Thanksgiving Photo Make-Up Day

 Since her hospitalization over Thanksgiving was so unexpected, we did not have her cute Thanksgiving outfit with us at the hospital on the holiday. Best cure for a disappointed mommy? A makeup photo shoot!  I dressed her up, we grabbed the camera, and took about a hundred photos!  Here are four of my favorites.

Discharge Day!

More fun in the hospital playroom!

A family member gently reminded me to tone down the medical lingo when talking about baby Audrey. I'm sorry, I'm honestly not meaning to talk over anyone's head. For anyone who's confused, here's a basic summary of what's going on. Audrey's throat keeps closing down even though we've done everything we know how to stop it. We're in Massachusetts to try things that weren't available in Utah. Since she was closing down again even though we went through a major surgery in August to supposedly stop it for good, the doctor tried something new by putting a stent (piece of pipe) in her food tube to try to train it to stay open. The stent was temporary, and they were deciding how long to leave it in. After the past week, he was saying he wanted it in another week, but then after consulting with his colleagues he changed his mind and took it out today. The simple version of the result is, things looked really good and open after he took out the stent, a little irritation was all. He injected a chemo drug into the trouble spot to hopefully prevent it from closing down again. We will go back in a week to see if it is working. After all we've been through, I am not getting my hopes up. But at least it's something positive to report, and if tonight goes well she should get out of the hospital in the morning.

For my more medical savvy peeps out there, Dr Manfredi injected Mytomycin C into her stricture. It's a serious drug and makes me nervous, but we hope it works where nothing else ultimately has. She had a 12mm stent in place and when he pulled it out, he said her leak had healed over and she is currently more open than he'd ever seen. (Someone grab the Texas hairspray, quick!) We'll go back for a scope and dilation each week for a while to see what happens.

"Toss the Aquanet!  My throat's wide open and I want it to STAY!"

Reversal

Late last night I got a call from Justin:  Audrey's stent removal has been moved up to today at 11:30a.m. Apparently after consulting with the EA team, Dr Manfredi changed his mind about leaving the stent in. After removal, he will coat the troubled area with a topical steroid to discourage scarring and do some scope work, and the entire procedure will take 2 or 3 hours. We don't know what to expect post surgery in terms of her comfort, and we are also in the dark about her chances for success with this, but Justin said he is planning to resume weekly dilations/scopes afterward.

November 26

9 a.m. Monday, November 26

Audrey is still in the hospital, but doing fantastic. They even took out the IV on her foot so she can walk again, so she has nothing unusual attached to her except for the stent still inside her esophagus, and of course nothing allowed oral yet. Not sure when they'll take out the stent so that she can come home, but thankful that Justin traded with me for a day so I could come home and snuggle my kids for a bit. Had all three boys climb in bed with me this morning and tease each other by saying "MY mommy!" ("No, MY mommy!") Trying not to think about the reality that they might have to go home in 15 days, depending on what Justin's work decides. Because his tele-working is still on a trial basis, we bought two sets of plane tickets for them, one for Jan 8 and one for Dec 11.

1 p.m. Monday, November 26
She was just given approval to drink. Doctor Manfredi is now thinking of keeping the stent in possibly as late as Monday, which would make it almost two weeks in place. Justin and the doctor are contemplating having her come home and go in for frequent monitoring. Dr M really does not think this restricturing is being caused by reflux, but rather a blood supply issue to the tissue at the narrow point. He thinks it's possible they were too conservative during resection and we're still dealing with blood-starved tissue.   If he's right, and this stent technique does not put a stop to the stricture, we are heading to another resection, and possibly an adaptation of the Foker growth process that does not require paralyzation, to create enough length to have a relaxed and healthy repair.  I don't know what to think.

Dancing Through the Chaos

Trying on Mommy's shoes and cooking in the play kitchen at the bright and cheery hospital playroom.  She was so proud that she'd managed to wiggle her feet into them and walk a couple of steps in them all by herself. The nurse also did her hair this morning, isn't it so cute!

I'm so thankful for the physical ability to eat. Soon I hope I won't have to hide in another room from my child so she isn't upset by the sight and smell of food she can't have.

