Two Hundred and Three Days

Norah has been home for 203 days. That's just shy of seven months. I have been distracted from blogging by our new life at home. I spend every day grateful for our life together as a family, at home. We have our routines, and that helps us manage the level of crazy. We were not quite so organized at first. Of course, we are still a work-in-progress, but what family isn't?

Most days, I still have moments when I am caught off guard by my emotions. I look around me, and see what I've been longing for. Just about every morning, Harper wakes his sister with his enduring volume of a 5-year old boy. I hush him, but secretly love the normalcy of it. Norah and I have quiet time together while Harper is at school for a few hours. Today, it made me sob. It is difficult to describe; my tears aren't quite tears of joy or sadness. As I type, I gaze down at my daughter. She's lying on the carpet while gravity feeds her through her gastric tube. She fidgets with her toes, enamored with the Princess and the Frog (one of her favorite movies). She has no voice with the trach, but her fingers dance with babble like so many other kids her age with a hearing loss tend to do. She's learned so much sign language in the last few months. I look at her in awe. In awe that she is really here. In awe that I don't have to miss her anymore.

I think of what we would all be doing this time last year. Norah would probably be getting her bath at the hospital, a mess after being fed by her speech therapist. Harper and I would be getting dressed, with me counting down the hours until it was time to go visit our girl. I think of my aching heart. I think of Harper hiding from the hospital employees. I think of cuddling and holding my girl tightly, trying to squeeze in every bit of affection I could in our time there each day. I think of Jeff's extra long days: commute, work, then time at the hospital. By the time we got home, it would be quite late. We'd be scrambling for dinner and to get Harper in bed at a decent hour.

In so many ways, our life now is more difficult. I don't get out much. Something as trivial as picking up Harper from school is a huge production with medical equipment. I have learned to juggle a ton in my arms and strapped to my shoulders. I have learned to trip over cords, tubes, and wires without falling down or pulling on Norah. I manage her equipment and supplies. I manage all sorts of mail such as people saying we owe them money to medical records and appointments. Yes it is hard. That is just the tip of the iceberg. All this is done while standing in Norah's doctor, nurse, CNA, medical transport, respiratory therapist, physical therapist, occupational therapist, and speech therapist. And of course all of these daily things are made much more manageable with the help and support of Jeff and some select friends and family members. You know who you are. :)

But the single thing that truly makes all of these things doable is the love and gratitude we have for finally being together under the same roof. This love makes it almost easy. I look back down at my girl, playing with the fabric on the couch with her feet now. She dances to the movie's music. She is so happy at home, and has come so far.

This post is a scrambled mess of thoughts, but I felt like I had to get it out while I had a spare moment. By the way... Our first round of holidays together at home was PERFECT. 

I get by with a little help from my...

Today I did something probably long overdue. I met with a clinical social worker. The best part? She came to our house as part of the Medicaid waiver program. We already began to scratch the surface of my challenges, and I'm genuinely looking forward to meeting with her every other week. 

We talked about an array of things, and she was ecstatic to hear me rave about the relationship that Jeff and I have. Jeff and I aren't just husband and wife. We are partners. We are best friends. We laugh, giggle, flirt, cry to one another, vent to one another, comfort each other, and work together like peanut butter and jelly. Our strengths and weaknesses compliment one another so perfectly. We work so well because we came into this with a strong solid foundation. I could tell that hearing all of this was a breath of fresh air for our clinical social worker.

What else do "I get by with a little help from..."? The rest of my family and friends. Thank you all for such love, support, and understanding. As hard as it is for me to live in Utah, I sure am surrounded by amazing people, near and far.

THAT Feeling

It hit me while waiting for Harper to be dismissed from class. At about 1120 yesterday, I got the horrible feeling that Norah would be admitted to the hospital. She was starting to show hefty viral symptoms, and was inconsolable. I spent much of the day on the phone (in between kindergarten homework), and it was decided that Norah should at least go in to see her general pediatrician in Layton. 

To my surprise, at that very moment, one of my best friends Jaci was standing at my front door. We rushed to the pediatrician, but were late anyway. During the course of the appointment, Norah began to deteriorate. By the time we were loaded into the ambulance, Norah's heart rate was peaking at 180, and she was on 6 liters of oxygen. 

