Avery - on the road to recovery...

Avery continues to have a lot of swelling and the usual balance of fluid levels after major surgery, so she will not be closed up until Wednesday. She has a very long road of recovery, but thanks to all of you and your support, wishes, prayers, she's well on her way. Here is the latest update my sister sent us Sunday night...

"No longer an only child..."
Hi everyone,
As promised - tonight's update is dedicated to Avery's donor - and in our minds and hearts - her new sibling - a child we love as if they were our own.
Yesterday - one of Avery's nurse's asked me "did you feel it"?
I asked her - "feel what?"...and she responded - "her heart - it is so strong beating inside of her"
Avery's heart is literally covered only by a thin bandage made out of plastic - so you can literally gently place your hand over it and feel her new heart "jump up and hit the palm of your hand" with each beat.
At first I thought - I have no intentions of putting my hand there -- but being the mom and insanely curious nurse that I am -- I did.
It was overwhelming on every level!
I could not help but think of the parents of Avery's donor - some how wishing I could hold their hand there too - so they could feel the life of their child inside of Avery.
We hope that one day - God willing - if the donor family wants to - that we are able to meet them...and even more so...that they are able to meet Avery and know her story! They will forever be part of our family.
It is inexplicable to even imagine what they have experienced and the void that losing their child will leave in their lives.
We pray that God gives them strength and that they somehow find peace in knowing what they and their child have done for Avery and our family.
The following is a song that my dear friend Julie heard the morning of Avery's transplant. I had never heard of it - so I looked up the lyrics.
I cannot think of words that could better capture what "We Wish" for Avery and her donor.

written by: Jeffrey Steele and Steve Robson
recorded by: Rascal Flatts

"My Wish"
I hope the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walking until you find the window,
If it's cold outside, show the world the warmth of your smile
But more than anything
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
and you never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
I hope you never look back, but you never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
And you always give more than you take.
More than anything
This is my wish...
~Cheryl and Mike xo

Avery will get a new heart - TODAY!

Beep... Beep... Beep!
(was the sound of the pager that alerted my sister and her husband at 2 am)...
Excerpted from Avery's carepage updates...
Good morning everyone! Avery's heart has been found. She went down to the operating room at 5:35 a.m. and we are told she will be there for most of the day. We got the call around 2 a.m. Her transplant cardiologist Dr. Betsy Blume told Cheryl it is "the perfect heart."
Her surgeon Dr. Francis Fynn-Thompson left his vacation on the Cape and drove here to the hospital around 4 a.m.
We don't have any information on the donor or where the heart came from... and we may never know.
Please say a prayer for Avery, her donor and their family today.
We will keep you posted once we have more information.
Thanks for all of your prayers, messages and support!
Mike, Cheryl, and Avery



These are Avery's most recent photos with her parents, in the hospital garden, enjoying some watermelon. To the left of her mom is the IV pole with her meds, and in front is the Berlin heart that has been keeping her alive and allowing her to build the strength she needed to receive a new heart.

I cannot thank you all enough for sharing this journey with us. Your prayers, good wishes and messages of support have made a huge difference for all of us. I will continue to share information as I know more.

Art therapy?

As some of you know, my sister Jes and I visited my niece (and sister, and brother in law) in Children's Hospital last weekend. As always, it is soooo good to see Avery when she is awake and alert and on the road to receiving the ultimate gift. Not to mention how good it is to be able to take my sister out for just a little while to give her some much-needed respite from the daily stress of caring for (and worrying about) Cutes.

During the visit, we spent a good deal of time in Avery's room, and I had time to take in all of the wonderful cards, letters and works of art created by her classmates and friends. Her walls and windows are a celebration of hope and color and creativity, and well, in the middle of it all... one big, black sorta scary painting of a shark.

