Happy Birthday, Jeff!

Happy birthday to the love of my life, to the partner pea in my shared pod, to the father of my children, to the peaceful piece to my puzzle. I love you completely and unconditionally, my heart. Not only do you make me whole, but you support and care for me in ways that I never could have imagined. While this year won't bring you a new computer, new iPad, or anything of the like... I will shower you with love and kisses, and do my best to take as good care of you as you do for me. 

Happy (Miracle) Birthday, Norah!

My Dearest Love Norah,

On November 21st of last year, exactly one year ago, you died for nine minutes. Your heart stopped beating. You weren't breathing. The staff at South Davis participated in a miracle: they helped bring you back. But I'm pretty sure our family gets a good portion of that credit, too. You are the toughest and bravest girl I know. And I like to believe that you knew that your family was unwilling to give up on you. Even at just under 4-months old, you must have known that your family had been there with you every day, fighting that fight alongside you.

I've had multiple conversations with various health care workers, who have said similar things about CPR. Many of them say that there is something intangible that tells them when it's time to stop CPR, and when to keep going. Everyone in that room must have known to keep going. Nine minutes is a VERY long time to be administering CPR. People are always astounded to find out that you were gone that long, yet didn't seem to suffer any long-term damage. The sound of the charge nurse's (Lorey's) exuberant "YES!" when she heard your heart beating again, will forever be etched in my heart.

It doesn't need to be said that November 21st is a date that I will always remember. We call it your Miracle Birthday, and we plan to celebrate it every year. Today we brought cookies for the staff at South Davis, and a fun developmental toy, a play tea set, for you. For the first time that I've seen, you sat up all on your own for several streaks of solid time to play with it, though they were very wobbly streaks of solid time. We're all determined that we'll be celebrating your second Miracle Birthday at home... But perhaps we'll make the rounds to both PCMC and SDCH to remind them of what good work they do.

It has been an amazing year, my sweet girl. You are the light in our lives. Your are the sweetest, most adoring baby sister, and the cuddliest, smartest, most loving and beautiful daughter. We are so thankful for this last year with you. How fitting that this year, it falls on the day before Thanksgiving.

We love you so much,
Mama, Dada, and Harper

Literally minutes before you coded last year: as happy as could be.

Right after we rushed back to PCMC's PICU.
You slept for a few solid days.

The first smile post-arrest. You gradually showed signs
of your old self again, and we knew that you were going to be just fine.

What a difference a year makes. This photo was taken
a couple of days ago. Harper gave you a
"huggle" while you watched Charlie Brown Thanksgiving
together. You were playing with his hair while he shared
your crib... which he LOVES to do.

Checking out your Miracle Bday present.
You love your new tea set... and so does Harper!

Harper's Fourth Birthday

Below are some photos from Harper's birthday party a few weeks ago. I love the contrast between Harper and Norah's parties. It is very fitting that Norah's party had a bazillion guests, while Harper's party was small and quiet with only a few family members in attendance.

We went to the new City Creek mall in SLC so we could check out the new Disney Store. Of course, he picked out a toy from Cars 2. The Disney Store only made me want to take the kids to Disneyland. I could live there, I tell you. Harper is saying now that he wants to go to Disneyland. I told him we want to go too, and that the four of us will go together someday... but Norah has to break out of the hospital first. He isn't too thrilled about waiting. Gotta love the (lack of) patience of a four year old. The photo left is of Harper checking out the fountain at the mall. The new mall was pretty, but not necessarily anything to write home about. Although, I suppose that's exactly what I'm doing by writing this. ;)

Norah may be the saddest crier ever. To all the parents out there that wished their child had a mute button, let me tell you: soundless cries are far, far, far worse than the loud ones. I hate it when she inconsolably cries. Her entire body heaves heavy sobs, she covers her face, and huge tears rush from her eyes. And there isn't a single sound. Jeez, it breaks my heart. Just like all siblings, Norah was grumpy on the day of her brother's birthday party. Maybe she knew we were off to have fun without her. It is the second year in a row that Norah has missed her brother's party. Let's hope we don't have to repeat it a third year in a row.

