Such a Big Miracle in Such a Little Girl! and Anniversary Celebration *Updated 3/19

[blueangel2]

Welcome to my first ever pre-trip report! I apologize now if I make any mistakes in the makings of this report.

OUR DATES: May 4th thru May 11th 2014

Where: Art of Animation: Finding Nemo Suites

Thank you so much for joining me on this journey. So a bit of history in the title: This trip has been about 5 years in the making. My dd was born Jan '09 and in March '09 we discovered she had a congenial heart defect that required open heart surgery in order to repair. The day she went into the hospital we were unsure if she would make it thru the night. My baby spent 4 weeks in the Pediatric Cardiology ICU at both Children's Hospital of Orange County (CHOC) and Loma Linda Children's Hospital before having her operation. I spent many lonely days/nights talking to my baby girl. I talked to her about everything, including wanting to take her to see WDW. She was so weak during that time that the doctors were questioning whether or not she would be strong enough to survive being put on a pacemaker. The day of her surgery I told her that when she woke up we would one day take her to that happy place. So here we are nearly 5 years later and I am keeping my promise to see the world. It will also be my parents' 35th Anniversary, but more to come on that. This is my baby girl in the baby swing on her hospital bed.

So skipping ahead...My dh and I decided we wanted a trip to the World before she starts Kindergarten. My dd will turn 5 in Jan. In May, it'll be 5 years from her life saving heart surgery, so that's when we are going.

A bit of Disney History: I grew up in Southern California so my family visited DL once every few years. I enjoyed the park whenever we had the opportunity to go. When I met my husband he was a Disney CM and was able to get me into the parks with him several times a year...thats when I started my love affair with disney. We got APs after he stopped working for disney. My dh and I got a chance to visit WDW in 2008. When dd turned a year old we renewed our APs and started visiting the park at least once a month up until I gave birth to my ds 1 year ago.

So here are the Cast of Characters for this trip:

This is Me: Nina the Mom, DH Terry, and my beautiful dd and the reason for this entire trip Kaylie. This picture was taken in Cars Land on our last trip to DL.

Next up:

My mother: Susan and my co-organizer of this trip. This is her first ever visit to WDW. My mother also fell in love with DL when she got her AP and came with us as often as she could. This picture was taken a few weeks before my ds was born.

Mr. Grumpy

My Dad Nick...my dad is not a fan of disney, but he will do anything for his grandchildren, including spending a week in hot, crowded lines that he hates. This picture was taken during a charity walk for the hospital.

And last but not least:

My ds: Brayden...this will be his first ever trip to Disney. We hope to instill our love of disney into him during this trip

 

[blueangel2]

Resort and ADR Plans
CHOC WALK
Kaylie's Story: My Heart Baby
Another Reason to Celebrate: 35 Years!!
The Celebrations Continue!
Planning, Planning and More Planning
Day 1
Movie Night Countdown
Day 2
Day 3
The Outfits
A Princess Tea Party
Day 4
Day 5
Tinkerbell Magic & Poems from Tink
Day 6
Day 7
Revised - day 7
Last Day
Reminiscing of Days gone by: Part 1 Part 2 Part 3 Part 4 Part 5
Peter Pan Movie Night
Yard Sale!!
FP + Plans
Completed and Fabulous Tinkerbell Poems
Cars Movie Night and Frozen M&G!

 

[blueangel2]

When we started planning this trip over a year ago we fell in love with the Art of Animation Resort. The theme of the resort is just the sort of "disney magical" experience that we are looking to give our children.

We booked a family suite for the 6 of us. I plan on giving my parents the bedroom while my dh and I share the living quarters with the kids. The mini fridge and microwave are an added bonus.

Planning the ADRs wasn't quite as easy. My dh and I had only been to WDW the one time, so we are unfamiliar with the restaurants. We knew that we wanted sit down restaurants that will also somewhat entertain the kids while we eat. My mom and I poured over books and website reviews until we came up with a list restaurants that we felt would work out well for entertainment, as well as restaurants that reflect our taste in food. We have some very picky eaters in our group (my dh and Dad).

We are not big breakfast eaters either, but we are earlier risers. Our plan is to order groceries (breakfast, snacks, water and diapers) to be delivered to the resort. We will have the kids eat breakfast in room and we will grab a bagel or toast before getting to the parks for Rope Drop. Our only planned breakfast will be at CRT...only because my father would not eat anything on the lunch or dinner menu

So the final ADR list came down to Teppan Edo, CRT, Liberty Tree Tavern, Chef Mickey's, Sanaa, and Ohana. I called on our 180 day mark and was able to get each and every reservation that I wanted. Now I hope I will be able to make a BOG Fp+ reservation for lunch...then my culinary aspirations would be complete.

 

[blueangel2]

Just another reason to love Disney.
The CHOC "Walk in the Park" is a one-of-a-kind 5K walk at the Disneyland Resort that is held annually. This Walk is a time when we get to express our thanks to the doctors and nurses that cared for our children, and we get to share our memories with other families.