During this visit, I also happened to be reading this book, which is a fictional novel based on the very real shootings by two students at Columbine High School in the 90s. So I look at the shark painting, for probably the fifth time that day, and I say to my sister Jesse, (somewhat jokingly), "they'd better keep an eye on this kid when they get older," and my sister responds, with a smirk "um, that would be YOUR NIECE!"

So, as you can see from this painting, which I was allowed to take with me, and which I now have hanging in my office to intimidate my colleagues, Cutes is definitely expressing her frustrations about having spent the better part of 2009 in a hospital bed.

Visualize world peace...

Just a little Photoshop fun. I took one of my recent paintings, and, using a series of filters (which I could never duplicate) this is what happened. Kinda far out and groovy, I think...

I have some exciting art opportunities in the works for the late summer & early fall, but details are still up in the air, so I will refrain from sharing the details for now.

Meanwhile, my niece Avery is back at Status 1A on the heart transplant list. She continues to be weaned from the ventilator and given extra high-calorie feeds to build up her strength. She is still sedated most of each day to give her body time to rest and heal from her most recent procedure (the Berlin heart). Now it's a bittersweet wait for a heart to become available.

Donate life...spread the word

(Maintaining a blog is so easy when you just lift your sister's entries...)Here's the latest about Cutes...

Hi everyone,
Avery had a good night and is having a good day as well.
Her Bi-VAD (Berlin Heart) is doing all the work it needs to. We started her back on some heparin last evening and will start on some aspirin and either plavix or persantine in a few days.
All of this will be to anticoagulate her blood toward preventing clot and fibrin formation in her Berlin Heart.
On occasion - (not infrequently) - the device needs to be "changed out" if clots or fibrin build up occurs. This would NOT require open heart surgery -they would only change out the "pump heads" which are all external - but they would likely do this in the OR if necessary since they removed Avery's mechanical aortic valve.
As for transplant - Avery is currently a "status 7 - inactive status" on the transplant list. This means we are in a temporary "holding pattern" for transplant in order to optimize her some more following her surgery on Monday.
This is very typical and we were told this would be the case following her surgery for a few days - a very temporary period of time.
Basically - if you are a status 1A and active - you need to be completely ready and prepared at any point a heart should become available to go to the OR. If you are not - then this delays precious time to notify other potential recipients - and this is precious time lost for all.
Avery will likely be re-activated by Friday - and she will return to an "active 1A status" -- thus -- keeping the hours" she has accrued on the list prior to going on "status 7/inactive" - so she starts reaccumulating time immediately.
As for how she is doing today -
She is much less "puffy" then she has been since her surgery on Monday - so the diuretics are doing a great job helping her kidneys to get rid of the extra fluid.
We are weaning slowly on her ventilator - which is great - given all the fluid she still has to lose.
Her nurse placed a feeding tube. We will probably start a very small amount of pedialyte to get her belly used to it and then start ramping up the high test calories in a few days.
Finally - we are planning to do a brief "wake up" test today to briefly see how she responds to us.
Dr. Fynn Thompson is very happy with how she has and continues to do.
As we continue on this journey - and hope, pray...and wait...we would like to ask all of you to spread the word about organ donation.
It is something that is rarely talked about - understandibly - not exactly "life of the party chit chat."
But organ donation is an underappreciated issue - especially when it comes to children donating to children! - despite hundreds of kids (and thousands of adults) whose lives can be saved each day.
If we have learned nothing else over these past 5+ years it is that life takes unexpected turns - and despite our best efforts - we have little control over much of it.
The best we can do - is take what we are faced with and do the best we can - hoping that even in the worst of times - we can somehow make a positive difference.
We will never understand why Avery has had to endure so much - but have full faith she will continue to inspire and teach us for many, many years and get back to her "childhood" - because mom and dad need a break before the adolescent years!
We also do not subscribe to the "every thing happens for a reason" gibberish - because no explanation in the world could make sense of what these kids go through.
But since we cannot change the "why's"...we can at least impact the "what and how" and all make a difference!
So today - tomorrow and whenever you have an eager ear to listen - spread the word about organ donation!
Check your drivers license, talk to your children (if they are old enough to understand

We underestimate what our kids can understand - and sometimes in a much clearer and simpler way.
You never know.... your message could save a life someday!!
xoxox
Cheryl and Mike

First steps...

