Friday, December 30, 2011

Penthouse Suite: Norah's Corner

Norah is now the proud resident of the PICU's "penthouse suite". The corner room in the PICU has lots of light (thanks to extra windows), and is larger than the other rooms. I finally talked my way into getting moved to that room since we're going to be there for so long. The room is all decorated, and has been dubbed "Norah's Corner" to go with her semi-unintentional Winnie the Pooh theme. I'm already going to have to take new photos that show the artwork we placed on the wall. I'm also going to make a fabric-covered bulletin board to show off family photos and pictures colored for her from Harper and cousins. We love Norah's Corner!

Decals on the outside door to liven the room up

A shelf I put together on Christmas day, along with more decals.

Pooh Bear bedding to match!

A couch for mother-daughter slumber parties

 Enjoying her physical therapy while Grandma and her Aunties Em and Shel visited

She loves her new room!

Thursday, December 29, 2011


I was expecting a really difficult Christmas. Our plans were to visit Norah on the morning of Christmas Eve (photo left), then go up to Logan to get new tires (thanks Mark and Carol!), then take Gunnell family photos before the annual family party. We were then going to drive all the way back home so we could have Christmas morning at home before doing a second Christmas morning at the hospital with Norah.

I took one of Norah's toys as a stand-in for Norah for the family photos. We took some group photos with Jeff's parents, their children and grandchildren, but we just couldn't bring ourselves to take a small family photo without Norah. It just didn't feel right. She had been having a difficult couple of days (due to a bacterial infection), and while we were (and are) ever so thankful that she is still alive and fighting, her absence was a heavy weight on us. After the photos were taken, our family presented us with an enormous surprise.

Jeff's family had all agreed a few months ago that we weren't going to do a gift exchange this year. I was relieved since money was so tight. What we hadn't known (or guessed) was that the family pooled that money together (and then some) to give to us as a cash gift. There were more wet eyes than dry eyes amongst our large family. To my wonderful family: thank you thank you thank you thank you thank you! We are so thankful for your generosity, and can hardly believe the cash amount that was tucked into that card. You aren't just my in-laws, you are my family and I love you all dearly. Now we hope to be able to afford most of the re-set of our annual out of pocket expenses in January.

It was difficult to leave the party so early in the evening. We typically spend the night in Logan on Christmas Eve, but we had to slip out so we would be able to get an early start the next day. Harper had a great time opening his gifts. This is the first year he's really understood the concept of gift opening. He's been asking for Woody and Buzz, and that's exactly what Santa left under our tree.

Since Santa can always find every kid no matter where he or she is, we went to the hospital to see what he had left for Norah. Harper helped open "baby sister's" gifts, setting each gift next to her after it was unwrapped. What a sweet kid. Norah was overwhelmed with gifts from Santa, donors, and us.

Despite the difficult time we're going through, we have experienced such generosity, love, and affection. Of course I would take away all of Norah's heath woes if I could... but it sure is comforting that so many of you care for her and for us. I was expecting the saddest Christmas, but it was because of all of you and the love of our family, that we had the best Christmas ever.
She loves to sleep tummy-down on mommy.

Happiest. Baby. Ever.

Snoozy girl

A huge Disney sucker treat!

Christmas cuddles

Christmas Kisses

Norah checking out one of her donated gifts - Sasha the Scentsy bear.

Our happy family on Christmas day... our first photo all together!

Monday, December 19, 2011

Secret Santa and Holiday Cheer

I've been having a difficult time getting into a cheerful holiday mood. Last week my in-laws got together to see the Christmas Village in Ogden. Harper was a bit grumpy at first, but once he warmed up to it, he basked in the magic of childhood Christmas. I tried really hard to live in the moment, but couldn't help think of how much Norah would have loved the lights. I ached to tote her around, cuddled together, trying to fend off the cold winter air. I cried while we were there.

This week, Jeff and I wanted to show a little gratitude to the staff at PCMC, so we decided to bake a big pile of goodies for the staff at the PICU. They take incredible care of Norah, work long hours, and make a big difference in our quality of life. Yesterday, I was sitting in Emily's kitchen with Shelly and Emily. We were wrapping up the last of the treats when I began to feel a little Christmas cheer. I didn't know it yet, but that was the start if a big turnaround for me.

