CVICU Presentation

Today's presentation about the CVICU went well!

It was a beautiful setting at the Allied Arts Guild in Menlo Park, and the audience consisted of members from the Lucile Salter Packard Society. It was a beautiful, loving group of people, to say the least.

Justin and I were so humbled to be invited to share Moriah's story, and the HOPE that the CVICU offered us.

It was a story from the heart.

This is the only picture that I have from the event.
It is with Dr. Roth, the Medical Director of the CVICU.
However, they are sending me more photos, and I will be sure to post them as soon as I receive them.


Thank you CVICU.
Thank you LSPS.

Much love,
The Nelson Family

Headed in the Right Direction

Yesterday, Moriah had her cardiology appointment with Dr. Gail Wright (who , many of you know, is an Intensivist in the CVICU, but she was so kind to accept Moriah as an outpatient).

In case you're wondering how this all works now that we are at CRC, it looks a little like this...

The Diva

has to be transported by ambulance

and is also accompanied by Nurse Poonam from CRC.

(this is during Moriah's echo)

That morning, Daddy parted with his hat so that Moriah could have something to play with on her busy day.

If you couldn't tell already, we are a hat-wearing family

And we finally had the pleasure of seeing our Doctors, Dr. Wright and Dr. Martin, as an outpatient for the first time. Dr. Wright told us the good news that Moriah's high rv pressures are headed in the right direction, and she was so impressed with how far Moriah has come. In addition, Gail and Mary Jo were so happy with the fact that I couldn't list all of Moriah's medications anymore, and that my focus now is enjoying my happy, little girl. I guess they were proud of how far I have come too ;-)


We continue to put one foot in front of the other...it's all about the baby steps!


Thanks for checking in on us.
Lots of love,
Victoria

Just So You Know We're Still Here

Been busy working on a presentation that Justin and I are going to do with Dr. Roth for the CVICU at an LPCH Foundation event(pray for us on Wednesday!).

Justin has been getting over a cold.

My parents came to town for Thanksgiving, and took care of Moriah for several days while I worked on the presentation, lounged around, and did some errands here and there.

Haven't quite snapped out of my "lounging."

Heart has been heavy about Moriah. Not exactly sure why. Praying about it.

Been really wanting to pursue a Home Ventilator Program in the area. Praying about this too.

Cardiology appointment tomorrow with Dr. Wright. It will be the first time going back to LPCH as an outpatient.

Hope you all had a wonderful Thanksgiving.

Much love,
Victoria

P.S. A big thank you to the Williams family for taking care of our first month's rent at our new apartment. It's amazing (and humbling) to see how we're being taken care of while we're still trying to get our feet on the ground. There aren't enough words to express how thankful we are...

Basic Math

If you have two negatives, then you get a positive.
I think this is one of the longest times I've gone in between posts. There has been a lot going on this past week, both good and bad.

Negative- Moriah had been fighting a trach infection since last Monday

Negative- The lab gave the wrong values for Moriah's CRP and White Count, which suggested everything was normal - WRONG!
Positive+ Virginia caught the problem, and so they were able to finally put her on the appropriate antibiotics once seeing the correct numbers. M is now feeling much better.

Negative- Justin didn't get the job that he interviewed for. =(
Negative- We found out that we have not been receiving our mail, and that there has been some mix-up that we can't figure out. So sorry if you have sent us something and it's sent back to you! We feel terrible.
Positive+ I was treated to breakfast by my blog friend, Adrienne and her two children Rachel and Caleb. Having gone through a similar situation with her own daughter, Rebecca, Adrienne has been a true prayer warrior for me during this time.


Negative- Moriah's picc line most likely has a clot at the end of it, and no one can draw blood from it.
Negative- She's had to endure being poked many times on several days this past week to try and get a good sample. The problem here is that it's very difficult to find a good vein, and her blood will clot almost immediately.

Holding Moriah down for her blood draw
Positive+ I met up with several moms in the area who also have children with Charge Syndrome. Hannah came up with the name B.A.S.I.C. for us. It stands for Bay Area Sisters in CHARGE. How cute is that?

We met at Pluto's at Santana Row. From L to R: Lacey, Victoria 2, Hannah, Victoria 3 (me), Tanya, and Victoria 1 - I have never been to lunch with so many Victoria's in my life!

