Another Surgery

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

We were wrong.

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

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

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

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

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

Enough

It's been a rough couple of weeks for us: a hospital admission, pretty bad colds for all of us, impossibly painfully tight finances accompanied with lots of unpaid time off work, a huge unresolved misunderstanding with one of my family members (who's love and support I need right now more than ever), dietary issues, and now to cap it off, a really hard-to-swallow questionable diagnosis from one of Norah's doctors. He thinks that she needs spinal fusion surgery at the very top of her spine (C1 & C2). This is huge. This is life altering, and totally risky... and I just don't fully trust in the diagnosis.

So we are going through the motions for a second opinion in Delaware. Yep, Delaware. We are sending her radiology images to them to see if we can prevent a trip across the country with a girl that does not travel well or light. I'm not holding my breath. So, why Delaware? It's all for this brilliant man. His entire population of patients are those with a huge variety of skeletal dysplasias, where as the doctors here only have a small handful of patients with Norah's condition (the many different skeletal dysplasias can be vastly different from one another). So we don't just need specialty care - we need sub-specialty care. There are few places in this country with experts on skeletal dysplasias. People from all over the world travel to see this doctor, and with good reason. It's unfortunate that so few specialists understand Norah's condition... but we are so grateful for those that truly try (like our ENT). So if a costly trip to Delaware may save our girl from an irreversible invasive surgery, I'm all for it. She may still need surgery... but even if she does, I'll rest much easier knowing that only the best hands and minds are taking care of our girl.

So why the title of this post? I've had enough of being sad. I've had enough tears. I can't sustain it anymore. I'm putting on my big girl panties and facing issues with my head up. I'm going to focus on my health. I'm going to take care of my family. Yes, there will be moments of sadness, but I will hold onto the beauty and good in our world. I won't let others get me down. Jeff and I had a wonderful talk last night about what we want, how we want to feel, and how we will achieve our goals. We're so optimistic right now.  And what better teammate than my Jeffrey? I've had enough of the blue, and am ready for happier days. This seasonal change is the perfect time to start, since autumn is my favorite. I'll close this post with the motto of special needs families everywhere: I can do hard things.

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.

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.

Trust

Trust can be challenging for any parent when forced to share care giving duties with others... especially those that are outside of one's circle of family and friends. We trust Norah's care team to treat her like they would their own child. Though she is strong, she is also quite fragile. She depends on so many outside interventions, technologies, therapies, and treatments to not only live a full life, but to live at all.

Let me preface this story by stating that Norah is currently happy, healthy, and sassy as ever.

On Monday, the respiratory therapist assigned to Norah made multiple huge mistakes with Norah's ventilator. These mistakes persisted from 8am until I got there at 4pm. I won't go into detail, but I will say that these mistakes were completely hers. I do not blame SDCH; I do not blame nursing or the respiratory department itself. Despite the bi-hourly checks, nothing clicked in this RT's head to tell her that she had done something wrong. This therapist alone is at fault, and I honestly hope that she knows this. This is not a slight to her as a person. It is what it is.

So who do we turn to when our trust is broken? These mistakes could have potentially caused her permanent damage, or accidental death. (I hate even typing that...) What do we do when the person entrusted to care for Norah does something that could have been catastrophic? We turn to those we love. After notifying Jeff, I told two of my closest friends over text message, and without my asking for help, Cecily and Jaci were walking through the door of Norah's hospital room about ten minutes later. Boy were they a sight for sore eyes. Not only are they incredible nurses, but Cecily and Jaci are "Bulldog 1" and "Bulldog 2", respectively. They had to be sure that Norah was okay. They had to be sure that I was okay. They give us such unique support being that they are nurses, they are my friends, and they have become my sisters. I love those girls.

So what happens next? Well, an incident report was filed. It will be discussed by the doctors, directors, and corporate honchos. They will come up with detailed, actionable items that will help prevent this from ever happening again. Additionally, I had wonderful discussions with both the attending pediatrician and the Respiratory Director. They were both wonderful, especially the Respiratory Director. He was apologetic. He was angry. He has a sweet spot in his heart for Norah, and he seemed genuinely angry with Monday's events. SDCH understands that we put their trust in them. I really do have faith that they will be more vigilant than ever in paying attention to detail.

