Happy Miracle Birthday, Norah!

I interrupt this blogging hiatus to share my thoughts on the second anniversary of a very significant day.

My dearest Norah,

It has been exactly two years since that awful day. Your daddy describes it as both the worst and best day. He's right. We all stood together, teetering on the edge of life.

That day lives in my mind so clearly. Maybe it always will... Or perhaps it will fade a bit over time. But right now, I choose to recall it with clarity. It reminds me of where we came from, and all that we have. It reminds me that our love can do amazing things. The four of us are in this together, and we lend strength to one another without hesitation or sacrifice. 

These last two years have been amazing with you. I am so thankful that things happened the way that they did. If I had it to do all over again, I wouldn't change a thing. This is our story, and I love it. Thank you for being the bravest person I know, and certainly the strongest. You continue to amaze and inspire me. 

I love you.

Mama

iheartcolum (so much)

Saturday was more beautiful than I could have imagined. Despite our best efforts to pack a bit the night before, rise early, and get the kids ready, we were running late. We're still searching for rhythm in our new routines.

When we pulled into the parking lot, we noted quite the cheering crowd. The sight of all of those iheartcolum/norahthebrave shirts stole my breath for a moment. We didn't realize that they were cheering for us. Jeff's mom, my friend Michelle, and Ryan Pack greeted us at the car to offer help with out plethora of gear.

When we walked up, we were given a standing ovation that included clapping, whistling, and loud cheers. There was no mistaking the reason for this applause. They were shouting Norah's name. The crowd was dotted with familiar faces, but I assuredly missed a few friends who later told me that they were there. 

After more than a few tears (thanks Andrea B for the heaving sobs), Ryan sounded the horn for the race to begin.  We walked straight for Colum's headstone, where the finish line was. Before we knew it, the fastest of the runners were crossing the finish line. 

We cheered for finishers, tried to keep Norah cool, greeted and introduced people, took photos, and had a wonderful time. I had a quiet moment with Norah and Colum's headstone. I felt the gravity of Norah's survival. I was thankful for the miracle of her life. The reality is that she easily could have been in the ground, too. I especially remembered Dec 25, 2011, when Colum died and Norah began to code. Was he there helping her? I like to think so. 

I'd rather not know the Packs under these circumstances. I want Colum to be alive and full of mischief. I would rather he not be Norah's guardian angel. But "wants" rarely matter. This is the way things are. My heart hurts for this family. Though our situations are not the same, we both understand hurt, heartache, tears, and the need to be optimistic for your other child, regardless of how much you want to give up. We understand ridiculous comments from well-intentioned people. We understand not wanting to face the world, let alone the day. 

So we sang Happy Birthday to this beautiful boy. I feel so honored to simply have been part of the day. I look forward to celebrating his birthday every year at this annual 5k. And to those of you that walked, ran, registered, attended, volunteered, cheered, and/or donated: I thank you deeply. I especially thank the Packs! I wish there was a way I could fully describe how much you've all helped our family, without sounding like I'm whining or complaining about financial destitution. I will mention though that after we had Norah home for under a week, our electric bill was already $200... Hopefully that can give you an idea of what you've done to help us. You've helped Norah breathe. You've helped us all breathe. Thank you. 

A Dream is a Wish Your Heart Makes

For the last few days, having Norah at home has felt like a dream. It's been wonderful, stressful, tiring, and an absolute dream come true. 

South Davis gave us the most amazing send-off. We arrived at about 10:45am. Much of the staff wore pink tops, while others donned pink leis for our honorary code pink. (Thanks to all of you out there that wore pink! we loved seeing all of the photos of everyone celebrating from afar!) Two of her nurses, Nikki and Savannah came in on their day off. We were all ready as ever for the big day.

They presented us with gifts, including books that made us all cry. For me, it was a big ugly heaving sob. We packed the remainder of Norah's things, and switched her to our home equipment. The room was filled with so many people. As we wheeled out toward the elevators, the charge nurse Lorey called over the PA system to announce our "honorary code pink". She's not an emotional person, but she was crying. We all were. 

When we reached the lobby, it was packed full of both patients and staff. They clapped and cheered for us as we left the building. We had done it. Almost 23 months without a single day missed in the hospital. 

We took photos outside. Jaci Cecily, and Grami Patti (Cecily's mom) had come too. Cecily expressed to Bobbi (one of Norah's primary nurses) that she knew how much it hurt to discharge Norah. I gave everyone hugs. Once all loaded into the car, we insisted that they all have their own little goodbyes with Norah, including kisses. We were discharged. They are now our friends instead of our care team. HIPAA be damned, they were getting their kisses!

