Magic Wand

When I am asked by various people if there is something they can do for me, I frequently respond with, "Only if you have a magic wand..." I've often felt that there is little anyone can truly do to help us.

Yesterday I realized that these offers aren't about fixing our problems. They're not about taking away pain or tears. Instead, these offers are about helping take small burdens away. They're about bringing smiles to our faces. And they're about showing how much love there is in this world to share.

I was recently contacted by a wonderful local family, The Billingsleys. They wanted to do something special for sweet, brave, inspirational Norah by spoiling her silly for Christmas. They wanted to make this holiday extra special for our family. Yesterday we had the privilege of meeting Sarah, Brian, and their sweet son Bentley, who is just one month younger than Norah. Sarah held Norah for a bit, we all chatted, and they loaded us up with tons of gifts.

But it isn't quite as simple as that. Sarah and Brian reached out to friends, family, and coworkers to raise an astounding $500 for Norah's gifts. They proactively committed themselves to doing something special for a family going through a tough time, and I am so honored that they chose us. They deserve so much more recognition that I could ever hope to drum up.

We send the most heartfelt gratitude to all of those involved with this incredible act of love, especially the Billingsleys. You may not have had a magic wand, but that sprinkling of magic dust is going a long way. Thank you thank you thank you! You have helped us give our daughter the Christmas she deserves.

Miracles

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

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

     -Lemony Snicket, The Lump of Coal

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

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

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

      -Mr. Gold, Once Upon a Time

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

Bounce!

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

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

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

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

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

Even her eyes are smiling.

Triple Goobers

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

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

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

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.

Giganto Blanket

I've been lamenting to friends and family that my blog has become a bit depressing. People always tell me that it makes them cry - especially those that personally know our family, and love Norah so much. So I've decided to show you something a little on the lighter side, that makes me smile.

This genius knitter makes "giganto blankets", using PVC pipes as needles and wool roving instead of standard yarn. I want to do it too, but the wool roving would be crazy expensive. Either way, there is something I love about this video. Enjoy.

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

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!

Harper's Santa Letter

He of course needed some help, but Harper was excited to write to Santa this year. He is such a thoughtful guy that he wanted to make sure that Santa didn't forget Norah. He's been talking about this castle nonstop for the last couple months. It's a good thing Santa makes it in his workshop. 

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.

A Thankful Thanksgiving

Punkin Pie Time!

We had a lovely Thanksgiving. We cooked at home, then brought in some good eats for Norah. She had a taste of the mashed potatoes, made a sour face, then spit them out. The pumpkin pie was a different story. She gobbled it up, loving every bite. It was a ton of fun. As for Harper, he has been a very picky eater lately. He wanted nothing to do with the traditional Thanksgiving Day fare... well, aside from the pumpkin pie and pumpkin cheesecake.

Though I've said these things a million times before, I'm going to say it again anyway. We are thankful for so much. We are thankful for the modern machines and technology that sustain Norah in a way that nothing else out there could. We are thankful to the insurance that helps us pay for it all. We are thankful to the care and love we receive from all over. We have doctors, nurses, therapists of many varieties, CNAs, friends, family, and total strangers that send us love and affection. We have such a special family, and we don't know where we would be without any of these things.

So, I thank all of you for continuing to follow our journey as we test our patience, try with everything we have, and stay as positive as we can.

xo

The pie container doubles as a drum

Happy (Miracle) Birthday, Norah!

My Dearest Love Norah,

On November 21st of last year, exactly one year ago, you died for nine minutes. Your heart stopped beating. You weren't breathing. The staff at South Davis participated in a miracle: they helped bring you back. But I'm pretty sure our family gets a good portion of that credit, too. You are the toughest and bravest girl I know. And I like to believe that you knew that your family was unwilling to give up on you. Even at just under 4-months old, you must have known that your family had been there with you every day, fighting that fight alongside you.

