Thursday, August 25, 2011

Bela's Story for PCH

A couple months ago St. Joe's and Phoenix Children's merged their Pediatric Heart Units. I know I'm way biased towards St. Joe's, but PCH just gained an amazing cardiology team. They are very lucky. I'm really excited about the merge, I think it will offer the patients the best of both worlds. They called us a couple weeks ago to do an article to help with their '100% for Children' campaign. I told them that I didn't know anything about PCH, but I will promote Dr. Nigro (bel's surgeon) until I die. So anyway.. I'm glad I was able to share her story again and sing my praises to her incredible doctors.
Here's the link: Bela's Story

Tuesday, August 23, 2011

My little man

My Bens started kindergarten... where has the time gone? I'm pretty sure I just had this little man.. Time is flying by. I have had 1000 different emotions the last couple weeks. I was really anticipating school starting because.. Summer here stinks. It's horrible. So I was excited for him to have something to do. But sending him those first few days were hard! So hard! I'd feel so anxious all day long. Knowing that he's with people and kids I don't know and learning and seeing who knows what and I wasn't right there to put little plugs into his ear all day long. I'm still having a hard time with that. But he's actually really having fun and loves to tell me all about his day. I love hearing all about his day. Like the stories about the girl in his class who is always naughty and gets in trouble all the time. And the PE teacher who is magic because he can throw a hula hoop out and then tells it to come back to him, and it does! And all the silly rhyming songs he's learning in music, the same songs I remember learning when I was in school. It's so fun to hear the stories and see his eyes light up.

I realized though that I'm really glad someone else is teaching him. Homework is already annoying because he dosn't like when I correct him and we usually both end up annoyed by the time it's done (all 5 minutes of it.) Does that happen with anyone else?

We sure do love you Bens. You are sweet, kind, and for the most part a very considerate little boy, and I hope you always stay that way.

The classic annoyed with all the pictures being taken picture. Seriously mom?!



Thursday, August 18, 2011

Donate Life!

Because of her



I decided to finally Donate Life, something I should've done a LONG time ago. In honor of Ruby Jane and my Bela.

Go to aniandmatttaylor.blogspot.com to register to become an organ donor and read about the amazing Ruby Jane.

HLHS

I've realized that I have strayed from my main goal of this blog. It is first and foremost to document Bela's extraordinary fight with her Congenital Heart Defect HLHS. It is to hopefully provide hope and help to others who are going through similar situations with their babies. I just got a comment from a mommy of a newborn baby girl with HLHS and Turners. I was so thrilled that she found my blog and that I will be able to connect with her! She said that seeing Bela is giving her hope. Hope is the best medicine there is!

Bela at Disneyland


I recently found a blog called The New Left Heart Kid (Thenewleftheartkid.blogspot.com) started by Carter's mom to give hope to others with HLHS. In her first post she wrote:

"No longer afraid of the journey itself, I've learned to accept things as they are, and embrace the beautiful gift we've been given. Along the way, I've learned a few things, but the most important lesson stands out above all - today kids with Hypoplastic Left Heart Syndrome can survive - and do amazing things!"

I couldn't agree more..

Thursday, August 11, 2011

She's a wild one with an angel's face




For the record... This is the screw that Bela decided to swallow one day a couple months ago. Actually, I'm pretty sure she just decided to suck on it for awhile, but fell down and it lodged in her throat, gagged and choked and scared me half to death before finally swallowing it. Many x-rays, days (5), and poopy diapers later, it finally came out.



A few days later, she decided to give herself a haircut. Good thing it resulted in an adorable short haired Bela, but she's wild all the same.


Oh Bela.. so glad you're mine!

The last little while in pictures


Got to be with my entire family while my parents were home!






My precious babies






Friday, April 8, 2011

Ruth Jane

On April 10th, Ruthie Jane was given a name and a blessing by her Daddy..





Our little sweetheart is privileged to be named after one of the most wonderful people that has ever lived. Ruth Jane (the first) is my Grandma. I absolutely love and admire her. When I was little I used to sleep over all the time. She would make me a bed on the pink velvet couch that was at the foot of her bed and turn on a music box that had lit up flowers that changed colors. She and I made doll houses and clothespin dolls together listening to hawaiian music. She was everything a grandma should be. She was beautiful and wise to me. As a mom, I respect her even more now for the mother, grandmother, and great-grandmother she is. What I love most about her is how selfless she is. She would do ANYTHING for any of us.
She hasn't been doing very well the last few months, she can barely get out a whisper anymore. The last time she was able to talk to me on the phone was in November, and the only thing she was able to say was a whispered "I love you". I could tell how much effort it took her to say those three words and it meant the world to me.

me and Grandma Ruth when I was 7 months pregnant with Ruthie

Friday, March 18, 2011

Ruthie

6 weeks already!



I have to resist the urge to eat her frequently.. She is so Yummy!!! She is filling out everyday and getting some good, kissable cheeks on her.. I LOVE this girl!


