The time is coming

Zuzu surgery is scheduled. It's terrifying but we are excited to patch and sew up her precious heart. We are anxious to get her to 100%. 

Her surgery is 8 hours long and recovery for her is estimated to be around a week. Most of that will be in the PICU the rest in the pediatric unit of The Primary Children's Hospital. 

We are also moving AGAIN either right before or immediately after Zuzu's surgery. This is our 12th move in 5 years. I'm not complaining it keeps things new and excited. Not to mention all the lifelong friends we have made. We are moving near the new outlets in Lehi Utah. 

Gosh I don't know where I would be or who I would be without these two.

 

ZuZu is lucky to have Taimi in her life. Taimi is always so attentive and loving. For the first month and a half after Zuzu was born Taimi couldn't see her. But luckily in the PICU Taimi can have one 10 minute visit a day. I'm sure Taimi's visits will help Zuzu recover quicker.

Father 's day was great. Saturday I took Chris to Tucanos where we stuffed our faces!

We ate a little to much. Chris was about to pop. We were meaning to go to the Orem fair after but thought whirling and twirling after such a large meal was asking for it. And by it I mean barfing all over each other. 

I love this man. So far together, to name a few, we have traveled the world had two beautiful girls moved a dozen times. Been given a daughter with Down Syndrome. Cried laughed prayed screamed and laughed. And we have only been together for 5 years. I can't wait to see what's next.

Taimi and I sent Chris on this awesomely long treasure hunt Sunday morning. I don't know who loved it more, Taimi or Chris. Probably me walking behind them with the biggest grin on my face watching them read each clue and open their next treasure.

I have made it through things the last 9 months that I didn't think I could. With each trial I say to myself "I can't do this" praying " please don't make me so this!" But somehow I do it and somehow I end up being happier then before finding joy in my trial. This life isn't suppose to be easy but we are suppose to find joy and be happy. And with Chris Taimi and Zuzu life couldn't be any other way but joyful and happy. 

Disneyland 2013

With a nudge from my sister Liz and encouragement from Zuzu's cardiologist. We decided to put our nervous fears aside, in regards to Zuzu, and 

Go. To. Disneyland. 

Our cardiologist said it would be good for Zuzu because its a warmer climate, there is less RSV. Since its lower altitude, she will breath better. And we are just going with our little family so she will be passed around less.

DONE! We were in the car and there the next day.

I've always played this game since I was little where the first person to find the Matterhorn mountain gets a prize/wins. So Taimi got out her seeing eyes. She was SO excited. 

Zuzu actually had nothing to do with WHY we were going. It was all about Taimi. Sine about December we have been impossibly busy with doctors appointments and ZuZu. This trip was to make Taimi feel special, loved, important and for all of us to feel carefree. 

It could not have gone more perfect. Everything went so smooth. Taimi got to hold hands and walk with all her favorite characters. Including her all time favorite Snow White whom she had the pleasure of singing with while taking a lovely stroll through the castle hand in hand.

Not to mention Daisy who we have never been able to find before this trip

"This is the best day ever!" Was all Taimi kept saying. day after day. 

 I could not have agreed more.

Since ZuZu is very special we were able to get a special pass. The longest we had to wait for a ride was no more than 5 minutes. No lines=no crowds.

Thank you ZuZu! Zuzu did amazing. She loved bein carried in our carrier all day snuggled close to us. She also loved all the rides, colors, and sounds/songs.

Those rides included splash mountain, Matterhorn, Toy Story Mania, cars, and all others. Did we mention Taimi was tall enough to ride everything so that's what we did. We rode everything at least twice! Monsters Inc. and Little Mermaid we rode at least 10 times each. 

It was awesome!

Taimi was so brave she loved all the rides except Matterhorn. She hated Matterhorn.

Since we had that great pass. We had the best seats to World Of Color. I finally really got to see that show. I always cry during the nighttime shows. Sitting there with Taimi on my lap with her arm around me while she strokes my neck and Chris by my side holding my hand while watching amazement on my daughters face. It makes me so happy. I leave the world behind and grasp the moment.

I love nighttime  at Disneyland. I love walking across the street to our plaza seeing all the kids who had passed out hanging on to their toys with smiles on their faces. It's adorable.

We sat by these grandmas at the World Of Color who gave us free passes to Breakfast At The Plaza with Minnie Mouse. It was my favorite thing we did the whole trip. We weren't rushed with the characters. They spent so much time with Taimi and Zuzu.  We got there at the very end so we missed the crowds. And the buffet was delicious. Eeorye had a stare down with ZuZu (pic above) he couldnt get enough of her and kept coming back for more ZuZu it was so cute..

