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. 

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

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.

Checking in

Yes, things have been beyond busy. Harper is loving kindergarten, and Norah is blossoming at home. She is more affectionate, sassy, and mobile than ever before.

Right now she has a cold, which, while dangerous, will hopefully be recovered quickly without any trips to the hospital. Her suction and oxygen needs have gone up, but lets just hope it stays manageable. 

We are still so appreciative of life at home with our complete family. Harper will randomly talk about how we get to "keep Norah". He often talks about how much he loves her, and how beautiful his sister is. 

Though blog updates may be sparse, you can always peek in on my Instagram photo feed to the right on the (non-mobile) site. Thank you all for your love and well-wishes!

Reality

It still doesn't feel totally real. Every now and then, it hits me: Norah is finally home. Sometimes it comes while we are cuddling or when we're doing her medical cares. Most times, it comes when I see her drinking in life. She revels in things that other kids her age wouldn't give a single thought to: the feel of crisp crib sheets instead of waterproof pads, the texture of carpet, the way her car seat strap tickles her fingertips, the dancing shadows of a spinning ceiling fan... She spends most of her day smiling.

Sometimes, when Norah is sleeping sweetly, I just sit quietly in her presence. Regardless of our hardships, just having her here gives the house such a peaceful energy. 

I wish I could accurately paint a picture of what our life is like at home. We are constantly going up and down the stairs. Organization and routines are still works in progress. We give her treatments. We are her doctors, nurses, respiratory therapists, and transport drivers. We have to put her through scary and painful things with some of her medical care. But we can sing to her, and take the time to comfort her in a way that only we can. And most of all, we can finally be together all the time. No more tearful evening goodbyes. No more having to explain to Harper why we can't "keep" his sister. 

As I write this post, I sit quietly in her room. It's the same room that I shed countless tears with empty arms. She's napping so peacefully, and I could hardly ask for anything more. 

Harper and Norah, enjoying our new life at home

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. 

Best Mother's Day EVER

I don't care what anyone says: my Mother's Day tops that of anyone else on the planet.

Last Tuesday, our insurance company told us that we can take Norah anytime, anywhere without permission, so long as it was restricted to a day trip, and not overnight (which is fine since she needs the ICU-only ventilator at night). This. Is. A. Huge. Deal. We're planning to take her every weekend: the zoo, the park, parties, and most importantly - doing nothing at all at home. But without question, Jeff and I agreed that the first thing we wanted to do was visit his family in Logan, a good drive northward. The next family get-together just happened to be on Mother's Day. It was perfect. It was difficult to keep this secret, but we knew that the payoff of a big surprise would be worth it.

Norah cuddling with her Grandma

We got to the hospital at about 10:45am, and didn't have her back until almost 8pm! She did great in the car, sleeping most of both ways. When we got to Jeff's parent's house, we parked on the far end of the driveway, and went through the garage, as to not give away our surprise. We were the first to get there. Jeff's mom opened the interior door to the patio, greeting Harper, then Jeff, then me, then.... NORAH! She squealed in delight, immediately fighting tears. She could hardly believe we had brought her with us. Jeff's dad said that the moment he heard his wife's reaction from the other room, that he immediately knew why.

Enjoying my in-laws' gorgeous backyard

It was so fun to sit in the living room, watching everyone do double takes as they came through the door, realizing that we had a very special guest with us. This was Norah's first time outside of her little 25-mile radius. This was the longest duration she had been away from a hospital since she was an itty bitty fragile baby. Everyone commented on how healthy (and beautiful) she looked. We ate dinner together, played, cuddled, went outside, and Norah met lots of new faces. As usual, it was sort of like having a celebrity in our midst. One of the most exciting parts of this day was Norah finally getting to meet her paternal great grandparents. G&G Gunnell had yet to meet Norah since they can't easily travel. They were thrilled to meet her, and fell instantly in love. It meant so much to Jeff and I that Norah spent time with everyone, especially them and her Great Grandma R (my mother in law's mom). The three of them are so wonderful, and I just can't say enough great things about them. In many ways, I like to think of Great Grandma R as the white version of my own Mima - my filipina lola that passed away a few years ago. And G&G Gunnell are the sweetest, most cheerful couple you'll ever meet. I just love them!