Lacey got all of us these beautiful lockets, and engraved inside it says "A Reminder to Never Forget Who's in Charge." There is room to a small picture of our kiddos.

And just because I am not a total Debbie Downer (wok whaaa), I'm going to end this last paragraph with TWO positives. I was never very good at math anyway ;-)

Negative- Moriah had an evaluation for a program that provides therapy for children with developmental disabilities. On her evaluation, Moriah's development scored as low as 1 month of age in a couple areas (gross motor skills being one of them). Also, her communication skills were inconclusive because of Moriah's inability to hear. The process to get her hearing properly evaluated and fitted for hearing aids is very slooooow, thus delaying the progress she could be making in this area.
Positive+ Baba and Baca stayed with us this weekend! And our family friend, Teri Pollit, came to drop off beautiful flowers and house-warming gifts for Justin and I (we will move in early-mid December).



Positive+ We have a very happy, very beautiful girl who we are so proud of!

I Can't Get It Out of My Head

Sigh.

You can guess what Moriah has been watching lately. Please don't get me started on Mr. Noodle. =)

We Found A Place To Live

We found a place to live... and it's right next to Moriah!

We are so excited.

Now we just need a job for Justin =)
(still waiting to hear back about the last interview)

Anyway, we continue to pray and trust that God will provide.

I'm just ecstatic thinking about the prospect of settling down. At some point in the beginning of December we will need to take a couple days to go to L.A. to get our stuff from storage, and then drive a UHaul to bring it up here.

CRC has gotten to know Moriah so well now that I don't mind leaving her alone (but my mom has promised to come up and be with her when we do this).

Just thought I'd share the good news!

Love,
Victoria
*my packing/unpacking song. enjoy =)

Getting To Know You Quiz

I came across this quiz from Oprah. com
Thought it would be fun to do on the blog for people to get to know us a little better.
I (Victoria) will start.

Who was your favorite celebrity as a child?
Oh that's easy. Jonathon Taylor Thomas or Zach from Saved by the Bell. A little boy crazy, was I?
What type of pets do you have?
One kitty cat, Max, who my parents are taking care of for the time being.
What is your favorite color?
It changes all the time. Depends on what time of year it is, the season, what looks good with my tan or lack thereof, etc.
What is most memorable about your high school years?
Hmm...I have a lot of great memories. My freshman year history group (this included making one of the funniest, most ridiculous "history" videos incorporating Backstreet Boy songs and all), my girlfriends, our friend Warren who is the funniest guy ever...and of course, Justin, who sat behind me in our 10th grade Biology class.
What word describes you best?
Caring. Okay. I have to add one more because only people who know me really well also know that I can be quite quirky.
What is your greatest accomplishment?
Moriah, and forcing myself to take in all the lessons from the past two years, whether I felt like it or not. I did have many a pity party, but for the most part, I feel like I really grew from this experience.
What drives you every day?
God. My family.
What is your favorite food?
Hands down. Malaysian. Then, Indian. Justin always teases me and says that I have curry in my blood.
Where do you want to retire?
I don't know. I can't think that far ahead anymore. Somewhere tropical I guess.
What is your business goal this year?
Okay, so I have lots of ideas. First, I wanted to invent wireless heart monitors. Then I heard that that is already being done. Then I wanted to create a hamper on wheels because I was so tired of carrying the laundry around. Yahood it. This has been done too. Now I have to think of something else! =)
But all jokes aside, my focus is on being Moriah's mom.
Gasp!
That's it?
Yep.
"That's it". It's a full-time job.
Where do you like to vacation?
Malaysia and England - where both sides of my family live. I used to alternate between these two places growing up. My mom would send my brother and I every summer to live with our grandmothers and aunts and uncles there. Even though I didn't appreciate it then, these experiences turned out to be the best part of my childhood.
Who do you admire?
My husband. He inspires me to be a better person.
What is your mission?
Matthew 22:37-39
37Jesus replied: " 'Love the Lord your God with all your heart and with all your soul and with all your mind.' 38This is the first and greatest commandment. 39And the second is like it: 'Love your neighbor as yourself.'
If you were invisible, where would you go?
Why would I want to be invisible? I would just go...wherever it is that I'd want to go.
What traits in others are you attracted to?
Humor. Kindness. You know...everything that my husband embodies.
What is the kindest thing anyone has done for you?
Wow. Too hard to name just one. During this time, we have been extremely humbled by the kindness people have shown us. From prayers to meals to gifts...we've had a lot of kind things done for us.
How do you want to be remembered?
Proverbs of the Noble Wife comes to mind =)
What would you do with a million dollars?
Give it to research for Tet PA MAPCA hearts. Support LPCH's CVICU, CRC, Ronald McDonald House, Hopeful Hearts...and I'd throw a house in there for ourselves
If you were on an island, who would you want to be with? Why?
Obvious answer. Justin. He's the love of my life. Plus, he'd be good to have around to do all the hard stuff like climb the trees to pick the coconuts, cut the branches to make our home, hunt for food...
You have a 10 minute speech to give at a high school, what is it about?
Oh geez. I still don't feel like I'm in any place to teach yet. I'm still doing a lot of learning and "taking in" in my life. I could easily say I'd speak about congenital heart defects or something like that since I've been through so much of it now. But if I had to choose something, it would probably be about focusing on character - doing your best to have integrity, being kind, rising above unpleasant situations with people...and trying to make wise, careful choices to be a person of noble character...all of which can only be done through God's grace.