Trust is such a fragile thing. While I trust SDCH, I am so grateful that we've never missed a day with Norah. I hate to think what could happen if we weren't there daily - and that is true regardless of the hospital in which she lives. 

Family Love

Poor girl's rash

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


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

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

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

Daniel and Auntie Shauna

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

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

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

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

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

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

Jinx

Upon boasting about Norah's progress, the universe decided to kick us down a notch to remind us of how fragile Norah's health status is. After a day of Norah's support needs progressively increasing, South Davis decided to send her back to the PICU in the middle of the night/early morning on Wednesday.

She was up on all of her vent settings, and desatting (turning blue) whenever they tried to turn her down even a little bit. So Life Flight came to get her (via ground transport), and we were able to get a direct admit to the PICU. As usual, it didn't take long for word to get out that Norah was back. Fortunately, her nurse that first morning acted as our bouncer, and wouldn't let anyone in while we slept for close to an hour. We were both exhausted. They did a full workup of labs and various tests. For the first time in I don't know how long, Norah tested negative for rhinovirus (common cold). Most tests have come back negative so far, but they aren't able to test for every single virus. Her fever was persisting for quite sometime, but once we were able to manage it, she was in much better spirits and could sleep restfully.

We're hoping to get back to South Davis as early as Friday, but we'll see. I'm so glad we went back to the PICU before she got as scary as she's been in the past. Thank you all for your well-wishes!

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.

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.

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. 

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.

Nervous

Sleeping beauty and her prized 60ml syringe package
(Look at all of that hair!)

Fortunately, Norah's positive result for MRSA was merely a colonization. MRSA is everywhere in hospitals, especially long-term care facilities. It is a low-ish population, and she hasn't shown any signs of infection. We're relieved, but we also were never super worried to begin with.

Norah has been feeling better in the last week or so, but has been fighting naps lately. She gets pretty crabby when she's tired, and it's so difficult to not give in to her tantrums. I love when I get to experience typical parenting woes instead of only being buried in the intense worries that come with a medically fragile child.

On the topic of worries... Norah's soft palate (the back of the roof of her mouth) cleft repair is scheduled for Monday September 24th. We're nervous, but mostly because it's a full surgery with full anesthesia. Her ENT Dr. Jeremey Meier (who also performed her trach surgery as well as countless bronchoscopies) is one of the few local pediatric ENTs that do the cleft repairs, as opposed to referring out to plastics. We adore him, and like so many of Norah's specialists, Norah is one of his favorite patients. He will do what's called a z-plasty (which will also stitch together her split uvula), which is considered the best treatment for a cleft in the soft palate. He said if all goes well, she hopefully won't need a follow-up surgery. I'm glad it's just her soft palate, which is all soft tissue, as opposed to a hard palate, which is bone. Oh - and a word to the wise: I would not recommend a Google image search for z-plasty, unless you have a high tolerance for graphic medical images. Even when adding the search term "cleft", it will pull up some non-oral images that are quite graphic... even some of the oral images are graphic for that matter.

I talked to a nurse friend (Cecily of course) who has made several trips to Guatemala with Hirsche Smile, a team that does charity palate repairs. She said that those kiddos typically only get Tylenol to ease their post-op pain. Yikes. So we consider ourselves fortunate to have access to such great medical care. Norah will certainly get more than Tylenol, and as usual, Cecily helped calm my anxieties. When our family is in a better financial position (likely to be far, far, far in the future), I sure would love to donate to a cause like Hirsche Smile, to help them give care to kids that were born to unfortunate circumstances, with few places to turn for help. When I see these families, I feel guilty for feeling like our own financial situation is bad. I suppose it is hard for us, and that's what matters, so long as we maintain a humble world perspective.

As far as recovery time goes, we're not yet sure. It could be an overnight stay in the PICU, or it could be a week. Dr. Meier said he'd ideally like to see Norah back to her baseline and feeling great before she goes back to South Davis.

