May 31

These posters are made for each of the kids in the NICU, from a questionnaire the parents can fill out, to help nurses get to know the baby better. Under "favorite toys" I put, "Daddy."

Her "esophogram" x-ray to check the growth of her esophagus is tomorrow morning at 10am! She will not have milk through her G-tube from 8-10am. Then they will inject a thick, chalky barium dye into her G-tube (direct-to-stomach feeding tube) and induce a reflux by making her gag (sad, huh) in order to get a good view of the piece above the stomach. They'll get pictures of that, and then they will put a tube down her throat and get another picture of that top bit. Somehow they can measure the pieces based on that, and determine whether they are growing closer together as we have been praying. Little Aaron John, my six year old, is especially cute every time he prays-- he always remembers to pray for Audrey's "ersopligus" to grow. I hope to be able to tell him that it's working. :) I believe the prayers of children are given special priority.

The other baby in the NICU with long gap EA had his surgery! Had a long talk with his nice mom today. His recovery process now is an exciting opportunity for me to learn about what is coming some day for Audrey. What a cutie little Sawyer is, even sedated and sandbagged as they need to be post-op for a few days. They've been here since his birth on January 12, and his gap was 2.5 cm. He was also born at 37 wks. So, if the two babies are very similar, Audrey will probably not have her surgery until September.

May 26 - 30

She's been so sleepy all week! I suspect she's been in a growth spurt. Our babies usually have had one at three weeks old, but since she has been getting more milk her growth has really taken off! Dr Black stopped her at just over half milk feedings to protect her surgical site, so she is still on the TPN (intravenous nutrition) but only about half the amount for a baby her size. They're planning an x-ray next week to check the growth of her esophagus, our first chance to see if she is growing in that way. Hope hope hope!!

I haven't mentioned her wound progress in a long time, but the wide blistery IV burn on the back of her hand from the calcium citrate fiasco is nearly to the point that it can begin to scab over; you can see it healing from the deepest layers underneath the wound, and in the past two weeks it has turned from dark purple to red, to a reddish white.

 The best thing about it by far is that she is now using her left hand normally again; except for the huge band-aid, she doesn't seem bothered by it any more and freely uses whichever hand is closest to gleefully pull out her suction tube whenever we turn our backs. Her nose is now handling the Replogle really well too, on either side. She's definitely feeling much better, and we've enjoyed a relatively normal "cute baby" time with her this week--on Monday she'll be one month old! Her surgical wound on her side is still open from when they took out the sutures to clean an infection, but it too is closing in and getting smaller. Ironic to think, but I'm sure it will be beautifully healed in plenty of time for them to cut it back open, you know? Thankful as I am for the things I am learning through this experience, I can't wait until this is all behind us. I want so badly to teach her that basic trust-- that when people touch you it is a nice thing, they are not going to hurt you.

To finally get there, and then to need to return to those difficult days after she has her second surgery, and then to have the prospect of future problems (such as strictures, tightenings in the esophagus at the site of the reconnection that can make it really hard for her to swallow, which are treated a bit like an angioplasty with an expanding balloon) that could bring us back to the hospital-- sometimes it makes me hurt for her. My friend Tabatha had a really good idea, to talk to her and explain to her what we are doing when we touch her, so that as she develops an understanding of language, it can help her with that trust issue.

After a very sleepy day on Thursday, she woke up after evening cares and spent a happy hour with us. She was "rooting" a lot and we decided to give another try to the non-nutritive breastfeeding. To our amazement she latched right on as though she'd been doing it all along! I had just pumped, which is how we need to do things for now, so of course she wasn't really drinking, but it was adorable, her little sighs showed how comforted she was by it. At one point she did get a couple of drops of milk and was surprised and quietly thought about that for a while. If we can get her to associate nice feelings with her mouth, and pleasant tastes with swallowing, it will help tremendously to avoid the oral aversion that is usually a big problem for these babies as a result of so much medical trauma. Even better, if she can start learning how to breastfeed now and to like the taste of milk, she will be all the more prepared to start really eating when the time comes. Justin has been giving her tastes of milk on her pacifier sometimes, and the nurses and I have sometimes been giving her tastes of sucrose "SweetEase" on her pacifier too. It's really cute to see her wheels turning as she considers these tastes.

