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

It's Happening

'Tis the season for goobers and viruses, which means it's also hermit season.  We don't mind though, because the kids are both doing amazing. Harper is in love with school, and has already learned so much. Norah is taking huge leaps, too. 

For awhile now, she would get around the house by scooting on her bum. This was tricky while tethered to her ventilator. She had some successful trials off of the vent with a little attachment that moistens and warms the air and bleeds in a little extra oxygen. So we decided to take a big leap. On Sunday, we let her wear this attachment (referred to as an artificial nose) all day. She did amazing. She also did amazing all day Monday. And she'll do it again today. I put her back on the vent for "naps" and overnight, since she definitely still needs it while "sleeping". So this is a huge step. HUGE. 

We have also dropped her "dinner" tube feeding, as she has been loving meals by mouth at dinner. We've even been able to graduate from her eating on the floor (a familiar place), to the high chair. It's been a lot of work to get her to eat by mouth, but it's happening. It's all happening. 

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.

Enough

It's been a rough couple of weeks for us: a hospital admission, pretty bad colds for all of us, impossibly painfully tight finances accompanied with lots of unpaid time off work, a huge unresolved misunderstanding with one of my family members (who's love and support I need right now more than ever), dietary issues, and now to cap it off, a really hard-to-swallow questionable diagnosis from one of Norah's doctors. He thinks that she needs spinal fusion surgery at the very top of her spine (C1 & C2). This is huge. This is life altering, and totally risky... and I just don't fully trust in the diagnosis.

So we are going through the motions for a second opinion in Delaware. Yep, Delaware. We are sending her radiology images to them to see if we can prevent a trip across the country with a girl that does not travel well or light. I'm not holding my breath. So, why Delaware? It's all for this brilliant man. His entire population of patients are those with a huge variety of skeletal dysplasias, where as the doctors here only have a small handful of patients with Norah's condition (the many different skeletal dysplasias can be vastly different from one another). So we don't just need specialty care - we need sub-specialty care. There are few places in this country with experts on skeletal dysplasias. People from all over the world travel to see this doctor, and with good reason. It's unfortunate that so few specialists understand Norah's condition... but we are so grateful for those that truly try (like our ENT). So if a costly trip to Delaware may save our girl from an irreversible invasive surgery, I'm all for it. She may still need surgery... but even if she does, I'll rest much easier knowing that only the best hands and minds are taking care of our girl.

So why the title of this post? I've had enough of being sad. I've had enough tears. I can't sustain it anymore. I'm putting on my big girl panties and facing issues with my head up. I'm going to focus on my health. I'm going to take care of my family. Yes, there will be moments of sadness, but I will hold onto the beauty and good in our world. I won't let others get me down. Jeff and I had a wonderful talk last night about what we want, how we want to feel, and how we will achieve our goals. We're so optimistic right now.  And what better teammate than my Jeffrey? I've had enough of the blue, and am ready for happier days. This seasonal change is the perfect time to start, since autumn is my favorite. I'll close this post with the motto of special needs families everywhere: I can do hard things.

Pennies by the Inch Campaign

Miss Norah the Brave was selected out of thousands of Primary Children's patients to be this year's featured story for the Pennies by the Inch campaign. It is their only door-to-door fundraiser, where her story is now printed in 500,000 brochures. Her story is of hope, bravery, and love, and isn't over yet. She has a long, wonderful future ahead, that just happens to include more surgeries, hospital admissions, ambulance rides, x-rays, labs, treatments, etc. But it also includes countless laughs, cuddles, sass, and lots of love.

Our girl is incredible. We're honored to have been selected as the featured story this year. You can see the story included in the brochure here. I encourage you to consider a donation, even if it's just a penny... because every little bit adds up. With our 10+ months that we spent in the Pediatric ICU at PCMC, We have directly benefited greatly from the donations given to this campaign. The staff at PCMC is wonderful. They saved Norah's life time and time again, and we will continue to lean on them for fantastic care that is delivered with such a personal, caring touch. 

A Quick Stay

That was a quick one. We were discharged from the hospital yesterday. It hasn't been the first time that I felt a nagging tug that they were going to make us stay. It is more the sort of feeling you get in a nightmare than a true suspicion. My brain knew they wouldn't make us stay, but my heart didn't quite get the message. I suppose that comes with having spent close to two years in the hospital.