This photo sums up their relationship

As usual, navigating Norah's equipment was no easy feat... but this time we had loads of help. Every time we moved from room to room, we carried Norah (of course), the ventilator, the a/b monitor, the oxygen tank, the suction machine, miscellaneous medical supplies (maintenance and emergency types), and all of the tethered tubes, wires, and power cords. One of these days I want to hold it all and stand on a scale to see what it weighs. It's madness, but it's worth it. This girl does not travel light. More still, we had her diaper bag, and other random bits that were with us but not necessarily taken from room to room.

So much happiness in one photo

As the day came to a close, Harper said that he didn't want to take Norah back to the hospital. He said that he wanted her to stay and come home with us. I think he can sense that our days of living in the hospital are numbered. We're yet another step closer to drawing that "Get out of Jail Free" card from the deck. Norah didn't want to be left there, either. Jeff and I told and signed to her that we were leaving, and she started to cry. Can you even imagine having to leave your little toddler at the hospital every day? Can you imagine your visits being borrowed time? Let me tell you, it's the pits. But there's that light at the end of the tunnel. And we're ready.

Take a sad song, and make it better.

May 29th will mark one year since we made the big move to SDCH. Norah was much healthier than the prior attempts to transition to the long term care facility, and we had a better plan in place. But we were still nervous. We had mixed feelings about SDCH. It was there that she died for nine minutes. But it was the staff there who not only shared in the grief of that awful day, but also helped to bring her back to us.

As to be expected, we hit a few bumps in the road after moving back. One day in particular, Norah was having a rough day. I had a hard time getting in touch with the nurse that evening. After three attempts, I was in the car at 10:30pm to see what was going on. I had expected to see her alone, crying in her crib. Instead, I walked into her dim room at almost 11pm, finding Norah in the arms of her aide, Chris. She was rocking Norah, singing "Hey Jude" as a lullaby.

As my readers may or may not know, Jeff and I are huge Beatles fans. Jeff's brother Jared played "Blackbird" on his guitar as I walked down the"aisle" of our beach wedding. Our first dance as husband and wife was "Here, There, and Everywhere". We have been to see the Love Cirque du Soleil show in Las Vegas. To find Chris taking such sweet care of my girl was so touching. It was a very special moment that I will always remember.

Chris was one of the big contributors to our trust-building. She was there five (sometimes six) days a week, taking perfect care of Norah. She tended to her medical needs of course, but also to her emotional and developmental needs. While many have played their parts in Norah's development, Chris wins extra points in this department. When Chris was on shift, we never worried about Norah's needs being tended to.

Chris recently took a fabulous career opportunity at another hospital. While we were beyond excited for her, we were of course crushed. And let me tell you: everyone agrees that SDCH isn't the same without her. Even Harper asks about her regularly. On her last day, I presented her with a special gift. Made with bits of Norah, and bits of Chris, I hope this mixed media canvas will remind her of how she has changed Norah's life (and that of many others). Thank you, Chris. We love you!

A Long Day

With Norah's skeletal dysplasia, c-spine (neck) instability is a known risk. We had been told quite a few times that her x-ray films and MRI were "reassuring". However, we all wanted to formally clear her for c-spine stability, so we were referred to a pediatric neurosurgeon to take a look at the images of her neck. We generally prefer to cram in as much as we can when we visit Primary Children's... but this particular day was more taxing than most medical transports.

Little girl in a big machine

Prior to her appointments, Norah was happy and playful. Our first stop was imaging, for a CT scan of her neck. We had quite the entourage in there: a doctor, a nurse, a nurse practitioner, a respiratory therapist, two imaging techs, and the SDCH medic. She is really difficult to sedate. As expected, she resisted the initial medication, so we had to place an IV and give her something more. This second medication was really hard on her, as I'm pretty sure its effects were scary. Her heart rate shot up, but she was such a good brave girl. I had to hold her head while she went through the machine because she was bobbing her head with each breath, a definite sign of distress.

We spent a little time in sedation recovery, where she spiked a temperature. We stuck around there long enough for a dose of Tylenol and a quick (tube-fed) breakfast. We went to see the neurosurgeon next, who had ordered the CT scan. Despite having the detailed scan, he wanted additional xrays. By that time, we were running late for the orthopedic appointment, which was the original thing on our agenda for the day. So we went up there, took a hip x-ray in the clinic, then had our consult. We then went back down to imaging for the additional x-rays of her neck. Norah by this time was beyond upset, exhausted, and uncomfortable. She was tired of being poked, prodded, and forced into positions that she wanted nothing to do with.

