Crazy Day

Today was a rollercoaster. Started out great-- I was super stoked because they decided to move up Audrey's esophagram (originally scheduled for next Wednesday) since she has been doing so amazingly well!! Then I got to meet another EA/TEF mom I'd talked with before only online, and say a bittersweet good bye to my hospital room mate who finally got to take home her preemie after a month. We were called down early for the esophagram, and unfortunately that's where the rollercoaster took a major dip. The original intention of the esophagram was to verify she had no leaks and approve her for starting formula again instead of intravenous nutrition. Even though we've done this type of test many times before at home, this study was an unusually torturous ordeal for Audrey; they held her arms and legs firmly and had to give her a nasal tube to get the contrast in, which was absolutely terrifying for her and then we learned that she has two problems: a minor leak at her surgical site and major reflux..... both very bad news I was not expecting. Fortunately, the leak is very minor and should respond well to strong antibiotics (and just means we have to deal with another week or two of TPN intravenous nutrition instead of formula, difficult for her because she wants to crawl and has a major leash to contend with), but as for the reflux, I have no idea. They put some contrast in her G tube last week, and I watched as within moments it popped halfway up her esophagus.  It means a lot of important things for EA kids-- perhaps most relevant for Audrey, it can be a major culprit in the restricturing process-- the action of that fluid coming up into the throat can cause the formation of the brittle scar tissue we've battled so much and tighten down the throat within a matter of days to a tiny opening or none at all.  Justin and I are both very averse to getting a Nissen fundoplication (stomach wrap to prevent backflow) for her, since so many people we know have had big problems with theirs.  Her reflux has not ever been an issue, not even irritation from acid in the esophagus, although she's always been on medication for it since birth because they have always assumed she has it.  But it was never tested before today, and suddenly I felt trapped into a surgery that has scared us ever since we first learned about it over a year ago. I don't know what to think, whether this could be a new condition because of the recent surgery, and might get better on its own as the tissue relaxes and regains a more natural shape, or if it has always been there but just was blocked by her stricture.  Today is also the birthday of one of my sons, my cute 7-now-8 year old, and it was tough being apart for that even though we celebrated before I left.  The day ended on a positive though, when I inherited my roomie's window bedspace and ran into friends from the family house in the cafeteria, and Audrey giggled a ton while playing with me at bedtime.

Save the Hospital Garden

Please consider taking a moment to sign a petition to save the Prouty Garden at the heart of Children's Hospital Boston, by clicking on this paragraph, which will take you to the petition's website. The garden has been central to our family's healing during our stressful time here, and when I found out today that there are plans to bulldoze the garden to make way for more office space, it was like a physical blow. The Prouty is an oasis of peace in the middle of the hospital, a ray of sunshine and fresh open air for the kids and families and employees that is irreplaceable. The petition is a little over 2000 signatures away from achieving their goal, and while I am not normally one to take up a "cause" this is something so clear-cut and passionate for me that I feel a deep need to help wherever I can. Please help make a huge difference for patients now and for decades to come! Sign the petition and reSHARE! If you would like to share the web address it is: http://www.change.org/petitions/boston-children-s-hospital-preserve-prouty-garden   Thank you!

She Wants Daddy Back, but Sunlight and Hugs Help in the Meantime

She has finally turned the corner so I can share how worried I've been; the past two days Audrey has been depressed! Even though she has been getting so much better, lost her chest tube and even her oxygen support, she just had no interest in anything. Not reaching for things, not smiling or talking or even reacting to people or toys, completely apathetic except to cry in worry every time a nurse approached. I was getting really worried and exhausted with the stress of trying to help her be happy. And then, today like magic, she turned the corner a little after I took her outdoors for the first time since surgery. There is a garden courtyard in the center of the hospital with a lovely space of grass and there was a lunchtime jazz concert today. I took her to it and she just stared around without smiling or reacting, but I know it did a lot of good for her. When I brought her back up we snuggled for a while, and after a short nap she started showing interest in toys and mischief again. At one point, she even said "ducky." But by far best of all, she started giggling again! She must have giggled twenty times while playing (for he first real time) with her toys and balloon. Best sound ever!