When we got to the hospital, Norah's aunties took turns cuddling with her. They were all overjoyed to see her smiles, and Miss Norah, our little social butterfly, was overjoyed to see them. Kelli, Shelly, Emily (and her hubby Ryan) were witness to the fact that no one can enter Norah-land without being deeply affected. Despite being tethered to life supporting machines, she giggles, smiles and talks (in her trach-suppressed way).

It only took telling a few people to start spreading the word that there were yummy cookies in Norah's room. It felt good to thank the staff as they came in. We talked to doctors, nurses, techs, RTs, and even housekeeping. It is truly better to give than receive; I could feel a little more Christmas cheer.

There was a thick envelope sitting at the foot of Norah's bed addressed to Jeff and I. It said "open together". When Jeff arrived, that's exactly what we did. Inside was the sweetest card about love at Christmastime written from the perspective of a child to their parents. Inside the card was a typed note "from" Norah to us. Inside the note was a significant cash gift. I started to sob. There wasn't a trace of a name anywhere on the card or note. Everything was typed so there was no handwriting to decipher. We asked nurses, techs, and even tried to get the front desk receptionist to spill the beans regarding the person who dropped it off. We spent a long time speculating and attempting to deduce who our Secret Santa could be.

We have now given in to the fact that this person (or people) want to stay anonymous, so we want to give them that. I love that someone (or some people) are walking around knowing that he/she/they made all the difference to a family in need, and that he/she/they feel great without needing recognition. With the hope that our Secret Santa is a blog reader, I'll finish this lengthy post with a message to him/her/them:

Dear Santa,

You've given us more than cash at a time when we need it most. You've given us more than a gift at Christmas when our family is in a difficult situation. You've seen the love and hope that our family has, and grown it exponentially with your anonymity and thoughtfulness. We're so grateful that we have so much love and warmth in our lives, and we are grateful for you. Thank you for your good deed, your selflessness, and for filling me with holiday cheer in a way that I've never known before.
With Love,
Shauna (and Jeff, Harper, & Norah)

Fun smiles earlier this week

Big cuddles with Auntie Kelli! 

Norah sure loves her Auntie Shelly

She had lots of smiles for Auntie Emily!

Monday, December 5, 2011

Family Time!

On Friday we seized the opportunity to have some family time at the hospital. They'll soon restrict visitation for the season by only allowing visitors aged 14 and older. This is to protect both patients and visitors from RSV and other winter illnesses. So we had Norah down on the floor on a mat and had some great cuddle time together. It's incredible to see the loving bond between Harper and Norah. This just might be their last visit together for a few months, which makes me a bit sad.

Such a beautiful girl.

Play time with Daddy. She sure looks unamused, doesn't she?

Smooches with Harper!

Saturday, December 3, 2011

Bright Spot

When I was 18 years old I was eager to set out into the world. I knew I needed to get out of the San Francisco Bay Area's economy or I'd never get ahead. I moved to Phoenix with the bravery of someone with nothing to lose. Absence (and distance) indeed makes the heart grow fonder. I became closer to my family than I ever would have imagined. As a result, I miss them like crazy.

Last week wasn't all terrible. My mom came to visit for Thanksgiving! We had a wonderful time, and it was so hard to see her go. Can you believe that this was our first Thanksgiving together in 13 years? I cherish our rare visits, and am so grateful that she arrived right when I needed her. Our one goal for this trip was to get Norah into her arms. Mission accomplished. I love you, mama.

We had lots of fun, including a romp in the backyard. Harper had an especially fantastic time. At times like this, it's ever so important to enjoy the little bright spots in life.

Friday, December 2, 2011

Heavy Reality

They try to clear out the hospital before holidays so families can be together. I noticed more sad faces than usual at the hospital yesterday. Maybe the tears were a product of all the new admits. Sometimes I get the desire to comfort some of these people, but I always remember that you can never presume anything about anyone or their situation. Sometimes I feel so strong - as if I'm in my own element, playing the role of the parent who is used to life in the ICU. I was feeling that way yesterday... until we had a meeting with a few members of Norah's care team.