On a lighter note, who would like to see Norah play with her suction tubing?

Home Sweet Home

Well, we've done it. With the help of our family, we're all moved into our new home. We still have to wrap up things at the old house, but that's mostly cleaning and a bit of yard work. We have a long to-do list here at the new house, but things are going so smoothly. I want to send a HUGE thank you to our family, that helped us move (one load, yeah!), brought us eats, treats, and have continued to help us with unpacking and such. We haven't gotten around to taking pictures yet, but we won't forget to share them with all of you.

The house is amazing. It's definitely the nicest home I've ever lived in, that's for sure. We're calling it our "early retirement" since taking out our retirement money helped us afford it. Oh well - it's what our family needs. Harper has already been asking when Norah gets to come home to the new house. I just hug and squeeze him, and tell him that someday she'll come home. She'll have her own room. She'll have everything she needs here. It won't be easy to care for her with her medical needs, but we're willing to do whatever it takes.

Yesterday we found out that Norah is going to need glasses. Nearsightedness is related to her condition. We have to go to the opthamologist every three months to make sure her retinas are intact. Her retinas looked good, but he did say that she had mild myopia (nearsightedness), and will require glasses when it's age-appropriate. Our appointment took seemingly forever. We were there for hours, mostly waiting. You would think that they would allow a trach/vented patient to be bumped to the front of the line. We had battery life, oxygen tanks, and respiratory fragility/virus susceptibility to worry about, but that didn't seem to speed us through the appointment like it does at other clinics. As a result, Norah hit her new record on the home vent: four hours.

With the excitement of moving as well as Norah's success on transports (with the home ventilator, photo left), I eagerly asked South Davis when they thought she'd be able to go home for a few hours for a day trip. Exciting, right? Wrong. They don't think insurance will allow us to take her home. They think if she's well enough to go home, even for a few hours, she should be well enough to move from LTAC (Long Term Acute Care, with a better nurse to patient ratio of like 1:4) to skilled nursing (where the ratio is something like 1:8). I was pretty much crushed. I wanted to cry. I didn't. I think I'm just too tired of crying so often throughout the last year. I'm still going to hold on to hope that she will be able to come home for a day trip, insurance be damned. I want to show Norah her room. I want to cuddle her in the rocking chair, play on the carpeted floor, have family snuggle time in mommy and daddy's bed, and let her take a nap in her own crib. I want to sit her in the grass in the yard, and show her the flowers and the dragonflies. I want a little taste of normalcy, even if it's only for a short time. Sigh. Patience was never my strong suit, but I'm working on it.

Spoiled by the PICU

Norah is so close to being at her baseline. She's just one tiny setting away from getting there, and they are going to wait quite awhile to change it. We have a care conference tomorrow. We'll discuss the short- and long-term plans, which I'm almost entirely certain include going back to South Davis Community Hospital within the next couple of days. (I'll send out birthday invitations once we know for sure!) We'll also decide on agreed upon protocol for managing things like illnesses, transport, etc. 

I'd be lying if I said I wasn't a bit nervous about the meeting. I almost always cry afterwards. This time, I know I will, so I've been preparing myself by chatting with some of her caregivers about it. Jeff and I are going to bring up our concerns of Norah's safety at South Davis. Don't get me wrong - they saved Norah's life when they did CPR for those nine long minutes in November (and I will forever be beyond grateful to them). We know how much they love Norah. But South Davis isn't the PICU, and we know it isn't supposed to be. Simply put, the PICU has spoiled us. They've set a tough standard. At South Davis, we worry about vent management as well as their response to acute situations. I want to do everything we can to avoid anything that remotely resembles the awful state she was in when we arrived at the PICU. Here's the thing: if we didn't bring up these concerns now, and something awful was to happen to Norah... or if Norah was to die.... I would never ever forgive myself. I've been thinking about this a lot lately. It may have triggered a need for me to seek out an Ambien prescription.

