bad as we thought, but since we have her here all prepped let's see what we can do. Literally making a bigger mess of it, when it appears to be healing really well right now. And what do I know, maybe that would have been fine in some ways, but was it really what was best for her? It still hasn't closed in all the way, it really is taking rather a long time, but give her a little credit--her body is having to close in a nearly two inch wide and grossly deep hole that was caused by flesh-eating chemicals. And she IS succeeding, even if it is slower than they might prefer--our nurse was cute, she said that's so typical for the surgeons to get impatient, "if it's not moving fast enough, just cut it". One advantage of our being here a long time-- we have time to watch it longer under their care. She might still end up with a skin graft, but that healthy skin has to be cut from somewhere else-- and for the moment, let's not cut her anywhere else if not needed, please.

June 3

Spent the morning discussing ideas with Justin for how to balance our time back and forth between home and the hospital, and whether or not to keep the room we are renting at Ronald McDonald House. Ultimately settled on a tentative plan to utilize the early morning hours on weekdays: I will sleep at home, come up first thing in the morning and spend the morning at the hospital, until about 1:30, and then head back to Provo. Justin will stay with the kids at home until leaving for work at 9am, possibly working a little from home in the early hours. The older 3 kids usually sleep until 8 something, and have summer school four days a week starting at 9am and finishing at 11:30, and Gideon naps around 11-2:00, so I could be home for most of their "awake and home" time during the day. I am hoping it will help Gideon (who has developed some separation anxiety again) to know that mom will be home when he wakes up from nap time. Our bishop asked us to meet a woman in our ward who is looking for a week day job where she can bring her seven year old son, so we invited them to dinner last Sunday and are hoping things can work out to bless both of our families. Mom and Dad leave this Thursday morning the 9th, a day earlier than we had thought, so it is coming up fast. On the weekends we are planning to stay home on Saturday, when our "Auntie" will visit with Audrey at the hospital, and on Sunday mornings we will take the kids up and visit her in turns while the children play at the Forever Young Zone (an awesome playroom at the hospital), until it is time to head home for church.

Audrey is doing much better today. I held her while she slept. Her temp came down overnight and her congestion seems much improved. All of her tests for dangerous infections are coming back negative. I was probably right that she had simply caught a minor cold in the nose, but it's nice to know for sure.

Met our new "Auntie", a woman specifically assigned to visit and cuddle Audrey for a couple of hours a week, when we can't be there. She is planning to attend nursing school and has raised three children of her own; we liked her a lot and are so glad she will be coming on Saturdays to visit our baby.

June 2

Audrey had a rough day today. She was very congested and running a temperature and they wanted to be sure it wasn't a dangerous infection, so she had to have a catheter and two blood draws, which took most of three hours and five pokes. Poor baby. I was glad to be there for her to comfort and talk her through it. She squeezed my hand tight.

June 1 -- Esophagram

The esophagram was much less traumatic than I had expected, largely because I got lucky and had a radiologist who decided to use air in the throat (used her existing Replogle to puff air into her pouch, ingenious!) which would apparently show up on the x-ray just fine, instead of liquid contrast. Also, the barium in her stomach was far more diluted than I had expected, looked basically like water they were injecting into her G-tube. She nearly slept through her whole field trip-- her biggest complaint was being woken up and undressed.

Heading out the door on her "field trip" for her first esophagram-- checking for progress in her esophagus!

Our fantastic nurse Lisa, as we wait for the esophagram. The x-ray machine is behind her. Audrey slept through the whole ride through the halls, down the elevator, and only woke up once we undressed her for the x-ray.

Still sound asleep, just beginning to stir. I love that our lead coats were superhero colors.

*strrrretttch* hey, this bed is too hard.

.....Much better. "This bed is jusssst right." Back in the room after the esophagram, watching her waterfall crib soother.

Waited all day for the results and never heard, so contacted them ourselves in the evening and found out (through a chain of three middle people between me and the surgeon) that her gap is now 3.2cm (unstretched), versus 4cm stretched before, meaning stretched during surgery to try to connect the two pieces, so our gap to bridge is probably somewhere in the 2cm range now, meaning about two more months of growing. We don't want a tight connection if we can avoid it, so a brief message from surgery saying they will probably do her surgery in early July really shocked and worried us. I'm surprised at the poor communication-- I never heard from them directly, still haven't as of Sunday at this writing, and have had to seek them out and track down info at every turn, and have now requested a sit down chat with our surgeon again, hopefully to get on the same page and learn what they're thinking.