And now Justin's turn.
Who was your favorite celebrity as a child?
Michael Jackson.
What type of pets do you have?
Max. (didn't know Max was a type of pet, babe)
What is your favorite color?
Blue.
What is most memorable about your high school years?
Met my future wife.
What word describes you best?
Content.
What is your greatest accomplishment?
There's a couple different things. My walk with God. My relationship with my wife. And my daughter.
What drives you every day?
God.
What is your favorite food?
Malaysian. (Looks like someone else has curry in their blood too).
Where do you want to retire?
Somewhere on the ocean.
What is your business goal this year?
To provide for my family.
Where do you like to vacation?
Belize
Who do you admire?
Victoria. She is everything I'm not.
What is your mission?
Love God. Love others.
If you were invisible, where would you go?
If I was invisible? What kind of question is that?
What traits in others are you attracted to?
Being humble and selfless.
What is the kindest thing anyone has done for you?
Victoria carrying my child for nine months
How do you want to be remembered?
For loving Jesus
What would you do with a million dollars?
Buy my wife a house
If you were on an island, who would you want to be with? Why?
It's a given. My two girls.
You have a 10 minute speech to give at a high school, what is it about?
God and family.

Okay, now it's your turn! Use the comment box to answer a few (or all) the questions so that we can know a few random things about you! =)

One year ago today

One year ago today, I was in tears handing over my little baby to the Doctor.

One year ago today, we waited 12 1/2 very long, heart-wrenching hours for her surgery to finish.

One year ago today, Dr. Hanley came out to tell us that Moriah's heart was completely repaired, and that her saturation levels were 100, just like yours and mine.

One year ago today, we witnessed a miracle.



Thank you Jesus.

New Moves

With a lot of help from PT Scott, Moriah will be getting stronger and doing these moves on her own in no time!



(oh my goodness that girl has one big mullet going on...and her Daddy won't let me cut it)

Can't you just smell these beautiful roses through the computer screen? I met my heart friends, Patricia, her mom, and her twin boys, Jason and Grayson, for a quick cup of coffee this morning. We met them while at LPCH as Grayson was born with HLHS. Fortunately, he is doing really well and doesn't need surgery for several years. Yay!
These roses are from Patricia's garden, and seriously, they are the most beautifully-scented roses that I've ever received. I never let Justin buy me flowers (can't bare the thought of spending money on something that will be thrown away in a week) so these were a real treat, especially since I knew these were from her garden. Thank you Patricia!


And I'm praying for this guy tomorrow morning at 9am. He has an interview for a job that seems like it would be ideal for him and our family. Will let you all know what comes of it.


Otherwise, we are doing well.
Lots of love,
Victoria

Hope

We came in yesterday to Photographer Liz taking pics of Moriah. LPCH has a magazine titled Hope, and they are including Moriah in an article about the care for kids with chronic illnesses.

From CRC was Marla and Dr. Silva, and from LPCH was Dr. Frankel and Devon

These are our friends, the Nguyen Family, whose son, Henri, was in the CVICU with Moriah for many, many months. These two have been through so much together, and are coincidentally neighbors once again. Both Henri and Moriah are included in the article with Dr. Frankel. I can't wait to get my hands on this story when it comes out! =)

Last but not least, we have RT Richard, who took care of Moriah since she was 9 months old. We had Rich the first week we checked Moriah into LPCH, and I remember how well he handled us, very stressed, tired parents. Rich works both at LPCH and at CRC, and as you can see, Moriah looooves him.