(the latest excerpt)

Avery came out of the operating room at 11:30pm with her new "Bi-VAD.

Dr. Fynn-Thompson placed both a left and right VAD - so she now has her Berlin Heart pumping her complete pulmonary and cardiac output - another miracle that we have been blessed to receive!

She looks beautiful and is on A LOT of pain medication and sedation - so hopefully - she took our advice and is dreaming of her eventual trip to Disney World, pink elephants and ice cream -- and all other really fun thoughts!!

She has a team of MANY caring for her tonight - it is overwhelming and beyond extraordinary to see the dedication of so many - who stayed with her - WELL beyond their shift in the cardiac OR - led by Dr. Fynn-Thompson who is still here guarding over her and his amazing work!

Avery is stable thanks to the efforts of many and prayers of millions!!
We will send another update tomorrow - but I will end tonights update with the saying in a perfectly beautiful card that we read as Avery's surgical team wheeled her into her room (thanks Bets!! xo)

Only you can create your own path...

when you find it - and set foot on it

step boldly in the direction of what feels right

The first steps can be the hardest

New landscapes

can be astonishingly beautiful.

...Good night sweet beautiful "cutes"
We are ALL here with you - on your new path! xoxo
We love you "to the moon and back"

Cheryl and Mike

Bruchgefahr!

(excerpted from my sister's carepage website this weekend)

Saturday news...
Hi everyone,
Avery had a stable day on ecmo. Nothing new - which is good.
Her chest x-ray looked even a little better than yesterday - so keep the prayers for clear lungs with low pressures coming!!
She is still on schedule to receive her Left Ventricular Assist Device L-VAD) on Monday.
There is a huge black metal box in the hallway with the word "Bruchgefahr!"
in big red letters.
This means "handle with care" in German.
This box contains the artificial heart pump for Avery.
Of course to hear Mike exclaim this in his best German accent is a whole other experience :)
Mike - who vowed he would NEVER carry a beeper - now has his very own - courtesy of the transplant team! This way - we both can be reached anytime -
when the most important call we will ever receive - comes!
We went out for Chinese tonight and my fortune read:
"you will get what your heart desires"
We sure hope so!!
Keep praying!
Here is to a peaceful night with the exception of our phone ringing.
xoxox
Cheryl and Mike


Sunday news...
"From Hungary...to Ghana...to Avery..."

Hi everyone,
Another nice quiet day in the CICU with Avery.
Her chest x-ray is unchanged (which is good)
She is scheduled as "second case" tomorrow for the operating room - which means she probably will not go for surgery until about 12pm. Dr. Fynn Thompson said he wants to be fully available post operatively to monitor her - so this will free him up for the remainder of the day tomorrow.
She looks beautiful today and when I whispered in her ear and asked if she could hear us talking she knodded "no"....:)She is sporting a princess bun with a big pink bow that says "Bruchgefahr"! all over it in hot pink marker with fancy hearts :))
We will keep you posted.
In the meantime - I have placed a couple of links about Avery's surgeon Dr. Fynn Thompson for you to learn a little more about this amazing man.
http://abcnews.go.com/GMA/story?id=5487217&page=1
http://childrensinghana.typepad.com/childrens_hospital_boston/profile-1.html
xoxo
Cheryl and Mike

The latest news about Avery's progress...

"Good Friday"....
(excerpted from my sister's carepage website)

Note: The photo is Avery enjoying the ocean last summer.

Hi everyone,

Avery's chest x-ray this morning had more fluid - so she went to the cath lab today to help decrease her left atrial (upper chamber) pressure that can be causing some of her high lung pressures and fluid (backup)in her lungs.

