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.