This is a walk that my family and friends have participated in every year since my dd was a patient at CHOC. One of our goals is to raise money to bring awareness to the thousands of families who have babies born with CHD (Congenial Heart Defects.) Most parents do not realize their newborn has a CHD until their baby ends up in the hospital, or in most cases, their child passes away.

This experience is really emotional, and it is some thing that we will continue to do for many years. We are Team Kaylie and here are some pictures from our walks.


This is at the beginning of the walk. The walk starts about 2hrs before the parks open and we stroll through DL and DCA. Thousands of people turn out for the event.


A lot of teams wear t-shirts and/or carry signs in either honor or in memory of a child that had care at Children's Hospital of Orange County.


My team has t-shirts for Team Kaylie with a picture of her.


There are a lot of amazing photo opportunities on the walk.


We wanted a picture of her near a CHOC sign.


This was her first experience with characters...she fell in love and wouldn't let him go. Another great and unique experience are the characters that we get to meet on the walk. As the crowd spread out there are many chance for the kids to cuddle up to characters with out any wait.


My dad and dd with Sully and Boo...if you recall from the first post, I had a similar picture. Only it was 2 years later at the same walk.


The 2009 Team Kaylie.

 

[KatMark]

Nina, I saw your post on FB and am joining in.

What a beautiful family and thank you CHOC for saving that beautiful daughter of yours.

We will miss you on our May trip, but I look forward to reading along as your plans progress.

 

[MeeskaMomma]

Going in I saw your th post in the may group. We will be there in the cars suites around the same time! (May 6-11) .

Such an amazing story so far. What a trooper your little girl is! Look forward to more.

 

[blessedmom4]

Another heart Mom here. I just wanted to say hi. Your pics look so familiar and your children are precious.

​

 

[alan_renfroe]

Hi Nina! I saw your post on FB and I've subscribed...can't wait to follow along! I've got a pre-trip report to if you'd like to follow. Here is the link: http://www.disboards.com/showthread.php?t=3206911

 

[lsenquiz]

Following along. We are also going in May for Star Wars weekends. So far I have not started a PTR for that trip but I do have one going for our September 2014 trip.

 

[cogero]

joining in.

 

[blueangel2]

Thank you everyone for joining our amazing journey

 

[anniebabymu]

Hi Nina Ran across your PTR and I can't wait to see all the fun you and your angels have in store! Love the ADR choices and you will love Art of Animation! We stayed in the Little Mermaid rooms on our first trip there and fell in love with the resort!

 

[blueangel2]

Kaylie is a Heart Baby. Her story began in January 2009. I had a completely normal pregnancy and she was born full term at 5 lbs 4 oz, 18 inches long. She was tiny, but healthy, or so we thought.
Newborn Picture

At her 2 month check up, the pediatrician discovered a heart murmur. She got us an appointment for May 2nd with a cardiologist. The dr. was only conserned that she hadn't heard it at her newborn check up.

At 3mths old, my maternity leave was up and I had to return to work.

This picture was taken the morning of my first day back to work. My mom had decided to take a vacation day, and kept her on my first day back. I returned to work on April 21, two weeks before her scheduled apt.

Half way through my first day back to work I got a phone call that changed my entire life. My mom was on her way to the hospital because the baby stopped breathing during a diaper change. I met my mom at the ER and they brought her in and after learning of the murmur they took chest xrays. Meanwhile the waiting room was filling up with friends and family. The ER doctor came in and told me something was wrong with her heart, but they were unequipped to deal with pediatric cardiology. She was transferred to Children's Hospital of Orange County (CHOC). Once there we were sat down and told they were running many tests. Her heart was enlarged twice the size it should have been and they discovered a pea sized hole in it. If she made it through the night, they would put her on a respirator to control her oxygen levels. She was in full blown Cardiac Arrest. First day at CHOC.

Those amazing doctors saved her life. She was at CHOC for a week before she was released. We had an amazing support system. CHOC was about an hours drive from our home, but there was always someone there with us each day.
Kaylie with her Grammy (my Mom)
Papa watching over her (my Dad)
After her release she was home for 1 day before returning to the ER with blood in her stool. This time we went to Loma Linda Children's Hospital. We met her cardiologist during this visit. They determined that her enlarged heart was pushing aside her other organs. They were going to keep her until her surgery. It was 2 1/2 weeks until her surgery.

Her surgeon was Dr. Lenard Bailey, quite possible the best of the best as far as pediatric cardiology surgeons go. He was the Doc that performed the first ever baboon to human heart surgery. Unfortunately, during surgery, Kaylie had a mild stroke. It left her with partial paralysis on her left side for several months. Luckily, because her brain wasn't fully developed yet and with physical therapy, she is now completely functional on both sides. They also had to insert a second chest tube when her lungs collapsed the next day.

This was taken about 3 hours after surgery. The ICU nurse put the bow in her hair as surprise.

After 4 days of recovery she was released home. The day we brought her home. She had to be in a lot of pain, only tylenol for babies, yet she was still smiling.