We went back to neurosurgery yet again. After a long wait, we finally got back in to see the doctor. He gave us news that we did not expect. It was his opinion and diagnosis that while her cord looks to have plenty of space (so is not compressed), Norah has an unstable c-spine. We had gone there to get cleared, but were given the opposite result. He answered my questions (I could go into detail if you like, but this post is long enough as it is), which I greatly appreciated. But here's the thing: while I don't doubt that he is an extremely skilled doctor and surgeon, the reality is that there are no skeletal dysplasia specialists in Utah. Sure, this doctor may see every child in Utah that is even remotely similar to Norah... but that's going to be a tiny handful of patients.

Let me back-track a bit. What does c-spine instability mean? It means that she's at heightened risk for a spinal cord injury. What could happen with a spinal cord injury that high up her vertebral column? Well if something really bad was to happen, it could mean paralysis (from the injury all the way down) or death.

That isn't going to happen to Norah.

At this point, we've decided to stay the course (meaning no immediate surgery, and no collar). We'll go in every 3-4 months for more xrays (don't even get me started on the topic of radiation exposure) and a follow-up with that doctor. We'll make sure that Norah isn't looking worse. Hopefully she will improve. Hopefully she won't need fusion surgery. Hopefully this doctor is wrong altogether. Hopefully he just doesn't see enough of these skeletal dysplasia kids to understand that they are hypotonic, and every part of Norah's body is expected to be floppy for awhile. Hopefully he just doesn't understand that Norah's bones are and will be late to ossify, and his films don't show the cartilage  Hopefully we don't have to go all the way to Delaware for a second opinion.

Such a long day

One of the most draining aspects of the day was what it did to Norah. She was miserable. My heart broke every time she would reach for me to take away the sad, scary things that were happening to her. But I couldn't take those things away. All I could do was try to soothe her with words, try to distract her,  and tend to needs like suctioning, wiping tears, fanning her overheating body, and trying to help her be as comfortable as possible. I hate feeling helpless. Even worse, I hate that she wasn't getting the remedy from me that she was asking for. I'm supposed to protect her. Of course I know that no one can protect their children from everything... but it upsets me that she has to go through this. It upsets me that she doesn't understand why these things have to happen to her. It upsets me to think that this is her life, and this is all she knows. Our world lies within hospitals. These people and machines help us to keep Norah alive. It's a rocky start to what will be a trying life of more doctors, surgeries, interventions, and everything emotional that goes with it. But it's a life, and we do our best not to take that for granted. Though we often feel so weak, our strength comes from Norah's light. It comes from knowing that Norah is destined for greatness. For now, all we can do is fight for her and love one another with an intensity and purity like none other.

Growing Up

I've had several friends mention my lack of blogging lately. I know. I'm not going to say it's because I've been busy. I'm not going to say it's because I don't have anything to say. The truth is, it is hard to write when I grow weary of my own thoughts and emotions. I don't want to complain. I don't want to live in sadness, nor do I want to constantly feel like I have to force myself to stay positive. Well, I suppose I do the latter is just part of how I handle our situation. And in truth, it isn't always forceful. There are so many beautiful things and people in our life. It is just hard. And I feel like such a whiny baby when I complain about how crappy things are for us. Yes they are hard. Yes others have it more difficult throughout the world. Much, much, more difficult. It is both challenging and easy to maintain perspective. We see so much sadness in the lives of others, and while we sometimes feel like we have a bum deal too, we are energized and comforted by our perfect family and all the love around us. So I often feel conflicted about my feelings. How's that for a mouthful?