Though she stabilized a bit on the way there, she slowly became worse and worse. We decided to err on the side of caution by admitting her. I'm so glad we did. She had a rough night, spending more time crying and coughing than actually sleeping. 

So here we are just waiting. Waiting for her to get past this cold so we can take her home again. We were two days shy of three months at home without any admissions to the hospital. But here we are.. Hopefully not for long. 

There is a huge ray of sunshine though. My darling friends, the Packs, welcomed their three gorgeous daughters into this world. They are perfect and they are beautiful. They are at the hospital next door, but my desire to for them to be safe and healthy far outweighs my urge to run over there and snuggle on each of them. Hopefully they get to go home soon! 

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. 

iheartcolum5k

As mentioned before, our wonderful friends, the Pack Family, is hosting their second annual iheartcolum 5k in memory of their beautiful son Colum. I've mentioned the Packs in my blog before. I could go on and on about how much I adore this family. We have much in common, and while our experiences are not the same, we understand one another in a very special way. Our lives have intersected, and I feel so connected to them.

This year, the annual iheartcolum 5k will benefit Norah the Brave. The raised funds will help our family in so many ways. Norah will be two years old in July, and she still lives in the hospital. We're working so hard to get her to home for good, and then the next challenging journey will begin when tending to her medical needs at home.

Date: Saturday, June 29th, 2013
Time: 8:30 am
Location: American Fork, Utah
Registration: iheartcolum.com (this will guarantee you a t-shirt on race day)

More details are available at the registration website. If you can't make it to the race, arrangements can likely be made to get you a shirt so you can run (jog/walk/crawl) by proxy! Alternatively, donations here on this blog (using the donation button to the right) will be graciously accepted. And if you can't donate, simply passing on the event's information could greatly help. Thank you all for your enduring support, love, and affection.

Trust

Trust can be challenging for any parent when forced to share care giving duties with others... especially those that are outside of one's circle of family and friends. We trust Norah's care team to treat her like they would their own child. Though she is strong, she is also quite fragile. She depends on so many outside interventions, technologies, therapies, and treatments to not only live a full life, but to live at all.

Let me preface this story by stating that Norah is currently happy, healthy, and sassy as ever.

On Monday, the respiratory therapist assigned to Norah made multiple huge mistakes with Norah's ventilator. These mistakes persisted from 8am until I got there at 4pm. I won't go into detail, but I will say that these mistakes were completely hers. I do not blame SDCH; I do not blame nursing or the respiratory department itself. Despite the bi-hourly checks, nothing clicked in this RT's head to tell her that she had done something wrong. This therapist alone is at fault, and I honestly hope that she knows this. This is not a slight to her as a person. It is what it is.

So who do we turn to when our trust is broken? These mistakes could have potentially caused her permanent damage, or accidental death. (I hate even typing that...) What do we do when the person entrusted to care for Norah does something that could have been catastrophic? We turn to those we love. After notifying Jeff, I told two of my closest friends over text message, and without my asking for help, Cecily and Jaci were walking through the door of Norah's hospital room about ten minutes later. Boy were they a sight for sore eyes. Not only are they incredible nurses, but Cecily and Jaci are "Bulldog 1" and "Bulldog 2", respectively. They had to be sure that Norah was okay. They had to be sure that I was okay. They give us such unique support being that they are nurses, they are my friends, and they have become my sisters. I love those girls.

So what happens next? Well, an incident report was filed. It will be discussed by the doctors, directors, and corporate honchos. They will come up with detailed, actionable items that will help prevent this from ever happening again. Additionally, I had wonderful discussions with both the attending pediatrician and the Respiratory Director. They were both wonderful, especially the Respiratory Director. He was apologetic. He was angry. He has a sweet spot in his heart for Norah, and he seemed genuinely angry with Monday's events. SDCH understands that we put their trust in them. I really do have faith that they will be more vigilant than ever in paying attention to detail.

Trust is such a fragile thing. While I trust SDCH, I am so grateful that we've never missed a day with Norah. I hate to think what could happen if we weren't there daily - and that is true regardless of the hospital in which she lives. 