We had a preliminary meeting before we had her full care team there to discuss our short term and long term plans for her care and stay at the hospital. We were presented with a heavy reality. Norah won't likely come home for another year, or even longer. Though we all hope for the best, and they do what they can to prevent it, there is still a chance Norah could have an event similar to that which happened last Monday. As difficult as it is to swallow, Norah could still die in the ICU.

I wasn't able to hold back the tears when the doctor said that.

They are going to reach out nationally to find other cases of babies with skeletal dysplasias that needed to be trach'd so early in life. They want to get a better handle on Norah's possible prognosis as well as any possible treatments that they haven't though of. Norah is an extra special case. They haven't had any other patient like her - not only because of her physical challenges, but also because of her sweetness and amazing level of interaction with everyone. Though they may find cases "like" hers, I wouldn't be surprised if she's in a one-of-a-kind situation. Even after genetic testing, they still don't know what sub-type of spondylometaphyseal displasia she has. I vote for naming it after our family if they officially recognize this sub-type as our own.

After the meeting, I was pretty sad. Jeff reminded me that when he was born, his mom was told that Jeff would likely be a "vegetable". They couldn't have been more wrong. The reminder helped me feel a bit better, but I was still feeling low. I said to Jeff "What if...." and couldn't finish the thought. He said the most comforting thing to me. "With Norah, there is no 'what if'. There is only 'right now'." And that is how I'm going to try to live.

Wednesday, November 30, 2011

Life is Fragile

What a week. So we had a pretty terrible day last Monday. I was giggling, playing, and taking smiling photos of Norah (left) when she began to cough. She was having a difficult time so I passed the suction catheter to help with her secretions. I had a tough time passing to the normal depth, and she immediately went gray and still. Not blue, not purple, but gray. I called out for help and her respiratory therapist responded quickly. I grabbed the ambu-bag for him, and did what I could to help him revive her. She seemingly turned to stone in an instant. He called out for more help. Her color started to return as he bagged her, but when the charge nurse came in, she started to turn gray again. Just then, Jeff arrived with Harper. As the nurse called a code over the PA system, the three of us left the room. Now that she was in good hands, I was able to lose it. I sobbed uncontrollably in the hallway. Harper could sense something was wrong and also got pretty upset. He said he wanted to take the elevator downstairs, so Jeff went with him while the social worker stayed with me in the hallway.

Everyone was flooding towards her room, and when there wasn't room for more people, they all stood outside looking both anxious and somber. They were doing chest compressions in there, trying to bring our baby girl back to us. A few people left the room, telling me they were doing everything they could. After (what I was later told was) nine long minutes, I heard a female voice shout, "YES!" Soon after, someone came out to tell me that her heart was beating again. I am so thankful to all of those that brought her back, especially those that took turns doing CPR.

The ride to Primary Children's was awful. The ambulance rushed us there with the sirens and lights on. It was not exciting or thrilling; it was nerve wracking and stressful. She made the trip safely while being bagged the entire time by Metro Fire EMS. They weren't able to get an IV in, so had to place an IO (intraosseous) in her tibia. Poor girl.

So it's been a really difficult week of ups and downs, but she's been much better during these past couple of days. It looks like we're going to be hibernating at Primary Children's PICU for the winter at minimum. Who knows what will be done at that point. All that matters is our girl is back with us. Time will still tell if there was any permanent brain damage from those nine minutes, but we, along with the doctors, are very optimistic. She was happy and smiling yesterday (Tuesday), and seemed more herself than she has all week.

Life is fragile. Go hug your children, your parents, your siblings, and everyone else that you love. And be sure to tell them how wonderful they are... because you never know what can happen.

Settled in at Primary Children's. So exhausted.

Oh happy day! As of Tuesday, she's finally playful again. (Don't mind the IV in her head. It's better than an IO!)

Sleeping sweetly on Tuesday.