Taimi would lay out her map and new Minnie doll for every character before they would get to our table. Hahaha most characters were incredible and would get on the floor with her and show her their favorite spots on the map. Taimi would also show them her special blanket and baby sister. All the characters took time for ZuZu which Taimi loved. 

It truly was an unforgettable trip. Mission was accomplished! Our Taimi girl left feeling so special with a car load of memories.

I turn 30 in October (eiyiyi) 2 days later Taimi turns 4. Taimi and I decided we want to celebrate our birthdays in Disneyland.

We can't wait. October can't come soon enough!

Thank Collin and Liz. We couldn't have gone without you.

The dentist

Taimi had her 2nd dentist appointment in her lifetime last week. 

I cried! but thats no surprise i cry at anything these days. I just couldn't believe how big she looked in the chair and I was so proud of how brave and friendly she is.

I get to brag for a second, Taimi was so well behaved they couldn't believe she was only 3. They were able to get all X-rays. Do the whole cleaning. And the exam. Bam! Way to go Taimi. She was cavity free so we took her for some ice cream. And yes I realize the irony.

ZuZu

Zuzu is 4 months old and 10.5 lbs.

She had a sedated echocardiogram on June 4th. Taimi the night before threw up all over herself and her bed so we gave her a bath and got her clean sheets. Between feeding Zuzu, pumping, and taking care of Taimi we were going on about 3 hours of sleep. In order to take care of both kids I went to the hospital with ZuZu while Chris stayed home with Taimi so she could get some sleep. ZuZu and I had to be at the hospital at 7am. She couldn't eat for 4 hours before the sedation so Zuzu was staving.
They were not ready to sedate her till 8:20. ZuZu is the best sport she is so cooperative. she was smiling and talking to the 2 nurses hovering over her when all a sudden they stick in her IV. ZuZu never cries! So when she does its scary and heart breaking especially when it's a stupid needle in her arm. Sometimes that's the hardest part. I can't really explain to her what's going on I can't prepare her or warn her.

 Zuzu and I have an amazing connection.

No matter the reason for the tears the moment we are in each others arms we both stop crying. And this was no exception. I held Zuzu until she drifted to sleep choking back sobs. After which I laid her down express my concern that they need to kept her warm and then walked to the nearest empty room to cry. I wished I wasn't alone. I cried and cried wanting to be the one with the punk heart!

I called my Mom cause Chris wasn't answering. It took me a few minutes on the line to stop crying so i could get a word out.
My mom saved the day picked up Taimi so Chris could come and hold me (together).

He is my glue! When he is around I feel capable and adequate. The echo showed that Zuzu is ready for her surgery. I'm just waiting for the hospital to call so we can schedule it. I got this HUGE packet in the mail telling me what to expect and prepare for on surgery day and during recovery. I can't get through two words before my eyes are blurred and the papers get wet from my tears. I keep thinking how I can't do this! I'm just not strong enough. so i just keep moving forward with hope and faith and a whole lotta trust.

AND ALWAYS REMIND MYSELF THAT ZUZU WAS HEAVENLY FATHERS DAUGHTER BEFORE SHE WAS MINE!! 

She is and will always be in the best of hands.

Taimi's Gotcha Taimi Gotcha

Sisters are definitely something created by heaven. I myself have two older sisters who have in every way shaped my life. Camille my oldest so full of charity. She was always a safe haven for me and my siblings. Elizabeth the next in line has a special zest for life knows who she is and isn't afraid to put herself out there. I also have three little brothers who played a big part in who I have become But for today this post is about sisters. 

Zuzu got to come home to us on oxygen and a lovely (not) heart/breathing monitor on March 10. She was in the NICU a month and 6 days. It been the sweetest thing watching Taimi with Zuzu.  I love watching her put her jealous feelings aside and care of her baby Zuzu as she calls her. 

The other day Zuzu was crying after I "blue siryned" her if you know what I mean. She held her tight kissing her forehead and whispering in her ear "it's ok baby Zuzu don't cry Taimi's gotcha Taimi's gotcha. " Followed by, "shshshshshshshshs Taimi's gotcha shshshshshshshshs."

I believe so strongly that these two girls are connected with a bond that can never be broken. A bond that was made in heaven. Zuzu will be Taimi's light and sunshine and Taimi will be Zuzu's guide and bodyguard. 

It's easier to take care of Zuzu without little Taimi's help but the more I involve Taimi girl, the more I recognize the need for me to not get in the way of their reconnection and their bonding.

I know Zuzu agreed to take on this frail body to go through this life with her neat and special needs ONLY if she could have Taimi right by her side, Chris as her Dad and me as her Mom which makes this experience our greatest gift.

Meaning behind the name

I'm a passionate person especially when it comes to things, people and places I love. And one movie I love is The Christmas  movie Its A Wonderful Life. 