Good Bye to Daddy

Chest tube drain is OUT!!!  I'm told those things are so painful, man, this is a really big deal. She's down to only a 1/2 liter of oxygen also, so she's basically off of everything, and it hasn't even been a week since surgery! They are still beating on her chest and deep suctioning her airways a couple of times a day to break up congestion, and that is very upsetting to her, so she's keeping her mouth closed all the time right now (a resurgence of her old oral aversion). But Justin is getting to cuddle and hold her right now, so she's venting all her frustrations to Daddy. He heads to the airport in about an hour.

Moved out of Intensive Care!

Audrey has been moved out of intensive care!

This corner of Audrey's hospital room is where I will sleep for the next month until she is discharged.  It is a shared room with one other family.  After five months in the NICU last year where I couldn't stay overnight with her at all, this might as well be the penthouse suite. I am so relieved to be able to stay right with her and be there to help or comfort with everything that she needs to have done to her, it doesn't matter how much space or comfort I have. The time will seem shorter because we're together. I don't count days because things often happen to extend or shorten people's stays, so for me just taking each day at a time is the best way to manage. But if I ever need a break, the art museum is a couple of blocks away, as are the trains to countless lovely things. Though if my prior experiences are any insight, I think we may even be seeing a very quick discharge at this rate. Time will tell.

She loves her new Boston duck that we got for her while she was paralyzed, and the kitty she borrowed from her 9-year-old big brother (who was happy to share and very sweet about it) as we were heading to Boston.

What a big day. Audrey gave us her first smiles since before surgery! Her personality is definitely starting to come back, though her vocal chords are still swollen from the breathing tube and she doesn't want to open her mouth because they had to suction her lungs a lot yesterday. She is very suspicious of the nurses now, but they have been stellar. She got her arterial line out today, and arm braces off (so she can move her arms freely again, yay!), and tomorrow hopefully her chest tube can come out! Yesterday it was clogged, so they had to do some yucky painful work on her to get it moving again, so she has to put up with it one more day, but once that's done she'll probably be able to get off her narcotics. Yesterday they also discontinued her IV painkillers so it's just as needed now, but the chest tube means she still needs morphine fairly regularly until that's gone. Enjoyed my last day with my husband here. She and I are both going to miss him a lot! Tomorrow he heads to the airport and I will officially move into the hospital room with Audrey. I have loved staying at the hospital family housing. What a wonderful place, very much like the smaller Ronald McDonald house I stayed at last summer for six weeks-- the residents become like family to one another. If only my whole family could be allowed to be here, but sadly we are too many to fit their rules! It's nice to know though, that the hospital is working on finding a way to accommodate larger families like ours in this sort of situation. I take back any angry and frustrated vents I may have earlier had about discrimination against large families. By far the majority of people have been amazed and just impressed, positively, about my family size. There is a really supportive and generous atmosphere here in Boston toward parents and children, and there are tons of family-friendly free activities in the city.

Extubated!

As of one hour ago, she is extubated!!!!! No more breathing machine! Just a gentle oxygen flow through a cannula on her nose to give her a little boost. They called us up for the event from downstairs where we were finishing lunch, and I was skipping in the lobby and telling anyone who'd listen, I was so happy I couldn't help it. The security guards all gave me blank looks, and I could care less!

Baby Steps

Audrey should go off paralytic drugs tomorrow if all continues to go this well! That means she will still be deep asleep and intubated (on the breathing machine), but will be able to shift her own body position to be more comfortable and scratch an itch, or wiggle her fingers and toes. Exciting baby steps!

Audrey's Esophageal Resection Surgery at Boston Children's

9 AM

Baby Audrey is in surgery right now. It started officially at 8:30 Eastern time and they have scheduled 6.5 hours for her, but of course will adapt as needed. Her right lung is adhered to the wall of her chest with scar tissue, that they will need to contend with when going in, so this will be a slow careful surgery. Yesterday we had a full morning of preop appointments and then went home for a nap and finished the day by taking Audrey to see the famous ducks (both real and bronze) at the Boston Public Gardens and a dinner at Faneuil Hall. She was very happy, even going into surgery this morning she was laughing at how silly I looked in the cap and gown as I carried her in to fall asleep. She fell asleep quickly. They let me kiss her without my mask before I left the room.