Living on Life Support

Most people think of the term "life support" as the means to an end. Perhaps that is true in most cases, but not ours. To us, "life support" is the means to a beginning. Norah recently had her half-birthday, turning 18 months old. She is definitely a toddler. She throws fits. She gets frustrated. She gets annoyed with her family. She wants to do everything her way and on her own terms. But yes, she is still on life support. She has a trach, a ventilator, a long-term feeding tube, and enough gear to start her own medical supply store. She lives in the hospital still, and our hope is to get her home by the time she turns two years old (but who knows if that will actually happen). While we try to live life fully and happily now, we sure look forward to breaking free of life support.

Jeff and I often daydream about our future. There are so many unknowns, as with all lives. We wonder if Norah will still be dependent on these medical devices when she goes to school. We wonder if she will choose American Sign Language or spoken word. We wonder when we will hear her sweet voice for the first time. We wonder what it sounds like. We wonder if she'll grow to be proud of her challenges, or embarrassed by them. We daydream about the day she is decannulated - the day she gets her trach out. It will be an overnight stay in the PICU, and it will be coming full circle. We wonder how old she'll be. At first we pictured her toddling around, all of her favorite nurses chasing her around the unit. But now maybe she'll be coloring in her favorite coloring book. Maybe she'll be reading a Harry Potter book. Maybe she'll be painting her toenails and texting her friends about how bored she is.

We daydream about Norah and Harper taking care of one another. He will protect her, and she will protect him. They will fight, they will laugh, and I can only hope that they will be close.

There is certainly another sort of life support aside from the medical type. There is the life support that requires the love of those around you to lift you up and help you get through tough times. There is the type that creates wonderful memories to draw upon when life gets difficult. Right now we live on both sorts of life support- the medical and the emotional. It is difficult, frightening, and completely beautiful.

A very wire-and-tube-filled photo of Norah during her recent
PICU stay last week. Her hair is amazing.

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.

Magic Wand

When I am asked by various people if there is something they can do for me, I frequently respond with, "Only if you have a magic wand..." I've often felt that there is little anyone can truly do to help us.

Yesterday I realized that these offers aren't about fixing our problems. They're not about taking away pain or tears. Instead, these offers are about helping take small burdens away. They're about bringing smiles to our faces. And they're about showing how much love there is in this world to share.

I was recently contacted by a wonderful local family, The Billingsleys. They wanted to do something special for sweet, brave, inspirational Norah by spoiling her silly for Christmas. They wanted to make this holiday extra special for our family. Yesterday we had the privilege of meeting Sarah, Brian, and their sweet son Bentley, who is just one month younger than Norah. Sarah held Norah for a bit, we all chatted, and they loaded us up with tons of gifts.

But it isn't quite as simple as that. Sarah and Brian reached out to friends, family, and coworkers to raise an astounding $500 for Norah's gifts. They proactively committed themselves to doing something special for a family going through a tough time, and I am so honored that they chose us. They deserve so much more recognition that I could ever hope to drum up.

We send the most heartfelt gratitude to all of those involved with this incredible act of love, especially the Billingsleys. You may not have had a magic wand, but that sprinkling of magic dust is going a long way. Thank you thank you thank you! You have helped us give our daughter the Christmas she deserves.

A Thankful Thanksgiving

Punkin Pie Time!

We had a lovely Thanksgiving. We cooked at home, then brought in some good eats for Norah. She had a taste of the mashed potatoes, made a sour face, then spit them out. The pumpkin pie was a different story. She gobbled it up, loving every bite. It was a ton of fun. As for Harper, he has been a very picky eater lately. He wanted nothing to do with the traditional Thanksgiving Day fare... well, aside from the pumpkin pie and pumpkin cheesecake.

Though I've said these things a million times before, I'm going to say it again anyway. We are thankful for so much. We are thankful for the modern machines and technology that sustain Norah in a way that nothing else out there could. We are thankful to the insurance that helps us pay for it all. We are thankful to the care and love we receive from all over. We have doctors, nurses, therapists of many varieties, CNAs, friends, family, and total strangers that send us love and affection. We have such a special family, and we don't know where we would be without any of these things.