Norah is doing much better now that we have albuterol to open up her lungs. Yes - the same albuterol given to asthmatics. She doesn't have asthma, but she sure benefits from the bronchodilator. Norah is so happy to be home. That night in the hospital, she (we) only slept for two hours then an additional hour and a half. The crazy girl fought sleep during the day, too. She was too worried that the masked and gowned people would come do something to her in her sleep. Of course the coughing and crying didn't help.

I'm so thankful that I listened to the mom-voice in my head. I simply knew she was going to need to go in. And I listened before things got too scary. What did it turn out to be? Rhinovirus. Yes, the common cold. But for us, the common cold is scary. It used to always mean a PICU stay. Norah is getting stronger, but apparently a cold still means a stay in the hospital. It was a mostly inevitable kindergarten cootie. I just wish I could program everyone's brain about illness prevention with hand hygiene, covering coughs and sneezes, sanitizing surfaces, etc. Alas, I know that I can't expect everyone to do it. So we'll continue to do our best to protect ourselves.

Thank you all for your well wishes these past couple of days. Though we'll be mostly hiding at home until we're completely better, we are definitely on the mend, and glad to be home.

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! 

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!

Respite

Those close to me may be growing weary of hearing me complain about being exhausted. Jeff doesn't complain much, but I know he's just as tired as I am. How tired? Well, I'm far more tired than I ever was taking care of either of my kids when they were newborns. It's sort of like when you try to do a 18-hour road trip in one sitting. But not just one night. Maybe it's like doing a road trip like that every day for three weeks.

Norah has tons of gear that she needs with her at all times. I refuse to force her to live in her crib, so that means hauling everything from one floor to the next multiple times each day. We have three sets of split-level stairs, though I don't think Norah's been all the way downstairs. In the morning we go upstairs for her bath. Back downstairs for trach cares and getting dressed for the day. Further downstairs for playtime. Upstairs for her nap. Back downstairs for more playtime. Back upstairs after more trach cares and getting ready for bed. Rinse, repeat. Each time we move throughout the house, it takes 2-4 trips to get everything. Of course that all depends on how well my mind is operating, and if I've forgotten something. We've come up with a system for her medical gear, but that's not accounting for extra trips to grab non-essentials. Then in between there is much more stair climbing... Harper has become quite the helper, occasionally retrieving things for his exhausted parents.

I should add that Jeff has been amazing. When he gets home from work he makes dinner. He does the dishes. He takes care of all the things that I intend to do, but rarely have energy for. And when we don't have a nurse, he takes the night shift, telling me that it's more important that I'm able to take care of the kids the next day. I sure hit the jackpot when it came to Jeff. My friends want him to give lessons to their future husbands.

So we've been tired. Super tired. It was to the point that our bodies were hurting because of the exhaustion. So I called our nursing company, and scheduled the respite nursing hours that we qualify for based on Norah's technology dependence. Last night, Norah's nurse came at 9pm instead of 11pm. She was a new nurse with no ventilator experience, so took extra training. You better believe once we were done with training, we pretty much passed right out in bed. Hopefully they'll start coming most nights at 9pm. It made a huge difference. Don't get me wrong - I'm still super tired, but I now feel like I can function a bit better than before. I have a hard time asking for help, but when it comes to Norah, I've learned that I need to. It's not about me. It's about her.

My last post was quite the downer about our home nurses. I'm glad to say that things have been going quite well. That particular nurse and I had a brief but effective discussion the next night, and I felt much better about everything. All of the nurses have been friendly and willing to learn, which is the most important thing.

Sorry about lack of photos lately... but if you are on the web version of my blog, you can see my latest Instagram photos to the right. If you have Instagram, you can follow me @mama_nauna.

PTSD

I've heard multiple parents of medically fragile children talk about PTSD (Post-Traumatic Stress Disorder). It's something I've learned a bit about over the last two years. I take anti-depressants and have lived with the chronic nightmares, but every now and then, PTSD rears its ugly head at unexpected times. I don't mind if this long post goes unread, I simply need to get out my thoughts and emotions.

Let me start by saying that private duty nursing (PDN) has been a huge help. Aside from some scheduling issues, we have been able to get (a little) more sleep, and pass off a few duties to Norah's nurses. Norah is pretty stable at night. She only needs monitoring, suctioning, humidifier refills, and assessing throughout the night. To that, we've added some cleaning items, a couple feedings, a respiratory treatment if she wakes before the end of the shift, and the like, to the nurses' duties. It is important that Norah gets plenty of rest at night. We give her more ventilator support at night than in the day. Every little activity during her waking hours are a workout, so we need her to conserve her energy as much as possible. After all, growing is a key part in her overcoming her respiratory issues.

