Our Most Beloved Star

This time last year, my water had already broken, and I was putting off going to the hospital in an attempt to prolong the need for medical intervention in an all-natural VBAC. Of course, things certainly didn't go the way I had intended, but what birth ever does? I read somewhere that only about 4% of babies are born on their due date. Norah was part of that small percent. Though it was about 31 hours between my water breaking and her arrival, Norah was right on time. These first two photos in this post were taken during Norah's first few days after birth at the U of U Hospital. I still can't bear to share her very first photos on here. They never fail to make me cry when I look at them.

On the topic of statistics, I've also heard that only about 1% of children become ICU patients. I wonder what sort of subset Norah belongs to - of pediatric patients that need prolonged support. My guess would be less than 1% of that 1%. Most families are fortunate to be in and out in a few days or weeks time. Some of my readers know what it's like to live in this alternate world. Our babies don't get to come home for things like holidays, birthdays, or other celebrations. It hurts.

But with all of the ugliness, comes so much beauty. Norah's path has been hard, long, and exhausting. But on it, we've found love in such amazing places. I can't begin to count the people I've met along the way: healthcare professionals, parents, and other children who are going through their own difficulties. These people are amazing. I've met professionals with incredible experiences that led them to their career choice. I've met kiddos that have had heart or other organ transplants. I've met kids waiting for transplants. I've met other long-termers like Norah, who are being sustained on life-support while waiting for time to simply help them grow, heal, or blossom. I've met families who have lost their children. And most recently, I met one of the sweetest girls ever: a 14-month old with such beautiful, expressive eyes. She died just a few days after we left the PICU this last time, and it has deeply affected me. I can't stop thinking about her and her lovely mama.

We have been through so much during this last year. I never could have dreamed any of this up, and nothing ever would have prepared us for it. We hurt and we cry. We laugh and we smile. We do everything we can to give Harper and Norah full lives despite our circumstances. We can't bear the thought of what we would do without the care we've received. Norah will be one year old tomorrow. I can't fully express what this means to us. I can't even fully express what it means to everyone that lives in Norah's world. And in all my full geekery, I close with a quote from Lord of the Rings, one that represents Norah in such a lovely way:

"I give you the light of Eärendil, our most beloved star. May it be a light for you in dark places, when all other lights go out."

Birthday Bash

Norah is again settled in at South Davis after an uneventful transport (this time we used South Davis transport instead of an ambulance, and it was SO much better). She's happy, lively, and tons of fun. The staff at South Davis missed her dearly, but now the PICU is missing her. It's probably not too unlike separate families that share custody of their baby.

Norah's birthday is on Friday! We invite you all to celebrate the big ONE with us on Saturday from 1:30 to 3:30 PM. For those of you that can't attend, we may set up something via Ustream, but I don't know if there will be much to see other than people eating cake and competing for Norah's smiles. Details regarding the party are in the flier below (click for full view). Feel free to RSVP in comments to let  me know if you are going to make it. Otherwise, you can email me.

On The Road Again...

After a week and a half at PCMC's PICU, we're headed back to South Davis on Thursday. We had a really great Care Conference, and I didn't even shed a tear. I was close, but Harper was in the room with us, and his presence encouraged my strength.

The truth is, I feel really good about our transition. We have developed a great relationship with South Davis' management. I'm optimistic about the near future, and will continue to work with them to make sure Norah gets everything she needs. We agreed upon protocol for when Norah gets sick, how we decide upon transport, etc.

Of course, this means that we'll be saying farewell (for now) to the PICU staff. I am hoping it won't be as difficult as last time. I sure love them. It's been great since Norah's been feeling better. This stay was at first quite critical, but over the course of the last week and a half, has become more social than anything else.

In other news, Norah has been fitted for new hearing aid molds since she outgrew her current molds. Hopefully we'll get them before we leave tomorrow, but I'm not holding my breath. She was also just fit for an orthopedic brace in an attempt to avoid hip surgery. Sigh. She hates it, but fortunately only has to wear it at night. I'm not sure how effective it will be, but it's worth a try.

Below are some of my new favorite photos. I noticed the bed said there was a 150lb weight limit so we let Harper get in bed with Norah for just a bit. These two sure love each other.

The Pack Family

I first crossed paths with the Pack Family on Christmas Day. Kelly and Ryan didn't know me, and I didn't know them. But I was in the PICU the day they lost their sweet 18-month old son, Colum, in a tragic car crash. I have thought of them often since that day, and finally decided to reach out to them, to share what was in my heart about the loss of their son, and how it personally affected me.

If you don't know anything about the Packs, a good place to start is here. Of course, if you haven't heard about them, you're either 1) not in Utah or 2) living under a rock. Their story was all over the news when it happened. Kelly and Ryan, with their son Finn (who's Harper's age) still have to work so hard every day to heal their bodies and their hearts. Just a warning: Kelly's blog will make you cry - and if you are brave enough to watch it, Colum's funeral video is also posted on there. It is quite possibly the saddest video ever; it will tear you to pieces. I heaved heavy sobs when I watched it, as it hit far too close to home. Our situations are so different, but the fear of losing my children sticks in the front of my mind and my heart every day in a very real, very unwelcome way.

