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. 

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. 

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?

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!

Stoma Revision

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

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

Resting after some morphine.

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

Post-op playtime after finally feeling better

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

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

Back on Track

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

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

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

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

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

Living on Life Support

Most people think of the term "life support" as the means to an end. Perhaps that is true in most cases, but not ours. To us, "life support" is the means to a beginning. Norah recently had her half-birthday, turning 18 months old. She is definitely a toddler. She throws fits. She gets frustrated. She gets annoyed with her family. She wants to do everything her way and on her own terms. But yes, she is still on life support. She has a trach, a ventilator, a long-term feeding tube, and enough gear to start her own medical supply store. She lives in the hospital still, and our hope is to get her home by the time she turns two years old (but who knows if that will actually happen). While we try to live life fully and happily now, we sure look forward to breaking free of life support.

Jeff and I often daydream about our future. There are so many unknowns, as with all lives. We wonder if Norah will still be dependent on these medical devices when she goes to school. We wonder if she will choose American Sign Language or spoken word. We wonder when we will hear her sweet voice for the first time. We wonder what it sounds like. We wonder if she'll grow to be proud of her challenges, or embarrassed by them. We daydream about the day she is decannulated - the day she gets her trach out. It will be an overnight stay in the PICU, and it will be coming full circle. We wonder how old she'll be. At first we pictured her toddling around, all of her favorite nurses chasing her around the unit. But now maybe she'll be coloring in her favorite coloring book. Maybe she'll be reading a Harry Potter book. Maybe she'll be painting her toenails and texting her friends about how bored she is.

We daydream about Norah and Harper taking care of one another. He will protect her, and she will protect him. They will fight, they will laugh, and I can only hope that they will be close.

There is certainly another sort of life support aside from the medical type. There is the life support that requires the love of those around you to lift you up and help you get through tough times. There is the type that creates wonderful memories to draw upon when life gets difficult. Right now we live on both sorts of life support- the medical and the emotional. It is difficult, frightening, and completely beautiful.

A very wire-and-tube-filled photo of Norah during her recent
PICU stay last week. Her hair is amazing.

Someone I Love

I recently read a lovely poem on a friend's blog that I felt compelled to share.


Poem by Lori Hickman

Someone I love relies on me in ways you will never understand.

Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.

Someone I love is unable to advocate for themselves for things that most of us take for granted.

Someone I love will never have the opportunities that every child should have.

Someone I love will need unconditional love and support after I am gone - this frightens me to the core.

Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others.

Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.

Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.

Someone I love has needs that require more time and energy than I have to give.

Someone I love has needs that mean I am not able to meet basic needs of my own.

Someone I love has needs that have become the driving force behind major decisions my family makes.

Someone I love has changed me in ways I will never be able to describe.

Someone I love has taught me about love and about the really important things in life...

And still others don't understand what it is to be me.. they aren't living in my skin.

Tracheomalacia

Norah went in for yet another removal of tissue (granuloma) blocking her airway around her trach. Our ENT used a different method to remove it, this time actually taking out her trach tube to get at all the problem tissue. When he did, he noted that her tracheomalacia is much worse than he had originally thought. Basically, this means that her trachea (airway) sort of collapses instead of staying rigid and open like a straw. Every time he's looked in there before, it has been with the trach tube in there, so it helps stent open her airway. The only real cure is for Norah to get bigger and stronger. While growth is particularly slow for Norah and her diagnosis, it has definitely been the trend for answers to her medical problems.

What does this mean? Sigh, I don't fully know. But I do know that she will probably have the vent and trach longer than we had originally thought. I suppose we are already past that 12-18 month projected time with a trach. But if life with my girl means life with a trach and vent, then that's just the way it will have to be. We'll take her no matter what comes with it. At this point, it is all part of her, and these life-sustaining technologies have become a part of her that I am so very proud of.

Once in awhile, I am reminded of how great we have it. Other times, I am reminded that life is pretty tough. But it's not just our lives that are trying... life's difficulties are just part of the human condition. Everyone has their complaints - but as I've always said, should you ever feel down, take a visit to your local children's hospital. You will see hope and courage like you would not believe.

Recent losses in my and Jeff's extended family have reminded me that, while life is beautiful, it is also so sad, and so hard. So everyone, be careful out there. And take gentle care of those that you love. Life is fleeting, and we should do everything we can to take advantage of the beauty and love it has to offer.

A Beautiful Language

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

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

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

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

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

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.