She loves her pacifier!! That's actually a pretty big deal in the NICU. Lots of babies have to re-learn how to suck and swallow without gagging, due to oral aversion. So far, Audrey only gags on it once in a while. We're thankful to our EA friend Vanessa for the suggestion to put the Replogle (suction tube) in the nose instead of the mouth so that she enjoys her "passie" much more than before when it was through her mouth.

On Friday morning we headed home to swap back with Mom and Dad and attend the last day of school festivities for our older three children. Baby Gideon was so happy to see us! Needing to be in two places at once for these kids is definitely the hardest part of this whole thing. We are still trying to figure out what to do when Justin's parents go home on June 10. My mom can come help during Father's Day week, but the rest of her summer is booked, so by the end of June we need to have some other plans in place. How can I leave Audrey up there? And yet, how can I leave four kids who need me at home? Who *I* need too. We all need each other so much. We all get a bit grouchy with each other too, as we deal with the emotional fallout of everything, the mixed up routines, the changes, the stress. Having Grandma and Grandpa live with us has been a nearly ideal solution for the time being, but after spending a generous six weeks with us, they have their life in California to return to. Justin and I are trying to figure out what would be the healthiest thing for our family-- we don't know if we can afford a nanny while paying rent up at Ronald McDonald too, but that is what would probably work the best. We're hoping to start getting something figured out this weekend.

May 23 - 25

Thanks to the window at her bedside, Audrey got to enjoy her first rays of sunshine. I unwrapped her from her blankets so that she could really feel the rays, and she enjoyed a nap in the sun. While she was asleep, the nurse and I even put her little sunglasses on her and had a good giggle.

"My  future's so bright, I gotta wear shades."

I found out that over the weekend while I was away, they started her on Prevacid, which apparently was a mistake. It had been some kind of misunderstanding between the surgeons and the nurses. It's not a dangerous medicine except that when you neutralize the stomach acids, there is an increased chance of infection because the stomach acids are a primary germ killer. Neither us nor her primary surgeon, Dr. Black, knew anything about it until Monday evening, and Dr. Black immediately discontinued it. I asked if they could call me whenever they decide to start a new medication, and was told by the nurse practitioner that they don't do that unless it's a medicine that requires parent approval. I wasn't very comfortable with that answer, but consigned myself to it thinking maybe I was feeling a bit overprotective at the moment. It's a little creepy sometimes to feel so powerless over my baby.

Justin wasn't going to come up this week, but lucky for us he had forgotten about an eye appointment up in SLC, and so he switched plans and we get him for a couple of days after all. He gave Audrey her Wednesday night bath with the help of our nurse Cade, the first guy nurse we've had, and he was very funny so we were all in a good mood-- as she was being scrubbed down, I told Audrey that being pampered by men is a sign of the ritziest spas. I helped Eden finish a school report over Skype. After her bath in the quiet dim light, cozy in Daddy's arms, Audrey decided to hold her head up on her own, and looked side to side, and side to side, with wide dark eyes.

 

 

 

May 21 - 22

Her due date was May 21, and she is three weeks old today! Amazing to think about how far she's come! We are happy to get to spend the weekend together at home in Provo with the four older kids, while Justin's parents spend time with Audrey up in SLC. Until they head home to California, we'll try to keep this trade-off going for the weekends. It feels really healthy to have some "normal" time to balance out the hospital weeks, and Mom and Dad seem to enjoy it too. We planted the garden, I organized the boys' dresser, and we attended church and actually walked into a grocery store for the first time in... pretty much forever. And I think my hormones must be settling down a little, because I feel a lot more steady about coming and going between our two homes. I had one scary experience, driving home from SLC on Friday night with three of the kids, I must have been completely exhausted because suddenly I just could no longer concentrate on driving, it was so creepy; I pulled off the freeway in American Fork and got out and walked around a bit, and ended up taking the back roads home. I'm swearing off night driving to or from Salt Lake for a while. We'll figure out a way around it somehow. Maybe I'll head home in the little car no later than six and let the kids stay with Justin and his parents for their "arms time" with Audrey and dinner. And actually, school finishes up this week so there won't be the time constraints of that either, so there should be no difficulty avoiding it.