My emotional sensitivity has been overwhelming these last few weeks. Before visiting Norah today, I dropped Harper off at the park with his Auntie Emily and his cousins Logan and Emma. Emily and I were chatting at the park, and I found myself fighting tears. I was surrounded by kids having a great time at the park while their caregivers sat on blankets on the grass to watch them have fun. In that moment, I didn't envy them. But I felt this severe longing for Norah to be with us. I wanted her to laugh and smile with us. I wanted to nuzzle her in the shade and giggle at her brother's shenanigans. I wanted to have to stop her from crawling into trouble. But none of those things are our reality. Norah is still in the hospital.

It sure is a good thing she's feeling better, or else that would make things so much more difficult. Below are a few photos from the last couple of days. She's back to her perky, smiley self, but she's begun to develop a little "stranger danger" as well as separation anxiety. Needless to say, it makes it so much more difficult to leave her at the end of the day.

Music Therapy was a blast! Her feet were twirling, her entire body was bobbing, and her smile was shining! She had the best time! ...And wow - the therapist and intern were amazing musicians!

Food? YES PLEASE! Norah finally got to start eating again. Her Speech Therapist was ecstatic with Norah's progress. She was beyond enthusiastic about eating, and it showed! And can you believe the pigtail cuteness?

Her nurse Angie, Norah, and I had a blast watching soccer and playing on the floor. Go Seattle Sounders!

Bright Eyed

Norah is definitely on the mend. After these last few scary days, she was finally able to play for more than two seconds. She even gave us some of those patented Norah Smiles. How I love this girl. Oh - and apparently she mouthed "dada" to Jeff when he was saying it and doing the sign for "dada". I still say her first word counts as when she did the sign for "eat", but maybe we'll give this one to him. :)

They attempted to turn down some of her support settings, but had to go back up. She isn't ready, and no one wants to push her. The good news is that she no longer needs sedation to relax. She's still getting steroids, antibiotics, Albuterol, and lots of CPT (chest percussion therapy/chest physiotherapy) but they seem to be helping.

And it seems that South Davis is really going out of their way on this one. The Respiratory Director, Rick (one of our favorites), is really diving in to determine what could have been done differently, and is also searching for a possible way Norah could have gotten sick. He is always great about investigating situations. He's also spoken with nursing and his RTs to get the full picture of what led up to Norah going back to the PICU.

Once Norah got sick, I don't think this trip to the PICU was avoidable. She has zero reserves in her lungs, so any interference or setback is a huge deal for her. It hits her exponentially harder than a healthy baby. BUT - the transport could have been handled differently. From now on, they're going to send off for Life Flight ground transport if Norah is in respiratory distress. When we left SDCH, Norah wasn't nearly as bad as when she arrived at PCMC. I am pretty sure it was from improper bagging, but I'm making sure that is addressed.

I also think I need to be pushier when it comes to troubleshooting Norah's issues. I had spoken to various SDCH staff members (mostly RTs) about things like trach changes, x-rays, and only using her bag with the PEEP valve, but my suggestions were all dismissed. I should have been pushier. I have learned my lesson. After all, when we did change her trach shortly after admission to the PICU, we found that there was a semi-soft plug in her trach that was interfering with ventilation. So while I prefer to be friendly and work with everyone as a team, I need to learn when it's time for no-more-Mrs.-Nice-Mom.

Mud Pit

Remember my last post about off-roading? Well, we hit a mud pit. Norah is back in the PICU.

I arrived at South Davis Sunday afternoon to find Norah not doing well. Her eCO2 (end tidal carbon dioxide) was pretty high (in the 60's, when normal is something like 35-45). As a result, her skin color was purplish. She was really struggling to breathe despite her vent settings being bumped up really high, and she couldn't get comfortable or calm. Her RT and nurse had been in there for the last half hour or so, had paged the on-call doctor, and were getting ready to call me. Norah had a look of terror on her face that I know all too well. This is her pleading "help me" face. I tried to soothe her, but she continued to plead directly to me. Her eyes say so much. She clearly needed to go back to the PICU.