Harper wanted a Super Mario cake for his birthday. Of course, I couldn't find one so had to make one. The hat was the most basic idea for a novice like myself, and it suited him perfectly. The strawberry buttercream was amazing.

He tried to pretend like the Happy Birthday song was NOT happening. He just turned his head away from everyone and hoped we would all go away. At least he didn't throw a fit.

He loved blowing out the candles. If all goes well, we'll probably have to do this outside next year since flame + oxygen don't play nice together. 

Everyone loved his new Angry Birds game! We were so glad he didn't get many toys this year. He has WAY too many.

Donkey Kong Jenga is super awesome!

Happy Birthday, Harper!

With so much going on with Norah, I don't post about Harper nearly often enough. He doesn't know it, but he turned four on Monday. He thinks his birthday is on Saturday, when we're having his party. All day Monday, I whispered "Happy Birthday" to him. He would ask, "What?" ...to which I would reply "I love you", with a sly smile.

Harper never ceases to amaze me. During this last year, we have pushed him so far beyond his comfort zone. He is painfully shy, hating new people and places. That just doesn't work with our lifestyle. We're always taking him to the hospital, appointments, meetings, etc. He doesn't want to go. He doesn't want anyone to talk to him. He wants to be left alone. We stretch him to the limit (and sometimes beyond it). He shuts out the world with video games learns to cope as best he can.

But that's not all. He's smart. He's HILARIOUS. He says the craziest things, as most four year olds do. He laughs. He lights up the world with his brilliant smile. He has really impressive manners when it comes to "please", "thank you", "you're welcome", etc. He is always telling me that I'm his best friend and I'm beautiful (Jeff taught him well), and always telling Norah that she's his "beautiful sweet girl" or his "beautiful baby sister". He's such a charmer. He cuddles me when I'm sad, and to Jeff's dismay, Harper always goes to mommy when he needs a good cuddle.

He's a doting big brother, too. He is so gentle with Norah. He shares his toys. He pats her gently and tells her how much he loves her. He asks how she is after I get off the phone with the nurse. He asks when she'll come home and says that he misses her. Sometimes he even says that he wants to go to the hospital to be with her. I'm enjoying the way they get along for now... I'm sure it won't always be that way, but a girl can hope!

I can't forget to mention his video game skills: that boy is a champ. He will someday play in a Super Mario or Kirby tournament, and will win us millions.

We love this little guy, and are so thankful for him. He brings so much joy to our lives. He has helped us through some really difficult times, reminding us that laughter and smiles are ever so important when life gets really difficult. One of my biggest hopes is that we can show him that our love for him is truly unconditional.

Happy birthday, my sweet, beautiful boy.

Girls Just Wanna Have Fun

Can you believe how sweet Jeff is? I was so touched by his post below. He is the most amazing husband, father, and best friend a gal could ever ask for. Times may be tough, but never was there a marriage as strong and true as ours to get through it together.

Did you all know that my mom is in town? I am awfully sad that we're wrapping up her almost 3-week visit. On our first or second day together, we went out for lunch, and check out the fortune cookies we got! Her fortune is on top, mine is on bottom. So crazy!

We have such fun together, not to mention that she's been a tremendous help around the house. She's given me mani-pedis, I've played with her hair, and she's given me comfort when I've felt down. We've indulged, laughed, and hugged. She's played with Harper and cuddled with Norah. And one of the most fun things we did? On my birthday we got tattoos! I love you, mama.

My mom is the lead stroke for a competitive (whale boat) rowing team in California's Bay Area, where she's lived most of her life. The ocean is meaningful for her, as is the water design that I drew for her (first!) tattoo.

What is this nerdery? This is Chromosome 12, wrapped around my wrist. The location of the gene that causes Jeff and Norah's genetic change is highlighted in pink, and ID'd below the chromosome... along with a star for each of them. It amazes me that this little tiny thing has had such a big effect on our lives.  I might add to it at some point, getting further down to what the actual genetic change is, which is a tiny itty bitty amino acid. It represents a really challenging year, as well as an amazing future. They carry this genetic change with them always, and now I do too.