Otherwise, Audrey continues to do very well; she smiles and laughs to charm all the staff here in the hospital, and she is being allowed to have formula through the G tube again!  She still has the capped IV in her foot unfortunately, which puts a cramp on her style, and today she needed regular Tylenol because I think the stent in her esophagus is beginning to hurt for some reason.  But it has stayed in the right place and her temperature remains healthy.  (Many heartfelt thanks to Dawna for sending me more details on warning signs for an eroding esophagus during stent therapy.) Dr Manfredi said on Wednesday that he is thinking of possibly keeping the stent in all the way through next Friday.  My heart sank a bit at that.  He also said that it might be necessary for her to have another resection surgery down the road, if her esophagus does not stop restricturing.  As in, a thoracotomy (open chest surgery) like the one we had in August.  He does not think her stricture is caused by reflux nor that it would be helped by a fundoplication (stomach wrap), but he thinks rather it is caused by issues with blood supply to the area of the esophagus, a result of unhealthy tissue that could still be under tension from a tight repair or old scar tissue.  Pardon me while I pick up my own stomach off the basement floor. 

But, back to today.

She had a great time in the hospital playroom!  She's free of the IV pole and can toddle around as best she can with a big diaper wrapped around the IV on her foot.  They didn't want to take it out because she is such a "tough stick" and they may yet be able to use it again for surgery I guess.  (Her IVs take a lot of tries to place, it's really sad.  Once they've used one site they can't use it again because of scarring in the vein.  The one good thing is that all of her recent ones have been placed while she's under anesthesia. But she's had them now in her scalp, in her thumb, her big toe... they're needing to get creative and unfortunately it's only going to get worse. Not to be sad or gross.)

I want to take my baby home so bad, and rejoin my other sweet children there.  I keep needing to reign in my impatient heart as it beats hard with frustration, and try to ask instead, Lord, you know what you're doing, here am I, use me in this place.

Still, I wish I could get out some of my frustration in a good rigorous dance class.  Not long ago, I used to dance. Modern dance--kind of like barefoot ballet--is my passion.  I hope I can return to it some day, but for now I will go on dancing through the chaos with my precious family, and we will continue to search out the blessings in every situation. 

Holiday Plenty

HAHAHA!!! Wish I'd thought of this! Someone drew a turkey on their child's feeding pump bag so they too could have a "turkey meal." Soooo cute!  (Thanks to Diane D. of Feeding Tube Awareness for this pic)

Spending Thanksgiving in the hospital today was so special. I tried to say an extra thank you to everyone I saw who was working today. So, so happy to have spent the day with my husband and all of my children together. Audrey and I watched the Macy's parade until they arrived from their 1.5 hr journey, then went downstairs to the cafeteria where the hospital had put on a delicious complimentary meal for all of the patient families! Visited some of our friends in the hospital, then put Audrey down for nap and walked to the Yawkey Family Inn to visit more friends and had a another beautiful meal. So grateful for the generosity of friends and the hospital for free parking and meals today, even leftovers to put in the hospital fridge for me to eat later this week. All of us loved our time together. Wrapped up the evening with games and an informal violin concert with some new friends, even got to sing a bit!

So cute to watch Audrey and Gideon's rapt attention to the violinist. Then the fam and I watched the movie "Brave" together and parted with many long hugs. Audrey is almost up to full volume on her pump feeds, so hopefully we can lose the IV in her foot tomorrow and let her resume practicing her favorite new trick-- walking!

Thanksgiving in the Hospital

Today was a big day for Audrey. She went into it cheerful as a lark, giggling and flirting with all the nurses and doctors. Dr. Manfredi says her esophagus had constricted to 10mm, and he brought her back up to 15mm, but in the process two things happened: one, a very small "contained leak" was caused, and two, a long tear formed in the tight area--he said this tear is actually a good thing, we

want it to tear and then scar over in a wider more open way. But the way that it tore if allowed to heal on its own would have tightened her even further, and he wanted to keep the progress we had made, so after careful consideration he placed a very long stent in her throat to hold the tear open and encourage the torn tissue to reconnect it in a more open shape. Essentially the stent is like a long stiff plastic tube almost the full length of her esophagus, and he plans to leave it in for a full week and remove it next Tuesday November 27. Some of you might remember the worries we have had about esophageal stents in the past and that a similar treatment led to the death of a sweet little boy last year in California, so we took this news very seriously and asked many questions. I am very happy to report that the hospital is planning to keep her heavily monitored all week long as an inpatient-- in other words, Audrey and I will be staying in the hospital for the next week, unfortunately yes it is through Thanksgiving weekend, but fortunately in the sense that we are in the best place possible to keep her safe from the potential complications of the stent and the potential serious infection that could result from the perforated esophagus, and also fortunate that we can visit others of our new friends who are also in the hospital over the holiday, giving us the opportunity to bring cheer to them and see a different side of Thanksgiving. This scripture comes to my heart tonight; "By small and simple things are great things brought to pass, and small means in many instances doth confound the wise."

