The Question

It happened, and I know it will only be the first of countless times.

Yesterday Harper's school had their annual 1st Grade Patriotic Program. It was so sweet. They sung songs and saluted the veteran relatives and friends of the families in attendance. Norah and I were especially excited to see that their Pledge of Allegiance song was accompanied by signs. (Not true ASL of course, but they were fairly accurate ASL signs using the frozen text of the pledge). I was such a proud mom to see my sweet boy on stage, knowing every word and giving me the occasional sly smiles and sign for I Love You. I also happened to sit next to someone that grew up in Jeff's neighborhood. It didn't take long into our conversation when she realized that she knew Norah's story. The kid's a celebrity, I tell you.

After the event, Norah and I joined Harper's class for some treats and a little social hour. Most everyone left, but Harper lingered with his friends while he also packed up his things to go home. One of his friends had been looking at Norah and I. He asked a few other kids if I was his mom. He finally asked Harper, to which he replied "Yes, that's my mom and my cute little sister." His friend quickly asked the question he was itching to ask someone, "What happened to your sister?" There it was. The first of many times, in just one of many forms that Harper will be asked about Norah's differences. In that moment, I was so proud of my son. He didn't understand what his friend wanted to know. Nothing happened to her. Nothing was wrong with her. He just knows that she is his cute sister. Harper's expression prompted the boy to repeat his question, this time pointing to his own neck. I could see Harper's brain scanning all of the things we've told him about Norah to help him understand that all people are different, and that the only things that make us "normal" are in fact, our differences. He told his friend that Norah needs help breathing with a mask. I of course didn't want to intervene. The boy wasn't quite satisfied, because he wanted to know what on earth was that gigantic white and blue thing around her neck. They ended up being distracted by another boy running around the classroom with a small flag, playing "good Army/bad Army".

There will always be something. There will always be stares and questions. There will be curious people, rude people, awful people, and wonderful people. My top goal aside from my kids' safety, health, and happiness is raising them to be confident in who they are, and I know much of that comes from example. I want us to be proud of one another. Our Deaf Mentor and I recently had a conversation about this - particularly regarding acceptance in being Deaf. She has told me before that watching Harper makes her proud, and that it is priceless to have a sibling who is so supportive of who you are. I don't know what the future holds, but I do have every confidence that this sort of support is going to go both ways. I like to think that Norah will be just as protective of Harper as he is of her. 

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.

Another Surgery

Norah had yet another trip to the OR on Monday. Many (if not most) special-needs moms could tell you exactly how many times their child has gone to surgery. I lost count long ago. This time she went in for her trach scar revision, and it'll be great to see how everything heals. I hope she grows to be proud of her scar and what she's overcome. Our ENT also noted that her mid-airway still has quite a bit of tracheomalacia (her airway doesn't stay rigid & open - think of a straw that is pinched half-way closed). He knows that I love pictures so brought some out to me. Hopefully she grows out of that floppy airway. This particular trip to the OR was particularly stressful because it was her first since having her trach out. But everything went smoothly without any issue. We walked away feeling relieved that Norah wouldn't need surgery for a LONG time.

We were wrong.

We went to Shriner's to follow-up with her Orthopedic doctor. We've known that Norah's neck isn't totally stable (she has excessive movement between C1 & C2) but we've hoped that over time, things would ossify and strengthen & she'd be fine. Turns out, it's gotten worse. We have a bunch of appointments next week, but I'm under the assumption that they're going to want to fuse Norah's neck within the next couple weeks.

I know that fusion will help her be stable, safe, and prevent spinal cord injury. But I am scared. I am scared of pain and her own fear. I am scared she won't want to come off the ventilator post-op. I am scared of permanent injury. I am scared of death. Of course, not getting this surgery could lead to those same things. So I know it is necessary. But that doesn't make it easier.

The thing is: I know Norah can do this. She has been through so much and has shown us that she isn't going to give up. I mostly worry about my own ability to hold it together. I hate seeing her hurt. I hate that I can do so little to protect her from the inevitable pain associated with her medical woes. I hate that our family will again have to taste what it is like to be apart. I hate that Harper has to see his mom cry this way. I hate that he has such worry about Norah in the hospital. He said to me recently, "But mom, I thought we got to keep her. I don't want her to go to the hospital."

So again we go through another challenge together. Part of me has forgotten that life in the hospital. I don't know how we endured those 23 consecutive months. But then the other part of me remembers that time with such distinct clarity that it adds to the anxiety and fear of going through that again.

I'll try to keep you all updated on her upcoming schedule. Here's to strength, bravery, and love getting us through.

Bare Neck

Tonight I saw Jeff doing something that I find myself doing quite often. He and Norah were playing on the floor, when he casually lifted her hair up off of her neck. "Are you admiring her bare neck," I asked him. He sure was. We both do it. We look at her in awe. No trach ties. No trach. No ventilator. No ointments, no skin breakdown, no trach smell. No secretions, no suction catheter, no drain sponges, no CPT. No more hoarding ten different types of wound care products. No more hoarding medical supplies at all in fear that we will run out (which you better believe happened and was AWFUL). I could go on and on.