So, I thank all of you for continuing to follow our journey as we test our patience, try with everything we have, and stay as positive as we can.

xo

The pie container doubles as a drum

Another Trip to the OR... and the PICU

Right out of the OR

No, I don't mean Oregon... I wish I did. In our world, OR is always Operating Room. Few knew that Norah was going back to the OR this past Monday for the rest of her granuloma removal and for replacement of her left ear tube that was plugged. The bad news? The granuloma had already grown back enough to block her upper airway again. ACK! The good news is that our ENT was very happy with the way it came out this time, and is confident that it won't be growing back quite so soon. Have I mentioned lately how much we love our ENT, Jeremy Meier? He's just so great.

We are always nervous for general anesthesia. We knew it would be a quickie but that doesn't matter. I always cry after we drop her off at the entrance to the unit. The walk back to the waiting room is a long one.  We had been expecting the whole thing to be outpatient, but he wanted to admit us to the PICU for an overnight stay. Such is life.

As usual, it doesn't take long for word to get out that Norah is back in the unit. One of the attending docs told us that she had gone to Norah's old room, only to find some other family in there. Ooops! This was not the first time that's happened. Even Harper is used to running in there, and has almost barged in on other people in there during other stays. Ooops!

In the PICU, Norah is always on the team with Nurse Practitioners in lieu of Medical Residents. This is a very good thing. They usually put kiddos on this team when they are recurring patients. Yeah, I'm pretty sure we fit into this category. They were all impressed with Norah's progress, commenting that her lungs sounded even better than her previous visit... which is good considering she had rhinovirus that last time. Norah was spoiled and snuggled, and Jeff and I were able to catch up with some of our favorites that we haven't seen in awhile. We were also teased for being back (cough-cough-Co-cough-ry-cough-cough), which of course makes us feel more welcome. :)

We spent the night in an almost zero-privacy room. Some call it the dungeon. Some call it the cave. I often call it "cootie corner" because that's where the "dirty" kids go during the winter months of rampant viruses and cooties. There were no cooties there this time. Norah was beyond happy to see her friends and fans, but she was not so happy about trying to sleep out in the open. She was restless, and so glad once we got back to South Davis.

As much as we love the PICU and consider it one of our home-away-from-homes, it's good to be back at South Davis. We're now looking forward to seeing how well she can do transitioning to the home ventilator. Hopefully we won't have any more obstacles along the way, but we know there is no guarantee of that.

Adventures in Mixed Media

Now that I have a dedicated space to bring out my inner artist again, I've really been enjoying so many projects when I have time. Which, you know, isn't too often, but it is so much easier now that I have this space. I've mostly been knitting, quilting, paper crafting, and even busting out with the paints and canvas!

In an attempt to channel my inner Angie, I wanted to do a couple canvases - one for Norah, and one for a very special someone. This was my first time ditching my precious oil paints for acrylic, and it wasn't so bad. I was really going out of my comfort zone with the mixed media. It took a conscious leap for me to "mar" the first painting with the die cut phrase. But after that first splash of Mod Podge, I was all in, and it felt great. Instead of channeling my inner Angie, I found just a different part of myself. 

Back when Harper was a baby, he was very difficult to get to sleep. We had to rock him and walk around with him. His fancy pants swing was not an acceptable substitute, and he let us know it. So I made up a song for him in an attempt to lull him to sleep. This lullaby carried over to Norah, now that the words held an even deeper meaning. Sometimes she resists sleep during our visits because she doesn't want to miss a moment of it. But I want her to know that when we sleep, we can dream our one sweet dream of us together, always. I used this lullaby as the focus of this first canvas, which hangs in our hallway at home. I may make a little one for her room, too.

 Materials: 16x20" stretched canvas, card stock (cut with my Silhouette Cameo), copy paper, acrylic paint, mod podge

We were first admitted to the PICU back when Norah was a tiny and frighteningly fragile three weeks old, by this awesome nurse. As we navigated our new life in the hospital, Cecily was always there for advice, support, and much needed laughs. She went from being our primary nurse to Norah's auntie. In fact, she was booted off of Norah's care team by the charge nurse team because she just became so close to our family. There is this song, that Cecily has dubbed as her song for Norah. It is so sweet and so perfect. I used my favorite photo of them in this canvas, along with quotes from the song. And check out that look between them. The love there is undeniable. Cecily is part of our family, and even Harper, Mr. Anti-Social, just adores his Ce-ci-wee.