So last night, we had a new nurse. I trained her but had the nagging feeling that I was forgetting something. Also, she had very few questions. (Yes, I am now going to put a written document together detailing Norah's needs so I don't forget anything in the future.) I fell asleep around 1230 or so, but woke at about 330 to the sound of Norah's labored breathing in the monitor. It was the "sound" of her crying. I went downstairs to find that our new nurse had just completed trach cares (cleaning the stoma/hole and neck, changing the trach ties, and placing a new drain sponge). What I neglected to tell the nurse, was that we simply let Norah sleep through the night. She's always been a great sleeper. She may wake a couple of times if she needs to be suctioned, but will otherwise snooze sweetly. We need her to.

She commented that Norah didn't seem to like trach care. Norah was sobbing. As I comforted her, I kindly said that she hated trach cares in the hospital, but since coming home, Norah doesn't mind when I do it. Jeff has said many times in these last weeks that he is amazed when watching me do Norah's trach cares. She looks up at me with trust in her eyes. If she cringes at all, I talk to her sweetly, or sing to her gently. She seldom cries when I do her cares.

So Norah was traumatized, taking in short gasping breaths. I was traumatized. I had found my girl beyond upset, and the nurse stepping away with the medical supplies. Something about it stabbed my heart. Then I realized what it was. You see, I don't blame the nurse. She was only doing her job to the best of her knowledge, training, and skill. After all, it had been my responsibility to tell her that I did the twice daily trach cares during Norah's waking hours. The distress that I felt was a culmination of all of the times that we've had scares with Norah. It was every time she turned blue. It was when she died for nine minutes. It was every ambulance ride. It was the middle-of-the-night phone calls from charge nurses, telling Jeff and I that we needed to come in. It was her inability to vocalize her fears and pain. It was helplessness while watching her struggle. It was every painful procedure she endured while we did what we could to soothe her. It was sheer exhaustion caused by two years of stressing about my daughter's life. It was PTSD. (I could link many more old posts, but you get the point.)

The nurse was quite well-intentioned when she verbally confirmed that we were new to private duty nursing. When I said that we were, she stated that when Norah gets "better" about trach cares, that it will help give us acuity points. For each item requiring the nurse's attention, Norah gets a certain number of points. These points are what help qualify her for the Medicaid waiver. It allows Norah to have medicaid due to her technology dependence instead of her family's financial status. There is no way I will put Norah through that in the middle of the night - even if it means that we had to give up nursing and Medicaid altogether. This isn't about relinquishing control. Norah needs security, confidence, and sleep much more than she needs those other things.

I like to think that we are very easy-going about Norah's cares. We aren't neurotic about specific things at specific times, or about nurses doing certain things a certain way. We've learned the hard way that the few "rules" that we have must be documented and outlined. Who would have thought that letting her have a good night's sleep was one of them?

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. 

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. 

Easy As Breathing

You have likely heard of the phrase "as easy as breathing", or "as natural as breathing". For some people, breathing doesn't come so easy. When Norah was a newborn, she was constantly telling us that she needed help breathing. Even today, it is loud and clear when something is wrong. She sometimes grabs our hands to put them on her suction ballard when she needs suctioning.

Norah breathing without the
ventilator!

But today, Norah accomplished something that had multiple people (especially me) crying years of joy. For twelve minutes, Norah was breathing without the ventilator. 

We connected what is called a trach mask to her, instead of the ventilator. The trach mask simply expells moist oxygen into the airspace just outside of her trach. So with each independent breath, she was getting an extra puff of oxygen. Think of an oxygen mask that covers the mouth and nose, but designed for the trach instead.

Norah has tracheomalacia, also referred to as an overly floppy airway. The trach tube stents her airway open while the vent opens up her airway and lungs. Because of this, they considered that she may fail the trach mask trial. I knew she wouldn't. I knew she could do it. She is strong, brave, and amazing. Most of the people in that room had seen Norah at her worst as a baby. We're all amazed at how far she's come. But what's more, is that we are so excited about the future. Norah will someday come off the ventilator. Then she will someday be able to be trach-free. She may have hardships ahead with her multiple medical needs, but there is hope. We have never given up hope on Norah. Breathing may not be easy, but Norah perseveres. We all do. 

