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...

Another Miracle for Moriah

Well, I cried when we heard the news after the bronchoscopy.

They did not see anything at all when they did a full examination yesterday of Moriah's trachea. The site of the erosion had completely HEALED over. Nothing needs to be done at all.

At first, we couldn't believe it and thought it was too good to be true. But, after talking to her Docs, and seeing the images, we saw...there was NO MORE BLOOD, PULSATING, etc. Everything healed on its own.

Thank you God.

Thank you all for your endless prayers.
THEY DO WORK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Lots of love,
Victoria

I'm Lovin It

Sorry we haven't updated lately. We have been busy, busy, busy.
We have been getting settled into the Ronald McDonald House, which we are so incredibly grateful for! They make it really nice for families who are going through this difficult time. Their rates are really affordable, they provide meals and activities several nights a week, and you get to make friends with other families in similar situations.

But, most importantly, we've been spending a lot of wonderful time with Moriah, staring into her beautiful eyes which we haven't seen for the past two weeks!

We



simply



can't



get



enough



of



this girl!



They just took her into the OR to perform their own bronchoscopy to look at the vessel.
As you might be able to see from the last picture, she just started getting her rash and fevers again. =(
However, she's still in a good mood, and is smiling and blowing kisses to everyone.
It's really good to be back here.
We will update you with what they find.

Love,
the Nelsons

P.S. Our new blog friend, Tinika, created this beautiful button for Moriah! She does amazing work, and so if you want any new "do's" for your blog, we highly recommend her.
Thank you all for the continued support and prayers.


<center><a href="http://momentswithmoriah.blogspot.com/"><img alt="Moments With Moriah" width="180" src="http://i439.photobucket.com/albums/qq119/tinikaleann/MoriahButtonOne.jpg" height="164" /></a></center>

Go Moriah Go!

Big Brother, Max; Sierra Madre, California

Maji; Sierra Madre, California

Nano; Sierra Madre, California

Carey McCulloch; Northern California

Gracie Swann; Southern California

Ashley and Lexi Kostjuk; Disneyland

Lucas; Northern California

Rachel, Allison, Jemelene, and Russ Wilson; Oregon
*they also run the Prayers of Hope blog*

Grace and AJ Truhe; Northern California



Continued prayers and support for Moriah!

Welcome Home

This is what we were told by our beloved Nurses, RTs, and Doctors when they saw us. We were met with hugs, smiles, warmth, and compassion.
Moriah looks the most comfortable that she has looked in two weeks. Her sedation issues were immediately taken care of with a dex drip - all taken care of without a word from us. They just knew.
For now, we ARE home.

Thank you for the love and prayers.
We will continue to update.
Love,
Justin, Victoria, and baby Moriah

YEAH!

Stanford has a bed! She's being transported today.
The CVICU's AWESOME Charge Nurse, Jackie, is on top of it.
Such a relief to get things moving, and one step closer to getting Moriah back to baseline.

Justin is driving back from Arizona right now, coming back from his grandfather's funeral. As soon as he gets here, we'll drive up together.

Will continue to update.
Love,
Victoria

Think Happy Thoughts

During these times when Moriah is down and out, I always look at pictures and videos of the fun, happy times that we have with her. Here are a few of the more recent ones that I've been looking at this time around. (I know the family is going to love this post)

A month ago, while fighting an infection, Moriah was still playing peek-a-boo and giving me kisses even though she wasn't feeling well. She's such a sweetheart.



Or the week leading up to Moriah's bleeding incident, everytime we would put her in her stroller, she would insist on sitting in it with the canopy pulled over her head. She is such a ham.


Peekabo with Baba

And whenever Moriah starts to get really tired, she keeps herself awake by talking more. She's already worn us out at this point and so we stuck her in her chair. This girl doesn't ever want to miss out anything!





Touching Daddy's ear, which she loves

Mommy and Moriah having a lot of great quality time as we spent almost every single day in that room on the general floor care together

One of her favorite activities!


We love you, sweet girl. We will do this all over again as soon as you start feeling better!

These Past Few Days

We went to Justin's Dad's Birthday dinner. It was good to be with the family (and to eat some delicious food) after a hard day at the hospital for us, and after a difficult week for the family after Papa's passing. We love you guys.

L to R: Grandma Olga, Uncle Matt, Me, Justin, Aunt Kristen, Jon, Papa (Justin's Dad), Alexis, Jenna, and Audrey
We visited our Nurses from the general care floor.
They were so good to us and Moriah while we were there.
And when the bleeding incident happened, they were all so on top of it.

We ran into one of our favorite families! Nolan, Marie, and baby Isabella. Moriah and Bella were NICU neighbors back in February, and we totally hit it off with the family. They are so sweet, and have helped us with setting up all of Moriah's trach needs for home. As soon as M is out, these girls are going on a play date! =)


Oh, and we've been giving Moriah nonstop smooches.


You can never give too many kisses, hugs, or say I love you enough!

We came in this morning to a new infection (or her current infection not clearing). Her white count shot up and she has fever and tachycardia.

We pray for, as always, supernatural healing over her. We pray for her body to have renewed strength.
And for us, as her parents, to continue to have the strength to keep fighting for her in the midst of our hearts being so heavy.
We pray for a medical team who will listen to us, reassure us, and come up with a plan to best tackle this, hopefully trying to save her little body from having to fight so much right now because of the situation with her heart.