We pulled into our driveway to find pink tissue flowers decorating the house, along with a hot pink sign on the door that declared "CODE PINK". Cecily and Jaci had been pretty sneaky!

So how have we been doing? Fantastic. Sure, we've cried tears of joy and anxiety. We've already had to do an unscheduled trach change. We've been trying to find a groove with her cares. We don't have a nurse yet (aside from Cecily spending the night on Wednesday, and Jaci coming over on Thursday!). But I am in heaven. Last night, Jeff was holding Norah while I held Harper. It was perfect. It's hard to ask for anything more than having our entire family under the same roof. 

Thanks to all of you who helped make this possible. To those of you who babysat Harper during Norah's surgeries or rough PICU days... To those of you who donated money... To those of you who squeezed a bag to turn her color from blue to pink... To those of you who performed CPR on that awful day... To those of you who treated and cared for Norah, To those of you who have sent love and well wishes... I thank you all for your support and care. 

Please stay tuned as we tackle this next adventure. 

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. 

Our Perfect Christmas

This Christmas went down as the best ever. Norah came home for the shortest four hours of our lives. It was amazing. It was perfect. It was tearful. I can't begin to tell you all how meaningful this day was to us. Whenever anyone asks me if I had a good holiday, it is hard for me to hold back from telling perfect strangers all about how my daughter finally came home for four hours, after 17 months in the hospital. Not to mention that those 17 months have been spent on earning this day-trip. It was hard, it was worth it, and it is only the beginning of even better days to come.

She could sense something big was happening, even before
this elevator ride down.

After a fun Christmas morning with Harper, my mom and I snuck away to the hospital. Norah did her usual dance when I walked through the door, shaking her arms, legs, and head in excitement. As we prepared everything, she began to sense that something was up. I performed my mental checklist: vent, HME (humidifier), extra battery, spare trach, portable suction, a/b monitor, trach emergency kit, g-tube emergency kit, ambu bag, feeding supplies, formula, diapers, wipes, clothes, blankets, saline, and of course - my sweet girl all loaded into her carseat/stroller with her Inky beanie.

The package is secured. The eagle has landed.

Was this really happening? I don't think it totally seemed real until we strapped Norah and all her gear into our car. She knew we weren't in an ambulance. She knew we weren't in SDCH's transport vans. We were in our car. She was ready. I was ready. This was happening. When my mom and I came through the garage door with Norah, Harper and Jeff were waiting right in front of it, sitting on two chairs. We hadn't told him in advance (lest anything get in the way of it happening), and it was the best surprise EVER. "Norah! It's Norah! It's my beautiful-girl-baby-sister Norah!" Harper was running all over, back and forth between mom, dad, and sister. He kept petting her face and head. He kissed her several times. Norah could hardly contain herself either. She wanted out of that car seat. She wasn't crying - she was flailing her arms and trying to sit upright. She was using her unique communication to let us know what she wanted.

We opened Norah's presents in the living room, which was super fun. Thanks to the Billingsley's generosity, Norah made out like a bandit, with more presents to unwrap than the rest of the family combined. It was perfect. Harper opened them all for her helped, and she loved every moment of it. Norah was so comfortable. It was obvious that she knew she was home. We did the ASL sign for "HOME", and she seemed to know exactly what we meant.

In her very own crib with her Princess Peach figurine and
the stuffed frog sewn by her "Auntie" Heidi.

We then hiked up the stairs with Norah and all her gear. One of the first things on my list was to spend some time in her bedroom. I rocked her in the rocking chair, we laid her in her crib, and I sobbed. I remembered every time I rocked in that chair without her, crying, dreaming of that moment when I would feel the weight of her in my arms. I thought of all the times I looked longingly at her empty crib. And here she was: with us in her room. It was borrowed time, but I soaked in every delicious moment. My tears were mostly of happiness, but also of sadness, knowing that she had to go back, as well as sadness for all those times I was lonely for her in her empty bedroom. At least now I have these fulfilled memories to draw upon every time I enter her room, which is every day.

It was tough to squeeze everything into four hours,
but family cuddles on the bed was at the top
of the list.

We tried to fit too much into too little time. Jeff and I separately spent quiet alone time with Norah. It was amazing. We also, of course, spent time together as a family, just doing nothing. Cuddling, smiling, playing. Our hearts were whole.