Triple Goobers

With Norah's initial labs, we knew that she had pneumonia. What we hadn't expected was for the culture to grow out THREE different bacterias all in high population. Her Nurse Practitioner said that two was common with trach patients, but not necessarily three.

Her initial antibiotic was covering two of those goobers, which left the one more or less untreated. This explains why she wasn't getting much better yet. They switched her yesterday, and we'll hopefully see her bounce back pretty quickly. What a relief.

So we may be headed back to SDCH today --fingers crossed--. Thank you all for your show of support.. It's been a crazy week!

Ventilator Associated Pneumonia

It's not the first time, and it won't likely be the last. Norah has a VAP, or ventilator associated pneumonia. Basically it's par for the course when you're living on a ventilator. Her viral panel was negative (which was surprising considering the sickness at home), but the culture from her trach came back as positive for lots of icky bacterial goobers.

We thought we'd be going back to South Davis today, Friday, but it may not happen. I don't want us to go back to SDCH too soon, only to have to be transported right back to the PICU. Last night she started really working to breathe. It was like she was sucking air through a tiny straw. Which I suppose technically isn't all that far from reality, if you look at her trach tube as a straw. But on top of that, she started throwing up. Often.

We had a rough evening yesterday when they had to replace her IV, change her g-tube button, and do trach cares, where we found that there was skin break-down on part of her neck. I won't even go into all the owies with the various labs they had to do on Wednesday. My poor sweet girl. Sometimes I just get this urge to tear everything off of her, scoop her into my arms, and pull a code pink (the hospital code for when a patient goes missing). But that's not how things are for us right now. She has to endure it. We all do. I know I have to be strong for her, but sometimes... when she looks at me with those pleading eyes while someone is hurting her... it breaks me. I cry with her. I can't help it. Sometimes the weight of our seemingly helpless situation is too much to bear. I am so grateful for all of these medical interventions that do help us... but I also hate them.

But she has moments where she is so lucid, and wants to play. But the rest of the time, she wants to sleep or have quiet cuddle time. I'm happy to oblige. And when I'm not there, a long line forms outside her room for Norah-time. I love it. So we're not over this hump yet, but hopefully we'll get there soon.

Trying on mama's glasses

Laundry Day

It may sound a little silly, but doing laundry is one of the things that helps me connect to Norah while I'm at home. Sure - the task itself is, as the incomparable Dr. Horrible says, "a stunningly boring chore", and the hospital is willing to do it... but I insist on doing Norah's laundry. In a way, it helps me to feel more like her mom.

But today I was a little sad as I spritzed each stain. A couple of blankets and boppy covers with lots of dried throw up from when she was feeling sick a few days ago. I wasn't there. Multiple outfits  with poop on them. I wasn't there. And the worst was the shirt with a tinge of blood around the neckline, from a trach change. I wasn't there. Though her laundry had only been sitting for a week tops, some of the spots were even starting to mold a bit. I wasn't there.

Usually, it feels good to do her laundry. My emotional state as of late turned it into something a bit lonelier today. It doesn't help that Harper and I woke with coughs and sore throats this morning, so we won't be going in to see her. Jeff took off early though to be sure to get in some family time for the rest of us. Fortunately, Norah doesn't seem to have whatever we do. Let's hope it stays that way.

Norah's Voice

When Norah was first born, I remember the sad whimpering sounds that she made right before they whisked her away to the NICU. However, I don't remember the sound of her cry during those first six weeks before she was trach'd. She very rarely cried. I'm not fully sure if that was because of her calm temperament, or because she was too focused on fighting so hard to live.

During this recent stay in the PICU, an orthopedic resident came by to adjust Norah's hip harness (that she wears nightly). While he was adjusting it, he looked up at her, and asked, "Is she trying to cry?" I answered, "No, she is crying". It took him a hardly perceptible moment to register that she didn't make sound because of her trach. "Oh," he joked, "that must be nice to not have to hear her cry." I kept calm, and told him, "Actually, I've told parents that if they have ever wished for a mute button on their child, they should come meet Norah. It really very sad actually." He didn't bring it up again until right before he left the room when he looked over at her, and conceded that, "Oh, that is pretty sad to not be able to hear her."

DUH. He's the sort of guy that gives residents a bad name.

Her lack of voice sucks pretty bad actually. Some children/adults learn to move their vocal chords around the trach tube (especially if/when there is a leak/extra space around it), and some do not. Norah does not make sound. The times that she has made sound while coughing or crying, we know that there is something very very wrong. But I ache to hear her sweet voice. And I know that when I first hear her truly use it, I will be in tears.