We have been off and on sick for the past month. Fortunately, Norah hasn't had to make a trip back to the PICU. We, along with the staff at South Davis are pretty aggressive at doing what we need to keep her from going downhill. That has meant steroids, albuterol when she's wheezing, extra suctioning, extra vitals, and extra measures towards preventing the spread of illness. Jeff has had to make some solo visits, and Norah is (sort of) getting used to seeing me with a mask. She hates the mask. I think she is a bit afraid of it, being that masks and gowns at SDCH typically mean that a trach change is coming. She tries to pull it off my face, and sometimes she cries, but I do what I can to remind her that I'm not going to do anything mean, and that I am just going to play and cuddle. The other good news is that she is still doing 11-hour sessions every day on the home ventilator. She needs to tolerate it 24/7, then also grow big enough so the FDA will "let" us take her home for good. She is up to 7.3 kg (16 lbs), and she needs to be 10 kg (22 lbs)... which is proving to be slow-going. The unfortunate thing is that the respiratory director still considers her to be the most fragile (respiratory-wise) in the entire hospital... and that is with a handful of newer babies that use the ICU ventilator, too. Hopefully he only says that because he is so attached to Norah, and has seen how scary things have been with her. After all, he was one of the key people that helped bring her back to us on quite possibly the worst day of our lives.

Norah is so funny lately. She loves to hang upside down off of her Boppy pillow or my lap. She laughs, she plays, and she is so very smart. She rolls everywhere in her crib, as well as sits up in it. I'm sure it's just a matter of time before we have to start putting the rails all the way up to the top. I hate that - it's sort of like a cage. She is still the cuddliest girl in town, she still loves to play with Harper's cars, and give him a smack when he tries to hug or kiss her. She always has mischief all over her face. She is social, but she demands that all new people earn her respect and attention. She is 20-months going on 20-years. I love her.

We are preparing Harper for kindergarten. I made a chart for him to put up stickers when he completes a kindergarten-type activity. So far it has been working out great. Just yesterday, we got crafty by each drawing pictures of our family of five (I am not pregnant - Norah's ventilator is our fifth family member). Next - and this is the big one - will be social activities. I've been on the hunt for local community activities that we can go to... hopefully I can find some that will work with our crazy schedule. We recently did the "Kindergarten Round-Up" at his school. He was super shy at first, but by the end of it, he was ready to run around with the other kids.

Both of our kids are really growing up so fast. I just can't wait to get them both under the same roof for more than a few hours. 

Hello, Springtime

This morning, I am sipping my coffee from my favorite place in our house: Norah's room. The Northern Utah snow has finally given way to warmer weather, and little signs of spring are here. Little birds are playing outside of Norah's window. If Norah were here with me, I would do my best to tell her what the birds sound like, since her naked ears wouldn't be able to hear them... And a current favorite activity of hers is dismantling her hearing aids.

Norah is the happiest kid I've ever known. She's content to play by herself. She laughs at her movies. She laughs at her goofy family. She plays silly games, makes funny faces, and knows how to artfully deliver sass with a playful smirk on her face that makes it impossible to be angry or annoyed. There has always been something about Norah that draws people in. She has a sort of intangible magnetic quality to her that most everyone feels immediately. She is intelligent, beautiful, and so very brave. How did we get to lucky to have this amazing girl as our daughter?

On Saturday, we went outside to soak up some sunshine. Norah was a little freaked out by the bright devil ball of light and the fierce 1mph breath-stealing breeze in her face, but we protected her from the elements. We were out there a good 45 minutes, and we all loved every moment of it.

Time to process some vitamin-D.

Norah gives her Uncle Jared the stink eye while
he and almost-Auntie Sarah read to her

Nap Time

We met with both Early Intervention and Utah School for the Deaf and Blind today. It was a somewhat busy afternoon, and these visits always leave Norah a bit worn out. Early Intervention is particularly good at stretching Norah to her activity limits... In a good way of course.

Both Norah and her roommate were in need of a nap. So we dimmed the lights, Jeff engaged Harper in some quiet play time (with his Nintendo DS), and I snuggled up with Norah in the recliner. It was so peaceful that she fell asleep rather quickly in my arms. At this point, I would typically pick up my knitting or read my Kindle. Instead, I decided to simply live in the moment, and rock my sweet girl while she dreamed against me.

I fell asleep with her in my arms. Sure, it was only 20 minutes or so, but I woke with tears in my eyes. They were tears of both joy and sadness. I've never fallen asleep holding Norah before. It was the sweetest and simplest of pleasures. Shared nap time was a daily thing with Harper. It was something I naturally took for granted. And here I am now, my daughter almost 19 months old, and I had never napped with her in my arms. My heart was fulfilled and lonely at the same time. I wish we could nap together all the time. But I'll take what I can get.

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. 

Someone I Love

I recently read a lovely poem on a friend's blog that I felt compelled to share.


