Commitment

This word has brought on a whole new meaning to me this year by the CVICU team and several of Moriah's Doctors at chla. I feel like Justin has always been the perfect example of being a committed husband, which consists of him trying to do his absolute best to be there to love and serve me, even when he doesn't feel like it (and I can say that he has shown this to me after ten years of dating and four years of marriage).
But I think I only really thought about about the meaning of this word after experiencing it through this journey with Moriah. It is one thing to hear when someone says they are committed to you, but it brings it to a whole other level when you actually get to see and experience it.
I would like to mention that before Moriah ever came up to LPCH, there were several Doctors who took very close care of her, specifically Dr. Friedlich, Dr. Keefer, and Dr. Takao. Even when things were unknown with Moriah's heart, and she was denied further surgery at chla, these Doctors rallied behind Moriah and our family, and did everything they could to get us up here. It is easy to see who're the ones who believe the best in your daughter, regardless of what the odds are against her. And now, her heart is fully repaired.
As Moriah continues to be a mystery, not with her heart anymore, but with her infection, we have a new team who has told us they are committed to our daughter. First, Dr. Hanley told us, and then Dr. Shin, and then Dr. Roth told us they aren't going to give up. Topped off with endless measures by Jana, Derek, the other Doctors, and our Nurses, to keep up with Moriah's information, and advocate in whatever way needed,...they have shown us their commitment, and I must say, have set the bar very high.
It's obvious that Moriah keeps fighting so it's only perfect that she has a team that reciprocates her strong will and determination!
I honor these people who have put the time, effort, energy, and compassion into the care for our daughter. It is really nice to feel committed to, and I feel very blessed to have them in our lives =) ...

On another note, I am slowly getting better. I've been in bed for most of the day except when I had to drive my husband to the airport. I cried again =(. But moriah has been recovering well and I can't wait to see her tomorrow. In addition, I have a friend who is flying across the country tomorrow from Indiana to be with me and moriah. Amber is mom to another heart baby, Grace, and is truly an inspiration to me. You can check out their blog, What's New With the Baker Family? under our blog roll.

Will keep you updated and post pictures tomorrow.
Love
Victoria

Moriah Meets Her Other Half, Vivian

Uncle Vince, Auntie Hannah, and their sweet, precious Vivian, came to say good-bye to us yesterday. This was also the first time that Moriah was able to meet Vivian, her other half. I know so many of you already know that Hannah and I call the girls two peas in a pod because they are similar in so many ways - not only do they share similar medical experiences like having heart surgeries performed by Dr. Hanley as well as the diagnosis of CHARGE syndrome, but they share such a love for life, laughing, smiling, playing, and loving everyone they meet.
Yesterday, the girls wore their I Heart Dr. Hanley t-shirts (well, we taped Moriah's to her since she can only wear button-up clothes because of her lines), and we let them look at each other for the first time. While they're too young to know it yet, Vivian and Moriah are going to be by each other's side, taking everyone and everything on - TOGETHER. Each other's "other half," two peas in a pod. A bond that only they could share after all that they have been through. We love you girls so much, Vivian and Moriah. You make us all so proud!

Miss Vivian in performance mode, making everyone laugh

Uncle Vince, Auntie Hannah, and Vivian with Moriah


Can you tell they both love their feet? =)


A special moment that Hannah and I have waited for since forever!
The four of us on this journey together...

Moriah's 1st Birthday Party

Moriah's nurses put on the most amazing Birthday party for Moriah yesterday. Justin and I didn't do anything except show up for it with Moriah, and we were blown away by what we saw. They really went ABOVE AND BEYOND our expectations, and we couldn't put into words what it meant to us. It was the most perfect Birthday party. A day that we will ALWAYS remember.

We wheeled into the 2nd floor conference room, and this is what we saw!

The theme was 1st Birthday Princess

There were yummy cakes, cupcakes, appetizers

and of course, a bedpan filled with ice for the drinks


Moriah was overwhelmed when she entered the room and saw everyone

She laughed which turned into crying, then more laughing, then talking, then raspberries for everyone!


There was lots of eating, mingling, and everyone enjoying their time with one another




Moriah was ready to fall asleep in my lap so we quickly took the opportunity to let her get in a touch of her first Birthday cake!

Looks like she's a frosting girl ;-)


Aunt Sarah, Uncle Alex, Nano, and Maji made it in perfect time for the party

Our BELOVED Nurses and Doctors all came to love on our Peanut, and made this such a special day for us

Top L to R: Dr. Shin, Dr. Long, Nurse Sarah, Dr. Obayashi, Nurse Nicole, Nurse Christina
Bottom L to R: Nurse Practitioner Jana, Justin, Victoria, Birthday Girl, Nurse Jackie

L to R: Nurse Nicole, Nurse Jackie, Case Manager Lupe, Nurse Robin, RT Dave

CVICU Director and our current Attending Doctor, Dr Roth
Even Dr. Hanley took some time to celebrate with us. He's such a nice guy! ;-)


Happy 1st Birthday our dearest Moriah. Daddy and I love you so so very much!

"He's Such a NICE Guy"

This is usually what we say every single time when Dr. Hanley leaves after talking with us. No matter how busy the man is, he's always made us feel as if we're his only patients. Taking as much time as needed to talk with us and answer our many questions. Warm, compassionate, and caring. He's such a nice guy =)...

"We Will Get Her Through This..."

Well, this morning we went from hearing she doesn't need open heart surgery, just an extensive bronchoscopy to she needs open heart surgery, it might be today, to, and this is the final verdict since it came from Dr. Hanley himself, that she will have open heart surgery next week.

After talking to Dr. Hanley just now, he said that he will have to go back in and work on the right upper lobe so that it can re-open. He said that he remembers from surgery that that area is really crowded because she has a lot of little arteries, and that he needs to re-adjust them so that they do not compress her lung. It's not going to be as major as her last surgery, and she won't need to be on a heart-lung bypass machine.
And as for the lower left lobe, he thinks that could be addressed in a heart catheterization, and that they can just open up the vessel by placing a balloon in there. But this could probably wait a couple months.

Dr. Hanley's final words were "we will get her through this. it's just going to take some time..."

Right now Moriah is on a paralytic and is completely out of it so that she doesn't bear down and activate anymore bleeding from the knicked blood vessel, which occured during the heart cath yesterday.

All I can say is that we're hanging in there. I definitely have my moments where it all seems like it's too much, and it's never-ending. But, overall, we're doing okay. Again, I know who is the ultimate surgeon. I know who is ultimately in control. I know who has her in the palm of His hands. And knowing that gives me the most peace, and the most comfort that I could ever have in this situation.

I Heart Dr, Hanley

Our family friend, Katie, had these made for us. Moriah's t-shirt says I Heart Dr. Hanley, and mine and Justin's say Team Moriah. Since Moriah can't wear anything yet, we taped her shirt to the end of her crib, and we've already gotten lots of comments about it. Everyone LOVES it!! Thank you Katie!

A Miracle

So if you're skeptical if miracles exist, we just witnessed one here in Palo Alto. Dr. Hanley just came out 10 minutes ago and let us know that he was able to do a complete repair on our little girls heart. He tied up the collaterals, filled the hole, and put in a valve that was a donated human valve. Her sats are at 100 for the first time in her little life. We will give you more details later, but wanted to let everyone know.

Moriah's heart has been healed!!

Praise our good and gracious God!! Jesus, you alone deserve the praise.

Much Love,

The Nelson Family