South Davis Metro Fire came to our rescue again, transporting us to PCMC. I rushed behind the ambulance, driving separately. The charge nurse from South Davis rode along with them though, and for that I am so grateful. The manual bagging she required for the entire trip caused her eCO2 to skyrocket to 125. By the time she got up to the PICU, she was doing what is sometimes clinically referred to as "guppy breathing", and was frantically arching her back and flailing her limbs. She wasn't moving much air in her lungs, and the staff wasted zero time getting to work.

The moment I saw her nurse's face, I felt a huge weight lift off my shoulders. Andrea. We love Andrea. She knows Norah; she cares deeply for her. Andrea took a moment to hug me before she jumped back into the chaos. I'm not sure how I managed not to cry. Then I saw more familiar faces: doctors, respiratory therapists, more nurses, even the clerk. Word spread quickly that Norah was back, and there were so many people coming to check on her. They were all so worried. I got a million messages on my phone, and I am just so thankful to all of you for lending us your hearts during the drama.

After some sedation, we got her settled in. Her eCO2 slowly descended. They played with her ventilator settings, placed an IV in each foot, drew some labs, and started some new medications. She is one tough cookie. She fought the sedation a little bit, and a couple times reached for my face or something to play with. And even more amazing, multiple people said that with the way Norah was when they first brought her into the PICU, they were surprised that she didn't code. But she kept fighting. I'll never forget watching the frenzy of everyone working on Norah, but Andrea was there, locking eyes with Norah, doing everything she could to soothe her and talk her through it. We weren't alone, and Norah knew it. Norah knew she was in a safe place for what she needed at that moment. They helped prevent Norah from coding, but even more-so, Norah is so brave and so strong to have fought through it all and come out on the winning end.

So my heart is a little sore right now. She is doing better, though is still having fitful moments where she struggles. They're doing everything their skilled hands and brilliant minds can do to help her get comfortable and get better. I just don't know what I'd do without my PICU peeps.

DDH

Well, I suppose it was time to add just a little dash of drama to our lives. We recently had an orthopedic consult as part of the preparations for Norah's transfer to South Davis. They wanted x-rays of her hips and spine. The good news is that there is no scoliosis (yet). The not-so-good news was that the films suggested her hips were not in their sockets. They ordered an ultrasound to get a better look, and sure enough found that she has developmental dysplasia of the hip (DDH).

One of two things will happen: either they'll be able to pop them in place while under anesthesia, or they'll have to go in surgically to clear some space and pop them in. This could include lengthening muscles or tendons, and/or clearing out debris from the socket before popping them in. She'll have to be casted afterward. 

They may coordinate all this with her soft palette cleft repair at 15-months. We're not sure just yet. It would be nice to have everything done under the same anesthesia, but it will have to be decided if that would be too much for her at once. We should know in a few months.

The good news here is that we caught the problem. Surgery will give Norah a fighting chance to avoid hip replacement surgery in childhood then in early adulthood like her daddy had. There's no guarantee that her hips will form perfectly, but it will hopefully help. 

Below are some fun pictures of our recent busy week or so. We're enjoying our last few days during this admit at PCMC. It's been difficult to think about how much we're going to miss everyone, so I'll save that for another post.

We're glad that since they've made her hearing aids so yummy, that they're also fairly waterproof.

Snoozing in mommy's lap.

PEEKABOO! Harper as a reputation for being shy at the hospital. He closed the door, curtain, and hid from everyone that was still in Norah's room.

Make-shift "fort" on daddy's lap.

She used to loathe oral suctioning. Now she thinks it's fun. Norah's speech therapist has really helped her with her oral aversion.

Mother's Day and Outdoor Excursions

Mother's Day began with some tears. Everything is fine, but I had a good half-hour phone discussion with one of the PICU attending physicians. Our main topic was a possible transfer out of the PICU to South Davis Community Hospital. This caught me a little off-guard, as there has been little to no serious consideration to send her back there. The conversation simply stirred up some strong unpleasant memories of what happened the last time Norah was there. More to come on South Davis soon. Leaving the PICU is just big a topic for the moment.