My Shauna-Our Family

'We were but stones, your light made us stars.'

Lest it be unsaid, and I’m sure that Shauna would prefer it was left unsaid, Happy Birthday to our most beloved Mother Star. Amidst all the action and deserved attention that Miss wonderful wonderful Norah received around her big numero uno, Shauna’s birth date came and went modestly without the same fervor. I’m here to correct that.

Shauna is my beautiful wife, the mother to our kids and the most wonderful person I know. There is no one I know who is stronger, more kind hearted and caring and also the best Super Mario Brothers player I know who...wait, what’s that my son? Oh yeah, scratch that last one Harper, you’re right, you’re the best....around...no-ones gonna ever keep you down!

Ahem. 

Shauna and I met through work. It’s the last place either of us were looking to find someone to fall in love with. Unless you count that one time I mistook a private meeting with the HR representative to be about my behavior and not my charming ways and dashing good looks. It only took one conference call with Shauna after my extended absence and I was hooked. Man, I was kind of annoyed at first. Who is this person that took over my job while I was out, and how does she know so much more than I did when she had only been doing for 6 months what I had been doing for over a year?!? And why did I want to hear her voice again, even if it was to talk about work related blah blah blah. It didn’t take long from there for us to veer the conversation from work related topics to music, far side comics, and other jibba jabba. These conversations went on and on, even after work should have been long over with and we both would have been racing for the door normally. And I hate talking on the phone.

And then I started looking for excuses to talk to her after work, and we started text messaging. No, not the type of text messages that KSL admonishes senior citizens for sending to each other. We just felt that that talking on the phone for 6 hours at work wasn’t enough. Our cell phone bills were increasing.

*NOTE: People reading this that work where I work, these numbers I throw out that sounds like we weren’t working and were just talking are exaggerated numbers and man I am a hard worker...yeah, that’s the ticket.

'There’s a light, when my baby's in my arms.'

One thing led to another, and here we are approaching our 5 year anniversary. Time starts to fly when everything’s in it’s right place. For someone who never thought he’d get married, have kids, live the dream, etc., this is all quite amazing and mind blowing. 

“Letting the days go by, letting the days go by, letting the days go by, once in a lifetime”

Some highlights (historians from the future aka internet nerds, will mock me for missing the million wonderful things I fail to mention):

-Hearing her voice for the first time

-Falling in love

-Seeing her for the first time

-Falling in love

-Meeting each other in person the first time in Vegas

-Falling in love

-Christmas in Arizona

-Falling in love

-Seeing the Beatles Cirque du Soleil show in Vegas 

-Falling in love

-Getting married on the beach in Northern California with our closest family.

-Falling in lo-...ok, you get the idea

-Seeing the positive sign on the pregnancy thing showing we were pregnant with Harper.

-Getting to a place where she could quit and be a full time mommy

-Seeing the positive sign that we were pregnant with Norah

-Norah’s beautiful crazy birth

-Every day afterwards where together as a family we’ve survived the hardest, most wonderful moments of our life together.

'All you need is love.'

Shauna is everything wonderful I refuse to see in myself that she helps me resistingly see, and that which we both see in our kids. She is Harpers mischief. Norah’s smiles. Norah’s fits :). Harpers sweet hugs and cuddles reserved for ‘only momma.’ Norah’s assuming the napping position that is reserved just for momma. The love reserved for Norah from so many strangers that have become close friends and protectors, not just of her, but of momma as well. She is the light that has guided us both through dark times where worried tears wouldn’t dry, not for lack of tissues. The bridge for a family when our sweet daughter couldn’t come home after being born and momma couldn’t bear to leave her side. The strength that seemed completely sapped, only to be restored through sheer willpower.

There is no one like my Shauna. I’ve wasted enough words in a vain attempt to describe how amazing she is and how much she means to me and our family, but it’s a failed attempt. As words can’t do it justice. A picture worth it’s million words would fail in it’s earnest effort. All I can say is that I love her, and that she is everything to me.