Poem by Lori Hickman

Someone I love relies on me in ways you will never understand.

Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.

Someone I love is unable to advocate for themselves for things that most of us take for granted.

Someone I love will never have the opportunities that every child should have.

Someone I love will need unconditional love and support after I am gone - this frightens me to the core.

Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others.

Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.

Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.

Someone I love has needs that require more time and energy than I have to give.

Someone I love has needs that mean I am not able to meet basic needs of my own.

Someone I love has needs that have become the driving force behind major decisions my family makes.

Someone I love has changed me in ways I will never be able to describe.

Someone I love has taught me about love and about the really important things in life...

And still others don't understand what it is to be me.. they aren't living in my skin.

Tracheomalacia

Norah went in for yet another removal of tissue (granuloma) blocking her airway around her trach. Our ENT used a different method to remove it, this time actually taking out her trach tube to get at all the problem tissue. When he did, he noted that her tracheomalacia is much worse than he had originally thought. Basically, this means that her trachea (airway) sort of collapses instead of staying rigid and open like a straw. Every time he's looked in there before, it has been with the trach tube in there, so it helps stent open her airway. The only real cure is for Norah to get bigger and stronger. While growth is particularly slow for Norah and her diagnosis, it has definitely been the trend for answers to her medical problems.

What does this mean? Sigh, I don't fully know. But I do know that she will probably have the vent and trach longer than we had originally thought. I suppose we are already past that 12-18 month projected time with a trach. But if life with my girl means life with a trach and vent, then that's just the way it will have to be. We'll take her no matter what comes with it. At this point, it is all part of her, and these life-sustaining technologies have become a part of her that I am so very proud of.

Once in awhile, I am reminded of how great we have it. Other times, I am reminded that life is pretty tough. But it's not just our lives that are trying... life's difficulties are just part of the human condition. Everyone has their complaints - but as I've always said, should you ever feel down, take a visit to your local children's hospital. You will see hope and courage like you would not believe.

Recent losses in my and Jeff's extended family have reminded me that, while life is beautiful, it is also so sad, and so hard. So everyone, be careful out there. And take gentle care of those that you love. Life is fleeting, and we should do everything we can to take advantage of the beauty and love it has to offer.

Family Love

Poor girl's rash

With an abundance of both good things and not-so-good things, I've been a little distracted from blogging. We've had two sets of family members visit back to back, then we all got really sick. We are feeling much better now though. Apparently there is a nasty norovirus semi-epidemic going around in Utah. Norah's immune system also decided to respond with a benign but sad looking rash, erythema multiforme (don't look it up online - you'll regret it. Norah's isn't as severe a case as others). Her doctor said that it is often itchy, uncomfortable, or even painful, but my tough girl doesn't seem to be bothered at all by it. It's already a bit more cleared up than the photo right.


As for the family visits, my mom and brother Greg were here for Christmas! It was so wonderful to see them, and it was a total bummer that they ended up having to cut their visit a bit short. Then my "little" brother Mario came to visit for the first week of the new year. I love that he could be walking down the street, all by himself, and someone could point and call out - "Hey, you're Shauna's brother aren't you?" Despite having different dads, Mario and I look A LOT alike. The best part of their coming to visit (aside from the recurring gourmet feasts) was meeting his wife and kids for the first time. I loved Ally immediately. How could I not? They are so perfect for one another. She deals with his shenanigans, calls him on his crap, takes great care of him, and is always laughing with him. Their banter is not unlike that of Jeff and I. She brings out all of the good things inside of him that have always been there. These best parts of him are those that I remember from when we were kids growing up in a very difficult environment. He is caring, considerate, doting, and has developed into a daddy and husband to be admired.

We were all so excited when they came to meet Norah at the hospital. If they were at all intimidated by the environment at South Davis (it's a bit sad due to lack of visitors), or by any of Norah's medical equipment, it hardly showed. Mario loathes hospitals, but SDCH doesn't feel like a clinical, sterile, stiff hospital. It feels like something in between hospital and home, which is exactly what it is. I love sharing this world of long-term care with others. It opens their eyes to a place that most never would have known existed. While it can be very sad, meeting the kids there will show you HOPE and TENACITY like you've never seen.