We spent as much time as we could playing with Audrey the first two days we were in Boston, between her pre-op appointments and naps.  She loved the dancing fountain near the New England Aquarium!

Meeting the ducks in Boston Public Garden

She was SO excited that she is just the right size to ride the mama duck!  Audrey has developed a major crush on ducks.  She says the word now, very clearly, and it's a riot to watch her go nuts whenever she sees one.  She just KNOWS she's going to succeed in her plan to catch one someday too, but somehow the real ones always get away.  These famous "Make Way for Ducklings" statues were the best because she could actually touch them.

Freshly bathed and all ready for surgery

She had a lot of fun with this toy in the pre-op waiting room

Her relaxation medicine made Audrey loopy, and my doctor getup looked so silly to Audrey that she actually giggled all the way into surgery.  They told us one parent could go with her into the OR, and my tender-hearted husband immediately delegated the task.  I actually loved getting to carry her in and stay with her while she fell asleep.  She laughed and grinned the whole way.  Seeing her that way was a great way to say good-bye for the next few days. 

10:30 AM

Dr Jennings just came out and talked to us. He found some tracheomalacia and some abnormal function in her vocal chords, both serious risk factors for respiratory trouble in her life. We will learn much more in the coming hours and days. This will be a day of many revelations.  So far we are keeping our chins up, this is a wonderful place and they are taking great care of all of us.

2 PM

To say that they are being very careful with Audrey is an understatement. She's been on the table for hours now, and they are just now making the first incision.  But on a funny note, they brought me a present--- the glass bead they fished out of her esophagus. You know, the kind you put in the bottom of vases? Yep, she found one and ate it apparently, must have been a couple of weeks ago. Cute, funny FAST baby!!! At least it wasn't something sharp!    That has been our crazy life recently, a non-stop "don't let her eat ANYTHING" and following her around everywhere like a hawk, sweeping and vacuuming and cleaning floors like madmen. Most of the time if she managed to get something, it would eventually come back up. That bead was too heavy though. I think it happened while the kids were "watching" her one afternoon while I was doing some paperwork. I had almost taken her into the ER last Sunday--actually left the house and got to the freeway, but she kept acting fine all that morning, and then coughing up spit, and then acting fine, and Justin kind of talked me out of it so I turned around and went to my neighborhood church for the last time in months instead. She's been fine all week since then, and I think the bead must have turned on its end so that it wasn't blocking her off. Crazy, crazy.

5:30pm

Just got another report.  Slow going, but smooth. They are comparing this surgery to a marathon.  9 hours and counting, and they'll be going for several more.  I didn't realize we were Dr. Jennings' only case today. Good thing, since initially we were told he had scheduled us for six hours. It will be interesting to see when this wraps up. They told us that the hard part is getting past the scar tissue, which makes sense now that we know more about how that works with the lung adhering to the chest wall because of her prior two "thoracotomy" (open chest) surgeries.  The actual removal of the bad section of her esophagus should be relatively very quick.

6:30pm

The stricture is out! Now to pull together the good sections.

8:00 pm

He's closing her up!!!!!!! In one hour Dr Jennings will come to talk to us about the surgery!

8:30 pm

Dr Jennings just came in!!!! Things went even better than expected! He's thinking just 2 or 3 days of paralysis instead of the 3-5 we were expecting!   In about 30 minutes we will get to see her!   He says her esophagus now looks wide open and beautiful! (Pizza, here we come!!!!)  And the pressure on her trachea was also improved, and looks much better. He will have an ENT evaluate her in a couple of weeks!

We've been through this part of the post-surgery before and know what to expect-- when we see her, she won't be able to respond to us (and we will be discouraged from trying to get any reaction or recognition out of her, because she needs to stay very still and calm, so any reaction from her at all will cause them to put her even deeper under).... but even so, getting to see her again will be wonderful!

10 pm

She was in the OR for approximately 12 hours, then it took them a couple of hours to finish prepping her for her bed and stuff, plus we had to be there two hours early, so a very long day, but she looks really well. We are tired but very happy.   