Happy Birthday Nauna.

Your Norah. Your Harper. Your Geoffrey.


-J

The Happiest of Birthdays

Norah's birthday was simply perfect. Of course, she wasn't at home. She wasn't free of life-supporting medical equipment. But she was alive, happy, smiling, breathing, and so very loved. I can't believe it has been a year (sometimes it feels like days, other times it feels like a decade). Every once in awhile I think about the typical things that our family has missed out on. But those thoughts are fleeting, as Norah's smile reminds me that it is all worth it. Our life is our own, and while I'm eager to someday take Norah home, I'm also grateful for what we do have.

There had to be something like 75 people that came to wish Norah a happy birthday. It was totally, completely crazy, especially when you consider that there were only about 30 people at our wedding. We're low-key sort of people. But that's just not how Norah rolls. My only regret for the day was that I wasn't better able to spend time with each one of the partygoers. It meant so much that our loved ones celebrated with us, both near and from afar. It meant even more that our family was able to see the love that so many carry for Norah. As one of her PICU nurses said, Norah is love.

We had a slideshow of this last year's photos of Norah. Even those that know her best were a little surprised by how she looked when she was first born (we included one of the scary NICU photos). The contrast between the struggling newborn babe and the smiling 1-year old is striking.

Oh - and we finally set-up a donation button on the righthand side of the blog. Several of you have asked for it, though we have been hesitant. We are admittedly prideful about asking for help, but we've given in... After all, it is for Norah. So thank you to everyone that has, and will donate. Your contribution will help with medical costs, travel expenses, and time away from work to be with our girl when she needs us most.

It's been a year for the record books, and I thank all of you for supporting us through it.

xoxoxo

Norah meets her great grandma, Jeff's mom's mom.

Norah meets her newest cousin, 5-day old Dreyden. They're close to the same size!

Norah and Dreyden's feet. Norah's are barely bigger. I love her feet. 

Harper dealt with the chaos by losing himself in his Nintendo DS and daddy's iPhone. This poor kid puts up with so much despite his social discomforts.

Norah kept her eyes locked on her speech therapist from PCMC. She wanted Leann to help reassure her during the whole eating/tasting experience. She wasn't used to the audience while eating. She has come so far with her oral aversion, thanks to her therapists at both PCMC and SDCH.

Norah was wired after the party. In this photo she's showing us that she knows how to take the oximeter (it measures the oxygen percentage in her blood) off of her foot and put it in her mouth.

Our Most Beloved Star

This time last year, my water had already broken, and I was putting off going to the hospital in an attempt to prolong the need for medical intervention in an all-natural VBAC. Of course, things certainly didn't go the way I had intended, but what birth ever does? I read somewhere that only about 4% of babies are born on their due date. Norah was part of that small percent. Though it was about 31 hours between my water breaking and her arrival, Norah was right on time. These first two photos in this post were taken during Norah's first few days after birth at the U of U Hospital. I still can't bear to share her very first photos on here. They never fail to make me cry when I look at them.

On the topic of statistics, I've also heard that only about 1% of children become ICU patients. I wonder what sort of subset Norah belongs to - of pediatric patients that need prolonged support. My guess would be less than 1% of that 1%. Most families are fortunate to be in and out in a few days or weeks time. Some of my readers know what it's like to live in this alternate world. Our babies don't get to come home for things like holidays, birthdays, or other celebrations. It hurts.

But with all of the ugliness, comes so much beauty. Norah's path has been hard, long, and exhausting. But on it, we've found love in such amazing places. I can't begin to count the people I've met along the way: healthcare professionals, parents, and other children who are going through their own difficulties. These people are amazing. I've met professionals with incredible experiences that led them to their career choice. I've met kiddos that have had heart or other organ transplants. I've met kids waiting for transplants. I've met other long-termers like Norah, who are being sustained on life-support while waiting for time to simply help them grow, heal, or blossom. I've met families who have lost their children. And most recently, I met one of the sweetest girls ever: a 14-month old with such beautiful, expressive eyes. She died just a few days after we left the PICU this last time, and it has deeply affected me. I can't stop thinking about her and her lovely mama.