Dr. Lock dilated the stent between the atria (2 upper chambers) from 7mm up to 10mm.

Our hope is that we can further work on clearing out her lungs over the weekend to place them in the best state possible for her L-VAD (Berlin Heart)on Monday.

Her chest x-ray tonight already looks improved so keep those prayers coming!

Also - as of 2:22pm today - she was officially "Listed" with the UNOS (United Network of Organ Sharing) for a new heart.

She is classified as a status 1a within Region 9 (New England). This includes Ma, RI, NH, Maine, CT, Vt.

Status priority goes from 1A (first priority) to 1B and 2.

As long as Avery is actively listed - she will always be a 1A based on ecmo - or the Berlin Heart.

Children's Hospital is the only pediatric transplant center within the 6 New England states - so she is top priority for this area. While we are not allowed to know who - if anyone - is on the list "before her" - since we have been in the cardiac ICU for months -in the only center that does transplants - we are pretty sure she is in a good spot:)for our region.

Since Avery is O+ - she can only receive a heart from an O+ donor.
This places her at a slight disadvantage if there is a heart that is A, B or AB - HOWEVER -
O+ is the most common blood type - so this balances out her compatibility quotient.

Also - because she can ONLY receive an O+ heart -
if she were waiting among others of the same status (1A) and an O heart became available - she would receive it first- pending the size was appropriate - because she cannot receive any other type.

She can also receive a heart up to a 2,000 mile radius - if she is higher priority than others on the list based on her being on ecmo - or soon to be - the Berlin heart.

As for her right now-

She looks beautiful and is sleeping comfortably.
She was almost wide awake when she came back from the cath lab today - which is somewhat frowned upon - when you are on ecmo - since you do not want to move the cannulas (the tubes in her leg).

She was trying to sit up and put her legs over the bed.
We quickly sedated her and made sure she was comfortable - but not before Dr. Lock stopped in to check on her.
She pointed at him and pointed to the door - basically - throwing him out of the room.

His response:
"It's good to see she still has her senses" :))

Dr. Lock also very kindly offered Mike and I Red Sox/ Yankees tickets for Wed and/or Thursday night.

This was prior to Avery going on to ecmo this week- but such a kind gesture!
We told him we would take a rain check - but thanked him for thinking of us.

(editors note: the "we" in "we told him" was Cheryl)

So - with that said - we will say good night and ask to continue the prayers
"Clear lungs with low pressure" !!

Thank you all xxoxoxox
Cheryl and Mike
"Team Supergirl"

A New Chapter...

This is a reprint written by Avery's parents, from the carepage website they maintain to keep us all informed...

(and the photos are from a trip last year to the Vineyard. Avery loves to play make-believe, and one of her favorite characters is a bossy, but charming waittress, pictured here.)

Hi everyone,
It has been a very long day and we have plenty of news to share with you.
(This will be a long update, but we hope you have a better understanding of everything by the end of it)
First of all, Avery is back on ECMO bypass. She is ok and will be on it for several days.

How did she get there?
As Cheryl mentioned last night, Avery has been very fragile and weak lately and hasn't been getting better.
Late this morning she took a turn for the worse.
As she was sitting in bed, she went into heart failure. Her nurse Lauren hit the code alert button and the ICU team went into action.
One of the doctors immediately started CPR - and it worked.
In fact, Avery woke up during the compressions and actually tried to push the doctor away.
Once she was stable the decision was made to put her back on bypass. Not so much because it was necessary at that very moment, but because she was certainly going to have another episode again soon - so why risk it?
She is stabile and her heart and lungs are getting the support they need right now.