I've had multiple conversations with various health care workers, who have said similar things about CPR. Many of them say that there is something intangible that tells them when it's time to stop CPR, and when to keep going. Everyone in that room must have known to keep going. Nine minutes is a VERY long time to be administering CPR. People are always astounded to find out that you were gone that long, yet didn't seem to suffer any long-term damage. The sound of the charge nurse's (Lorey's) exuberant "YES!" when she heard your heart beating again, will forever be etched in my heart.

It doesn't need to be said that November 21st is a date that I will always remember. We call it your Miracle Birthday, and we plan to celebrate it every year. Today we brought cookies for the staff at South Davis, and a fun developmental toy, a play tea set, for you. For the first time that I've seen, you sat up all on your own for several streaks of solid time to play with it, though they were very wobbly streaks of solid time. We're all determined that we'll be celebrating your second Miracle Birthday at home... But perhaps we'll make the rounds to both PCMC and SDCH to remind them of what good work they do.

It has been an amazing year, my sweet girl. You are the light in our lives. Your are the sweetest, most adoring baby sister, and the cuddliest, smartest, most loving and beautiful daughter. We are so thankful for this last year with you. How fitting that this year, it falls on the day before Thanksgiving.

We love you so much,
Mama, Dada, and Harper

Literally minutes before you coded last year: as happy as could be.

Right after we rushed back to PCMC's PICU.
You slept for a few solid days.

The first smile post-arrest. You gradually showed signs
of your old self again, and we knew that you were going to be just fine.

What a difference a year makes. This photo was taken
a couple of days ago. Harper gave you a
"huggle" while you watched Charlie Brown Thanksgiving
together. You were playing with his hair while he shared
your crib... which he LOVES to do.

Checking out your Miracle Bday present.
You love your new tea set... and so does Harper!

Loneliness

Oh my heart is so sore today. Last night, We were saying goodnight to Norah: waving, smiling, and telling her that we would see her tomorrow, when it happened for the first time. She realized we were leaving, and began to sob. Hard.

We rushed back to her crib (how could we not?!) to tell her how much we love her. Her CNA came over too, so she could help ease the transition of our leaving.

I cried to my mom on the phone, and Jeff and I held onto Harper so tightly when we got home, trying to soothe each other.

I have experienced my share of heartache (and then some), but this one ranked up there. It isn't just about feeling sad for myself. It's about Norah's sadness now. It's about her confusion. It's about her heartache. It's about her wanting her mommy and me not being there for her. I feel like she thinks I'm choosing not to be there. She doesn't understand. All she knows is that we're not there. As unrealistic as I know it is, I have such guilt for not being everywhere at once. I want to snuggle her all day. I want to play and sing and laugh with her... But I can't be there and also give Harper what he needs. Where is the balance? Just when I think I've found it, everything feels shaken up again.

And the twist of the knife in the heart came when I woke in the middle of the night with a sore throat and unhappy sinuses. I can't risk getting her sick, but she let it be known yesterday that her emotional needs are becoming increasingly important. We can't win either way, and I just don't know what to do anymore.

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.

Adventures in Mixed Media

Now that I have a dedicated space to bring out my inner artist again, I've really been enjoying so many projects when I have time. Which, you know, isn't too often, but it is so much easier now that I have this space. I've mostly been knitting, quilting, paper crafting, and even busting out with the paints and canvas!

In an attempt to channel my inner Angie, I wanted to do a couple canvases - one for Norah, and one for a very special someone. This was my first time ditching my precious oil paints for acrylic, and it wasn't so bad. I was really going out of my comfort zone with the mixed media. It took a conscious leap for me to "mar" the first painting with the die cut phrase. But after that first splash of Mod Podge, I was all in, and it felt great. Instead of channeling my inner Angie, I found just a different part of myself. 