Immediately upon meeting her, Ally's 2-1/2 year old daughter let me pick her up without hesitation. I love this little girl! She was fun, adventurous, sweet, bossy, adorable, and she sure loves her parents. Aside from her blonde hair and bright blue eyes, you never would have guessed she wasn't Mario's biological daughter. He is in every way her daddy, which was so refreshing to see considering what sort of step-father his own dad was. I think that fact is always in the back of his mind, pushing him to be even more of a better dad. So Fallon spent most of the visit eating snow from a cup. It was her first time in this much snow, and she loved it. Harper was a little territorial now and then, but in the end, he said he loved playing with her, and that she was his friend. I miss having her running around the house.

Daniel and Auntie Shauna

Daniel. What can I say about my sweet baby nephew Daniel? I am so in love with this little guy. And the feeling is definitely mutual. He immediately calmed down whenever I held him, and loved to sleep on me. He's three months old now, and is one of the cutest babies I have ever seen. He looks so much like his daddy. With our quiet cuddle time, I had more than a few moments to meditate. I loved being in that moment, cuddling him so snug against me. I thought about how nice it was to not be tethered to anything while holding a baby. If I wanted to stand up and take a few steps to the other side of the room, I could. If I wanted to run upstairs to get something, I could. For some reason this hit me more holding him than with other babies that I've held over the past year and a half. Maybe it was because I could see the family resemblance in him. Maybe it was because he enjoyed the cuddles as much as I did. It was difficult to stop my mind from wandering in sad places. I thought of all the "what if's" when it came to Norah... and that is a very sad road to let your thoughts travel upon. The thoughts are too sad to even write.

I would never trade my perfect girl for any other baby in the world. I love every part of her with every part of me. I take her as she is: nothing more, nothing less. But who doesn't wish for the best possible life for their child? With Norah, that is making the most of the hand we are dealt. But every now and then, a wisp of something catches my thoughts... and my mind goes there for a few moments. But when it comes down to it, I think of my girl, and I think of how amazing she is. I don't only think of the life that we have birthed to her; I think of the life that she has birthed to us. My life wouldn't have been nearly as fulfilled as it is now. As hard as this road is, it is ours. Norah has shown us a whole different world that so few are privy to. And I am beyond grateful for that.

Fallon and Harper. He let her sit on his lap!
Interesting coincidence: Fallon's middle name is Harper. 

Norah meets her Uncle Mario. She's wondering
who this smelly mama lookalike is.

Auntie Ally ponders how difficult life would be with twins.
Love Daniel's face here.

Aside from the head and belly, they're about the same size.
Can you see any family resemblance? 

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.

Miracles

Recently, one of Norah's PICU nurses whom I consider a friend, clipped a quote from a magazine for me. I'd like to share it with you:

It is a miracle if you can find true friends, and it is a miracle if you have enough food to eat, and it is a miracle if you get to spend your days and evenings doing whatever it is you like to do, and the holiday season - like all the other seasons - is a good time not only to tell stories of miracles, but to think about the miracles in your own life, and to be grateful for them.

     -Lemony Snicket, The Lump of Coal

Today I was thinking about my miracles; just about every blog post of mine shares a sampling of them with my readers. It is well known that Norah is our miracle. She touches the lives of everyone she meets. She inspires while instilling happiness, hope, and love. But as I thought about this quote, I realized something else too. That while Norah survives and thrives during these hardships, that Harper is our miracle, too. Call it luck, science, fate, or divine, it is a miracle that Harper landed on the other half of that 50/50 chance of inheriting the same skeletal dysplasia that Norah did. And while I didn't go into detail with him, I told him this today. I squeezed him tight and explained that he is a true miracle, something totally amazing and priceless. It is a miracle that we have two strong, beautiful children.

Jeff is a miracle, too. I can't imagine what would have happened if he had been born as severely effected as Norah. Medical advances sure have come a long way. Those are miracles, too (shout out to science!) And all of the things that led to Jeff and I meeting, then leading to our falling in love... true love... is a miracle. I know this is all super sappy, and super cheeseballs, but I'm going to share another quote that made me feel a bit emotional, from one of my current favorite TV shows, Once Upon A Time. I like to think that this explains why Harper and Norah are so incredible:

...what you are: the product of true love. That's why you're powerful. 

      -Mr. Gold, Once Upon a Time

We all have everyday miracles that we should be thankful for, big and small. What are yours? 

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