The four of us had a great Mother's Day though. I spent it the only way I would ever want to - with my two wonderful kids and my amazing husband. Sure, it was at the hospital... but I didn't really care. All that mattered was that we were together. On Sunday, I did a whole lot of thinking about all of the mamas out there that have lost their children. It happens all too frequently around us in the PICU. It is a sad place, but we like to think know that Norah brings a whole lot of light to that unit. We sure are fortunate to have both Harper and Norah... and we sure are grateful that this Mother's Day was spent as a family of four, and not a family of three. My heart breaks for parents who have lost a child.

Enough of the gloom... So we have been spending time outside with Norah. It's kind of a big deal. The nurse takes her wagon full of gear - portable suction, trach bag, extra trach tubes, portable monitor for her pulse-ox, etc. The respiratory therapist wheels the extremely heavy and difficult to maneuver ventilator. I get to carry our sweet girl. We were taking her in the wagon, but not only is there little room for her, but it is too noisy and bumpy a ride for her liking. Whatever the princess wants, the princess gets.

From earlier in the week: They have the sweetest relationship right now. I love watching them play.

Enjoying the Angel Garden outside the north entrance at PCMC. It wasn't cold, but Norah didn't like the intermittent wind gusts in her face. She eventually snoozed in my arms.

Peekaboo!

We joke that some people may think this is what one of our favorite nurses, Cecily does all day. In truth, she is one of the smartest, hardest working, loving people I have ever met. She's an amazing nurse!

Nom nom nom: squash!

Harper zonked out pretty quickly after the long day at the hospital. He was such a good boy all day. The green dog is Scout (from his Auntie Kristen!), and Norah has a purple one, Violet. They're super cute and even say their names.

A Big Little Step

We, along with Norah's doctors, have have had multiple discussions about Norah's long-term plan. As I've probably mentioned before, Norah has another year (give or take) before she will be big enough to give the home ventilator a try. Her pulmonologist agrees that the thought of an 18-month(ish) Norah in the ICU is a sad thought indeed. All along, I've truly believed that she'll be weaned before she's big enough for the home vent.

Well, we took a big little step today. I spoke with this week's attending physician (who knows Norah well), and we decided she was ready for her first trial off of the ventilator today. We went into this with few to no expectations. We would see how she did, and put her back on the moment she seemed like she had enough. How long did she last? Three minutes. 


Perhaps we need a little perspective here. Aside from very brief disconnections from the ventilator (both intentional and accidental), Norah hasn't been off the ventilator since she was trach'd at six weeks old. She'll be nine months old on Friday. These three minutes were hard work for her. She cried, looked a little scared, and got sweaty (as she always does when she's upset). But the big story here is that her lungs continued to move air well, and she didn't desat (lose oxygenation in her body). Once we put her back on, she was still working hard to breathe, but recovered quickly and went back to playing and smiling (photo above) even before the care team left the room.

So what does this mean? Well, I can tell you what it doesn't mean. It doesn't mean she's coming home tomorrow. It doesn't mean that we suddenly have a concrete plan laid out for her. We'll continue to work on building her tolerance for her time off the vent. This will likely be a long process, and will be the foundation for determining our next steps. Her safety is our number one concern. We also need to make sure we dont work her too hard, depleting all those calories that she needs to grow.

We will continue to be easy on the expectations. As always, Norah will tell us what she needs. It isn't always loud and clear, but we're doing our best. I'm so proud of Norah. I've said it before, and I'll say it again: she is the sweetest, strongest, most amazing person I know.

Care Conference

We had our recurring care conference on Thursday. We got together with some of Norah's many care givers to discuss how things are going and the current plan for care. I never fail to cry during or after these meetings.

Everything went well, and Norah is doing great, so that wasn't the cause for my tears. The problem is that these meetings remind me that Norah is so far from being ready to come home. They remind me that while she's happy and thriving, she is still a PICU patient. Her smile makes that easy to forget.

Will she wean from the ventilator soon? Probably not. Will she be home for her birthday? Not likely. Will she even be home for Christmas? I don't know. This experience has been the ultimate test of patience, strength, energy, and optimism. I'm feeling pretty tapped out of all four lately.