That Moment When

Today started out pretty rough. I don't cry much any more, really not since the adventure started before Audrey was born; it's been so surreal and we've been so blessed through prayer that it's actually a pretty amazing experience in spite of all the crazy unbelievable stuff. But today DID put me in tears for a minute or two. The kids were MAJORLY squirrely during the first hour of church, and I kept hearing other people's kids in the chapel coughing these horrible bronchitis-like coughs. Suddenly I felt a crushing load of being overwhelmed, and extreme germophobia for Audrey-- since the anesthesiologists won't let the docs do their stuff if she gets sick, but we really needed that lift of going to church, but Justin had also forgotten Audrey's pink blankie (a recipe for misery come 11 am, right there) but we were about thirty minutes drive from home, and now the kids were messing around during the sacrament AGAIN. The stress balled up inside me to where, when we had a couple's pow wow outside the chapel after the first hour deciding whether to leave or to stay, I couldn't articulate an opinion, and it somehow turned into this big argument that sounded kind of like third graders yelling "FINE". He wanted to let me go to church while he stayed outside as a martyr, but I wanted to do the same thing for him (it's really quite ridiculous) because we both wanted to go but the babies were done and I was a total ball of nerves. Finally we agreed that he would go in to Sunday School with the older kids and I would stay out with the babies in the car and drive circles trying to get them to sleep, but then the tablet was turned up so loud that Audrey couldn't fall asleep with it blaring "SHIP... blaaaaaaah" and "TRAIN....choooooooo" and I couldn't find the volume button to turn it down and Gideon started to wail because I was taking too long looking for the volume button and he wanted it back, and Audrey started to wail because Gideon was wailing and she still didn't have her "buh", and at that moment I realized I really needed to pee. And there was no way I could leave both of them in the car to go do that without another adult to take over, nor could I take them both in at once because naturally both of them had torn off their socks and shoes and flung them every direction, plus Audrey was now reconnected to her feeding pump because her reflux was so bad last night we'd had to turn it off at midnight, so she'd gotten barely a third of her feed at night and needed to get it at every chance during the day, making it further impossible to grab both of them and run into the chapel to MAYBE find my husband and MAYBE not have them catch the plague in the process. I opened the door, gulped some air and walked (mostly) calmly into the chapel and waved down my husband, who gallantly came out and helped turn down the volume on the tablet. And let me bawl in his arms for a minute. And then sent me in to go pee alone. The man is my hero. After that, the day got better. I chilled out enough to enjoy meeting some people that are looking to move from MA to the neighborhood right behind our house, enjoyed some free food after church with the ward we're getting to know, helped clean up and laughed with the ladies, and then when we got home one of the sweet neighbors brought us some squash, and another neighbor brought us a beautiful blueberry pie. I finished out the day with my husband making me a delicious dinner while I messed around with the blog and tucked Eden in for an early bedtime, then read the boys "The MONSTER at the End of This Book" in full Grover voice and kissing them each twice before sternly saying for the tenth time "SLEEP NOW, I MEAN IT.  No Aaron, you are not going explode with energy. Implode instead and go to sleep." True story.

Audrey Walks!

I'm so excited to share this video with everyone!

 Don't you think it's so appropriate that some of her first steps were taken in historic Plymouth (as in, the rock), just a few days before Thanksgiving!?  These are days of work and adventure for all of us in a new world.  

 In spite of some challenging reflux episodes during her continuous pump feeds at night, during the day Audrey is getting bolder about trying foods by mouth and we are hoping it continues to last and her throat does not constrict significantly again.   She's beginning to overcome her oral aversion again, and is finally enjoying trying new things like putting a toothbrush in her mouth.  So many little things you and I never usually think about are suddenly so important and exciting.  We'll learn more on Tuesday during her dilation, but so far she seems to be handling stuff by mouth pretty well without getting anything stuck.  