 Materials: 16x20" stretched canvas, card stock (cut with my Silhouette Cameo), acrylic paint, photo, ribbon, Micron pen, rubber stamps & ink, mod podge

Finally Catching a Break

Sometimes I wonder when our family is going to catch a break. I figure I have good karma coming my way. I let people into traffic, I wait for pedestrians, I open the door for strangers, I go out of my way to be helpful and courteous to others. I don't have to tell my readers that we've had a trying time during this last year or so.

Well, we've finally caught a break.

We had an appointment with Norah's orthopedist on Thursday. Back in July, he fitted Norah for a hip harness to help push her hips into place. The amazing news? It is working. Her hips feel solid in place. The even more amazing news? This means she has no immediate need for hip surgery! Oh but it gets better...

Right as we were walking into the clinic at Primary Children's, South Davis' social worker called me. She let me know our insurance company approved our request to take Norah for a day visit HOME on Christmas Day. Yes, my wonderful readers, you read that right. For the first time since September 6, 2011, when Norah was only 41 days old, she will be home for a few hours to be with her family on Christmas Day.

Though we have never missed a day with her, we feel that we have missed so much of Norah's life, and it hurts. She hasn't been home since she was a teeny tiny newborn. She hasn't been home since she was struggling to cling to life. She is so different now. She's a toddler (though she doesn't "toddle" yet). She smiles. She laughs. She throws fits. She's still fragile, but nowhere near as fragile as she was the last time she was home with us. She will get to be in her new room of our new house for the first time. She will get to play with her Harper. She will get to roll around on the carpet - something so simple that she has never done.

It will only be for a few hours, and it will be so hard to take her back to the hospital. But it is going to be worth it. It is a dream come true. But there is more that will be bittersweet on this day. This day will also mark the one-year anniversary that our dear friends, the Packs, had to say goodbye to their sweet boy Colum. While my heart will be singing for the temporary joy of a few hours at home with Norah, it will be heavy with sorrow for the pain that my beautiful friends are enduring.

Here's to hoping that nothing gets in our way of this Christmas Day visit. No illnesses, no bumps in the road... nothing. Just a perfect few hours of bliss.

Back From a Rocky Week

Norah and Auntie Cecily saying "ta-ta for now".
Look at the love they share!

What a crazy week. Things were pretty scary for a few days, but when Norah finally started to get better, we were all so relieved. Man, that girl is as tough as they come. The day of discharge, Norah decided to spike a fever. Apparently she wanted to stay in the PICU. We were having none of that though. We did lots of labs that were reassuring, so we did an evening transfer back to South Davis on Monday (sorry to SDCH with our admit just 5 minutes before shift change!). Our "overnight stay" became a full week, but we weren't necessarily surprised. She is still showing symptoms of rhinovirus, but her nurses and RTs are staying on top of the extra care she needs. As much as we LOVE the PICU and the people there, they have too many dangerous cooties.

Coming back to South Davis this time honestly felt like coming home. I just dumped down all of my bags, unpacked, and gave Norah a very peaceful cuddle in the recliner. Like I said - the PICU peeps are our family. They know Norah better than anyone and have treated every situation both acute and chronic. But it is a very very very sad place. I met a few families during this stay that, as always, tugged on my heart. A family losing their less than week-old baby due to a perforated bowel. A heart kiddo and his mom, newly trach'd, super adorable, and facing a new life ahead of them.

