"Mom, Dad, 3 Kids & a Gingerbread Boy" Matty's Wish Trip December 10-18, 2009

[pacrosby]

Oh my goodness, I am just speechless. I just stumbled upon your PTR and now your TR tonight, and I've been reading and crying for the last hour or so. I could not believe my eyes when I read your first posts...
My brother and SIL had a stillborn baby girl with Hypoplastic Left Heart Syndrome. They too found out at their 20 week ultrasound (their first child/pregnancy), this was in August 2006. She, too, had in-utero surgery. They were offered the choice of Boston Children's or right here at the Cleveland Clinic. Though the Clinic had only done a few, they really wanted to be here. So they chose that. I believe she was the 3rd here in Cleveland and the 30th ever to have it? I don't know if those are exactly right, but they seem to be and fit with the timeframe from when you had your surgery. She had the surgery at 21 1/2 weeks and I believe that was the earliest ever done. Anyways, the surgery seemed to be a "success" so to speak-as you have explained, we all knew what lay ahead. We were thrilled!! The ultrasound the next day showed better flow than even all those wonderful docs were expecting.
Sadly, that night, when they did the doppler before SIL went to sleep for the night, there was no heartbeat. Our dear Natalia Faith was lost. Our phone rang at midnight and it was just so devastating. They decided to induce labor in the AM and left the epidural in place. They warned it would be a slow labor - they couldn't use a lot of pitocin or do a C-section because there were multiple punctures in her uterus. They attempted the surgery without opening up SIL first, unsuccessfully, then had to open her up. They didn't want to risk damaging her uterus for future pregnancies (she was only 27 at the time). Well, they were right. 3 long days of labor, not painful physically, but oh my goodness what they went through. Words cannot even say. Natalia Faith was delivered on Sept. 12, 2006. The hospital had a photographer come in and they got some wonderful family photos. She was laid to rest a few days later in a local cemetery and is always in our hearts. We have a pink rose on the table at every family meal/holiday to remember her. Natalia now has a sister, Gianna Faith, who is 2 and perfectly healthy. Visits her sister often.
The strangest part of all this - when Natalia was delivered, she had a huge knot in her umblical cord. They think that really caused her death. They really think the surgery was a "success", however the movement they needed to do may have either caused or worsened the knot. We'll never know. My DB and DSIL had agreed to be in a study for all this and for results to be published, but due to the odd circumstances that followed, their case is not in the journals, etc. They did not want an autopsy and that was the only way to know for sure.

I'm sorry to be so long and take over your thread. I just wanted to let you know how much Matty's story has touched me. I particularly loved seeing the photos of him through the years, the tears were flowing freely. I am so grateful for the wonderful doctors and scientists that help miracles happen!!

I am so thrilled to hear of his trip and will continue reading, it sounds just so wonderful so far!!!!

A very Happy Birthday and Happy New Year, Matty!!! You and your family have been in my prayers for a long time before I ever knew your name or your specific story. I am so glad to have names and faces to add to my prayers!!

No apologies necessary Sandy. I am honored that you chose to share your family's story with me. And heart broken too. You're not the only one crying.

I actually know two people personally (a co-worker and, coincidentally enough (?), one of Matty's swimming teachers) who have lost children to HLHS. And online, well, let's just I've 'met' many more. Too many. The grief must be unimaginable. I do realize how very lucky we are to have my Matty, and I count my blessings every day. I'm so happy to hear your brother and his wife were able to go on and have a healthy child. Though, I know nothing/no one will ever 'replace' their precious Natalia, the presence of an angel on earth most certainly must help ease the pain somewhat. Please offer them my prayers for health, hope and happiness in the years to come. And, thank you.

Pamela

 

[jenb1023]

I am finally DISing after a bit of a hiatus and am loving your TR! I found you through Maroo (who I also had the pleasure of meeting in person). What a great story and great TR so far! Great job on the autograph books and I love that Matty got to walk in the GKTW parade. It seems like such an amazing place - I would love to visit and/or volunteer there some day. Looking forward to reading more! Happy New Year and happy belated birthday Matty!

 

[pacrosby]

Happy Birthday Matty!

HAPPY BIRTHDAY MATTY!!!!

Happy Birthday Matty!!