Safe In Boston

We are safe in Boston after a crazy travel day! Loving the sweet people here at the Yawkey Family Inn (similar to Ronald McDonald House, temporary low-rent in a shared home for families of patients). Thinking of all the things I did not get done but wanted to in the crazy days of this week.  Thank you also to my dear friend L for adopting my children for the ten days before Justin gets home, especially little G who has been having a lot of separation anxiety and tried to hug the computer screen tonight when he saw my face on the video call. I'll be home around Thanksgiving, I hope. I'm going to miss autumn in Utah, it's my favorite time of year. But I just keep reminding myself, despite everything, this is going to be a grand adventure.  There are some legendary things like New England autumns and fireflies that have been a part of my standing bucket list, you know? My heart races to think of all the adventures that could be had, and I hope Audrey does well so that she and the other kids can be able to enjoy many of them together with me. Today we got really excited following along the map from what we could see from the airplane, as we flew over Lake Michigan and many other major landmarks of our country, and one of the coolest things-- we saw both Niagara Falls (very recognizable by its bright white mist) and Palmyra from the air!!!!! I hope it works out to see those things up close, but a little part of me feels like I have truly lived, since I got to see them at least from that vantage point!!!  Especially going to enjoy sharing a few of the Boston sights with my husband for the days he is with Audrey and I.  He'll head home a couple of days after Wednesday's surgery.

Time to Get Creative

Reflecting still on the past week's events and formulating the plan ahead.  So much of what I experienced was free of cost--- my biggest costs were food (average prices were definitely higher, $8-15 for a lunch where I'm used to 5 or less, yikes! but I was able to make the budget stretch by carefully choosing healthy options and walking whenever possible), and some inavoidable costs like local transportation and airline surcharges for things like taking a single suitcase (which ironically is lost at the moment in their system and still not at our house due to the crazy delay at LaGuardia and a last minute switch of flight from Denver).  Now looking at needing to be there for three months, and hoping to bring out my kids once Audrey is discharged but needing to stay for two months, the thought is sobering.  We are about a third of the way to where we need to get with putting our money together from all known sources, and her surgery is in twenty days.  I am putting my trust in the Lord and just going to go forward with doing everything I can, and trust him to either make up the difference, or make the best way clear. 

It's time to think fundraising, and I am praying for ideas on how to start, this stuff is not my forte.  I don't know if there is enough time to put some of my ideas together, I wish we had a couple more weeks than the two we have, but it will have to be enough.  If you are interested in donating to Audrey, there is a link on the right side of this page.  Even a few dollars will help.  We will have an online auction in a few days, and planning a bake sale and benefit concert.  Details can be found by clicking on the fundraising link to the right of this page.

Our Busy Week in New England, and the Plan Ahead

July 22

Safe in Boston!

July 23

Thanks to wonderful church members in Boston we reached our destination, spent a comfortable night and made it to our (bright and early) flurry of appointments. Finding my way back to our host's home later miiiight be another story, hahah! The streets here began hundreds of years ago as hunting paths following deer tracks, and make little sense, but hopefully I can figure things out enough to manage! Spending most of our time so far this morning waiting for busy doctors, but everyone has been very kind and Audrey is getting a great nap in her stroller! Passed the grand marble entrance for Harvard Medical School and looking forward to feasting my eyes on all this gorgeous architecture!

July 24

Today I spent the afternoon with my old pals, Renoir, Monet, Van Gogh and Fragonard at the Boston Museum of Fine Arts during an adventurous day in Boston ahead of tomorrow's surgery for baby Audrey, and tomorrow many of our unknowns will come to a head when the docs take their first real look at her situation from inside her esophagus and decide whether to try cutting out some of her scar from the inside. Loved Skyping with my funny precious kids tonight.  