But I also had an amazing experience while there. I met up with my friends, the Pack Family. Oh I love them so much. You can read Kelly's account of our meet-up here. It was so emotional, and so incredible. I felt honored to be able to help arrange things for them, as well as be there to cry with them as we went around the PICU. I'll never look at Bed 2 the same. Kelly and Ryan couldn't be there when their sweet Colum was in the PICU on Christmas Eve and Christmas Day, because they were fighting for their own lives next door at the U of U Hospital. Norah and I were there though, and I feel so deeply connected to this family. I love that they got to meet Norah, though she was pretty out of it post-op on Monday. She was in pain, bloody, sleepy, and loaded up with medical equipment, but they didn't see any of that. They saw our beautiful girl for who she is. It felt so good to be with Kelly and Ryan. Our situations are very different, but as I told Kelly, we've walked down paths with our families that few will ever experience or even understand. We could cry together, curse together, and share stories and experiences without judgement or awkwardness. It was wonderful. (Love you, Kelly!)

Norah trying REALLY hard not to smile!

So what's next for us? Well we will have a full round of clinic appointments with Orthopedics, ENT, Pulmonology, Ophthalmology, Endocrinology, and Augiology. (Is that enough "ologies" for you?) ENT is going to have to go back in to get the rest of that monster granuloma mentioned in my last post. Which means general anesthesia again. We're going to see if we can coordinate it with both her sedated hearing test and hip surgery if Norah will indeed need it. I can't wait to get this round of surgeries and procedures behind us so we can focus on transitioning to the home ventilator. I just want to bring Norah home. So badly.

Thank you all for your love and well-wishes over this really difficult week. Norah can use all the love out there, and we sure appreciate your thinking of us. 

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."

The Pack Family

I first crossed paths with the Pack Family on Christmas Day. Kelly and Ryan didn't know me, and I didn't know them. But I was in the PICU the day they lost their sweet 18-month old son, Colum, in a tragic car crash. I have thought of them often since that day, and finally decided to reach out to them, to share what was in my heart about the loss of their son, and how it personally affected me.

If you don't know anything about the Packs, a good place to start is here. Of course, if you haven't heard about them, you're either 1) not in Utah or 2) living under a rock. Their story was all over the news when it happened. Kelly and Ryan, with their son Finn (who's Harper's age) still have to work so hard every day to heal their bodies and their hearts. Just a warning: Kelly's blog will make you cry - and if you are brave enough to watch it, Colum's funeral video is also posted on there. It is quite possibly the saddest video ever; it will tear you to pieces. I heaved heavy sobs when I watched it, as it hit far too close to home. Our situations are so different, but the fear of losing my children sticks in the front of my mind and my heart every day in a very real, very unwelcome way.

Why did I email Kelly? Well, I have a feeling that her sweet boy Colum was with us when Norah semi-coded on Christmas Day. Here's the deal... back then, Norah was having frequent oxygen desaturations. She was turning blue multiple times a day, and always needed bagging to resuscitate her. But on this Christmas night, it was the first time in my recollection that Norah was able to work through it without being manually bagged. Her oxygen saturation had dropped really low (probably in the 50's), and her heart rate was something like 40. I turned her from her side to her back to talk to her, and she came back to us without further medical intervention. I am not at all religious, but I feel in my heart that Colum was there with us. You can read my email with the rest of the story, along with her feelings on her blog here. It is a very worthy read. And for those of you that have come here from Kelly's blog - welcome.

I have the feeling that our families are meant to be great friends. I look forward to meeting Kelly, Ryan, and Finn. I've said it before, and I'll say it again: life is fragile. Go hug your loved ones, and make sure you tell them what they mean to you. You never know which cuddle and kiss will be your last.

I'd Rather Be Boring

Oh what a night. Harper, Jeff, and I left the hospital around 7pm. We had a really great afternoon with a fun visit from Norah's best bud, Ava, and her family. We laughed, played, and compared medical notes. Even Harper was super social with Ava's sister, Aspen. In these photos, Norah is in the polka dots, and Ava is in the pink onesie. You're not supposed to compare (specifically with their condition), but Ava's parents agreed that Norah looked bigger, especially considering Norah is two months younger. Take that, insurance denial for growth hormone. It does work!

We had just enjoyed a late, hasty dinner when my phone rang a bit before 8. My reflex to the phone ringing is always nervousness. Yes, always. And this time, when I saw that it was South Davis calling, my heart sank.
It was Norah's nurse on the phone. They had walked in when they heard her vent alarming. She was slumped to the side in her bumbo chair, as if she had passed out. She was blue. Blue, blue, blue.