May 20

Aaron earned the first turn to meet Audrey by good behavior with Grandparents. I am changing her diaper and doing her "cares" in preparation to take her out of the crib and let him hold her. He is so excited!

A big, big day! For the first time, Audrey got to meet two of her big brothers and her big sister! She smiled when Aaron John talked to her, and she slept peacefully in both Eden and JJ's arms. Eden said that holding her was "Amazing." JJ says, "She's super cute." Big photo opp. All the kids and Baby Gideon love the playroom we've discovered on the next floor down, and don't mind waiting their turn. (Because the youngest age of permitted visitors is two years old, Gideon won't be permitted to visit Audrey at her bedside.  He doesn't seem to mind, though it breaks my heart, but I just can't allow myself to think about it.  If he was able to come, I would be able to be with both of them in the daytimes, bring him with me on my visits.... but then I wouldn't be keeping as much attention on her needs, and he would want to play and move around more than would be safe; I do understand, it's just hard.)

At "rounds" today (the daily chat with a core committee of doctors and specialists at Audrey's bedside) I shared with them a scary experience I had yesterday with her Replogle backing up--which happens often, but usually we catch it pretty fast, except that this time we didn't and it backed up all the way to where her saliva pooled up into her mouth--and the terror in her little eyes as she couldn't breathe for a few seconds as spit bubbles appeared on her lips. I had quickly turned her on her side and gotten things cleared with the help of the nurse, but it is scary to think that that could happen any time when a nurse was busy with the crib next door or something (we are in sort of a cubicle there) and that there is no alarm to let them know when it backs up. The saliva at the bottom of her throat is often very thick and mixed with mucous-y gunk, so the tube gets clogged pretty often, usually every two hours or less, and it can happen without warning. There is one alarm that would go off eventually, but not until she was literally unable to breathe for about thirty seconds, and even that alarm sometimes can be misleading and sound frequent false alarms caused by a number of things, so it could be a while before they would know it was a real emergency. Plus right now they are really encouraging her to get lots of deep sleep for her growth and healing, and trying to let her be as much as possible especially at night, so her crib is usually a quiet, restful place and she can be deceivingly low-maintenance. Super scary when you think about it, especially if you imagine it from her eyes the way I saw it that day. Anyway, a note was added to the nurse's instructions to try to check it every 30 minutes instead of 60, and it's another one of those things we are just going to have to trust them to do since we can't be there all the time to watch it. We also got approval to try putting just a tiny amount of water down her tube to thin those secretions when it is clogged and caught very early (which is 99% of the time, we often have warning because there is a little bubbler attached to the tube and usually we'll just see it has stopped bubbling or isn't bubbling very strong), and un-gooping the tube with a quick little shot of water is something Justin has wanted to try for some time-- they said they would give it a try and keep track of what worked and what didn't, and hopefully come up with a specific plan and method that could be "prescribed" for her care.

Audrey grinned really wide multiple times when Aaron was talking to her and asking me questions. It was as if she recognized his voice, or they shared a wonderful joke.  One funny thing we did realize: both Aaron and Audrey share the only two A names in our family, and both were born on the last day of the only two A months of the year.

Aaron has always wanted a baby sister, and holding her for the first time made it officially real.  His dream had come true.

J.J.'s turn!

 JJ was so tender and sweet with her.  Finally, Eden got her turn.

Eden called the experience of meeting and holding her baby sister for the first time, "Amazing," with a sweet tone of reverence in her voice. It was really special to see her reaction that way, because she shares my needle-phobia and was originally nervous to see her with the tubes and wires.

May 19

Graduation Day! Today she is being transferred from a warming bassinet into a crib.

 

Chillin' in her new big girl crib!