Birthday dinner at Grandma and Grandpa's

Horrible iphone pics, but they're still cute... All she kept saying she wanted for her birthday was a crown and pink cupcakes. :)


Heart Walk 2011

All 5 of us at the Heart walk.. the only picture I got...:(



We are so proud of our little 'heart hero' even though she refused to wear her heart hero shirt with a cape. Of course Benson loved his!

Monday, March 14, 2011

3

My sweet little girl,
enjoy these wonderful days being 3.


Wear your pink tutu all day long... why not? Twirl around and pretend you're a ballerina or a princess (or both).

You're 3 years old and perfect, and the years just keep going faster and faster, so please just stay this way as long as you can.


Dress up like a princess and ask your brother to dance with you, put on all your jewlery at once, do your make-up with mommy and ask me to paint your toes.


You are so precious to me. I can't believe you are 3 now... Birthdays are always happy and special, but yours are truly magical!

Thursday, February 10, 2011

2nd Annual Ethan's Run: Hope for Heart Defects

Ethan's Run is this Saturday!!

Details
Kids Zone (bigger and better) 2 jump houses, an inflatable game, rock wall, face painting, and cotton candy. Children 4 and older will be $5 this year and that includes both the Fun Run and unlimited Kids Zone. All CHD kids are free (just show us your zipper).
Pancake Breakfast $5 or $20 per family. It will be provided by a scouting organization and proceeds go to Ethan's Run
Fun Run is 1.3 miles. We encourage friends and family of heart warriors to band together to represent thier loved one.
10K is the same route as last year and chip timed!
1/2 Marathon goes through Las Sendas then out to McDowell road, around north east Mesa, and finishes back in Las Sendas. This 1/2M is also chip timed and in process of certification.

Please go to www.ethansrunaz.com or active.com to register and get more information.


A note from Ethan's mommy:
Please help spread the word and raise CHD awareness!
Sometimes I question myself for putting on this event b/c of the time it takes, not only my families part, but all the volunteers as well. Then I get word of another little precious CHD baby (Ella) who loses her life to a complex defect and I am reminded of the purpose, the cause, and my little Ethan. . . We are grateful we can put on this event. And THANK YOU to all those who make it possible!

Ruthie's first week

We got to the hospital early Thursday morning and it was FREEZING! Luckily we were at Gateway and had to walk all of 30 steps from the parking lot. I started pitocin at about 7 and Dr. Huish came and broke my waters at about 9 and things finally started rolling.
On our way

I was doing fine getting through contractions and the nurse came in to ask about an epidural at about 10:30. I told her I was fine for now, then the very next contraction about took my breath away. From one to the next they were all the sudden WAY more painful and coming every 2 minutes. So I said, nevermind, give it to me! It took about 30 minutes to get the anesthesiologist in there and ready.. They were coming every minute and he had to keep waiting for me to get though a contraction to give it to me.

For some reason the relief was not very immediate this time around.. It took a good 45 minutes to kick it, but I had a 'window' as they were calling it in my lower right side that I could still feel everything. They said it's rare, but can happen if the baby is laying in a certain way that blocks the medicine. So I was feeling everything in about a fourth of my uterus. It was much better than feeling it everywhere, but still so painful. They kept giving me boluses of the med and changing my position, but nothing was working. Finally about 2 hours later they gave me a shot of Fentanyl and it worked. I was so exhausted by this point and so drugged I was compleltey out of it. I got about a half and hour to rest when she said I was a 10 and ready to go. I seriously didn't want to do it, I didn't know if I could even push or even move my finger for that matter. They got me in position (with no help from me) and I started having horrible shaking. Dr. Huish came in and I was somehow able to push. I pushed though three contractions and she was out! It was the easiest delivery.

Those first moments seeing your new baby are amazing! It's so emotional and overwhelming. The whole time I'm laboring I'm wondering why in the world I keep doing this to myself. At one point I said I was never doing it again. Then she was in my arms and I would have done anything to have gotten her here, and every second of pregnancy and labor was all worth it.

We stayed that night and were so ready to come home the next day. Our nurse said she'd never discharged someone so fast.. she couldn't believe we wanted to go home so quick...the shorter the better with hospitals for us. The pediatrician checked Ruthie out and said she was perfectly healthy... and home we were.







She is very well loved and cuddled

Look who Ruthie makes look huge!!

Benson likes when she's awake and when she holds his hand. He holds her lots and always calls her Ruthie Jane. Bela just keeps asking where 'that baby' is all day. "Where's that baby mom?" She'll hold her for brief moments, but she mostly just wants to know where she is... I'm wondering when she won't be 'that baby' anymore. :)

She's been a breeze so far. Perfectly good, calm, and content. And INCREDIBLY sweet. I can't seem to ever want to put her down. I could nuzzle into her face and neck and stay there all day if I could. I love her faces, her tiny noises, her stretches, her smell, her eyes... I really LOVE the newborn stage. I think she's mostly her daddy.. she even has one dimple on her left cheek just like he does. :)