PS: She will be home with us in less than one week!

Code Pink!

For the overly superstitious out there, you may not want to read this post. Some believe that assigning a discharge date will jinx her chances of coming home on that date. 

The only things that could delay her coming home on our target date would be a problem arranging home nursing (for weeknights), or some sort of acute illness. 

As it stands, our goal is to discharge on Tuesday, June 18.

I've long carried an empty threat of "pulling a Code Pink", which is the standard hospital code for when a patient goes missing. Many of Norah's caregivers have joined in on grandiose schemes to bust her out of the hospital. In honor of finally getting to pull our code pink, we would love for everyone to wear pink on our discharge day. (Credit for this idea goes to one of my bestest friends, Jaci!) I'll keep you all posted on the day to wear pink. 

Readiness

Norah's ventilators: a sight for sore eyes.

This is really happening. Tomorrow morning (Tuesday), Norah will have been on the home vent for two weeks. On Wednesday, we'll be formally setting a discharge date. A DISCHARGE DATE!!

Am I nervous? Yes and no. We are so totally ready, but of course I have a natural amount of worry. Norah's life will now be in our hands. The reality of having a child dependent on technology and interventions, is that bad things can happen anytime and anywhere. They can happen at home or the hospital. They can happen in bed asleep or awake and active. They can happen under any circumstance. We have lived with this stress for the last two years... The only difference is that we'll now be the healthcare providers. And I couldn't be more thrilled.

We have had a lot of time to learn everything we could about Norah's needs. I can't tell you how many times I've been asked (even by doctors) if I'm in healthcare. I always giggle and tell them that it only seems that way because I know Norah really well. So we've learned to care for her, just as one would hope any parent would care for and love their child. Norah's needs just happen to be a little more complicated.

Prologue

Someone might crawl soon!

Has this past two years been a prologue of what may be ahead? I'm not sure... but I do know that it is not our entire story. Despite all we've both endured and enjoyed over the past 22 months, we've only just begun. And now we look forward to the next chapter.

Norah is coming home. 

No - she isn't coming home today, but the end of our hospital stay is in plain sight. Norah has now been on the home ventilator since 8am Tuesday. If she can stay on it continuously for one month, our girl will finally discharge to home. There are many tests and trials ahead for the next month, but everyone is very optimistic. I told Jeff that it will take quite some time at home for me to truly believe that no one is going to take our girl away from us.

This is not a guarantee that things will go as hoped. She could get sick. She could simply not do well on the home vent for so long. Her recurring labs could come back terrible. We don't know what will happen. But again, we're all optimistic.

I believe in Norah, and I believe in our family. We're almost there. Coming home will not be easy. I will be her nurse (and we joke that Jeff will be our CNA). We will be doing a different sort of juggling, but it will still be juggling (likely with less sleep involved). But our family will be happy, healthy, and together... and that is what matters. Thank you all for your continued generosity and support. It was my (somewhat) secret hope that Norah would be home before her second birthday, and it looks like that just might happen. I may not have brought a baby home from the hospital, but I'll take that silly, sassy toddler without any complaint. Let the countdown begin.

Sleeping sweetly on Saturday's day trip...
for the first time ever in her own crib at home.

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.

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.

Hope

For some time, it had been my secret wish that Norah would be discharged to home by her second birthday. It doesn't look like that is going to happen. Try as we might to not get our hopes up, it's nearly impossible not to. There was a light at the end of the tunnel, but we were only seeing a lamp, not the exit.

Norah is a slow grower. We know that she grows at about half the rate of other kids her age. She is doing amazingly well on the home vent (now on it 16 hours per day), but we are still waiting for her to get big enough to meet the FDA minimum weight to take her home. However, we have a medical equipment company likely willing to let her go home when she's at the flexible end of that weight goal. So we may be able to take her home at 8kg (17.6lbs) instead of 10kg (22lbs). This is a huge deal. It means that while we won't be home by her second birthday, we will likely be home sometime this year. It's the homestretch. There is that light at the end of the tunnel.