Thank you for checking in on our crazy family.
Thank you for having Hope.


Matthew 19:26
"Jesus looked at them intently and said, “Humanly speaking, it is impossible. But with God everything is possible.”

Transition

Hey all,

I thought I would just give a quick update as to how we are doing.

M continues to make strides each and everyday, which is amazing to watch. We know we made the right decision to come here.

Justin still continues with the job search.

Because of the beautiful, generous Chez Family, this time from Adam's Mom, Marsha, we have one more month of housing, up until Dec. 15th.

We are so thankful for these blessings.

I think that I am having a bit of a "let-down" right now after everything. Everything that I have seen, and everything that I continue to see...it's hard to sort it all out in my mind, and I'm kind of struggling with the whole fairness/why questions. I've also been thinking a lot about the tools and knowledge that we have learned during this time, and I'm wondering what God wants us to do with them.
I know He will show us.
Ha. I think I need to learn how to just breathe.
I've been too accustomed to hyperventilating for the past year. ;-)

Will continue to keep you all posted.
Love,
Victoria

Danny Ties

A BIG thank-you to Jim Leckie for sending us a bunch of his very own Danny Ties. This is a father who created them because his son, Danny, had a trach. He found, firsthand, the importance of having a good trach tie!

I had the pleasure of meeting this family at CHLA back when Moriah was an itty bitty in the NICU. I remember being inspired by their story. Little did I know that one day we would be using the product that this family created!

"I recently began manufacturing and sales of my new tracheostomy ties in order to provide patients a better alternative for their trach care. The product is superior to all products on the market currently and all that have used my "Danny Ties" love them. This product was developed with the assistance of my son's trach nurse at Children's Hospital Los Angeles. They are currently using "Danny Ties" and love them. This was developed because my son came home from the hospital with a trach and on a ventilator and had a lot of problems with skin brakedown due to his ties. This product is my effort to give something back for all those that helped save my son's life." - James Leckie Summary from LinkedIn

I highly recommend them to anyone who has a child with a trach. They are the most comfortable, secure ties around, and they are so easy on the skin.
You can order some here from their website.

Thanks again Leckie Family!

Halloween Fun 2010

We consider this your "first Halloween" since last year, you were too sick to have any fun, and it was the day before you began your year-long admission.
This time around, things were way better. =)

We began the day with decorating pumpkins. I don't know what your Daddy and I created, but it looked pretty awful. Hopefully, you will be more artistic than we are.

By the time everyone was done, there were lots of cute little pumpkins sitting around

But I must say, you were the cutest...even though you did not like your outfit. Look at that face you are giving me Moriah. It's not that bad.

This is your wonderful Doctor, Dr. Silva, whose beard you were trying to pull.

And many of your Nurses and RT's dressed up for fun too.

This was your first time trick-or-treating and you were too busy chewing on your bag to hand it over.

We decided to end the day with a quick stroll outside.

Your Nano and Maji couldn't get enough of you.

By this time, you were beyond exhausted. It was a long day filled with excitement. Not bad for your "first" Halloween. Maybe next year, you can pick out your own costume =)

Then A Date It Is

While they did this

Maji, Moriah, and Nano

We did this!

Meet your future Tiger Woods

and Vijay Singh *my indian brother* =)

While I didn't live up to Vijay's expectations, I had fun looking at the spooooky Halloween decorations

and my creeeepy husband

Even though Justin won, I felt a little better with the fact that he had to stick his hand into the grody water to fetch his ball three different times. Take that! ;-)

And what better way to end the night than to win some big money (not) by playing Deal or No Deal?!

A negative $18 in the bank account. Check.

A fun, carefree night with my husband. Priceless.

Oh Yeah

If this image doesn't call for a dance post, then I don't know what does! Weight bearing on legs. All right! We're starting to move!

A great day with Daddy

Grabbing the spoon from Daddy because he's not feeding her fast enough

Messy messy girl...and we love it!

This is how we are now meeting our family and friends who come to visit - in the parking lot of CRC (children's recovery center). This is our family friend, Katie (the person who created the Team Moriah and I Heart Dr. Hanley t-shirts for us). She brought a beautiful Chloe doll for Moriah to enjoy...how come my mother-in-law and her friends look like they're 25??? =) We love you Katie!