 Also, if anyone has brilliant ideas for fundraising or time to help organize one for her, please share comments.  The debt is kind of weighing on me and I need to start planning something soon to help ease the stress; I usually avoid debt like the plague but this is one case where it just needed to happen that way.  Again, our family is immensely grateful for all of your support!!  Have I told you that fundraising and gifts covered their plane tickets, the first month's rent, and the first month's car rental?  Our wonderful landlords of this vacation house have been extraordinarily kind to us, sending us flowers on our arrival and even cutting the rent down to what we could afford for the time we need it.  Then, a glitch in Enterprise's system led to us being first vastly overcharged, then helped by a caring representative of that company to get us a much lower rate than we were originally quoted?  That is just incredible!  Thank you so much!  I have to work at not stressing about all the things I don't have figured out, and look at all the evidence that God's already "got this".

 I was deeply touched by our experiences visiting historic Plymouth, reflecting on the rich seedling starts of our nation.  Full of faith, these people pressed through incredible obstacles, and reached out to new friends to help them make it through.  They really felt that God was leading them on this journey, and lived their lives in the faith that "if he brings you to it, he will bring you through it."  In honor of Thanksgiving, please allow me to quote a letter I recently wrote to a dear friend:  
I have felt the Lord's cradling influence in my life nearly constantly throughout this entire process; I want you to know that he has been literally right there beside me holding my hand every step of this process!!  He is there, and I do not ever doubt it, and he has taken care of every need and given me opportunities to serve and to meet new friends and learn new things.  I know he has a plan for her and for our family, and we are all waiting on his time!  With all due sensitivity, I honestly look at all of this as an adventure, of a time of just keeping our hearts and minds open to whatever the Lord has in store.  We are learning so much.  It will work out, no matter what, no matter what, no matter what!  We have the greatest promise possible! He will hold us through it all, and when and if there is a time for partings, He will continue to hold our hands and ultimately we have the promise of being together with Him. We have pitched our tents in the Lord's camp and we will trust Him in everything to lead us to and through the things he has in mind to mold us into the warriors he needs.  Our muscles are being strengthened and stretched.  Please believe me when I say we are really, truly doing fine, and working through these challenges with a cheerful heart and a mind toward healthy hard work and waiting on the Lord's time.  Being together right now is a precious gift for me, and makes everything so much easier.

We all have so many more blessings to count than we realize, any given day.  But being together with loved ones for Thanksgiving day is huge; if you know anyone who is lonely please reach out to them and welcome them somehow into your life.  And if you have a quiet moment please remember Audrey, and remember to be thankful for your ability to eat!

Together is a Beautiful Word

I think a lot of deep thoughts that never make it onto paper.

This is one of those times in my life where life itself is happening at such a feverish pitch that I sometimes feel like I am standing outside myself, watching and just appreciating the little things.  Writing has always been an outlet for me, but lately it's been hard to find time to put into words the things I am feeling and experiencing.  If you are reading this, thank you.  We all thank you, with all of our hearts, for your support, your prayers, your help and love, your time and your caring.  So many friends and family members have been part of the sustaining force keeping us together, both literal and in metaphor.  At this moment I am watching two of my children play quietly on the kitchen floor, another working at a desk, still another reading schoolwork on the couch.  Justin is working, thanks to modern technology, from the basement of our temporary home here in Westport, Massachusetts.  The scene is simple, the implications profound.

Three days ago my family should have returned home to Utah without me and Audrey.  Thanks to the financial support of many friends and strangers, and a willingness to go a bit into debt, we were able to spend this past month together here at a furnished rental home in beautiful southern Massachusetts while Audrey has continued to work toward being capable of eating by mouth.  The children and I had a lot of adventures together, although some things did not go quite as planned.   Justin needed to work a tremendous number of hours in order to write an important document for his job, and we learned that Audrey still has a while to go before we will be able to return home.  At the end of our four weeks together, we were preparing for a somber good-bye and the likelihood of spending the holidays apart, when miraculously we were able to work out an extension of their stay.  All of the pieces fell into place at the last possible moment, and instead of a teary good-bye we spent a relaxed Saturday enjoying some of the beautiful sights in Boston, including the Old North Church and Paul Revere's home.  We'll need to plan some fundraisers later to help, but we trust that God will provide and we know that being here together is the right thing for us right now.