The other day, Harper had Norah in a fit of laughter like I had never seen before. She's had her fair share of belly laughs, but this was intense. We didn't catch the height of it, but below is a video clip. Unfortunately, it probably won't be visible on mobile devices, but computer users, enjoy! It shows that even though Norah isn't vocal, we hear her loud and clear with our hearts.

Are We There Yet?

We try to be patient. We really do. But I can't help but occasionally feel like a petulant child in the back seat, constantly whining, "are we there, yet?" Norah is fourteen months old. All but two weeks of those fourteen months have been in the hospital, the majority of it being in the Pediatric ICU at our local children's hospital. It's enough to push us over the edge, but we lean on one another for comfort, support, and encouragement.

This journey has brought us to places and introduced us to people I never would have imagined, but I would trade it all for "normalcy". Yet I would never ever trade that normalcy for life without our perfect girl. I suppose I just go through cycles. Sometimes I am so optimistic and energetic about how things are going. And other times I feel really crappy about the whole situation.

Yesterday we checked off a few more things on South Davis' discharge preparation list. I changed her trach, did trach cares, and not only did I do g-tube cares, but showed the nurse our new method for doing them. All of these things have become second nature now. We're beyond ready to take her home. But Norah isn't ready. Rather, I should say her equipment isn't ready. We are still using the ICU-only vent, with the home vent just a couple hours each day. The only thing standing in our way is technology, or the FDA's approval to take home what works for her. I am often asked if we'll take Norah home when she is off of the ICU-only vent. I look at them like they're crazy. I can't help it. No one will be able to stop me from taking her home once she's able to tolerate the home ventilator on a full time basis. It will be a new and difficult phase of life, but she will be at home where she belongs.

On Monday, one of Norah's RTs said something that really irritated me. I should have said something, but for some reason I didn't. Maybe I was too exhausted after a long day. On our way back to South Davis, I was pushing Norah's stroller in to the building, when her RT said "Do you got her, mom?" When I answered, "always", she said "Well, only until I decide to take her from you." 

Seriously? Who says that kind of thing?! Maybe that's what has me feeling down right now. I love that we share Norah's love with everyone, but she is still our baby girl. She came from my belly. I carried her for exactly fourty weeks and worked like crazy for that successful VBAC. We have never missed a day with her in these long 14 months. We have been through multiple surgeries, 9 frightening minutes, acute illnesses, countless procedures, financial woes, lifestyle changes, buckets of tears, and some amazing triumphs. She has her daddy's double jointed thumbs, and mommy's dark brown eyes. We're the only people that can truly give her cuddly comfort when she's upset. We don't get to give her baths every day. We don't get to dress her every day. We don't get to tuck her into bed with a song or a story. But Norah is still our girl. ...Are we there yet?

Back From a Rocky Week

Norah and Auntie Cecily saying "ta-ta for now".
Look at the love they share!

What a crazy week. Things were pretty scary for a few days, but when Norah finally started to get better, we were all so relieved. Man, that girl is as tough as they come. The day of discharge, Norah decided to spike a fever. Apparently she wanted to stay in the PICU. We were having none of that though. We did lots of labs that were reassuring, so we did an evening transfer back to South Davis on Monday (sorry to SDCH with our admit just 5 minutes before shift change!). Our "overnight stay" became a full week, but we weren't necessarily surprised. She is still showing symptoms of rhinovirus, but her nurses and RTs are staying on top of the extra care she needs. As much as we LOVE the PICU and the people there, they have too many dangerous cooties.

Coming back to South Davis this time honestly felt like coming home. I just dumped down all of my bags, unpacked, and gave Norah a very peaceful cuddle in the recliner. Like I said - the PICU peeps are our family. They know Norah better than anyone and have treated every situation both acute and chronic. But it is a very very very sad place. I met a few families during this stay that, as always, tugged on my heart. A family losing their less than week-old baby due to a perforated bowel. A heart kiddo and his mom, newly trach'd, super adorable, and facing a new life ahead of them.