My parents are coming into town tonight. Justin and I told Moriah we wont see her 'til Sunday, when they leave. Undoubtedly, they are going to hog her, which might give us the chance to go on a date. Yay =)
Love,
Victoria

Back to Basics

My heart was so overjoyed today when I got to
Hug my daughter.
Smell her hair.
Kiss her cheek.
See her chest rise up and down.
Watch her smile.
Notice the twinkle in her eye.
And take her all in, cherishing every moment of her life.

This is not just with her but with all of my loved ones. During this journey, we were taught the very basics of life. It has been engrained into the very cores of who we are now. We cannot live our lives anymore without appreciating what it really means to live.

M-I-A

I know. I know. Those of you who check our blog on a consistent basis are probably wondering where we have been lately.

But, really, I havent been on the computer in days, except to quickly check my email. I've just been too busy going back and forth between the center and our apartment, running errands, cooking, cleaning...having a somewhat normal life again...and I'm really enjoying it. Ha. I told Justin yesterday that this is sort of a tease. What if it doesn't stay like this? We've been in such an unsettled state for the past almost two years. I've had to adjust to living out of a suitcase and not having our own kitchen/living area.

We don't know what things are going to look like after 2 1/2 weeks when our lease is up. We don't know if Justin is going to have a job that will be able to support us by then.

But, the thing is...we are O-KAY. We're really at peace about moving up here, even though it was a kind of sudden decision. But, it was one that has been on our hearts for a while (Justin would always joke that if Moriah had to go back to LPCH for any reason, that that would be it - we'd move up there - and because of her random incident of bleeding which totally healed over, we are here for good).

Like always, we continue to trust that God will provide. It is the meaning of Moriah's name, after all =)

Miss M is still doing well. No news really is good news.
The days go by pretty fast here.

She has play group in the mornings from 9:30-10:15? and she loves it (mostly because she is surrounded by all boys - no joke, she loves guys). She spends a lot of the time looking at the other babies and is talking to them.
*She has started babbling again, and lately, has been saying "dada" to everything. So happy that she is vocalizing again, so much so that I'm not upset her first word isn't "mama" ;-)
Anyway, I love play group too because of the fact that you have a room full of babies with trachs and ventilators, and no one thinks anything of it. It warms my heart to see all the Nurses and RT's do whatever they can to make life as normal as possible for the kids.

Hangin out with Nurse Brooke

Feeding with OT Miriam...*we are going to try a sippy cup this week!

*Starting to wave Hi and Bye

And we've learned she would rather play with mango than eat it

Other random updates/progress report:

*When we were planning to take M home from CHLA a few months ago, we were totally set to go home on a rate of 32 breaths per minute and 2 1/2 liters of oxygen with her ventilation support. Ever since she came up to LPCH, her blood gases showed she was way over-ventilated, and so she is down to a rate of 8 breaths per minute and she has been on 1 liter of oxygen - and she is breathing COMFORTABLY and satting at 100! I wonder if that huge piece of granulation tissue was blocking her airway?

*We haven't had to use rectal tube since going down on her caloric intake (Dr. Keefer, you were totally right to cut back to 20 kcal of Elecare!) Her feeds have been going so well, and we haven't had to deal with an extremely distended tummy.

*There hasn't been any progress with getting M a hearing aid for her right ear because we found out they don't typically do hearing aids with kiddos on ventilators (it would amplify the noise from the machine and hurt their ears). We have to obtain an actual copy of her ABR tracings and give it to LPCH's audiologist to see if the amplification would be low enought to go ahead and do it. We will see.

All right, that's enough for now.

Just wanted to say another thank you to all of you who have been there for us, and continue to pray and support our family. We wouldn't have been able to ride this storm without you. We are praying for calmer waters from here on out. =)

Much love,

Victoria

Normal Baby Stuff

We've been dealing with traumatic, life-threatening issues for the past 21 months. However, when it comes to dealing with the normal baby stuff, I don't think we know what to do!

Moriah has started crying now everytime she has to be put down for her nap or for bed at night. This girl never cries, and so we were really concerned when she started doing this (I even asked for the Doctor to come in and perform a physical exam on her because I was really worried that something was wrong). But, we have now noticed a pattern that Moriah is only doing this when she is left alone to sleep in her crib. Poor thing is having some separation anxiety. She's been so used to someone being there ALL the time, and so she is not liking being alone.