But then it happened. it was already time to leave. My mom was gently reminding me of the time. I wanted to cuss her out. Of course, I didn't. I was simply frustrated that it was so short a visit. I didn't ever want it to end. She fell asleep on me. I procrastinated. Jeff and I acknowledged that it was only the beginning of the next phase of our lives. Norah will get bigger and stronger. With the success of this visit, it only meant that she was that much closer to coming home for good. Along with Norah's health, this was our focus for comfort. So we all loaded up back into the car, and took her back to the hospital.

Mama was procrastinating on going home.
She filled the time by taking photos of her
Sleeping Beauty.

Just before it was time to go, she fell asleep.
She knew she was home,
and she was so comfortable there.

We did the impossible task of unloading our baby to leave her there at the hospital. Again, she seemed to know what was happening. Norah is the smartest, most observant toddler I have ever known. In her way, she was the one reassuring us. She told us it was okay. She told us that she loved us, and had the best day ever. After a few hours, we left this smiling, satisfied face:

Norah gives us a parting smile as we say goodbye for the evening.

As she gets older, life in the hospital gets more difficult. She understands that we are not there all day and at night. She knows that this is her life. She seemed to make a mental connection between our leaving the hospital and the place that we took her to on Christmas Day. She seemed to understand that someday she will get to stay there with us, too. At least, I hope she understands. She still cries once in awhile when we leave after our daily visits. Or sometimes it's simply a barely detectable loneliness in her eyes. But it is there. 

We earned these four hours. We have worked damn hard and no one can tell us otherwise (IE Medicaid/ORS, but that is a story for another day). But now, whenever I am hurting, or lonely for my baby, I try to think of those perfect four hours at home. And I try to think of the future, when that time together will no longer be borrowed, but will be our everyday reality. Some day.

One last look at her room (top left window)
after our perfect Christmas together.

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!

Double Halloweens

Harper enjoyed two Halloweens this year. The first was at South Davis, and the second was at home.

It was a busy day, and it was a poor choice to start it with dentist appointments for both Jeff and I. My poor hubbs got one filling and had his top two wisdom teeth pulled. He hadn't anticipated how much it would hurt, and ended up spending most of the day stuck at home managing his pain.

In the afternoon, I took Harper to South Davis so he and Norah could go trick or treating together. They lined up all the patients in the halls of the first floor for their annual event of passing out candy to the community. Jeff's sister Emily brought her two kids so she could help me juggle Harper and Norah. I held Norah while her RT carted her ventilator and oxygen tank. She was a bit overwhelmed by everything, but not in a bad way. She just hasn't seen too many crowds quite like this. She was so adorable in her Princess Leia costume that was custom tailored by a friend. (Thanks Michelle!!) It fit perfectly, and was a million times better than it was when it came out of the package. My "costume" was a matching Leia hat that I had knit just for the occasion.

Afterwards, we went back home for a bite to eat followed by more trick or treating around the neighborhood. Harper sure hit the jackpot, even though he isn't a huge candy lover. It was a fun day despite having to do things in a modified sort of way with Norah at the hospital. Sadly, I didn't get a photo of Harper and Norah together... what was I thinking?!

I've been awfully emotional lately, and I can't quite put it into words yet. Maybe it will be anther post for another day. I hope you all had fun and safe Halloweens with lots of treats and not too many tricks.

Trick or Treat!

Norah uses The Force!

A Far Reach for Little Arms

View during practice,
taken by my brother Anthony
who also rows

My mom is amazing. That statement doesn't even do justice to her level of awesomeness. On Saturday, I received a very special phone call from her. She was out of breath, emotional, and it sounded like she was outside. She was calling to tell me that for the first time in her almost ten years of competitive rowing, her team, Solano Rowing Club, won first place. They, competing as a women's team, even beat the time of the men's team. The other teams didn't even come close to their time, as you can see in the photo below. In all their years, they had never won first place.

Here's the kicker - they dedicated the race to Norah.

While they sat in the boat, waiting for their turn, my mom had a moment of inspiration  She told her team about her granddaughter. She said that Norah lives on a ventilator, and has to fight for every breath. And if she can fight, they can too. My mom dedicated the race to Norah, and was determined to race it for her. And they did exactly that. One of my mom's teammates, her good friend Pat, said that she used Norah as a point of meditation, imagining her face in one of the passing windows, as if she was watching the race and cheering them on.

Yes, SRC was really that fast!
Note how far behind second place was!

During the award ceremony, my mom overheard some people chatting, saying that there had to be an error, and there was no way that team could have that time. She faced these people, politely pardoned her intrusion, and firmly said that they had the race official check twice to be sure. I'm so proud of my mom. She's not the confrontational type, but she wasn't letting anyone negate their feat.