July 25

We learned so much today that apparently my brain was too full to remember the name of one of my favorite composers when I heard a favorite piece in the middle of the night (played by the other patient's family in our shared hospital room). What kind of day is it when I actually needed to GOOGLE Claude Debussy.... I don't think I will ever live it down to myself, hahahah! I love learning new things but it's not supposed to push out the other good stuff! We finally know what we need to do for Audrey, and the relief is huge. She is doing fantastic. They cut out a small portion of her scar today from the inside, but the picture shows clearly that her esophagus is a perfect candidate for a resection--the surgery where they go in through the chest wall and cut out the bad part of her esophagus, and then sew it back together. This is of course both good and bad news, but I feel confident that we are doing the right thing.  Dr Manfredi showed me exactly what is happening in her esophagus from a gastroenterologist's standpoint, and it was sobering.  Her swallowing and pooling in her esophagus is forcing the top end of her esophagus to distend and damaging her one area of healthy esophagus muscles.  She needs the resection surgery as soon as possible in order to save the good stuff she has, and the best news is there is plenty of give to work with--she should not require anything unusual to make the two ends fit together.  At least we know what we have to do, and I am confident that he is the best gastroenterologist in the country for her situation. Dr Manfredi will take over about two weeks after surgery and begin training her surgical scar prevent it from trying to grow over.  He is a lot like Dr Downey in the way he approaches medicine, and really won my trust with his balanced and conservative approach.  I wish there was a way Dr Downey could be there to assist with the resection, but the Boston surgeon Dr Jennings will surely do a great job. 

Spending tonight in the hospital for observation. We will head back to Utah some time in the next few days and return to Boston as soon as they can get her in for the surgery, probably mid August, when we will spend approximately a month in the hospital and then two months here as outpatients for followup therapy to train her scar to grow in the right way so that it no longer tries to close off her throat. We will try to do some fundraising while I'm home in order to make it possible for the family to come out for the outpatient portion of the treatment, and continue to find ways to do the best and healthiest thing for the entire family. Thank you for all of your love, prayers and support!

July 28

We have a surgery date for August 24, the start of three months of things she'll need out here. Saw a ton of Boston the past two days by foot and have become much more comfortable with the layout and how to get around by public trans-- I've definitely gone from discomfort to a genuine affection for this city already. Met up with my friend Tamara in Connecticut and will spend the rest of my stay with her family until I catch a flight home from New York City thanks to the charity Miracle Flights. Today I saw a house my family could rent for a few weeks in Westport, MA, but I still have a ways to go on being able to afford spending two months there with the children, but that remains our hope and dream. SO much to think about. I need help planning fundraisers in the first half of August. We will tailor our plans to fit whatever we are able to put together. Thank you again, everyone, for all of your love and support.

July 29

COMING HOME WEDNESDAY!!!!!

August 1

Home safe and snuggling my children at last, after a major delay on the Tarmac at LaGuardia turned this day into a very long one, but all's well that ends well. Thank you Boston and New York, see you again soon.

 

 

August 2

Organizing photographs and trying to work my way back into the groove at home.  Highlights of the trip: making new friends, seeing old friends, and lots of help from friendly strangers (especially helping with my stroller up and down stairs in the NYC subways). Lobster and blueberry pie with my new friends Amy and Rosa (this special homemade dinner was a gift from a lobsterman and his wife whose daughter had recently had surgery, for the families of patients at Boston Children's). Being serenaded by a street performer on the subway in Harlem. The DUKW tour of Boston, the cat-sized rat I narrowly avoided in Harlem station, a friendly stranger looking at Audrey and asking me, "But is she pink enough?", the helpful LDS bishop and his family in Boston and my friend's family in Connecticut and New York who helped me immensely in getting where I needed to go at the critical moment, an amazing day in NYC with my friend Tamara filled with a kaleidescope of incredible moments, walking with our strollers through a flock of pigeons in Central Park, buying takeout at the oldest restaurant in the United States and them really truly calling it CHOWDAH, Audrey waving hello to Mme Roulin in Van Gogh's painting La Berceuse, an Italian woman at McDonald's handing me my "Cinnamon-ah Melt-ahs" and me realizing my treat had just jumped a couple notches on the yum scale, New Yorkers every bit as friendly as I remembered, if not more so. Tamara and I following street signs pointing us toward the Holy Ghost and winding up finding a dairy serving Bliss ice cream, visiting the 9/11 memorial and learning about the Survivor Tree, amazing architecture in Boston down every. single. alleyway. Fresh blueberries the size of grapes. Flying above a surreal sea of white fluffy clouds at sunset. Fireflies in the forest at twilight.

I have to be an optimist, it's how I'm wired. The Children's Hospital experience was in tandem to everything else we experienced. I'm saving up the good memories to help us through the hard times. Audrey and I will just take each day at a time, and do our best to seize every one of them as our energy allows. I like to believe she'll have sweeter dreams because of the things she's seen.