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.

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. 

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. 

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.

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

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. 

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.

Growing Up

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

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

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

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

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

SDCH Friends

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

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

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

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

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

Lately

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

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

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

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

Nap Time

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

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

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

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.

A Beautiful Language

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

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

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

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

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

Family Love

Poor girl's rash

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


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

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

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

Daniel and Auntie Shauna

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

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

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

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

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

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

Our Perfect Christmas

This Christmas went down as the best ever. Norah came home for the shortest four hours of our lives. It was amazing. It was perfect. It was tearful. I can't begin to tell you all how meaningful this day was to us. Whenever anyone asks me if I had a good holiday, it is hard for me to hold back from telling perfect strangers all about how my daughter finally came home for four hours, after 17 months in the hospital. Not to mention that those 17 months have been spent on earning this day-trip. It was hard, it was worth it, and it is only the beginning of even better days to come.

She could sense something big was happening, even before
this elevator ride down.

After a fun Christmas morning with Harper, my mom and I snuck away to the hospital. Norah did her usual dance when I walked through the door, shaking her arms, legs, and head in excitement. As we prepared everything, she began to sense that something was up. I performed my mental checklist: vent, HME (humidifier), extra battery, spare trach, portable suction, a/b monitor, trach emergency kit, g-tube emergency kit, ambu bag, feeding supplies, formula, diapers, wipes, clothes, blankets, saline, and of course - my sweet girl all loaded into her carseat/stroller with her Inky beanie.

The package is secured. The eagle has landed.

Was this really happening? I don't think it totally seemed real until we strapped Norah and all her gear into our car. She knew we weren't in an ambulance. She knew we weren't in SDCH's transport vans. We were in our car. She was ready. I was ready. This was happening. When my mom and I came through the garage door with Norah, Harper and Jeff were waiting right in front of it, sitting on two chairs. We hadn't told him in advance (lest anything get in the way of it happening), and it was the best surprise EVER. "Norah! It's Norah! It's my beautiful-girl-baby-sister Norah!" Harper was running all over, back and forth between mom, dad, and sister. He kept petting her face and head. He kissed her several times. Norah could hardly contain herself either. She wanted out of that car seat. She wasn't crying - she was flailing her arms and trying to sit upright. She was using her unique communication to let us know what she wanted.

We opened Norah's presents in the living room, which was super fun. Thanks to the Billingsley's generosity, Norah made out like a bandit, with more presents to unwrap than the rest of the family combined. It was perfect. Harper opened them all for her helped, and she loved every moment of it. Norah was so comfortable. It was obvious that she knew she was home. We did the ASL sign for "HOME", and she seemed to know exactly what we meant.

In her very own crib with her Princess Peach figurine and
the stuffed frog sewn by her "Auntie" Heidi.

We then hiked up the stairs with Norah and all her gear. One of the first things on my list was to spend some time in her bedroom. I rocked her in the rocking chair, we laid her in her crib, and I sobbed. I remembered every time I rocked in that chair without her, crying, dreaming of that moment when I would feel the weight of her in my arms. I thought of all the times I looked longingly at her empty crib. And here she was: with us in her room. It was borrowed time, but I soaked in every delicious moment. My tears were mostly of happiness, but also of sadness, knowing that she had to go back, as well as sadness for all those times I was lonely for her in her empty bedroom. At least now I have these fulfilled memories to draw upon every time I enter her room, which is every day.

It was tough to squeeze everything into four hours,
but family cuddles on the bed was at the top
of the list.

We tried to fit too much into too little time. Jeff and I separately spent quiet alone time with Norah. It was amazing. We also, of course, spent time together as a family, just doing nothing. Cuddling, smiling, playing. Our hearts were whole.

But then it happened. it was already time to leave. My mom was gently reminding me of the time. I wanted to cuss her out. Of course, I didn't. I was simply frustrated that it was so short a visit. I didn't ever want it to end. She fell asleep on me. I procrastinated. Jeff and I acknowledged that it was only the beginning of the next phase of our lives. Norah will get bigger and stronger. With the success of this visit, it only meant that she was that much closer to coming home for good. Along with Norah's health, this was our focus for comfort. So we all loaded up back into the car, and took her back to the hospital.

Mama was procrastinating on going home.
She filled the time by taking photos of her
Sleeping Beauty.

Just before it was time to go, she fell asleep.
She knew she was home,
and she was so comfortable there.

We did the impossible task of unloading our baby to leave her there at the hospital. Again, she seemed to know what was happening. Norah is the smartest, most observant toddler I have ever known. In her way, she was the one reassuring us. She told us it was okay. She told us that she loved us, and had the best day ever. After a few hours, we left this smiling, satisfied face:

Norah gives us a parting smile as we say goodbye for the evening.

As she gets older, life in the hospital gets more difficult. She understands that we are not there all day and at night. She knows that this is her life. She seemed to make a mental connection between our leaving the hospital and the place that we took her to on Christmas Day. She seemed to understand that someday she will get to stay there with us, too. At least, I hope she understands. She still cries once in awhile when we leave after our daily visits. Or sometimes it's simply a barely detectable loneliness in her eyes. But it is there. 

We earned these four hours. We have worked damn hard and no one can tell us otherwise (IE Medicaid/ORS, but that is a story for another day). But now, whenever I am hurting, or lonely for my baby, I try to think of those perfect four hours at home. And I try to think of the future, when that time together will no longer be borrowed, but will be our everyday reality. Some day.

One last look at her room (top left window)
after our perfect Christmas together.

Miracles

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

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

     -Lemony Snicket, The Lump of Coal

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

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

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

      -Mr. Gold, Once Upon a Time

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

Bounce!

Modified crawl: Once she sets her sights on something,
Norah will hardly stop at anything to get her hands on it!
Here, she's reaching for that blue and white tube,
which is much easier with the Trilogy's circuit.

It really is amazing how much Norah has bounced back from her pneumonia. Since returning to South Davis on Tuesday, she is a whole new girl. She's giving away smiles for free to anyone that wants one. She's kicking and dancing and having a wonderful time. I've even seen some progress with her mobility - she's trying to flip, roll, stretch, sit, and dare I say getting into a modified crawl position to reach for things. Everyone has commented on how incredibly happy she has been. And to top it all off, she's jumping right back into her time on the Trilogy ventilator. We're not quite where we were before she got sick, but we're well on our way.

Our day trip on Christmas looks like it's going to go off without a hitch!

We could hardly be happier. Norah is such a tough little girl. I look at the light in her eyes, and have complete faith that she will continue to thrive and progress. It's only a matter of time. Our life is a bit of a roller coaster, and it's great to have another climb behind us.

The older Norah gets, the more she and
Harper look alike.

Even her eyes are smiling.