As you all know, these infections scare us. We pray for it to get under control and for it to clear.
M's tear ducts are also clogged because of her being paralyzed. The whites of her eyes are bulging, and so we ask for this to also go away.
If you feel led, we ask for you to take some time and join us in deep, intentional prayer for Moriah today.
Thank you guys.
Love,
The Nelsons

Patience is a Virtue

I see why.
Because it saves you from stressing out when you're playing tthe waiting game.
Wish I had more of it.
Still on standby.
Stanford still does not have a bed available.

M is stable.
Starting to see the whites of her eyes puff out through her eyelids. Eek. What is that? Doctor is coming in to look at it.
Will update soon.
Love,
Victoria

P.S. thank you all for the support, prayers, shout outs, encouraging comments and emails. You have all helped give us a boost to continue on this path. We are almost approaching 11 months of being in the hospital and it has been the hardest period in mine and justin's lives, to say the least. But we have also experienced some of the highest highs with our daughter as well, and for this, we would never trade this for anything. We love you all.

Psalm 116

Psalm 116
I love God because he listened to me,
listened as I begged for mercy.
He listened so intently
as I laid out my case before him.
Death stared me in the face,
hell was hard on my heels.
Up against it, I didn't know which way to turn;
Then I called out to God for help:
"Please, God!" I cried out.
"Save my life!"
God is gracious - it is he who makes things right,
our most compassionate God.
God takes the side of the helpless;
when I was at the end of my rope, he saved me.

I said to myself "Relax and rest.
God has showered you with blessings.
Soul, you've been rescued from death;
Eye, you've been rescued from tears.
And you, Foot, were kept from stumbling."

I'm striding in the presence of God,
Alive in the land of the living!
I stayed faithful, though bedeviled,
and despite a ton of bad luck,
Despite giving up on the human race,
saying they are all "liars and cheats."

What can I give back to God
for the blessings he's poured out on me?
I'll lift high the cup of salvation - a toast to God!
I'll pray in the name of God;
I'll complete what I promised God I'd do,
And I'll do it in company with his people,
In the place of worship, in God's house,
In Jerusalem, God's city.
Hallelujah!

*My status: I'm back...feeling renewed and encouraged =)
Our family status: we are making the move back to Stanford with the intention of staying there permanently. We don't know what it's going to look like. How we are going to afford it. If this means that Moriah might have to be in a pulmonary rehab facility for a while (where home vent kids go in the area), then we will have to go along with it. We tried to make it work here. We really did...but we have been re-directed back to LPCH. The one thing set in stone is Justins job. Arrangements have been made and he will once again, work for Quiksilver up there. We have just learned to take things one day at a time and give the rest to God.
Moriah's status: Stanford is full =( we will have to wait again for tomorrow. In the meantime, she continues to be sedated and paralyzed (all I want to do is pick her up and cuddle her!) But I will look forward to doing this as soon as we get over this next hump.

The Rockstar

*sigh*
At least we know Ernie, Christine, and Ox will keep her company when we are not there


Thank you all again for the encouragements and prayers. Its really helping us through this time.
Love, Victoria

Go Blue!

Some more pics from around the country, praying for Moriah. We love you guys. Love, Justin

The Hellings and Seidels; Boulder, Colorado

Michelle and Lauren

The Snyder Family; Orange County, California

The Sassano Family

Tiffani and Maddi; Northern California

Teta Vera; Pasadena, California

No Stanford Today, Maybe Tomorrow

It was another very difficult day. Thankfully, it didnt have to do with moriah. Rather, it had to do with m's medical team - there was a major breakdown in communication. Anyway, the issues have been resolved and everyone has come to an understanding - it was just another blow to my spirit.

It was reiterated to us that M's vessel did not heal and was still pulsating with fresh blood. Again, we r so lucky that her blood clotted to stop it from bleeding anymore. Moriah typically gets aspirin everyday for her heart, but they of course discontinued it for now. This has only been seen 5 times in the 25 years of chla's highly experienced, incredibly wonderful trach nurse, Jiffy. Anyway, they say that this collateral needs to be embolized, but our ENT here says that there are still a lot of other vessels in the area, and you can't be sure that its not going to happen again - unless her cardiac team can think of a way to address it.

They just got back the bacteria in her urine, and its enterobacter cholae something. anyway, like I said last night, moriah is still fighting this, her white count trended up, and so they switched her over to cipro, which works to kill this specific bug.

No Stanford today, hopefully tomorrow.

Thank God Justin is off work today and tomorrow. I don't know if I can do this on my own anymore. I need him to physically carry me through these days. My body is too weak, and my heart is too heavy. God provided me with an incredible husband.

Love,
Victoria

The lump in my throat is back.
M came back from OR. Still irritation and some fresh blood at site of vessel. They can't get a hold of Stanford tonight. They will try in the morning.
Heart rate has been high today.
Been upping her sedation througout day.
However, her cheeks and leg are starting to get that awful, horrible red hot rash that she gets with her infections.
Tried talking to the Attending. He wasn't any help and contradicted everything I said. He did not hear me at all.
I'm left feeling helpless. Hardly reassured. And there is nothing I can do right now but pray as I sit here watching the Nurses poke Moriah over and over again because her line isn't drawing and her blood keeps clotting. They need to check her labs.
This is just...I don't even have to say it. You know.

By this morning, moriahs infection has gotten under control. The custom trach just arrived and so they plan to take her to the OR late afternoon today, and take another look at the vessel.
Again, if the vessel has healed, there is no need to do anything, and thus, we don't need to be transferred.
Needless to say, we are thankful that m's infection is at bay, and its not posing an issue.
Justin and I went to bed at 1030 last night and woke up at 830 this morning - for some reason, we r still exhausted =)
Thank you all for the prayers and support. You are carrying us through this...
Lots of love,
V