Monday, November 21, 2011

Nine Minutes

Nine minutes. Nine long, horrific minutes. Norah had an awful day. We all did. She coded & it took nine minutes for the staff at South Davis to get her heart beating again via CPR. We're back at the PICU at Primary Children's, but she's stable and sleeping comfortably. I'll post more updates when I can.

Thursday, November 17, 2011

Like Brother, Like Sister

I love this... check out these photos of Harper when he was just shy of 2 months old, and of Norah at about 3 1/2 months old (click for full view):

Out of the ICU!

Three is my lucky number, and they say that "the third time is the charm", right? Let's certainly hope so. Norah transferred back to South Davis for her third stay. Let's hope this one sticks until it's time for her to come home. South Davis rented and trained their respiratory therapists on the only ventilator that will work for Norah. She has expensive taste, that's for sure.

Though Life Flight came to transport her via ambulance, she moved a step up from the isolette to a gurney due to her growth. Speaking of growth, she's up to 4.4 kg, which is 9.68 lbs. I recently realized that Norah isn't a newborn anymore. It makes me sad to think that I missed so much of that wonderful but fleeting phase. She's developed so much in the last few months, and almost all of that development has happened in the hospital. I sure miss my baby girl.

Our family has been divided for almost four months now. This division has become our new "normal", but it certainly hasn't gotten any easier. Sure, I don't cry every day anymore. Harper no longer seems to feel abandoned every time we leave him with a family member for the day. But that doesn't mean it is any easier. We've only learned to cope with it better. I still feel reluctant to leave the hospital at the end of each visit. I still think of her constantly, and ache to be together. I don't think it will ever get easier. But we make the best of it. We smile and laugh with each other as well as the hospital staff. We cuddle and play, and do our best to make the most of the time that we do have together. 

So precious in the hair accessories made by one of Jeff's co-workers just for Norah!

I just can't get over her sweet face. And those eyelashes kill me!

So precious!

Finally settled in at South Davis

Sunday, November 6, 2011

Puppy Love

The first time I fell in love with a dog, it was with my best pal Kristen's greyhound Neptune. She was the sweetest, gentlest princess I had ever met. Neptune led me to wanting to adopt a greyhound of my own. When I first delved into home ownership, greyhound adoption was the first thing on my make-a-house-a-home to-do list. I remember the day Kristen went with me to pick up Dottie from Arizona Adopt a Greyhound. It was love at first sight. She was a petite girl for a greyhound, and had an independent (read: snobby) personality and the most beautiful dark brindle coloring. This first photo just kills me with her lovely face.

Over time, Dottie had quite a few health problems: ear infections, digestive woes, and paw/nail problems that have plagued her since about age 5 or 6. I can't even count the many attempts at treating her poor paws. Her paw/nail problem baffled multiple vets. But she was still our sweet snobby girl and we loved her.

I first met Dexter at an adoption event. He was a scared sweet big boy looking for a home. He raced for about two years in Kansas City before coming to Phoenix for retirement. Life with Dexter was a bit of a journey. He was clearly abused during his racing career, and perhaps before it too. He could be a bit agressive with other dogs when put in a bad situation, and was very wary of humans. Sometimes he'd be so spooked that we couldn't get him to come inside the house. Poor guy. Over the years, Dexter warmed considerably. He gave the best hugs, and loved to hog the bed.

Just before Harper was born, we stopped letting the dogs rotate turns sleeping at the foot of the bed with us. We didn't want to take chances of having a 100 lb dog jump onto the baby accidentally. It took them awhile to adjust, but they eventually did. To them, that was the end of an era. From that point forward, the dogs were constantly having to adjust to the shenanigans of their humans. It hasn't been fair to them at all, and now we have the added concern of soon bringing home Norah with all of her respiratory concerns.

The day after my gallbladder surgery, Jeff took on the awful task of dropping the dogs off with the kind woman who runs GPA SLC. You may remember that she helped find the perfect home for Noodle, too. She agreed to take Dexter in to her own home and adopt out Dottie to a friend of hers. Since this happened the day after my surgery, it was just too physically painful to cry. Jeff and my mom helped me fight from sobbing because it was murder on my body. As a result, I still haven't found myself fully able to grieve the situation. I miss them so much, but know it was for the best. The reality is that they're going to homes where they'll probably be much happier than ours. They'll be the center of their little universes again, and that's exactly what they deserve - especially at their old ages of 8 and 9. They were our kids for so long, and I am so thankful for their companionship over the years.