Since Audrey's resection surgery in August we have had weekly dilations to stretch her esophagus open, but sadly her throat has been restricturing each time.  During the dilation procedure (which is performed down inside her throat while she sleeps in the operating room under general anesthesia, so I often refer to it as a surgery), Dr Manfredi has repeatedly injected a small amount of steroids into the tight portion of her esophagus to soften and train it to relax and remain open, much like a dermatologist would treat a keloid overgrowth of scar tissue on the skin.  Ever since the surgery in August to remove the nasty scar in her throat, that newly reconnected portion of tissue has been healing and changing to develop its own new scar, and we have been working hard to keep the tissue healthy and pliable which is the first step to keeping it open.  I had felt many times that these injections are the answer to what she's needed, in fact it was the reason we came to Boston for the resection rather than staying in Utah, but I was becoming discouraged as the results still showed a lot of swelling in her esophagus.  We were beginning to anticipate the doctors recommending a fundoplication, a surgery in which the stomach is wrapped around the base of the esophagus for the prevention of reflux (the common cause of restricturing despite daily high doses of Prevacid).  It is a surgery which I have urgently hoped to avoid, partly because so many of our new friends have had scary problems with theirs, and partly because of an unexplained ominous feeling ever since I'd first heard of the surgery when she was an infant.  But then, on Friday November 9th, we received the unexpected news that she had stayed open between dilations.  He had been removing the old stitches out of her surgical site each time he saw them over the past several weeks, and it is his theory that these old stitches had been the primary reason for her throat closing down each week as the tissue worked to push out the old bits of string.  Now that they're gone, he's hoping we are out of the woods.  Furthermore, he says the tissue looks great and is thin and pliable, and he does not need to inject any more steroid because the wall of the esophagus looks beautiful.  Wow.  So now, Dr Manfredi is going to try extending the number of days between her dilation and see what happens.  Instead of going to Boston Children's this Friday, we'll be going next Tuesday instead, putting the dilations approximately 11 days apart instead of seven.  If she has not lost ground, we will spread them out even farther.  The hope is that we will reach the point where no further dilations are needed.  We are cautiously optimistic, myself perhaps less so than the others because it seems like we've been here before and always wound up having more problems, but even so, it is a great place to be for the moment.  He said to let her try eating whatever she wants to this week, because he left her pretty open with 15 millimeters at her smallest point.

 

My whole life seems inside out.  I have no idea when I'll be able to return home.  But for the moment, things are relatively peaceful.  There are endless blessings to count.  We were safe during Hurricane Sandy--more than safe, we were even staying at a hotel inland after visiting the Sacred Grove in Palmyra, New York, where we miraculously spent a clear and quiet morning with the forest all to ourselves before the winds even began to gust, despite heavy rain everywhere else all around.  We were together this week for my birthday, and we'll spend a quiet and joyous Thanksgiving together.  We still don't know if we can be together for Christmas, it all depends on whether Justin's work feels he can continue to work away from his office.  But the way I see it, ever since last Saturday we are on bonus time, so it already feels like Christmas.

I look at my children's faces as they grumble over their homework and watch the two babies learning to share while they play.  I crack the proverbial whip with a stern demeanor, but inside I am smiling.  Audrey took her first steps this week and the others were here to witness it.  Much like the grief process, I believe that healing and happiness are multi-faceted.  These past few weeks, I think we've seen every side. 

November 2nd

I have so much to be thankful for, although I confess I had a discouraged moment (or two) today. In the past two weeks Audrey had constricted down to a tiny opening again. Dr. Manfredi dilated her esophagus to just 8mm (where a month ago he was pushing 15). He is still sounding very positive about things and said it opened up really easily and he took out some more suture material in there that could have contributed to swelling. In my sinking heart though, I pretty much feel like we are caught in a vortex of endless dilations that is going to lead us to that horrible decision of whether or not to do more unwanted surgery, the fundoplication "stomach wrap" around her esophagus to prevent reflux against the stricture area. Why oh why can't this end? I want to go home with my kids and husband. They return to Utah in 7 days. This is going to be a week of ignoring reality and enjoying one another to the max, in spite of the fact that Justin is buried in work, and I mean, blizzard-like. Bless that man for watching the two year old while I took Audrey in at 5 this morning for her procedure. We're both pushing through this pretty hard, but the peaceful surroundings here in Westport and the joy of being together make it all worth it.