So many people have asked where I got the name Zuzu. Well, Chris and I gave Taimi a list of three names Zuzu, Noel, and felicity. Zuzu from my favorite movie. Noel is the French word for Christmas my favorite holiday. And Felicity is a word used in my favorite book the Book of Mormon. We let Taimi pick her baby sisters name and she picked Zuzu for obvious reasons and also because  it's pretty awesome. 

What? ( With an uncomfortable giggle) Really?  (Awkwardly smiling) are some of the reactions i have gotten when i tell them what we named Zuzu and where we came up with it. they always expect a great story or reason behind her name to them its simple and even silly to name your daughter after a movie.

But  It's far more than a just a movie to me its more than a seasonal film and tradition for me and my little family. 

The movie takes place during the worst economic depression is US history and the most devastating war humankind has ever known. And yet the movies message is, life is wonderful. Most everything goes wrong for the main character his dreams are squandered everything he wanted out of life is taken from him he ends up being broke, suicidal and facing time in prison and yet the message is how wonderful life is. And it's wonderful because of the way he reacted to the things that have happened to him. Its wonderful because of his relationships with his family and friends. its wonderful because no matter what happens to him he still has a loving wife and children who need him. His friends who respect him. And he will always have a loving Heavenly Father to help and protect him. 

From around March 2005 to October 2012 when I met Chris, fell in love,  served a mission, got married, watched Chris play college basketball, had a baby girl and traveled the world for 3 years. Life was so much better than I could have ever imagined. But it took a crazy turn in mid October 2012 when Zuzu was given a 50% chance of still birth a 50% chance of a heart defect and a 100% of complete uncertainty.  Our life came to a complete halt. It wasn't going as planned. But because of the lessons I learned and who Zuzu is she is a daily if not hourly reminder that life is suppose to be and will always be wonderful the choice is ours. 

I can't tell you how many people have never seen and more often never even heard of Its A Wonderful Life. Maybe 8 out of ten people have never seen nor heard of it.  It's shocking and a little alarming nobody watches those quiet simple movies anymore that are full of chocolate covered nuggets of wisdom. Our pediatrician has required his whole office to watch it together cause so many haven't seen it. How awesome is that? 

Its awesome because the movie is an excellent reminder to me of the impact we have on those around us either direct or indirect for the good or the bad. It's a spiritual reflection on what we can be when we are at our best. Its a message about how life doesn't go has planned but CAN BE AND STILL IS wonderful.

And that's why we named Zuzu ZuZu. She is a reminder to me and others of how wonderful our lives are. And with Zuzu and Taimi in it it's truly an understatement. Even though life is going to be so doggone hard nothing can or will overshadow its wonder and Beauty because we won't let it. 

Perspective and Change

Since October 21 we have been getting bad news after bad news from the doctors. From virus's to swollen ventricles. From Down syndrome to a not functioning heart.
At first I would cry and cry until I would get headaches. I would pray and pray like it was in my control. At around January I realized NONE of this is in my control no matter how much I want it to be or no matter how bad I want to change it. Instead we see and appreciate everything in our midst. And, with God's help, To make it more than we could have imagined.

I never thought I would have a special needs child. Especially since my Dad passed away with diabetes and Chris has had two brothers with autism. I foolishly thought that was it for us the rest of life should be a breeze, right? WRONG! Life is hard. It's suppose to be hard and it might not get easier. And that's ok because we have been given unlimited resources to help us support and and sustain us. And are surrounded by things that we should find joy in and do!

 "Every journey has a secret destination of which the traveler is unaware." It's couldn't be more true for our little family. And even though we were unaware, unprepared and especially are UNDESERVING this is our new journey and we are excited to face it together.

For some reason we have been flooded with the most kind and heart felt messages full of encouragement and compliments. However I can't help but feel overwhelmed and inadequate. I have done nothing but cry and pray while somehow finding strength far beyond my own. To do nothing more than survive. Zuzu on the other hand is adjusting to a new world a body (a sick body at that) a different nurse every 12 hours. Trying to learn how to eat, breath, suck, poop, burp, communicate and  all the while changing my heart, altering my perspective and some how making me feel like the luckiest mom on this planet to have been entrusted with her. One look a her and you know she is special. One minute with her and you know she is destined to change lives that her purpose on this
earth is far greater then mine.

Zuzu is doing well. There are good days, really good days, bad days and terribly bad days but she smiles and pushes through it. And all through it she comforts US, makes US feel special makes US feel like we were chosen for something so great but aren't capable to understand it yet.

In love with Zuzu

Because of our daughters condition she lacks a lot of stamina. Nursing alone takes nearly everything out of her. I only get to nurse her three times a day and our holding time is limited to 90 minutes. To not be able to hold her and feed her when you feel she needs it or when I need it is easily the hardest thing. Or when she is crying and the nurses comfort her and know what to do instead of me, it's heart wrenching.