So what's next?
That's why we're calling this update "A New Chapter."
To make a very long story short, Avery will soon be on the list to get a heart transplant.
After nearly two-and-a-half months of struggling with her coronary arteries, Avery's heart simply can't go any further.
In many ways, it's been a miracle to get five-plus years out of the heart she was born with. We are forever grateful to Dr. Delnido and everyone here at Children's for getting her this far.
When she had her biventricular repair back in December, her coronary arteries were removed and put back as part of the procedure.
They have not been the same since, which came as a surprise to all of us because this had never happened before to any of the other biventricular repair patients.
When she had her first coronary episode on March 22 it was simply the first sign of things to come.
Her condition improved - so much in fact that she was about a day or two away from going home.
That's when the second episode hit and, looking back, she's never fully recovered from it.
Add that to the fact that they will surely keep happening and the decision became very clear - it's time for a new plan.
A heart transplant is her best and only option at this point.

So what does that mean?
It's a complicated process, but here's what we're expecting to happen.
Avery will be on ECMO into next week.
From there she will be taken to the operating room (exact day not decided yet) and she will be connected to a VAD (Ventricular Assist Device)
The VAD, which they call a "Berlin heart" (that's where it's made, in Germany) is a portable mechanical device that essentially will do the work for her heart and allow her to rehabilitate until a donor heart is found.

How long will it take to find a donor heart?
Here's how her surgeon Dr. Delnido answered that one:
"I've seen it take as little as six hours and as long as a year-and-a-half."
The bottom line - Avery will be here in the hospital for a very long time.
So, while she waits for a new heart, this "Berlin heart" will basically buy us some time. Kids who have been on it in the past (about 20 here at Children's Hospital in the last five years) have been able to come off the respirator, work out with physical therapy, eat, drink, and some have even been able to ride a bike.
So how long do they think she'll be in the hospital?
It's impossible to guess at this point, but of course, we asked.
Because Avery's condition is so fragile she will be moved to the top of the waiting list once she is formally on it (she has to wait for a small infection to go away in a day or two before she can offically enter the list)
We have been told that for a child in her condition the average wait is about two-to-six months.
They will need to find a heart that has the same blood type as Avery (O positive) and one that is about the same size.
When they find a heart that matches, she'll have the surgery.
So, if they find a heart quickly, she will have a long recovery time afterwards, because she will not have had time to build up strength before the surgery.
If it takes a long time to find a match, her recovery time after the surgery would likely be shorter because she would be in better shape for the surgery.

How are you all doing to this point?
It's a lot to digest - but we're getting near the end.
Once Avery gets a new heart, another whole new chapter will begin that will surely have ups and downs that we can't begin to think about right now.
None of this will be easy - it will be a very, very long road.

Please keep the prayers and support coming!
They've helped us get this far - and we are all very grateful!
As always - Thank You!
Mike, Cheryl and Avery

Better news than yesterday...

Save - 10 x 10 acrylic & mixed media on canvas

Which isn't difficult!
Avery's cath doctor - Dr. Locke, admitted he'd painted "a pretty black picture" yesterday. Gee, do ya think?
Anyway, After several hours back in the cath lab today, he put 5 stents in various arteries and reports
that they are working as he had hoped. They even took her off the Echmo bypass to see how it was working
and they were pleased. She is back on Echmo for several days to let her heart rest & gradually work on its
own. All of her other arteries are clear and look good.

In the meantime, the big question is why she keeps clotting (while on blood thinners), so that's what her team
will be focusing on in the coming days.

I want to thank you all again and again for listening, praying, and just generally being there for Avery and Cheryl and Mike and my family. I count you all among my blessings every day.

Aunt Kerri

Sweet and strong...

After a somewhat sudden, though not entirely unexpected turn of events, my niece Avery will be undergoing her fifth open heart surgery either Wednesday or Thursday of this week, to replace her aortic valve and continue to correct a congenital heart defect.

I am asking my blog readers to send all of your positive thoughts, good wishes and prayers her way. This strong, feisty four-year-old is my biggest hero and these recent pics don't begin to capture her enormous personality