But I also had an amazing experience while there. I met up with my friends, the Pack Family. Oh I love them so much. You can read Kelly's account of our meet-up here. It was so emotional, and so incredible. I felt honored to be able to help arrange things for them, as well as be there to cry with them as we went around the PICU. I'll never look at Bed 2 the same. Kelly and Ryan couldn't be there when their sweet Colum was in the PICU on Christmas Eve and Christmas Day, because they were fighting for their own lives next door at the U of U Hospital. Norah and I were there though, and I feel so deeply connected to this family. I love that they got to meet Norah, though she was pretty out of it post-op on Monday. She was in pain, bloody, sleepy, and loaded up with medical equipment, but they didn't see any of that. They saw our beautiful girl for who she is. It felt so good to be with Kelly and Ryan. Our situations are very different, but as I told Kelly, we've walked down paths with our families that few will ever experience or even understand. We could cry together, curse together, and share stories and experiences without judgement or awkwardness. It was wonderful. (Love you, Kelly!)

Norah trying REALLY hard not to smile!

So what's next for us? Well we will have a full round of clinic appointments with Orthopedics, ENT, Pulmonology, Ophthalmology, Endocrinology, and Augiology. (Is that enough "ologies" for you?) ENT is going to have to go back in to get the rest of that monster granuloma mentioned in my last post. Which means general anesthesia again. We're going to see if we can coordinate it with both her sedated hearing test and hip surgery if Norah will indeed need it. I can't wait to get this round of surgeries and procedures behind us so we can focus on transitioning to the home ventilator. I just want to bring Norah home. So badly.

Thank you all for your love and well-wishes over this really difficult week. Norah can use all the love out there, and we sure appreciate your thinking of us. 

Ups and Downs

Aside from a few hiccups and surprises, Norah did well in surgery. When we went back to the PICU to see her, she was in tremendous pain. Unfortunately, she has her daddy's high tolerance to pain medications. One of the docs said that there is most likely a genetic component to everyone's tolerance of medications.

When we were pre-op, Norah's ENT came in to chat with us. I asked if he could do a bronch to look down her airway since it had been awhile. Thank goodness for Mother's Intuition, because when he did during surgery, she had an enormous granuloma (a build up of tissue, which is an immune response to the foreign object - her trach) completely blocking her upper airway. He couldn't even get it all the first go-around so will have to go back in again soon, or it will just grow back. What would have happened if it hadn't been caught? Well, if her trach had come out and we couldn't get back in, we would have had no way to get air into Norah. None. Her upper airway was completely blocked, so even bagging would have been impossible. I think you can guess what that would mean if Norah had no way to breathe....

I stayed the night on Monday, which was a good thing because she had a really rough night. Then we spent Tuesday trying to manage her pain, and all but failing. Then she had a desat (blue spell) from a mucus plug. She was definitely showing viral symptoms so they sent off some labs. Sure enough, she came back positive for rhinovirus. Man rhino really kicks her butt in a bad way. I knew this would be bad.

On Wednesday, we finally figured out her pain meds. She was even playing for a little while and breathing easier. But I then noticed that she had intense right ear pain (from the new tubes that were put in). Hopefully ENT comes by quickly so they can peek in. Oh- and we had another desat when I picked her up to hold her. I sure hate seeing her turn blue.

This morning I called to check on her. Her nurse said that she was having some major respiratory distress- not unlike that which happened in July. She was clearly freaked out. I've learned that if you've freaked out an ICU nurse, that's a very bad sign. So she's getting albuterol and steroids to help out her lungs and airway. I'm really ready for her to get better. I hate that a little common viral bug puts Norah in the ICU for weeks.

The good news though is that her cleft repair looks good. Hopefully everything else falls into place soon too.

Surgery

Few things are better than post-bath snuggles

Just a quick note to let you all know that Norah goes in for surgery on Monday morning. Her soft cleft palate will be repaired by her ENT, the same doctor who did her trach surgery. Please think of her tomorrow, as we can use all the love and positive/healing thoughts that we can get. We're nervous... mostly about the general anesthesia.

Our check-in is at 11:15am. Who knows what that means about the actual surgery start time. Though it's typically a same-day surgery, she'll stay in the PICU for one night minimum (due to her ICU-only ventilator dependence). After that, it's sort of a wait-and-see thing. The timing of her return to South Davis will depend on her respiratory status, pain level, and overall recovery. The PICU means germs, but we know we're in such amazing hands there. They're still family to us.

As I've posted previously, we've had luck in the rain, and there is rain in the forecast tomorrow. Let's hope that our sweet girl yet again shows us that she's as tough as they come, and nothing will stop her from having a happy, full life. 

Thank you all for the phone calls and well wishes these last couple days. We sure love you.