Bare Neck

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

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

Respite

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

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

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

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

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

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

PTSD

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

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

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

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

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

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

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

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!

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.

A Long Day

With Norah's skeletal dysplasia, c-spine (neck) instability is a known risk. We had been told quite a few times that her x-ray films and MRI were "reassuring". However, we all wanted to formally clear her for c-spine stability, so we were referred to a pediatric neurosurgeon to take a look at the images of her neck. We generally prefer to cram in as much as we can when we visit Primary Children's... but this particular day was more taxing than most medical transports.

Little girl in a big machine

Prior to her appointments, Norah was happy and playful. Our first stop was imaging, for a CT scan of her neck. We had quite the entourage in there: a doctor, a nurse, a nurse practitioner, a respiratory therapist, two imaging techs, and the SDCH medic. She is really difficult to sedate. As expected, she resisted the initial medication, so we had to place an IV and give her something more. This second medication was really hard on her, as I'm pretty sure its effects were scary. Her heart rate shot up, but she was such a good brave girl. I had to hold her head while she went through the machine because she was bobbing her head with each breath, a definite sign of distress.

We spent a little time in sedation recovery, where she spiked a temperature. We stuck around there long enough for a dose of Tylenol and a quick (tube-fed) breakfast. We went to see the neurosurgeon next, who had ordered the CT scan. Despite having the detailed scan, he wanted additional xrays. By that time, we were running late for the orthopedic appointment, which was the original thing on our agenda for the day. So we went up there, took a hip x-ray in the clinic, then had our consult. We then went back down to imaging for the additional x-rays of her neck. Norah by this time was beyond upset, exhausted, and uncomfortable. She was tired of being poked, prodded, and forced into positions that she wanted nothing to do with.

We went back to neurosurgery yet again. After a long wait, we finally got back in to see the doctor. He gave us news that we did not expect. It was his opinion and diagnosis that while her cord looks to have plenty of space (so is not compressed), Norah has an unstable c-spine. We had gone there to get cleared, but were given the opposite result. He answered my questions (I could go into detail if you like, but this post is long enough as it is), which I greatly appreciated. But here's the thing: while I don't doubt that he is an extremely skilled doctor and surgeon, the reality is that there are no skeletal dysplasia specialists in Utah. Sure, this doctor may see every child in Utah that is even remotely similar to Norah... but that's going to be a tiny handful of patients.

Let me back-track a bit. What does c-spine instability mean? It means that she's at heightened risk for a spinal cord injury. What could happen with a spinal cord injury that high up her vertebral column? Well if something really bad was to happen, it could mean paralysis (from the injury all the way down) or death.

That isn't going to happen to Norah.

At this point, we've decided to stay the course (meaning no immediate surgery, and no collar). We'll go in every 3-4 months for more xrays (don't even get me started on the topic of radiation exposure) and a follow-up with that doctor. We'll make sure that Norah isn't looking worse. Hopefully she will improve. Hopefully she won't need fusion surgery. Hopefully this doctor is wrong altogether. Hopefully he just doesn't see enough of these skeletal dysplasia kids to understand that they are hypotonic, and every part of Norah's body is expected to be floppy for awhile. Hopefully he just doesn't understand that Norah's bones are and will be late to ossify, and his films don't show the cartilage  Hopefully we don't have to go all the way to Delaware for a second opinion.

Such a long day

One of the most draining aspects of the day was what it did to Norah. She was miserable. My heart broke every time she would reach for me to take away the sad, scary things that were happening to her. But I couldn't take those things away. All I could do was try to soothe her with words, try to distract her,  and tend to needs like suctioning, wiping tears, fanning her overheating body, and trying to help her be as comfortable as possible. I hate feeling helpless. Even worse, I hate that she wasn't getting the remedy from me that she was asking for. I'm supposed to protect her. Of course I know that no one can protect their children from everything... but it upsets me that she has to go through this. It upsets me that she doesn't understand why these things have to happen to her. It upsets me to think that this is her life, and this is all she knows. Our world lies within hospitals. These people and machines help us to keep Norah alive. It's a rocky start to what will be a trying life of more doctors, surgeries, interventions, and everything emotional that goes with it. But it's a life, and we do our best not to take that for granted. Though we often feel so weak, our strength comes from Norah's light. It comes from knowing that Norah is destined for greatness. For now, all we can do is fight for her and love one another with an intensity and purity like none other.