I don't want to get my hopes up, but it is unavoidable. I don't like telling people this because things tend to not go as planned. I'm only blogging about it because I'm so often asked about a potential discharge date, and I have a hard time not being honest. So for now, we will continue on our path. We will continue to play and laugh together while at the hospital. We'll continue to long for her when we are an incomplete family at home. We will continue to make the best of things, and continue to hope... Because I suppose that getting our hopes up is all part of the roller coaster that we're on.

Stoma Revision

Every few weeks, Norah's trach tube gets changed out. It helps prevent infection while also helping make sure the tissues don't decide to grow too much around her trach. Norah is NOT a fan of trach changes. I think they are painful and a bit scary for her. Without going into gruesome detail, I'll just say that blood, sweat, and tears are almost always involved involved. A few weeks ago, when they respiratory department tried to change her trach, they could hardly get the old one out. Which naturally meant that the clean one could barely get in either. Remember what I just said about tissues growing around her trach? That had clearly happened.

They called our ENT, who got us into the operating room that very week. He is so amazing, and takes great care of us. We were surprised at how fast everything happened, but before we knew it, we were prepping for another overnight stay in the PICU. In addition to scopes and removal of that recurring granuloma tissue, our ENT did a full tracheal (airway) stoma (hole where her trach goes) revision, where he basically cut away scar tissue and opened her stoma wider. Hopefully this will slow down that dang granuloma growth, too.

Resting after some morphine.

Recovery was much more difficult than past trips to the OR (this is Norah's sixth, for those keeping track). Her stoma was raw, but is now healing nicely. She was in so much pain when she woke from anesthesia, that we had to give narcotics this time. She would just restlessly toss and turn in my arms, crying from the pain. Fortunately, she perked up right before I went home, and we had one of our most favorite nurses ever that night (love you, Andrea). I was able to go home and rest easy that night because I knew she was getting the best care possible.

Post-op playtime after finally feeling better

As far as progress goes on getting her home, she is up to 14 hours on the home ventilator, with 3 of those being in a mode that simply supports her breaths with pressure, but makes her do much more of the work. She still has a lot of growing to do before we can talk about a homecoming. But I will say that since it won't likely be before her second birthday, we're already thinking of a day trip home for her birthday in July.

I'll do a separate blog post soon, but many have asked me about the iheartcolum5k, benefiting our sweet Norah. The facebook page is here, and the website for registration is here. Hosted by the Pack Family, it will be held on Saturday June 29th at 8:30am, in American Fork, Utah.

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. 

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. 

SDCH Friends

I'm so proud of my son. Whenever we (or our roommates) have kids visit who don't often come to SDCH, you can see the difference in their behavior versus Harper's. No, I'm not talking about outward behavior like patience or manners, or the ability to sit still. I'm talking about something a little less noticeable.

You see, there is this sweet resident at SDCH who is pretty much the celebrity - just as Norah is in PCMC's PICU. We'll just call her "S". Like anyone else that spends a considerable amount of time there, we adore S. She is sweet, smiley, and silly. She's an amazing 7-year old that has been through so much... And I think she may have a little crush on Harper. He always wants to say hello to her, and she to him. She gets super excited to see him, and has on a few occasions, spotted him from the other end of the hall, and wheeled immediately over to greet him.

Here's my favorite part: when Harper looks at her, he doesn't see her wheelchair. He doesn't see the massive amount of equipment strapped to her chair that for sure weighs more than she does. He doesn't see any of her mental or physical challenges. He doesn't see her quirks and "isms" that are different from other kids. He only sees her. When she comes to our doorway to talk to us, I've seen the way other kids often look at her. They look her up and down, taking in every bit of her disability. And for those of you that may think I'm just referring to your children, I'm not. We've been there for quite awhile and have had a lot of young visitors. I'm referring to just about all of them (I suppose the adults do it too). I know with kids, their curiosity almost comes from an innocent and interested place. They haven't seen S before. They don't understand. This is not a criticism.

Rather, it is a compliment to my son. He has been so very exposed to these special needs kids, that he only sees people, not people with disabilities. A month or so ago, one of the residents that has been there pretty much his whole life wheeled past us in the hallway. He said "Hi, little boy" to Harper. Harper hid behind me. "He's scared of me," the resident said with an unoffended and understanding tone. "No, no," I assured him. "He's just the shyest kid you'll ever meet." And it's true. He wasn't scared of the way this resident looked. He was simply being shy as he always is.

I'm so proud of Harper and who he is becoming. He is a polite, sweet, caring boy, that sees people for who they are, not for what they can or can't do.