Even the cold, wet washcloths to suck on and her doll, Christine, aren't working.

I really hope she can settle down soon. The hard thing is that if Moriah is left alone to cry too long, it affects her oxygen and heart rate, so we definitely do not do the "cry-it-out" method. Even if the crying didn't affect her, I still wouldn't let her do this - i already established I'm one of those moms. =)

But other than this, we had a great day. It was Justin's day off, and so he actually took the opportunnity to go on a job interview. This was his second in two weeks. Woohoo. Progress.

We will continue to update.
Love,
Victoria

No More Green

Except for Moriah wearing it, her runny nose has ceased, and she was feeling much better today. We are so thankful that this turned out to only be a cold, and she did not need antibiotics to fight it. Score!
Happy girl with scratches on her nose. She was ready to scratch her nose off this past week because of her cold.

In the past few days, we've just been playing

Doing more tasting

And more physical therapy - our new way of doing tummy time =)

And we've gotten to know her RT's and Nurses more

RT Almas and Nurse Razel

Nurse Julie and Nurse Sujatha

Everyone has been so great, and has loved on Moriah when we can't be there to do it ourselves.

***Hey everyone...it's Justin now. So we got a call about an hour ago from the recovery center. Moriah had been crying for an hour straight. It could have been an abdominal mgrane but not sure. We got her the meds to calm her down...but it was tough to hear about. We will fill you all in when we get more info.

Thanks again for following up on us...
justin and victoria

A Hot Mess

Been a rough few days with
fever
runny nose
yucky green mucous being suctioned out of trach
BAD breakdown around neck from trach ties (does anyone know how we can buy danny ties from la?)
bleeding bum from terrible diaper rash

M was a mess today.
I pray to God that we can get past all of this soon...would love if it was by tomorrow ;-)
Otherwise, we love her Nurses and RT's at the center. They have been great, and it is refreshing to see them love on all the kids here.

Thank you all for your prayers.
Love,
Victoria

Still Blue Ribboning It

So, Justin and I decided that we aren't going to count the recovery center as "home", and we're keeping on our ribbons until we actually go home home with Moriah. Ha. Our ribbons are probably going to be so gross by that point. =)
Nevertheless, we continue to be grateful for our supporters...

Josie Hull who also made the cutest video for Moriah on their blog

The Smileys; Boulder, CO

Nurse Christina; LPCH

Megan, Gabby, and Jenny; Quiksilver, Northern California

Nurse Holly; LPCH

And Ester!

Sorry that I have not been responding to my emails or phone calls. I've been too busy trying to get settled in and spending 45 minutes at a time driving on and off freeways getting lost. I think after driving around all of northern california today in attempt to get to moriah, I might have everything figured out.
Miss M, unfortunately is sick. I just got home from being with her because she had a fever and was crying. It breaks my heart to see her like that, and to know that I'm not there to comfort her all the time =(
Anyway, I will keep u all posted on how things go.
Several of you have asked what kind of work justin is in, and the answer is retail management. He also got his business degree with an emphasis in marketing. If anyone hears of anything, please let us know!
Thanks.
Love,
V

First Day Here

And we're already having lots of Firsts!

First time in the high chair.
First time tasting any kind of food! What better way to start than with a lollipop.

First time tasting an apple through this fresh food eater.

First time tasting sugar water in droplet "bolus"

Moriah clearly liked her first day here =)

Then we also had physical therapy

which she also enjoyed

eventually ending up on Daddy's lap to rest from her busy morning

We are loving this center, and enjoying all the wonderful rehabilitative services that they provide for these kiddos. We know that this is going to help Moriah thrive, as long as she stays without infection. **

Moriah's mornings will be packed with play time with other same-age children. In addition she will be receiving physical therapy, occupational therapy, speech therapy, and feeding therapy each several times a week.

Also, they will be focusing on weaning the vent and her medications. M has already made incredible strides these past few weeks with her vent settings. She was going to go home on a rate of 32 breaths per minute when we were in Los Angeles because she really needed the support. She has been on a rate of 8 breaths per minute for the past few weeks, and is breathing comfortably. A-maz-ing. We are thanking God every single day as we witness our daughter do a complete turnaround.

The goal for us is to ultimately get her home (here in Northern Cal) if we can get good, reliable home nursing.