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.

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.

Waiting

Norah won't likely be leaving the PICU too soon. She isn't any worse, but she isn't much better either. She's back to her baseline ventilator settings (I always correct people who say "home" settings), but is still not tolerating her feeds, and is still on a feeding pump (she hasn't needed one in a VERY long time), taking her feeding over an hour and a half instead of the usual 10-20 minutes via gravity without a pump. She is still working quite hard to breathe, which leaves less room in her body for formula.

She's still sweaty, off and on feverish, and mostly not herself. She plays now and then, but mostly drifts off to doze intermittently throughout the day. I'm not sure how long it will take her to get over the hump, which means her estimated stay at the PICU is unknown. Yes, that means that we may or may not have our Christmas at home. I won't think about that until it gets closer. We have three weeks to get back to where we were, but I'm not sure that's feasible.

I was pretty emotional last night. I think everything just sort of caught up with me. I've been pretty cavalier about this PICU stay, just assuming it was a bump in the road and she would immediately bounce right back. It's taking longer than I thought it would, so I think my denial of the situation finally broke through. I shouldn't have been looking up medical journals online, but I read that mortality rate for ventilator associated pneumonias are widely varied, but generally in the range of 24-50%. UGH. Now I know for so many reasons, Norah does not and will not fit into that percentage. It just isn't her situation. She is doing too well... right?

Last night I wistfully sobbed about missing the time that Norah was in my belly. I carried her with me everywhere I went. She got the hiccups every day, which would send a quick little jolt in my belly. She was a gentle kicker (unlike Harper), which is just how she is now: so surprisingly gentle for her age. She was always snuggled up within me, no matter where I was. I never had to say goodbye to her at the end of the day. Jeff reminded me that I couldn't be selfish in this, and that if she was still in my belly, he couldn't snuggle her too. We wouldn't be able to enjoy her smiles, her belly laughs, or any of the wonderful things that Norah shares with us. Of course I wouldn't really want her back in there, but I sure miss never having to be separated from her.

I probably shouldn't be allowed to use the Internet anymore. In addition to reading awful things about ventilator associated pneumonia, I also briefly looked at a couple videos of kids Norah's age. I wanted to see what a kid with typical development would be like. Of course Harper fit in that category, but I just couldn't remember the look and feel of it. Oh boy, what a mistake. These kids were such busy bodies. They walked everywhere. The tumbled, toddled, and talked. Their voices were so sweet. They played on the couch, the carpet, and everything they could get their hands into. I quickly closed the videos. My emotions are torn here. Though I pine for Norah to be free of her tethers, I don't want those babies. I want mine, and that means at any cost.

So we wait for Norah to get better. We'll wait for her to get back to where she was before all this. We'll wait for her to come home. We'll wait for her to get strong enough to not need all of her medical gear. We wait, we wait, we wait.

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

Setting Records

As most of you likely know, we have been putting Norah on the Trilogy (home) ventilator for "trial" periods each day. At first, there were some days that she could hardly stand 5 minutes. Then she was gradually going up in time on the Trilogy: one hour, three hours, four hours... During our most recent meeting with the SDCH staff, we asked them to push her, just to see what she could do. So they've been doing exactly that. Her new record?

Thirteen and a half hours.

Yep, she is doing amazing. She used to get so tuckered out after just those few hours, but she is doing so well, that most days she is on it 10-12 hours. I'm not going to say that this is the reason for her doing so well, but I've been applying a respiratory blend of medical-grade essential oils to her feet almost every day. (Thank you Kelly!) I'd like to think that it may be part of why she's doing so well... who knows. 

I do know that our girl is one tough cookie. She definitely has to work harder on the Trilogy than she does on the Drager (the ICU-only ventilator), but it looks like there isn't really a way around that for now. But it doesn't exhaust her like it used to... in fact, she hardly seems to notice. I think she enjoys the things she can do on it that are more difficult on the Drager. She can go for walks, she can play in the hallway for a change of scenery... and... (drum roll please), she can finally sit up for a few minutes! It was so much more difficult on the Drager because it has a heavier circuit with so many more parts vs. what we have with the Trilogy. 