It means she is maintaining her own body temperature to their standards. Never mind that yesterday the heating system over her area went haywire and was blasting icy air, while outside we were having another freak blizzard.... luckily it was fixed before bath time, and she was all snuggled into blankies with one of us for most of the day. :)

Another silly little milestone that other moms will appreciate-- her first 'blowout' diaper-- but the seriously good news about it is that it means her digestive system is waking up and responding well to the formula feedings. Amazing how meeting other moms yesterday whose babies have so many problems in their digestive tract, scary sad stuff, helps us realize even more what a blessing it is to have a healthy digestive system.

Kiley our Physical/Occupational Therapist (PT/OT) came by to teach me some physical therapy stuff to do to encourage Audrey to use her injured left hand, especially to extend her little fingers. Baby complains a bit at first, but after just one session with Kiley and I encouraging her, there is a major noticeable improvement in Audrey's range of motion and comfort using that hand. She is now clasping her hands in front of her, moving her hands to her mouth, reaching for things that bug her, and even sometimes holding her pacifier in her mouth, even sometimes extending those left hand fingers whereas before she was just keeping them in a little fist shape and held close to her body almost all the time. It is so encouraging to see. I am really starting to trust Kiley a lot, and I feel grateful she was a great ear today for me needing to vent some frustrations today.; We have a similar style of nurturing toward the baby and I have very much appreciated the things that she has done for her, and the way she observes Audrey's cues. She is a great advocate for Audrey's own wishes, and I am so glad she is on our team.

Kiley, our Occupational Therapist, has been a wonderful help to both Audrey and I, in her thoughtful whole-person approach to physical therapy.  I feel so lucky to have her on our team, and am so thankful for her enormous support!

A little disappointed to learn that the Replogle has been pulled out three times in the past day and a half-- I can't help feeling that this is done out of impatience by nurses who mean well but don't realize the need to keep it in as much as possible in order to prevent irritation to her nasal passage. It blocks up fairly often, about every two to three hours, with thick gunk from the bottom of her throat, and when Justin or I am here we have so far always been able to clear clogs without pulling it out. I feel helpless and frustrated knowing that when we are gone, nurses have been pulling it out. Makes me anxious about leaving her. We are starting to brainstorm what we are going to do once Mom and Dad R go home on June 10th. Their living at our house has made it possible for me to be here. I am also starting to wonder if her esophagus will actually grow on its own with only the top half free to extend downward; if hers is the only case like this, then she may just buck the trends in this way too. There has not been a change in the depth of her Replogle in at least the past week. If it doesn't grow closer together, at the moment we are feeling pretty strongly about Boston. I hope that doesn't need to happen.... please pray for her esophagus to grow.

I am getting really excited for the kids to come meet her, hopefully tomorrow! Last night's bath was a funny experience-- the nurse had us do it completely on our own, and even with both of us here it was a clumsy comedy! Audrey kept looking up at us like, "You silly grown ups." She loved having her head massaged, but when we cleaned her limbs and torso, then spent a couple of minutes untangling her cords before wrapping her up, she let us know her displeasure by royally peeing all over Justin. I was laughing so hard, and he said, "who knew girls could shoot?" I laughingly apologized to the nurse for messing up their numbers, since they weigh all of her diapers, and this would have been a heavy one!

May 18

Her milk feedings have been gradually raised to 1/3 her daily nutrition. We've had lots of worries about the potential for liver damage caused by receiving nutrition primarily through her veins (TPN) ever since we first learned a week ago that it is a big concern for patients who rely on that for their food, but no sign of this yet in Audrey, and our fears were greatly helped by chats with the doctor and nutritionist yesterday. Having part of her food in milk makes her body handle it much better.

Plastic surgery came and looked at her hand again and explained problems they are watching for, such as difficulty moving fingers that could indicate deeper damage to tendons etc.

Our first time attending the weekly NICU Parent Lunch. It was SO NICE and we met so many of the parents who have become familiar faces now, and learned about their situations.

Aaaaaaand....... *drumroll* MAJOR NEWS FLASH: the NICU RSV restriction has been lifted as of today, meaning that our three older kids can now come meet Audrey for the first time!!!