Thanx for the birthday wishes!!!!! I cannot believe he is actually 7!!!

Pamela

 

[pacrosby]

What an awesome surprise for the kids! I would have totally been freaked out as a kid, but it seems like yours loved it!

How funny that you say you would have been freaked out!!!!!! Memories of some traumatizing childhood experience perhaps??????????

Pamela

 

[pacrosby]

That was totally sweet! I can't wait to see the video, will def watch the next time I'm at Gram's. What a wonderful day for Matty and the family..I can't wait to see what else is in store!

Thanx Amanda!! I've been alittle unsure about including the videos, wondering if it's alittle overkill. It's nice to know people are actually looking forward to watching them and enjoying them when they do. I watched your videos of Piper on Christmas morning (I'm not sure I posted, but I did watch). They were so sweet

I am finally DISing after a bit of a hiatus and am loving your TR! I found you through Maroo (who I also had the pleasure of meeting in person). What a great story and great TR so far! Great job on the autograph books and I love that Matty got to walk in the GKTW parade. It seems like such an amazing place - I would love to visit and/or volunteer there some day. Looking forward to reading more! Happy New Year and happy belated birthday Matty!

Welcome aboard. I've been on a bit of a hiatus of my own the last couple of days (after keeping a frenetic pace for the previous week) but hope to get going again soon. This is like a full-time job!!!

Pamela

 

[sandym718]

So amazing that I was just reading this the other day. And last night my brother called. After almost 2 years of infertility after having Gianna and a few unsuccessful rounds of IUI, they tried IVF, and are now expecting again!!! She's only 5 weeks. They go on 1/14 for an ultrasound to see how many- 2 embryos implanted.

it's just amazing because they have been on my mind so much since reading Matty's story!!

Looking forward to hearing about the rest of the trip!

 

[jessica52877]

I finally caught up! I LOVE the videos! Wow! to the parade! That is just wonderful! I am so glad he got to walk in with Murphy! And then the tuck in service! Even better! GKTW is just wonderful!!!!!

 

[maroo]

Pamela -

The TR is just amazing! LOVED the videos and all of the pics.

I keep lurking and thinking I need to really post a long set of comments...but I keep not having time to stop and I just HAD to tell you that I am loving it!

I am Matty's biggest fan and I hope that you guys are having an awesome weekend!

 

[pacrosby]

So amazing that I was just reading this the other day. And last night my brother called. After almost 2 years of infertility after having Gianna and a few unsuccessful rounds of IUI, they tried IVF, and are now expecting again!!! She's only 5 weeks. They go on 1/14 for an ultrasound to see how many- 2 embryos implanted.

it's just amazing because they have been on my mind so much since reading Matty's story!!

Looking forward to hearing about the rest of the trip!

What wonderful news!!!! I'll be thinking good thoughts for them

Pamela

 

[pacrosby]

Pamela -

The TR is just amazing! LOVED the videos and all of the pics.

I keep lurking and thinking I need to really post a long set of comments...but I keep not having time to stop and I just HAD to tell you that I am loving it!

I am Matty's biggest fan and I hope that you guys are having an awesome weekend!

Hey you! Hadn't 'heard' from you in a while and were hoping you were ok. Matty was just popping over my shoulder and when he saw your picture (in your signature line) he said "hey, I know her" LOL. We have had a very busy weekend (visiting the hospital and then my parents on Friday/shopping and a light festival on Saturday/and the movie "Cloudy With a Chance of Meatballs", the viewing of a christmas display, and finally a 4D MOM of The Polar Express today) but I'm really looking forward to getting back to my story

Pamela

 

[pacrosby]

I hope everyone had a restful and/or exciting New Year's weekend (depending on how you and your family prefer to play it)!! It's been pretty snowy here the last couple of days. Saturday we went to a light festival (they seemed to keep alot of the holiday stuff going until today around here) that included riding outdoor carnival rides in snowy windy 25 degree weather!!!!!!!! I figured alot of you warm weather fans would freak out about that hahahahaha Us hardy New Englanders......WE know how to have fun don't we!!!

Anyway................................