They pulled her out of the chair (which woke her), laid her down, turned up her oxygen, suctioned her, and talked her through it. She slowly came back. They weren't sure what happened, and why her oxygen saturation dipped so far down.

I tried to be rational. I reminded myself that there was a time when she'd desat more than ten times in one day, and tonight she hadn't even needed bagging. Jeff and I were unsettled, but we decided to give it an hour. I'd call after that hour before unnecessarily hopping into the car. Something nagged at me to go anyway, but I ignored it. Even though Norah hadn't had a true desat in months, I was trying to be rational, after all.

After the hour was up, I called. No answer. I called again about 10 minutes later, and someone answered after what felt like a million rings. The nurse was "not in the unit" and they took a message. Another hour later, and still no call... I called again, and she told me the nurse was swamped, and could she call me back? This was not acceptable. I told her no, that I was coming in. You better believe that got her nurse to call me from her cell phone, in Norah's room. By then, I was already on my way there, doing my best to drive calmly. I hate to say it, but I'm practiced at this sort of anxious driving.


When I got there at about 10:45, Norah was wide awake in the arms of one of our favorites there, our CNA Chris, and she was singing to Norah in a futile attempt to help her sleep. I like to think that Norah knew I was coming, and she was waiting for me. It is very unlike Norah to be up after 9:30pm. The photo (left) is dark, and probably impossible to see on some of your screens, but this is what I sent to Jeff. He was so relieved.

I rocked her for awhile, but she was still wide awake. Her vent was alarming again, so I asked the respiratory therapist to come in to replace part of the NeoSensor (the bane of my existence). When it goes bad, or when there is an accumulation of water, its reading becomes faulty, and delivers itty bitty breaths to her because it thinks she is initiating them when she isn't. Her rate was up to like 125 bpm. Go ahead, try panting that quickly and see how it feels. Not good. I could see and feel her poor little chest fluttering with these breaths, and trying to take some real ones in between. After they resolved the sensor problem, I moved her to my left arm (what I call "assuming the position"), and she all but instantly fell fast asleep. I snuggled on her until about 12:15, when I tucked her back into bed. I got home a little before 1am, where Jeff was still waiting for me, awake. Poor guy. But if I were the one at home, I wouldn't have been able to sleep either. I'm fortunate to have the best husband ever, who lets me fulfill my every need to be there with Norah, when I know he would love to be too. And yes, the poor guy had to get up for work just a few hours later.

So with all that drama, I didn't sleep till about 3am. I've had chronic nightmares since Norah was about 3 months old, and major bouts of insomnia. Though the antidepressants keep me from crying all day every day, I'm sure they don't help with my sleeping woes. The anxiety of our kids' well being, bills piling up, and now lately the added stress of trying to find a home fit for taking Norah home to, really adds up.


Everyone tells me that I'm amazing. They don't know how I do it. They send thoughts and prayers (our family is not at all religious, but we figure it can't hurt). But honestly? I don't want to be amazing. I don't want to be strong. I want to be average. I'd rather be boring. Of course the compliments and words of comfort are sweet, welcome, and even helpful. So please don't stop. I know life will never be "normal" for us, but I sure look forward to things being less crazy someday.

Gratitude and Celebration

Norah will be eleven months old on Wednesday, and she is as happy as ever. Her first birthday is right around the corner. When I think of what it's taken to get this far, I get emotional. I sometimes think about what would have happened if they didn't bring her back to us on that awful day in November. I think about life without our sweet girl, and I'm so thankful that it isn't reality. Some of my readers understand the loss of a child, and for that, my heart aches for you.

To those of you that have been there with us through everything, I thank you too. I thank you for the care you've given, the love and affection you've shared, and the effort you've made to have Norah in your life. And for those of you that have supported us from afar, I thank you too. Everyone's visits, words of support, and huge hearts mean the world to us.

Though it hasn't come without challenges, we've never missed a single day with Norah at the hospital. Our comfort is that she will someday come home. Once she does, we will still have a tough road ahead, but we know who we can count on; thank you. In the meantime, we're going to start planning Norah's first birthday party. Though her birthday is July 27th, mark your calendars for the afternoon of Saturday, July 28th!