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.

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.

A Beautiful Language

Norah is feeling so much better these days. She is more herself than she's been in several weeks. She's perky, playful, and is finally back to doing four-hour sessions on the home ventilator, twice each day. We've decided that a fair goal is to do everything we can to try to get her home before she turns two years old. Babies should get to come home before they are two years old, right? Well, I suppose that she isn't a baby anymore. She is very much a toddler (though she doesn't "toddle").

We're really grateful for many technologies that help our lives, including Norah's hearing aids. We just have to get better at putting them in consistently (us and her healthcare team included). Norah's hearing loss is moderate, which is simulated here if you're interested in getting an idea of what her world may sound like. Set your speaker volume by playing the "Normal" sample then adjusting as necessary. Then you can play the "Moderate" sample to see what various sounds are like for Norah without her hearing aids. Some of them make me a little sad, especially the music and nature sounds.

Like all parents, we want to give Norah everything that can possibly help her. Since she has been unable to speak with her trach (we've tried speaking valves to no avail), and has this hearing loss, we're learning sign language. She may decide to use it later in life, or she may choose to drop it. Either way, we want to give her every opportunity to learn and develop. To see if we were interested in their services, we were visited by a mentor from the Deaf Mentor program through the Utah School for the Deaf and Blind (USDB). Norah was nothing short of enthralled. She was enthusiastic about the deaf mentor, and even "babbled" by waving her hands around intentionally to simulate signing. Norah let us know that she NEEDED this. So we signed up, and should hopefully start soon. We'll be visited by a mentor once a week for three years... and it's a free service!

Norah's hearing loss is caused by her skeletal dysplasia. I could go into further science-y detail, but I won't bore you. I tend to geek out with this sort of thing. I'll give you the simple version, and just say that her hearing loss is permanent. So we're learning American Sign Language (ASL) from books, our USDB coordinator, speech therapist, my new favorite website Lifeprint, and soon we can add our deaf mentor to the list. We're really excited to learn this beautiful language, and Norah is too! Some of the ASL signs she has done are: eat (her first sign long ago), thank you, more, all done, bath, mama, dada, want, play, as well as her own version ("home sign") of "leave me alone". I have been teaching Harper how to say "Dad crazy". Hopefully Harper will have fun with it, too.

I hope you are all doing well during this exceptionally cold January (I heard that in Utah it's the third-coldest on January on record). My intention is to be back to blogging more frequently, but we'll see!

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.