It goes to show that Norah's little arms have a far reach. She inspires people from afar that haven't even met her. And for those of you that have met her, you know how incredible she is. Everyone just wants to be around her. There is something about Norah that makes you feel so good. I'm proud to be her mom... especially because she inspires me, too. So for those of you that ever have wondered how it is that our family bears this burden, it would only take a few minutes with Norah to understand just how exactly we manage.

Mom and my brother Anthony at practice

First place!

Our Fifth Anniversary

Has it really only been five years? Jeff and I have been through so much that it feels like more. In a good way, of course. On this special milestone, I wanted to do something special for Jeff. I made terrarium replicating our wedding scene. The sand, driftwood, and stone are from Pescadero State beach in California, collected when we took Harper there on his first birthday. The wine corks are from our wedding reception, and represent the huge logs of driftwood on which our guests sat at the ceremony. The twine was leftover from our wedding favors, and I painted the little figurines to look like us on that perfect day. The live moss, blue shell bits (for water), and fence were craft store purchases.

How did we spend our anniversary? We (I) couldn't stand waiting, so we swapped gifts the night before. Jeff's gifts took my breath away - he is just so thoughtful. The actual day was great, though we spent a little more time than I would have liked at the tattoo shop. Yes, I said tattoo! We designed this fun tattoo below, completely on our own. If you know us, you know that we are huge video game nerds. So the Peach and Mario are us, and the "high scores" are our anniversary date (with our combined initials), and the birth dates and initials of our amazing two children. We got the exact same tattoo, done by the same artist, who is really fantastic.

Five Years and a Scary Start

A couple months after Jeff's surgery in 2007

About five and half years ago, on February 5, 2007, Jeff had his 29th birthday. We had just met, he had just proposed a couple days prior, and on this day... his birthday... he had gone in for total spinal fusion surgery. His third major surgery in about a year (he had just had each of his hips re-done, six months between each surgery). And guess what? I kept a journal at the time, that I just re-found.

I was living in Phoenix at the time, while Jeff lived in Salt Lake City. His surgery was at the University of Utah hospital (where Norah was later born). That day was really difficult. I thought I'd be able to handle it while living a state away. I had no idea what we were in for. I received updates from his sister Emily, who I loved immediately upon meeting a couple months prior. Emily, this is what I wrote about you back then, when we hardly knew each other: "Today Emily and I cried on the phone together. She said that her mom was so strong, but that she's a big baby. I told her that we'd be big babies together."

The surgery took pretty much all day, and she was great about giving me updates. I wrote in the journal to Jeff on his birthday, "I had a rough time today. It was so hard not being there for you, and I wish that I had planned ahead." It was too difficult to be away from him. He was taken to the ICU post-op, and was there for a few days. He called me, but his voice was so scratchy from being intubated. It was too much to bear, so I booked a flight for February 8th. It was a good thing too, because in the wee hours of that morning, after he had been moved to the floor, he coded from a pulmonary embolism (a blood clot dislodged in his lungs). After being stabilized, he was returned to the ICU. While on the longest flight of my life, I wrote, "When you didn't answer this morning, I had a feeling that something was wrong. You just have to wait a little while longer, and I'll be there by your side to help you feel better... please don't leave me."

Jeff has a big family of ten. I should have been nervous to meet most of them, but things were so crazy that I wasn't nervous at all; I didn't have the capacity for it. I will always remember meeting his mom, Carol, for the first time. I stepped into Jeff's ICU room, where her deft hands were busying themselves with a crochet project. She looked up, and without a single word passing between us, we hugged. It wasn't a regular sort of hug, either. It was a clinging-to-hope-and-each-other sort of hug. It was perfect. We cried while holding one another, which woke my sleeping prince. On that day, a miracle happened, and Jeff smiled at me through his huge hockey mask. I remember being so grateful to the machines keeping him alive.

I went on throughout the journal, writing to him about why he needed to live. We had our life ahead in Seattle. We still needed to have our perfect wedding on the beach. We were going to have babies together. A doctor told us that we were lucky. They saw about a 50% mortality rate from pulmonary embolisms, and there was no obvious factor that showed who lived and who died.

My/our boss let me work out of the SLC office for a week. I would go to work, stay the night in a horrid green recliner at the hospital, then repeat. I was given gracious offers to stay with various people, but I didn't travel all that way to be with them. I was there to be with my sweetheart.

Jeff was in the hospital for a month. It was a long month. We were all surprised that he had to be there so long. Little did we know how much time we would spend just next door, at Primary Children's PICU. And little did I know how intimate I would become with medical equipment, similar to that wich kept Jeff alive. Equipment just like that which keeps Norah alive.