The nurses give her a bath every other early morning like around 2am. The other day the nurse told me how much Zuzu loves baths. I had to leave and hid out in the bathroom while I cried. I didn't even know she liked baths.

Zuzu is doing awesome she loves to nurse We both wish we could do it all day long. She loves to sleep she sleeps a good 20 hours a day. She is so affectionate loves to hold our fingers and stare in our eyes. I can't get enough of her.

And neither can anyone else...

Zuzu loves her visitors supporters and fans.

BFF's

The NICU only allows the same 4 visitors and the visitors have to be 18 years or older. 

Which means Taimi hasn't been able to see her sister in person hold or kiss her 

talk to her and tell her stories.

Taimi was so excited to get a glimpse of her baby sister for the first time a few days after she was born.

 Taimi is one very VERY special little girl. 

Especially since her and Zuzu made a deal with each other in heaven that they would be sisters and take care of each other.  Taimi opted to come to Earth first and promised to always be there and take care of Zuzu.

 She was thrilled to see Zuzu through the little window. 

She waved and wished she could touch and kiss her.

 Thats Zuzu's little bed in the left window. 

Since then she has moved to a bigger private window and a big girl bed. 

She is growing and doing so amazingly good for her circumstance 

which tells us one thing that she is definitely Chris and my daughter. 

From France to the NICU

Our day of countless miracles

 It was May 4 we had just done some grocery shopping.  

We were heading to our usual Doppler and Non-Stress Tests. 

Which measures the babies heart rate, fluid and blood flow going through the cord. 

We had been going to these appointments every other day sometimes every day since early December. 

Little did we know this was the day they were going to admit me to deliver 

and in 5 hours I was going to be holding our precious little girl.

Zuzu Noel Miles was 36 weeks old and alive! (Miracle #1) 

they didn't think she would make it past 32 and had a 50% chance of a still birth.

I was admitted a little after 6pm and was already dilated to a 1 (miracle #2) 

40 minutes later a 3 (miracle #3)

We were very lucky my body was cooperating.

They started me on Pitosin. 

But immediately Zuzu was showing serious stress signals. Meaning during the contraction her heart rate would drop dramatically and it would take her a minute or two to get back up to a normal healthy heart rate.

Right away they decided to stop the pitosin and monitor Zuzu for a while has we discussed a c-section. 

Which was our only safe option at the moment.

I kept having consistent contractions and Zuzu kept dropping. 

Scared and unsure we said our silent prayers 

Right away they gave me an epidural in case we needed to rush Zuzu and I into surgery. 

The Doctor and nurses were not optimistic and were 99+% sure we would have to do a c-section especially since the contractions I was having were fairly small and she was already so stressed.

I was so scared! I just wanted my baby out and alive.

The doctor saw how nervous and scared I was to have surgery so he decided to see if I was dilated and effaced any further 

AND I WAS  

I was a 5 and it had only been 20-30 minutes 

My awesome Dr.decided  to go with the 3 strikes your out motto. 

So they turned the pitosin back on but at a VERY low drip. 

Zuzu was still dropping but staying consistent enough to keep trying.

(miracle #4, 5 &6)

They said they would give us about an hour and check me again. 

 During that whole hour Zuzu's heart rate looked amazing!!(Miracle 7)

The hour passed so they checked me again and I was a 9!! A blasted 9!

So they got the room ready for delivery 5 minutes later I was a 10 and pushing. 

(miracle #8)

The doctors and nurses were amazing that Zuzu pulled through and was strong enough to go through the canal. She is so amazing!

After a pushed a good 5 times out she came. Taking in her first breath with her heart beating and lungs inflating. 

(miracle #9-11)

Some might wonder why we consider some of these things miracles. 

Well let us tell you a little about our champ and hero Zuzu. 

She has 4 holes in her heart one very large and three pretty small ones. One of the holes all babies have but it closes by the second or third day but hers didn't. She was diagnosed with Down Syndrome which is the reason for most her heart problems 

50% of children with Down Syndrome have heart defects. 

Our little angel is in the NICU. 

She is 2 weeks and 1 day old. She will need heart surgery sometime in the very near future. 

We will try to keep her from heart failure till she reaches 4-6 months but she might go into hearth failure before that time. 

In the last 2 weeks Zuzu has shocked everyone from staying alive and in the womb till almost 37 weeks to being strong and spunky enough to go through the birth canal. 

And most recently latching on and nursing every scheduled feeding already weighing in at 5 lbs 3 oz. 

(Miracle # 12 & 13)

She's a rock star and steals the hearts of everyone that meets her.

**there have been countless more miracles. We are so happy to have our little precious angel here and a part of our lives.

Thanks to everyone for your concern love support and prayers