Why did I email Kelly? Well, I have a feeling that her sweet boy Colum was with us when Norah semi-coded on Christmas Day. Here's the deal... back then, Norah was having frequent oxygen desaturations. She was turning blue multiple times a day, and always needed bagging to resuscitate her. But on this Christmas night, it was the first time in my recollection that Norah was able to work through it without being manually bagged. Her oxygen saturation had dropped really low (probably in the 50's), and her heart rate was something like 40. I turned her from her side to her back to talk to her, and she came back to us without further medical intervention. I am not at all religious, but I feel in my heart that Colum was there with us. You can read my email with the rest of the story, along with her feelings on her blog here. It is a very worthy read. And for those of you that have come here from Kelly's blog - welcome.

I have the feeling that our families are meant to be great friends. I look forward to meeting Kelly, Ryan, and Finn. I've said it before, and I'll say it again: life is fragile. Go hug your loved ones, and make sure you tell them what they mean to you. You never know which cuddle and kiss will be your last.

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.

Recovering

Well, if nothing else, we're in familiar territory. Norah is still hanging in there, and at least now is comfortably resting. We had a few little issues yesterday where she needed to be bagged, but for the most part she's pretty stable. She's getting a bunch of meds to help support her, including some continuous sedation to keep her relaxed without totally knocking her out. My least favorite is the albuterol, because while it helps open up her airway and lungs, it sure makes her feel awful. But they're pumping her full of different things, and are monitoring her closely. I'm so relieved we're in the PICU.

She's been playing catch-up with sleep. It reminds me of how she was after she arrested in November. Not a day goes by that I don't think of that awful day. Maybe eventually I'll be able to push it out of my mind, but it seems that won't happen anytime soon. Anyway - when we arrived in the PICU after that incident, she slept for like 2-3 days and hardly wanted to do a thing. It seems like she's in a similar recovery mode. However, this time, she will occasionally arch her back and let out her silent cry. She's still having a difficult time, and she's still hurting. My poor girl.

There are a few moments here and there when she tries to play or be affectionate. It reminds me that she is a tough girl, and will get better. It's as if she is reassuring me. But when she and I snuggle, she often looks at me with a weak cry, telling mama all about her owies, so I can reciprocate the reassurance.

A forced smile through drugged eyes. These moments may be rare and fleeting, but they remind me that she's going to get better. She's puffy from all the fluids and steroids they're giving her.

Trying to play with Inky and Piglet. Norah is even adorable with a severe case of bed-head.

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.

Off-Roading

I'm not talking about the fun kind of off-roading here. The title of this post is, of course, metaphorical. I'm referring to the kind of off-roading we're doing with our lives these days. You know: the unexpected bumps, the ups, the downs, the mud pits, the big dips into the scary holes... We're not in a hole, thank goodness. But the last few days have been pretty bumpy.

Our Fouth of July won't go down in the record books as one of the best ever. We spent the majority of the day cuddling on Norah, who was feeling pretty sick. She has some sort of viral thing, and it's kicking her butt. We went up on her ventilator settings (from a pressure support of 10 to 12), but it didn't necessarily seem to help. Her awake/resting heart rate was as high as 150-160, though it is normally in the 120-130 range. She was spiking fevers, and was clearly uncomfortable.

To our surprise, Norah significantly perked up on Thursday. She was playing, smiling, and oh so happy. We were relieved. Today (Friday) was a different story. She's super sick again, which is really odd behavior for an assumed virus. Her eyes were glassy again, her work of breathing was up, she was completely lethargic, and slept most of the day. We again went up on her ventilator settings (now up to a pressure support of 14), but I can only hope it helps her rest. She keeps coughing without producing secretions out her trach or in her mouth, so I asked if they thought she might have a small plug in her trach, which would require an extra trach (tube) change. We were just about to change it when her RT said that a little lavage suctioning should clear her airway if there is any sort of obstruction. Plus, her peak pressures haven't been up, which would happen if she had any sort of plug in there. The lavage didn't seem to do anything, and she's still sitting there with the same trach in her airway. But whatever... I suppose he is right when it comes to the peak pressure thing. (I know, sorry... more jargon, but I just feel the need to spew my thoughts.) Before we left this evening, she did her best to play and smile, but she was still a little off.

Of course I'm thankful for everything we have, but these bumps have me frustrated. I do my best to maintain perspective, but it's exhausting. I just want things to be easier for Norah. I want her to be able to run, when she can't even walk (or crawl... or sit up, for that matter). I don't want to have to drag Harper to the hospital every day. He wants to see his sister, but he's tired of the "doctors" (he thinks all of the staff are doctors) and other strangers we meet there. I want more time with my husband. I don't want us to feel so divided all the time, or feel like we have to pick and choose with whom or where to spend our time. I want more time as a family of four.

I know we should be glad that Norah will someday come home when others aren't so fortunate... and we are so very glad. But we're also exhausted. I would lie if I said that I didn't envy all these people having babies with "typical" experiences. At almost a year old, there are moms out there who have run the entire course of their pregnancy and have had their babies home for months in the same time that Norah has been living in the hospital. Our solace is in Norah herself. Those parents don't have this ray of sunshine. They don't have this little girl that changes the lives of everyone she meets. I would never trade her for any of these babies. She is worth every bit of drama, every tear, every dollar, and every effort. But I must admit that I sure do sometimes look longingly at the green grass on the other side of the proverbial fence.