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.
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