I just wanted to get off track for a short bit and share Matty's birthday tradition with you all. We started it last year and hope to continue it, well, for as long as we can................maybe even expand on it in the years to come. Matty, as most reading here now know, spent many (too many) days/weeks (which when you add them all up turn into months) as an infant/toddler in the Children's Hospital in Boston. And while it's been years and years I still remember those days vividly; the days/weeks following each open heart surgery; him in my arms with lines and tubes and whatnot sticking out here, there and everywhere; wondering what the future would hold. I had never even met an older child with HLHS - everyone I met online or in the hospital seemed to have babies or toddlers - so while I certainly still had hopes and dreams for some sort of normal, happy future, the uncertainties were too numerous to count. What I wanted so badly back in those days, even needed, was some 'evidence' that some sort of normal existance would indeed be possible for this little boy of mine; some LIVING, BREATHING evidence that children actually did live happily and healthfully with this HLHS. I've never forgotten how frightening that time was for us. And last year, as Matty's birthday approached, I found myself reflecting again on those days. For some reason though, last year it suddenly occured to me that there were probably alot of other Mom's and Dad's sitting in the hospital, right then, having those same emotions and wishing they had such 'evidence' too. And that is when I we came up with our idea.

Within days the whole family had gone out in search of stuffed animals (last year we got snowmen, this year we did teddy bears), enough stuffed animals for each of the children on the cardiac unit at Boston Children's Hospital. We put each one of them in it's own bag. Also, in the bag, was a letter from Matty. On Matty's birthday, New Years Day, we drove in to Boston and took all of our bags up to 8 East (the cardiac floor at BCH). As a plus there are still some of the same nurses there who worked back in 2003/4/5 and they do remember us. They were thrilled to be a part of our day. Last year Matty was able to personally deliver the bags to each one of the families in the individual rooms. This was wonderful as it allowed us to meet their children and talk with the them, a very very touching experience. This year, however, because of the H1N1 craziness, we were unfortunately required to leave the bags/letters with a nurse. She then took them upstairs and passed them out herself. Fortunately it was a nurse who knew us/Matty (my husband is actually her insurance man now ) so she, I'm sure, spent time talking to each of the families, giving them some background on our family and Matty's personal story.

Here is a copy of the letter we included in the bag:

We laughed about how we should have scouted out for some stuffed gingerbread men to give to the children this year but it was too late in the season and things, unfortunately, were pretty picked over. Next year for sure It's nice to be able to give back a little.

Pamela

 

[yinyanggirls]

Pamela, that letter is a tear-jerker. Can't you give a girl a break!? What a great idea to give the newer HLS kids/parents hope.

 

[pacrosby]

ok....................and away we gooooo!

With visions of ginormous gingerbread men still dancing in everyone's head the alarms go off and it's time to wake up, get out of those beds, and start yet another wonderful day!! My plans initially were to be at the park by opening but after such a loooong day on Thursday, a little extra sleep is well-deserved. As a result we are not all up and atom until 8:30 or so. Weather-wise it's alittle chilly but clearer and no rain, a major improvement over the previous day's weather. So we quickly pull ourselves together and head out the door for breakfast. As we stop for a quick picture by our ORANGE villa (that was for Melissa):

we notice that there is no need to hop into the van after all. Why????? Because it appears we will have alternate transportation this morning:

The kids are thrilled and promptly run up to hop aboard:

The boys are each given a special hat and Matty and Nicholas are even allowed to ride up front with the conductor:

After a quick ride through the Village we arrive at our stop. No sooner have we gotten off the train when a volunteer rushes up to inform us that, if we hurry, we can catch Curious George and the Man with the Yellow Hat in the Castle of Miracles! Sadly we had left our autograph books in the villa (even had a page for that little monkey and his mentor) but we are all still excited for the opportunity for a photo op!