It's going to be an amazing Christmas with the four of us (plus some family!) at home together, for the first time since Norah was a frighteningly unstable 41 days old. And it won't just be for a few hours... it'll practically be all day! I'm not prepared to think about how difficult it will be to take her back to the hospital afterwards. The only comfort we will have is that she's so very close to coming home... I can practically taste it.

Happy and playful in the hallway outside of her room.
She's growing up, and we are beyond thrilled at her progress.

Another Trip to the OR... and the PICU

Right out of the OR

No, I don't mean Oregon... I wish I did. In our world, OR is always Operating Room. Few knew that Norah was going back to the OR this past Monday for the rest of her granuloma removal and for replacement of her left ear tube that was plugged. The bad news? The granuloma had already grown back enough to block her upper airway again. ACK! The good news is that our ENT was very happy with the way it came out this time, and is confident that it won't be growing back quite so soon. Have I mentioned lately how much we love our ENT, Jeremy Meier? He's just so great.

We are always nervous for general anesthesia. We knew it would be a quickie but that doesn't matter. I always cry after we drop her off at the entrance to the unit. The walk back to the waiting room is a long one.  We had been expecting the whole thing to be outpatient, but he wanted to admit us to the PICU for an overnight stay. Such is life.

As usual, it doesn't take long for word to get out that Norah is back in the unit. One of the attending docs told us that she had gone to Norah's old room, only to find some other family in there. Ooops! This was not the first time that's happened. Even Harper is used to running in there, and has almost barged in on other people in there during other stays. Ooops!

In the PICU, Norah is always on the team with Nurse Practitioners in lieu of Medical Residents. This is a very good thing. They usually put kiddos on this team when they are recurring patients. Yeah, I'm pretty sure we fit into this category. They were all impressed with Norah's progress, commenting that her lungs sounded even better than her previous visit... which is good considering she had rhinovirus that last time. Norah was spoiled and snuggled, and Jeff and I were able to catch up with some of our favorites that we haven't seen in awhile. We were also teased for being back (cough-cough-Co-cough-ry-cough-cough), which of course makes us feel more welcome. :)

We spent the night in an almost zero-privacy room. Some call it the dungeon. Some call it the cave. I often call it "cootie corner" because that's where the "dirty" kids go during the winter months of rampant viruses and cooties. There were no cooties there this time. Norah was beyond happy to see her friends and fans, but she was not so happy about trying to sleep out in the open. She was restless, and so glad once we got back to South Davis.

As much as we love the PICU and consider it one of our home-away-from-homes, it's good to be back at South Davis. We're now looking forward to seeing how well she can do transitioning to the home ventilator. Hopefully we won't have any more obstacles along the way, but we know there is no guarantee of that.

Health Care

A rare family walk outside for some fresh air.

WARNING: POLITICS AHEAD!

I'm really nervous today. Our family pays a ton for our health insurance, and Norah relies on Medicaid as her secondary insurance. All politics aside, if Obamacare is repealed, Norah will most likely be dropped by our insurance. She exceeded old lifetime caps long ago, and has had a pre-existing condition since 20-weeks gestation. Obamacare came just in time. I hate to think of where we would be had it not been passed when it was.

Due to FDA restrictions on ventilators, Norah cannot come home with her current ventilation needs. Trust me, if she could, we would bring her home in a heartbeat. It's been a long fifteen months in the hospital. So without Obamacare, we would have to pay every penny out of pocket for her inpatient health care. A six month stay in PCMC's PICU was just shy of $1.2 million. A recent week and a half was $75,000. South Davis' LTAC, where she lives now, is cheaper but it's still so far beyond what we could ever afford. And we've been told time and time again, that Norah isn't your typical long-term patient. She's so intelligent. She's funny. She's playful. She is mentally and emotionally sharp. She's a heart-stealer. Despite the rarity of her predicament, I know that there other kiddos out there like her, in similar situations. Children with great lives ahead of them, that just have to make it through a rough spot.

So I'm really worried about election results. I really don't want to post anything political on my blog, but we're talking about something more than politics.