We have been through so much during this last year. I never could have dreamed any of this up, and nothing ever would have prepared us for it. We hurt and we cry. We laugh and we smile. We do everything we can to give Harper and Norah full lives despite our circumstances. We can't bear the thought of what we would do without the care we've received. Norah will be one year old tomorrow. I can't fully express what this means to us. I can't even fully express what it means to everyone that lives in Norah's world. And in all my full geekery, I close with a quote from Lord of the Rings, one that represents Norah in such a lovely way:

"I give you the light of Eärendil, our most beloved star. May it be a light for you in dark places, when all other lights go out."

Birthday Bash

Norah is again settled in at South Davis after an uneventful transport (this time we used South Davis transport instead of an ambulance, and it was SO much better). She's happy, lively, and tons of fun. The staff at South Davis missed her dearly, but now the PICU is missing her. It's probably not too unlike separate families that share custody of their baby.

Norah's birthday is on Friday! We invite you all to celebrate the big ONE with us on Saturday from 1:30 to 3:30 PM. For those of you that can't attend, we may set up something via Ustream, but I don't know if there will be much to see other than people eating cake and competing for Norah's smiles. Details regarding the party are in the flier below (click for full view). Feel free to RSVP in comments to let  me know if you are going to make it. Otherwise, you can email me.

Family Fun

Old-Man-Gunnell (aka Jeff) had his birthday on Sunday. We had a great mini-weekend filled with indian food, video games, geekery, and family time at the hospital. 

Sweet siblings

Harper sure loves Norah

Norah is really working on her two bottom front teeth. Her drool is out of control, and so is the cuteness!

 They decked out Norah's wagon like a parade float... complete with crown and scepter. She waved her scepter to her subjects, demanding smiles for all!

Happy Half-Birthday, Norah!

Well ladies and gentlemen, we've made it six months with our tough little girl. Her life has been saved more times than I'd like to remember, and every scare, every bit of heartache, and every ounce of tough work has been worth it. She is the warmest, happiest baby I've ever met. Though we'll more than likely be celebrating her first birthday in the hospital in July, it will be the best birthday ever.

Nom nom nom!

Look at that playful girl!

Had to sneak in this too-cute photo taken after Harper came traipsing into the living room wearing my glasses.

A few weeks ago, Norah had a dance party with one of our favorite nurses, Cecily. Though developmentally behind due to her medical issues and life in the hospital, she does really well sitting in the Bumbo chair.

My Little Dude

This post is long overdue, but I don't think I need to give any excuses; I'm sure you all understand. My precious little dude turned three on August 20th (hey, at least I'm not a full month late). Three years ago, we were announcing "It's a Boy!" to everyone. Harper is one of my very best friends. He warms my heart and makes me laugh. He is my precious little guy, and I love him so very much. Though he can be a total booger sometimes, I always cherish our quiet cuddles, sweet affection, and goofy giggles.

We had a fun little get together for his birthday party. The only missing attendee was Harper's "baby sister", as he calls her. This was the first time he was really into gift-opening, as seen in the pictures below. It was a great day. Thanks to everyone for the gift, birthday wishes, and for celebrating such a special day with us.

Even though he has a million little Cars, Jeff couldn't resist. Emma clearly thinks that Harper doesn't needed any more.

"To Harper. From mostly Mom, kinda Dad"... What could it be?

A Seattle Sounders soccer ball! Can I get a woot woot?!

He loved showing off his presents for the camera.

Another show-off! Does anyone see a theme? The kid LOVES the movie Cars.

Even though Norah was at the hospital, we were all thinking of her. And yes, he is the world's greatest brother. He is so so so sweet with her. He even kisses and hugs pictures of her.

Super cool birthday cake! Jeff had to help a bit with the candles.

My little guy has the sweetest face. Although... his cousin Logan is also making a pretty fun face in the background too!