A Difficult Week

Those that didn't know me would have thought I was a mom going through a crisis for the first time. They probably would have felt pity for me -  a fearful mom in unexpected and new territory. It was partially true, but the deeper reality was that I was having some serious PTSD. I will however say that I received great comfort from family and friends, who helped me cope.

That first night post-op from Norah's c-spine fusion was awful (though her surgery itself went really well). She was in so much pain. She was able to sleep the next day, but in the middle of the second night, threw up and breathed a bit of it into her lungs. I can't tell you how many middle-of-the-night emergencies we've had with Norah. We moved to the PICU, which was when I started to feel the old nag of emotions bubbling up from living there so long. After some time in the PICU, we moved to the floor. But overnight, again, she began to decline all of a sudden. the respiratory therapist recommended a PICU consult. No. Not again. I didn't want it. "They'll take her. I know they will. I don't want them to come." Those were my exact words. But there was no stopping it from happening. She wasn't getting better, so I agreed to their consult. I was just relieved to see familiar faces come upstairs. It was becoming more and more clear that we were going to have to go back. The doctor who once told us three years ago that our daughter might die, was here to tell me that Norah needed to go back to that place. Back to that place that toes the line between being the most wonderful beautiful place and being the saddest, most horrible place. They wanted to put us in our old room, bed 14, but I asked them not to. I would have begged if necessary, but they had no problem finding another place for us.

Friday was awful. One of her most frequent and beloved caregivers there, a Nurse Practitioner, looked at her with the most genuine concern. I could tell he was worried. He looked at Norah as if she was his own child. I've never quite seen anyone look at her that way aside from Jeff. Sure, people love her, but this was different. It was so touching. He spoke with a somber but hopeful tone. We all had a hard time getting Norah stabilized on the vent. For a bit, I thought we were going to have to intubate her.

I saw something that I've only seen happen with her a few times during a code. No, she didn't code this time. But what I saw was a girl starting to give up. And it scared the shit out of me (no apology for language there). She and I had a talk. I tearfully told her that her mom was going to be selfish. That I couldn't stand it if she left. That I needed her to fight. She couldn't give up. Well, she didn't give up and I am so grateful. This last week+ has been one of the more difficult that we've had in a long time.

Based on her viral panel and presentation of symptoms, she was treated as having the nasty enterovirus d68. Don't worry - if you or your kids get it, it wouldn't likely do you you what it did to Norah - unless you also have airway issues and/or lung disease. It is because of these things that little colds can really do a number on her.

So we've come home with our old friend, the Trilogy ventilator. We're using it at night for non-invasive bipap. Norah was pretty upset when we put her on it last night. She thought that since we were home, that we were done with those shenanigans. The C-collar she has to wear (for four months) was also frustrating for her since she can't lie on her belly. Hopefully it just will take some time to acclimate to this new normal. Again. I'm just happy that we are all together again. I missed Jeff and Harper like crazy. And poor Jeff didn't exactly have an easy time trying to juggle between being supportive at home and the hospital.

As for Harper, the poor guy has been having a hard time. He told me yesterday that he had been sad because he thought that I wasn't going to come back. He was serious, too. We hadn't seen each other in person for over a week, so it was understandable. As much as we try to make things normal for him, it just isn't possible. So we' have some work to do with getting both kids to happy places. Hopefully it happens sooner than later.

Two Hundred and Three Days

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

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

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

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

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

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

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! 

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.

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.

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.

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.

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!

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.