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.