Dottie & Dexter, your mama and daddy love you so much. I hope you can forgive us, and I hope you enjoyed our years together as much as your daddy and I have. We miss you so so much, and not a day goes by that I don't think of you with love in my heart.

Some of our favorite memories with Dottie and Dexter:

  • We lovingly referred to them as the most "pathetic" dogs on the planet. Just look at the sweet pathetic looks on their faces. <3
  • Dexter loved to catch snowballs in his mouth every winter; Dottie loved to chew on ice in the summer
  • A few months after adopting Dexter, I attempted to take up jogging. I took both of them with me the first time, but before even a single mile had passed, I was having to literally pull Dexter along. He has zero endurance!
  • In her younger years, I'd take Dottie to charity 5k walks. She liked being social with the other dogs, but sometimes I sensed a little competitiveness in her pace.
  • Though I can't recall the reason, I remember once crying on my bed in Phoenix. Dottie came right up to me and licked my face to cheer me up. It worked.
  • Once I had to carry all 65 lbs of Dottie across a giant parking lot in Phoenix because it was too hot for the pads of her paws.
  • Dottie was a sun worshiper. She loved to spread out in the grass and soak up the hot sunshine.
  • One time Kristen brought over one of her foster dogs for a playdate. The moment we went outside, her foster dog just trotted into the swimming pool, thinking it was only a couple of inches deep. Down he went! FYI: Greyhounds don't float well since they have so little body fat!
  • The first time Dexter met Jeff, he clearly didn't want him to leave. Jeff was sitting on the couch when Dexter came up to rest his head in his lap and heaved a big sigh.
  • In Arizona, there was an especially large bee flying around. Dexter thought he would do his duty and chase it away. He trotted over to the bee, snapped his jaws in a fury, missed, and came running back into the house as if he was being chased by a pack of hungry cats.
  • Dexter loved to lean against us. He'd just lean in, begging your arm to be wrapped around him. We couldn't ever deny his hugs.
  • Dexter was especially gentle with Harper, and I often got the sense that it was in a protective sort of way. When Harper would get upset at a random barking dog during a walk, I'd always say "Don't worry buddy, Dexter will protect us!"
  • Dottie, Dexter, and Noodle bore their own track into the backyard in Seattle! Here in Utah, Dexter still loved to run, and for some reason it made Harper laugh so hard! Dottie, on the other hand, would often go back inside. She became antisocial in her old age!
  • Backyard picnics with the dogs begging for food cuddling with us on the blanket 
  • As mentioned in Noodle's post: The fact that they were there for our wedding in CA - I'm sure everyone who was there remembers Dottie and Noodle's Great Escape!
  • And who can forget the "bucking incident" as hilariously documented by Jeff
  • Though a pain at the time, I'll always remember the many many road trips with them including a Thanksgiving with Kristen in NM, several trips to CA, and of course our multiple out-of-state moves.
  • Dexter's ears could rival the softness of any puppy ears!
  • Dottie's nicknames: Moomooz (she had what I called cow spots on her chest), Moomoozers, Dotsalot, Skinny Minnie... but when she was in trouble, we called her by her full racing name: Dotsero!
  • Dexter's nicknames: Dexterious, Dexterious the Mysterious, Dexter the Perplexer, Cuddle Bear
  • Their collective nicknames: Mangies, Puppies, Mange-mo-my-moes (don't ask), Smellies (this one was well deserved... Dexter could especially clear a room)
  • The love they always had to share, especially when you most needed it

Sisters Dottie and Noodle reunited.
Dottie: "Oh no, not you again!"

Dexter snoozing a few days before the wedding

Driving to our honeymoon

The only thing Dexter loved more than eating... sleeping

Miss Priss in Seattle making it known that she hated the snow, though it was only a light dusting.

My Skinny Minnie. She was often on a hunger strike, but would eventually give in and eat.
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