Lastly, we want to say a BIG Thank You to Hopeful Hearts Foundation for setting us up with one month of temporary housing, which buys us some more time to get situated up here. Still nothing yet as far as the job hunt, but you know what? We are so thankful that we at least have the next 30 days covered! We love you Chez Family....as well as all of you for standing by us!

Lots of love,

Justin and Victoria

**Visiting Policy at the Center is only parents and grandparents. They are trying their best to protect the children from getting the flu this season, and are minimizing all visitors. We even get our temperatures taken before entering each time! Haha. As a mom of a child with a seriously compromised immune system, I love this! =)

Bye Bye LPCH

Day of discharge, and Moriah is ready to rock (the hair makes it obvious)

Okay, okay. I had to get one last group shot with her team.

l to r: np jana, nutritionist lisa, dr. long, dr. cisco, nurse dustin, case manager lupe, dr. francis
And another.

l to r: nurse dustin, transport nurse jodie, nurse amy, nurse myra, nurse jackie, rt dave, and unit assistant mary lou
Last one. I promise. (I just love these guys!) =)

In front of Packard.

Loading her up, and she's off!

Goodbye to our family at LPCH. Next time we see you guys, it will just be to say hi and give hugs on our way to follow-up doctor's appointments. There is no other place like yours. We love you!

Riding Along

Wow. It's been difficult to update the blog lately. Mostly due to the fact that I've been in kind of a weird place. It's just the whole "letting go" thing that I'm struggling with...I'm having a hard time feeling so unsettled and having so many unknowns in our lives.

We've been having a really wonderful time with Moriah, and we are thoroughly in awe of how well she is doing.

Several times in the past week, Justin and I have said that she looks like she did before we admitted her to the hospital in November last year. The sparkle is back in her eyes, and her spunky, funny personality is shining through.

It's beyond awesome...and we know that it comes only from God.

Yesterday, we took Moriah on a wagon ride with Nurse Lise and RT Claremont.

It's these "little things" that mean so much to us. It's helped made our stay in the hospital all the more bearable. We've grown to care for her Nurses, RT's, and Doctors here at LPCH, as they have cared for our daughter and both Justin and I during this time. We are definite about the decision to move up here, and we continue to do whatever it takes to make this move possible.

However, I must say that this isn't easy...and neither Justin or I are people who like change (if you couldn't tell already, we're boring).

Anyway, the transition to the recovery center can happen as early as tomorrow, and I am just nervous, excited, tired, and timid all at the same time. I'm excited because I want this to be a place where Moriah can really grow and progress. That's the most important thing. But I'm not really sure what to expect, and I hardly have the energy to re-explain everything there is to know about her. I really pray for us to build good relationships with her caregivers, and for this to be a place where we can go to bed at night knowing she is in good hands.

There's just so much on my mind right now... as I'm wondering how we're going to get through this next chapter in our lives. Where are we going to live? What is Justin going to do for work? In the midst of it, we want to make decisions that will not compromise who we are, and the values we have set for our family.

I don't expect anyone to have answers for us. The only one who knows what is going to happen next is God.

I just have to continue to trust, and keep riding along...



Love always,
Victoria

Recovery Center

When driving to the rehab facility yesterday, Justin and I had the music on full blast and sang about every song that came on the radio...wrong words (me) and all. It was nice to have those few totally carefree moments, even bringing us back to high school/college days. Then we pulled up to the recovery center, and reality set in =)

We actually really liked what we saw at the center, and know that it will soon feel like home (for now). It is like a full blown medical facility, but it is much homier, and all the kids are up and about, playing together, having therapy, preschool, etc. Moriah is going to be so cute over there! Parents can't stay overnight, but you have to know that I'm going to live as close by as possible! I hope they're prepared for me =)

We are still unsure of when she is going, but we think that it will happen relatively soon. Still no luck with the job or apartment hunt...but again, we know that things will work out...even if it means we'll be sleeping in our car. j/k!

M continues to do extremely well, and we are happy with all the progress she is making. We are amazed each day with how well she is doing.

We've had a few visits from friends in the past few days.