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

Lately

My heart has been a bit heavy lately, which, I suppose is why I haven't been writing much. Sometimes I grow tired of my whining. I really don't want to throw a pity-party for myself. I really am trying to make the best of things. But sometimes it is just so difficult. Sometimes I just can't seem to pull myself up and out of this funk. Jeff, Harper, and Norah help, of course. They help me see and feel that things really will be okay. They remind me to not only look to the future for when we will all be together under one roof - but they remind me that living for today is important, too.

We are getting ready for Harper to start kindergarten in the fall. He didn't go to pre-school. He didn't really go to day care except for those few months when I returned to work from maternity leave then promptly quit my job. We've been getting him ready with "homework", as well as talking to him about what school is like and driving by it a couple times a week. Next week we'll be visiting for "kindergarten round-up". He has some pretty intense social anxieties, but I think he will be fine, so long as we continue to support him.

Norah is so fun lately. She's going through a mama's girl phase (shhh don't tell Jeff). When I reach my hands out for her, she gets the biggest smile on her face, and reaches towards me. Often times, when someone else is holding her, she reaches out for me and begins to cry her sad, silent cry. It's difficult to resist. When I hold her, she loves to wiggle down my lap until she's laying across my legs. It's her new favorite. She also loves to hang her head off my lap like a crazy girl. She is such a toddler, and I am loving every moment of it.

Our visits seem far too short lately. They're very fulfilling, but I always leave in want of more. I see sadness on her face when I leave. Now and then she cries. It breaks me. So I'm doing my best to live for today, but it isn't easy.

Feeling Sick

This post is coming to you from a quiet, cozy corner of Norah's hospital room at SDCH. She's had intermittent viral symptoms over the last week or so. Today her heart rate was up, and she had a fever in the neighborhood of 102F. Right as we (Jeff, Harper, and I) were leaving, she started bawling, then she threw up.

Without a word, I held up my keys to trade with Jeff. We are all too familiar with this routine of division. He took Harper home so I could stay here with Norah. She's sleeping soundly in my arms now, but felt so crummy that she was shaking earlier.

Here in this moment, it's hard not to dwell on wishing I were rocking her in her bedroom at home. How I'd love to snuggle her all night, and be right by her side anytime she needs something. But soon I will have to slip her back into the hospital crib. I will have to rearrange her tubes and wires. I will gently kiss her cheek as to not wake her. I will have to whisper goodbye in her ear, tell her I love her, and that I will be back tomorrow. I can hardly stand to wait for the day that she comes home. Someday... At least I can say that much.

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.

Back on Track

Norah's record for tolerating the home ventilator came before she had two trips to the OR, and before she came down with ventilator associated pneumonia in December. It was 13.5 hours continuous hours. She still hasn't beat that, but she is finally back on track. For the last couple of months, she has only been on it for 4-5 hours at a time. However, she is now tolerating 10 hours every day.

The plan is to re-evaluate her every two weeks, and increase her time on the home ventilator by one hour if she can tolerate it. With as well as she's been doing, I'm hopeful that we won't have a problem bumping her up when it's time. That is... so long as we don't have any sort of setback like we seem to keep having.

So she's that much closer to being able to come home. The unfortunate thing that we just found out, is that the FDA's rule for using the Trilogy (her home vent) at home is that she be 10 kg (about 22 lbs). Right now she weighs in the neighborhood of 7 kg (15.4 lbs), so we still have another 3 kg to go (6.6 lbs). That is a LOT for her. So we may not make our goal of getting her home by the time she's two. But we can still hope.

We have quite a few resources to help keep her weight gain on track. It's a little tricky, not only because of her skeletal dysplasia, but also because her work of breathing burns quite a few more calories than the average child her age or her size. Her growth goals are half that of a child her age. She still gets pretty much all of her calories from her g-tube, and we'll probably have it for quite sometime. I'm not so worried about it though. To be honest, it is really convenient. Of course we are still working on her oral feeds, but I'm quite the advocate of g-tubes when the application is right. We're taking the gentle approach with Norah. We encourage her (she LOVES Cheerios), but don't push too hard when it comes to anything oral. It isn't easy for her, and we don't want to push so hard that we end up going backwards.

I'll keep you all updated on her progress with the ventilator. Hopefully we'll continue to move forward!

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. 

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?