Here's the initial meet:

and then the 'pose' (the Yellow Hat Man kept tickling Nicky):

Then over to the Gingerbread House for breakfast:

Now initially, when I was in the midst of planning our trip, I had thought we might mix it up alittle for breakfast - sometimes going to the Ice Cream Parlor (where I had read they served omelets!!!), sometimes having the breakfast cart deliver to the villa, maybe even some days making breakfast ourselves. But THOSE breakfasts at the Gingerbread House......I have got to tell you!! They are so wonderful that they have us coming back for more every single day!!! Scrambled eggs, hash browned potatos, bacon, sausage, cold cereals, yogurt, pancakes, watermelon, cantalope, apples, bananas, strawberries, waffles, breakfast pastries.....................you name it!! Now I generally skip breakfast (I know, I know, tsk tsk tsk) but at GKTW,every single day, I LOAD up and eat like a swine!! Guess it goes to show...................it's not so much that I'm not hungry in the morning..................I'm just pretty darn LAZY

Anyway, a fabulous filling breakfast is had by all. And, had by all while in the company of.....................Chrissi and her family!!!! They are already there when we arrive but we find a table adjacent to theirs that allows for idle chatter while we fill our faces. We had missed Chrissi at the Xmas party (she had been at the orientation) so it is the first time that she and I actually meet. After meeting her family that previous night though it es hard to imagine that she will be anything other than kind, warm and easy to talk to.............and I turn out to be right.

Next Up: It's Seussville or Bust!!

Pamela

Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607

Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

 

[yinyanggirls]

Oh, geez, ORANGE???? Really? Okay, well, in your pics I think the blue/purple one is possibly worse. They are actually very whimsical, but I just thought it was funny that you both wanted one so badly. Love the train! Especially the ramp I see in the photo. It's those details that remind me what we have to look forward to!

 

[pacrosby]

They are actually very whimsical

You got itThat is EXACTLY why I (and probably Matty) wanted it so badly!!!! Just one more of those things that would set this trip apart. I mean.....when will we ever stay in something that looks like THAT again????????

Pamela

 

[pipersmom]

It's so wonderful that you all have that tradition on Matty's birthday every year, Pamela, I'm sure it makes a huge difference to those families! The letter you send with the bags is just perfect

Loved the update..the train looks like so much fun for the kids! I'm totally jealous you got to meet Chrissi, and the breakfast sounds wonderful..yummmmm. I've already promised Piper ice cream for breakfast one day..she's very excited about that! I'm having so much fun reading along..can't wait for the next update

 

[4hunters]

First I must say hello from NC!

Reading your TR has brought back so many happy memories! We were at GKTW in 2007 with MAW. I loved looking through your pictures and hearing all the things they did for you to make is such a special trip.

I can't wait to hear more!

 

[sandym718]

LOVE your birthday tradition, what a fabulous way to help others! I know if my Natalia had survived, my brother and SIL would've loved to hear from families with older children with HLHS.

That train is so cool!!! Looooove Curious George, how fabulous!

 

[pacrosby]

It's so wonderful that you all have that tradition on Matty's birthday every year, Pamela, I'm sure it makes a huge difference to those families! The letter you send with the bags is just perfect

Loved the update..the train looks like so much fun for the kids! I'm totally jealous you got to meet Chrissi, and the breakfast sounds wonderful..yummmmm. I've already promised Piper ice cream for breakfast one day..she's very excited about that! I'm having so much fun reading along..can't wait for the next update

I can't read that letter without crying alittle myself..................and I've read it a million times I can only hope it gives some families some degree of comfort............some hope that bright days may actually lay ahead. We specifically added the info under the signature in to show people how normal a life might truly be possible.

It WAS so great to meet Chrissi. I'm hoping she gets back onto the DIS....she's pretty much been MIA since we've come back. Of course with everything, the holidays and her makeover, I'm sure life is very busy. Her Alyssa is such a sweetie.

First I must say hello from NC!

Reading your TR has brought back so many happy memories! We were at GKTW in 2007 with MAW. I loved looking through your pictures and hearing all the things they did for you to make is such a special trip.

I can't wait to hear more!

Hey, welcome aboard I can imagine that in years to come I will come back and feel similarly about the new TR's.

LOVE your birthday tradition, what a fabulous way to help others! I know if my Natalia had survived, my brother and SIL would've loved to hear from families with older children with HLHS.

That train is so cool!!! Looooove Curious George, how fabulous!

That Curious George was adorable. I'm as much a s@cker for the characters as the kids

Pamela

 

[pipersmom]

I have Chrissi on facebook, and my understanding is they're still actually unpacking the pods that everything was stored in for the makeover! I can't wait for her to get back so we can see all the piccies, but she seems super busy right now!