Moriah's Preschool teacher, Miss Kristen

Kalmia and Lisa who we met during our stay at the RM House.
An amazing family who came all the way from Hawaii to seek the
wonderful medical care offered by LPCH

Emily, who came bearing gifts

And just for the heck of it (maybe it's because I listened to all that music yesterday), we're having a dance post. My choice today is Timbaland. Justin can never stand my "fun music," as I like to call it, but he said this one was okay due to the fact that he could relate to the guy. =)

*I don't know why I'm sharing all these random tidbits of our lives. Nevertheless, enjoy! *

Ayayaye

As I wrote in my post earlier, things have been busy. But they've been really, really good. Moriah has been the happiest little girl, and has a smile on her face almost every second of the day. Unbelievable.

We've also followed up with ENT more about the whole bleeding incident. I spent a while this morning talking to Dr. Cheng - wonderful man - about what he saw and what chla saw. I do not doubt that Moriah's trachea is completely healed (just chalk another one up to God!) But no one is completely sure about what actually happened and if it can be prevented from happening in the future. The thoughts are that it was just a giant piece of granulation tissue.
However,
1) everyone agreed that granulation tissue doesn't typically cause someone to bleed 200 ml's.
2) CHLA did say they saw a "pulsating vessel with fresh blood"
3) Moriah had an L&B just one month before this incident, and there was NO note or observation of this huge piece of granulation tissue - how could this develop in just one month? Or how could something that big be missed?

So, these are still the unknowns. In the end, we just asked if they could obtain the images that CHLA took during their bronch. That's the end of that for now.

Onto our LIFE ISSUES...
Justin does need to find a job that would be able to support us while we are on our own here. Right now, Quiksilver doesn't have any openings that would give us this opportunity, and so J is lookin for a j-o-b. Not so easy in this economy.

Also, we have to find a place to live as soon as Moriah gets moved to the children's recovery center, and they are saying it can happen as soon as next week.
This is where "ayayaye" comes in! My head is spinning.

But, I do have to say that we are now a family who never says never, and we know that we will be able to handle all that is to come.

In the meantime, I will end this post with pics of Chunkas.

Just want to squeeze dose cheeks! (typing this with jaw clenched)

Insisting on having this blanket over her head for her nap...the good thing about having a trach is that we know she would be okay to sleep like this =)

Enjoying Dr. Marshall's surgeon hat...get ready to pay for med school Daddy

Reading her favorite book for the 1000th time

And last but not least,

Someone is going to make such a cute pumpkin for Halloween...and it's not me (the checkout lady at walmart asked if i was buying this costume for myself?! im not even going to go there on this one =)

Thank you all for your continued support.

Love always,

Victoria

We're Still Here!

This is to just quickly say "hi" and let you all know that we are still here. Things have been going really well - just super busy - which leads me to be super tired - and then i have no energy left to update the blog. Plus, Justin has been hogging the computer in our spare time to start his job hunt. We have some super big changes coming up, trying to do whatever we can to get us up here.
I promise to do a post tonight to update you on everything.
Love you all,
V

A New Love

Are you wondering why Moriah has dreamy eyes?


Because her super nice anesthesiologist let her wear his surgical hat after he could see that she was reaching for it. From that point on, Moriah couldn't take her eyes off of Dr. Marshall the whole entire time they wheeled her down to Interventional Radiology. She's found a new love.

M is in there right now because her GJ tube came out the other day (if it's not one thing, it's the other). Anyway, it should be an easy, uneventful procedure to place it back in.

We have a care conference scheduled for Monday, and so we should have a better idea of everything that needs to take place before moving on to the Children's Recovery Center.

Will update soon.
Love,
Victoria

Post Op Day 3 Hundred Something

During rounds the other day, the Nurse told me that the team was joking about Moriah being 3 hundred something days post-op (typically you hear the patient is like 5 days post-op).

I knew I said I would stop counting the months we've been in the hospital, but I lied. These have been the longest, most difficult months of our lives...but also some of the greatest, most joyful times too.

I sat here today holding my angel for the first time in two weeks, and loving every minute of it. She didn't mind it either. ;-)

You can see that she will break her forever-and-a-day post op streak soon. Yeah, we might hit 365 days. But, we'll still get there. She is looking so good!

P.S. Happy Birthday Uncle Alex! We love you so much!

Can I Just Show You

Why I love this CVICU so much?

Because they do things like...

Rummage through Moriah's bow collection and wear the bows themselves

Nurse Jackie and Nurse Holly

Nurse Holly, Nurse Amy, and Nurse Robin

And Moriah's Primaries, Dr. Shin and Jana

Leaving smiles on Mommy's and Moriah's faces...