 

[alan_renfroe]

Wow, what an amazing miracle Kaylie is! A sweet angel! Thanks for sharing her story!

 

[blueangel2]

On our first full day of our trip May 5th, my parents will be celebrating their 35th wedding anniversary

Going back...My dd's condition was discovered at the end of April '09. My parents were celebrating the 30th anniversary on May 5th. They had an Alaskan cruise booked. My mom started planning this about few years before and was so excited for it to come. 14 day Land and Sea. For months she poured over brochures and websites. Every time I called her up we ended up talking about the upcoming trip. We were 2 weeks away from departure day when Kaylie was admitted to the hospital.

With out any hesitation or reservation, they canceled their trip.

And if that wasn't enough, after learning that she would be in the hospital for a month, they offered to allow us to move in to their spare rooms so that I could take a leave of absence and not worry about how to pay for rent. They rearranged their home and their lives so that my dh, dd, me, my dog and cat, could stay with them and they could help me. When dd came home she needed around the clock medication and care. I was able to take 6 months off to tend to her recovery...all because of my parents.

This past summer they finally went on their cruise and had a marvelous time

When we planned our WDW trip my mom didn't even realize we had planned it during her anniversary week. I'm keeping my mouth closed that I remember it, that way I will be able to surprise them.

My dilemma: because of medical bills, $$ is very tight, we do not have much left over to spend on expensive extras so I had to really look around to come up with some nice surprises for them. My dad is not a Disney fan, so he would not really be impressed with anything Disney themed. They are not wine or champagne drinkers. They could care less about flowers. We are sharing a room, so room service wouldn't work. I also thought about treating them to Albert and Victoria, but I couldn't figure a way to bring nice clothes with out them being suspicious.

So what I came up with: 1st hoping for a little pixie dust from CMs at ADRs and Resorts 2nd we will pick up the anniversary buttons. 3rd we are eating at Teppan Edo on their anniversary night. I can have a really nice specialty cake made for them personalized with their anniversary colors to be delivered during dinner and 4th I'm going to surprise them with the Wishes Tomorrow Land Dessert Party (already paid for).

I would love to do more, but I'm at a loss. We do not have much experience in wdw. Neither of them would be interested in a tour. Disney Floral and Gifts were way out of price range, and not of any interest to either of them.

 

[KatMark]

Such an amazing story and what a beautiful girl. This is going to be a great trip. Congratulations to your parents on their 35th; Mark and I celebrated our 30th at Disney this past August. I love the idea of the dessert party. I've heard pros/cons on the specialized cake and have never ordered one so I cannot help on that end. What about just sending them off for a dinner just for the two of them? It doesn't have to be Victoria & Albert's where they need to dress us. There are several "nice" signature restaurants that you do not have to dress up for. Mark and I had our "special" dinner at the Yachtsman Steakhouse.

 

[blueangel2]

Such an amazing story and what a beautiful girl. This is going to be a great trip. Congratulations to your parents on their 35th; Mark and I celebrated our 30th at Disney this past August. I love the idea of the dessert party. I've heard pros/cons on the specialized cake and have never ordered one so I cannot help on that end. What about just sending them off for a dinner just for the two of them? It doesn't have to be Victoria & Albert's where they need to dress us. There are several "nice" signature restaurants that you do not have to dress up for. Mark and I had our "special" dinner at the Yachtsman Steakhouse.

I didn't know about the Steakhouse. Thank you for this suggestion I will definitely look into it. We have a day where we do not have any ADRs planned in the evening. That might be a good night for them to celebrate.

 

[blueangel2]

So lets recap what we are celebrating:
Personal Triumph: 5 years since a life saving heart surgery on a 4 month old baby

Wedding Anniversary: 35 years of wedded bliss which resulted in two wonderful children happily married that will both be celebrating 8 years this year. And two beautiful grandchildren

First Time Visits: This will be my DS first ever visit to any Disney theme park, and it is the first visit to WDW for my parents and dd. This is also my dd and ds's first plane trip

Could we possibly have more to celebrate...WHY YES!!
My dh's birthday is the last day of our trip. He will turn 34! And it is Mother's Day!

Did we plan it this way on purpose...no. We chose one of the best weeks of the year based on easywdw.com and worked around my mom's work schedule (she's a school employee and has to be there the last week of school). We just got lucky!

Up next: my thoughts on all this planning and a day by day of our tentative plans.

 

[KatMark]

You have lots to celebrate:

You'll need: Anniversary Pins, 1st Visit Pins, Birthday Pin and "I'm Celebrating" pins.

We went to the Yachtsman Steakhouse (it's in the Yacht Club Resort) for the first time with our best friends (who we met here on the DIS) December 2012 for my hubby's 60th birthday. We've been back twice since and will be there again in September. We LOVE it and I think it would be perfect for your parents.

 

[blueangel2]

You have lots to celebrate:

You'll need: Anniversary Pins, 1st Visit Pins, Birthday Pin and "I'm Celebrating" pins.

And I pan on getting them all