Truthfully though, while we had it, the trach wasn't so bad. Neither was the vent. I'd go as far as to say that I loved them both. Without them, Norah wouldn't be alive today. Yet we sure love admiring how far we've come. The girl who was stuck in the hospital for 23 months on an ICU-only ventilator took less than a year to shake her life support. Life is good, and we're sure to notice those little things that make it so great.

Preschool Plans

Sometimes I can be pretty cavalier about things. The truth is that I'm not always so confident. Of course I knew that Norah would some day get off of the vent and decannulate. There was never a doubt in my mind. I don't really have a whole lot of doubts when it comes to Norah and what she can and will do. I guess my doubt is sometimes in my own ability to facilitate some of those triumphs. I also have doubts in my ability to cope with everything with a smile. Sometimes I'm not sure if my smile is genuine. I absolutely love my life. It is beautiful and wonderful, and I wouldn't trade it for any other life. I have found fulfillment in ways I never could have imagined. But sometimes when I look ahead, it all seems so daunting. Yes, we've gotten this far - and what a challenging journey it has been. Again, I don't ever doubt that we'll meet our goals. I suppose, like most people, I just get a little tired.

Though she is a very smart girl (sometimes too smart for her own good), Norah is pretty behind developmentally. She turns three in a few weeks but she has yet to walk, stand, or even get to a sitting position on her own (though she's close). She is improving, but her expressive communication is lacking too. We recently made the decision to enroll Norah into preschool at the Jean Massieu School of the Deaf in Salt Lake City. Norah is hard of hearing. Though we have a Deaf Mentor (one of the most awesome people) who comes weekly to teach us American Sign Language, Norah will need even more exposure to ASL if we hope for her to be fluent. As for us, we're working on our fluency too. I truly believe that at JMS, Norah will be a "normal kid". I picture her at a typical school. She tires quickly, so would be lying down a lot. She would have minimal communication with the other kids. They would treat her like a baby, running figurative (and possibly literal) circles around her. She is not a baby, and I remind people of that often. At JMS, she'll be just any other kid there. Those kids are so accustomed to "different" that different = normal. She'll be ready to join Harper at our local elementary school someday, but that isn't just yet. Next month we have another appointment at Shriners to see how her scoliosis and c-spine (neck) stability are coming along. Cross your fingers for us, because her safety at school will be directly related to her neck stability.

Norah's formal list of goals on file is a long one. Will it be hard? Yes. Will we get there? Yes. Heck, I'm just thankful that we are facing these educational decisions and goals. It wasn't too long ago that we were facing different sorts of decisions - those that were necessary for her very survival. It's a welcome change of pace to be thinking about education and development instead of breathing and surviving.

Trach-free

I had this long, intense post written... when I accidentally deleted it. Yep, me - the person people turn to for computer help... I deleted the post and it auto-saved. Nice, huh? I just can't bring myself to re-write it. Perhaps you should be thankful that my other post was deleted... it was pretty long-winded (as I tend to be). But I wanted to break my blogging silence, at least for this one post. So where have I been? Enjoying life, of course. We've been living in the moment, and enjoying every bit of it.

The rumors are true that Norah was decannulated on June 4th. To say she's doing great would be an understatement. We're all adjusting to this new life. It's amazing what can happen in a year to such a strong-willed girl. She is strong, healthy, and enjoying her new trach-free life. We're all enjoying our new trach-free life. Norah is now in HD. She is more vibrant, active, vocal, mobile and just as sassy as ever.

The trach/vent mom in me will always be in there somewhere. But someday I'll forget the size and style of her trach. I'll forget her old vent settings. I'll forget the weight and juggle of equipment in my arms. I'm sure the first time I forget the oxygen tank (that is rarely, if ever used), Jeff, always the worrier, will be right behind me with it. And as we wean off of our private duty (night) nursing, I'm sure the trach/vent mom will be stirring within me, at the ready for any respiratory emergency.

Her medical journey is not over, but her rocky start is. She can finally breathe on her own. I can't even begin to express how thankful I am to all of you, to all of her caregivers, to technology, and to the love that has lifted her up and surrounded her since the moment she was born. Thank you for sharing in her journey... It isn't over yet.

Two Hundred and Three Days

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

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

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

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

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

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

Happy Miracle Birthday, Norah!

I interrupt this blogging hiatus to share my thoughts on the second anniversary of a very significant day.

My dearest Norah,

It has been exactly two years since that awful day. Your daddy describes it as both the worst and best day. He's right. We all stood together, teetering on the edge of life.

That day lives in my mind so clearly. Maybe it always will... Or perhaps it will fade a bit over time. But right now, I choose to recall it with clarity. It reminds me of where we came from, and all that we have. It reminds me that our love can do amazing things. The four of us are in this together, and we lend strength to one another without hesitation or sacrifice. 

These last two years have been amazing with you. I am so thankful that things happened the way that they did. If I had it to do all over again, I wouldn't change a thing. This is our story, and I love it. Thank you for being the bravest person I know, and certainly the strongest. You continue to amaze and inspire me. 

I love you.

Mama

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. 

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!