Everyone who can, should vote today. I support everyone's vote, regardless of their choices. We're all allowed to have beliefs and opinions all our own. I just really hope that no matter tonight's result, that Obamacare stays firmly in place so Norah can continue to thrive, and our family doesn't become financially destitute. What would happen to Norah, our most beloved star? We cant afford even a single day gap in coverage. I know there is more to Obamacare than this, and many people don't like it, but it has changed our lives, and has most assuredly helped save Norah's.

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. 

Five Years and a Scary Start

A couple months after Jeff's surgery in 2007

About five and half years ago, on February 5, 2007, Jeff had his 29th birthday. We had just met, he had just proposed a couple days prior, and on this day... his birthday... he had gone in for total spinal fusion surgery. His third major surgery in about a year (he had just had each of his hips re-done, six months between each surgery). And guess what? I kept a journal at the time, that I just re-found.

I was living in Phoenix at the time, while Jeff lived in Salt Lake City. His surgery was at the University of Utah hospital (where Norah was later born). That day was really difficult. I thought I'd be able to handle it while living a state away. I had no idea what we were in for. I received updates from his sister Emily, who I loved immediately upon meeting a couple months prior. Emily, this is what I wrote about you back then, when we hardly knew each other: "Today Emily and I cried on the phone together. She said that her mom was so strong, but that she's a big baby. I told her that we'd be big babies together."

The surgery took pretty much all day, and she was great about giving me updates. I wrote in the journal to Jeff on his birthday, "I had a rough time today. It was so hard not being there for you, and I wish that I had planned ahead." It was too difficult to be away from him. He was taken to the ICU post-op, and was there for a few days. He called me, but his voice was so scratchy from being intubated. It was too much to bear, so I booked a flight for February 8th. It was a good thing too, because in the wee hours of that morning, after he had been moved to the floor, he coded from a pulmonary embolism (a blood clot dislodged in his lungs). After being stabilized, he was returned to the ICU. While on the longest flight of my life, I wrote, "When you didn't answer this morning, I had a feeling that something was wrong. You just have to wait a little while longer, and I'll be there by your side to help you feel better... please don't leave me."

Jeff has a big family of ten. I should have been nervous to meet most of them, but things were so crazy that I wasn't nervous at all; I didn't have the capacity for it. I will always remember meeting his mom, Carol, for the first time. I stepped into Jeff's ICU room, where her deft hands were busying themselves with a crochet project. She looked up, and without a single word passing between us, we hugged. It wasn't a regular sort of hug, either. It was a clinging-to-hope-and-each-other sort of hug. It was perfect. We cried while holding one another, which woke my sleeping prince. On that day, a miracle happened, and Jeff smiled at me through his huge hockey mask. I remember being so grateful to the machines keeping him alive.

I went on throughout the journal, writing to him about why he needed to live. We had our life ahead in Seattle. We still needed to have our perfect wedding on the beach. We were going to have babies together. A doctor told us that we were lucky. They saw about a 50% mortality rate from pulmonary embolisms, and there was no obvious factor that showed who lived and who died.

My/our boss let me work out of the SLC office for a week. I would go to work, stay the night in a horrid green recliner at the hospital, then repeat. I was given gracious offers to stay with various people, but I didn't travel all that way to be with them. I was there to be with my sweetheart.

Jeff was in the hospital for a month. It was a long month. We were all surprised that he had to be there so long. Little did we know how much time we would spend just next door, at Primary Children's PICU. And little did I know how intimate I would become with medical equipment, similar to that wich kept Jeff alive. Equipment just like that which keeps Norah alive.


We are so thankful for everything we have. Jeff and Norah are the strongest people I know. I always say, that Jeff has more reason to complain than anyone, yet he never does. We can now add Norah to that statement, too. I love our sweet family. I wouldn't have wanted to have babies with anyone but Jeff. Our fifth anniversary is right around the corner, and as uniquely difficult as our life may be, it is filled with such love and joy that I never could have imagined.

September 22, 2007: Our perfect day at the beach.

Prunes and a Movie

Aside from cuddles with mama, there are two things that Norah may love best: watching movies and oral feeds (though not at the same time). She was playing with her Pez Dispensers (another favorite) when we turned on a movie. The first two photos was the result. I know, for those that may not be used to it, she has a lot of equipment in these photos (vent circuit, feeding tube, etc etc etc). Such is our life. The last photo is pretty self explanatory.

Prunes!