We are so thankful for everything we have. Jeff and Norah are the strongest people I know. I always say, that Jeff has more reason to complain than anyone, yet he never does. We can now add Norah to that statement, too. I love our sweet family. I wouldn't have wanted to have babies with anyone but Jeff. Our fifth anniversary is right around the corner, and as uniquely difficult as our life may be, it is filled with such love and joy that I never could have imagined.

September 22, 2007: Our perfect day at the beach.

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!

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.

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.

TTFN

Tomorrow is the big day: Norah will be transferring to South Davis in the late morning. We've begun to say our goodbyes, and it has been very emotional. We've become closer to the PICU staff than I ever would have imagined. They've been there to comfort us, to laugh with us, to care for Norah, and to save her life on multiple occasions. So for those of you from PCMC that are blog readers, this one is for you.

Our first admit to PCMC was in August. We went from a clinic appointment to the ED, to the PICU. We were one of those lost families that I've come to recognize by the bewildered looks on their faces. Little did we know that we'd come to feel so at home there. Norah has spent close to nine months out of ten there in the PICU. There are countless nurses, doctors, therapists, techs, clerks, dietitians, consultants, housekeepers, engineers, volunteers, and other miscellaneous staff that have made a world of difference in our lives. I love you guys!

Below is a little sampling of the goodbyes that we've been saying. There are still a few more big ones that will come tomorrow. I know that this transfer is a sound medical decision, but it's difficult to reconcile that decision with what's in everyone's hearts. I only have the best things to say about Primary Children's, and I will always think of that place as our second home. Norah has brought so much warmth and love to the PICU, and now it will be their turn to bring some sunshine to us via visits to South Davis. In the famous words of Tigger, one of Norah's favorites, "TTFN, Ta-Ta For Now!"

Norah and I with Pooh Bear aka Wes, Shawn (one of our Techs) and his wife Kim. 

Our nurse Cara, Norah, and I have bonded over guilty pleasures like Jane Austen, cheesecake recipes, British romance movies, and other things that shall not be named to such a wide audience. ;)

Norah wouldn't smile for the camera at first, but once Liz gave her a big smooch, she was one happy girl! Liz is another one of our favorite nurses. We have so much in common, it's unreal. Go Team Tofu!

I LOVE LOVE LOVE Andrea!! I am going to miss her so much. We had quite the tearful goodbye today that I'm not fully ready to talk about. Love you, Andrea! <3

Mother's Day and Outdoor Excursions

Mother's Day began with some tears. Everything is fine, but I had a good half-hour phone discussion with one of the PICU attending physicians. Our main topic was a possible transfer out of the PICU to South Davis Community Hospital. This caught me a little off-guard, as there has been little to no serious consideration to send her back there. The conversation simply stirred up some strong unpleasant memories of what happened the last time Norah was there. More to come on South Davis soon. Leaving the PICU is just big a topic for the moment.

The four of us had a great Mother's Day though. I spent it the only way I would ever want to - with my two wonderful kids and my amazing husband. Sure, it was at the hospital... but I didn't really care. All that mattered was that we were together. On Sunday, I did a whole lot of thinking about all of the mamas out there that have lost their children. It happens all too frequently around us in the PICU. It is a sad place, but we like to think know that Norah brings a whole lot of light to that unit. We sure are fortunate to have both Harper and Norah... and we sure are grateful that this Mother's Day was spent as a family of four, and not a family of three. My heart breaks for parents who have lost a child.

Enough of the gloom... So we have been spending time outside with Norah. It's kind of a big deal. The nurse takes her wagon full of gear - portable suction, trach bag, extra trach tubes, portable monitor for her pulse-ox, etc. The respiratory therapist wheels the extremely heavy and difficult to maneuver ventilator. I get to carry our sweet girl. We were taking her in the wagon, but not only is there little room for her, but it is too noisy and bumpy a ride for her liking. Whatever the princess wants, the princess gets.

From earlier in the week: They have the sweetest relationship right now. I love watching them play.

Enjoying the Angel Garden outside the north entrance at PCMC. It wasn't cold, but Norah didn't like the intermittent wind gusts in her face. She eventually snoozed in my arms.

Peekaboo!

We joke that some people may think this is what one of our favorite nurses, Cecily does all day. In truth, she is one of the smartest, hardest working, loving people I have ever met. She's an amazing nurse!

Nom nom nom: squash!

Harper zonked out pretty quickly after the long day at the hospital. He was such a good boy all day. The green dog is Scout (from his Auntie Kristen!), and Norah has a purple one, Violet. They're super cute and even say their names.