Back when Harper was a baby, he was very difficult to get to sleep. We had to rock him and walk around with him. His fancy pants swing was not an acceptable substitute, and he let us know it. So I made up a song for him in an attempt to lull him to sleep. This lullaby carried over to Norah, now that the words held an even deeper meaning. Sometimes she resists sleep during our visits because she doesn't want to miss a moment of it. But I want her to know that when we sleep, we can dream our one sweet dream of us together, always. I used this lullaby as the focus of this first canvas, which hangs in our hallway at home. I may make a little one for her room, too.

 Materials: 16x20" stretched canvas, card stock (cut with my Silhouette Cameo), copy paper, acrylic paint, mod podge

We were first admitted to the PICU back when Norah was a tiny and frighteningly fragile three weeks old, by this awesome nurse. As we navigated our new life in the hospital, Cecily was always there for advice, support, and much needed laughs. She went from being our primary nurse to Norah's auntie. In fact, she was booted off of Norah's care team by the charge nurse team because she just became so close to our family. There is this song, that Cecily has dubbed as her song for Norah. It is so sweet and so perfect. I used my favorite photo of them in this canvas, along with quotes from the song. And check out that look between them. The love there is undeniable. Cecily is part of our family, and even Harper, Mr. Anti-Social, just adores his Ce-ci-wee.

 Materials: 16x20" stretched canvas, card stock (cut with my Silhouette Cameo), acrylic paint, photo, ribbon, Micron pen, rubber stamps & ink, mod podge

SSFC vs. RSL

Well, it's that time of year: the trees are going bare, the air is getting cold, the MLS Playoffs are here, and for some dang reason, Seattle Sounders (SSFC) and Real Salt Lake (RSL) are battling it out again. There are few things in that stir anything up remotely resembling a family feud in our house. There are only two, in fact: Mac vs. PC and.... SSFC vs. RSL.

We're disappointed that we aren't going to a playoff game this year, as we did last year. We're trying to adjust to Jeff's new work schedule, Norah has had lots of appointments, Harper and I are getting over a bug, and things are just too all-around crazy. But I probably don't have to explain that to my readers.

So instead, we battle it out at home tonight. And really the point of this post... to share two photos of the two cutest soccer fans on earth:

Seattle: Harper's birthplace, the
hometown of my heart, and part of
the USA's unofficial soccer capitol.

Salt Lake: Norah's birthplace, more or less Jeff's
hometown, and... I have to give it to them -
the home of some pretty great soccer. 

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.

Laundry Day

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

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

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

Having Her... Without Having Her

I have been feeling quite conflicted lately. Yesterday, I had a chat with some of the staff at South Davis about that really awful day almost exactly one year ago (November 21st, a date I remember well). It's hard to put to words how overwhelmingly thankful I am that she was brought back that day. We all fought so hard, and were really fortunate that we were on the winning end of that battle. But truly, something inside me knew that it wasn't her time. But of course, perhaps that could have been denial of the reality of the situation. I've now become semi-obsessed with recounts of near death experiences. Did she see me crying in the hallway? Did she see Harper anxious to get as far away from the situation as possible? Did she see her daddy doing his best while being pulled in all sorts of directions? Did she see the staff at South Davis, furiously doing chest compressions while bagging her? How much did she understand at not even four months old? Does it even matter when it comes to one's soul? As a strongly agnostic person without any religious ties, it is tough for me to reconcile science, spirituality, and reality.

My heart is conflicted about how thankful I am that I can go see her anytime I want when I miss her, with the anguish that comes with being so close yet so far away. We live separate lives. We don't get to be together for every little thing. As she gets older, it gets harder. There is nothing that makes me both happier and sadder than seeing how excited she is when Jeff and I step through her door. I just know that she's been waiting all day for us, wondering when we would finally arrive. She wants to play. She wants to cuddle. And we have to cram it all into a short period of time. We have her, without having her. It is never enough time. When we have to say goodbye, I always walk away with a sad, lonely feeling in my heart. Every day. The worst part of it now is that I recognize the same thing in her eyes, too. She hates when we leave. I'm not sure if she understands why we aren't together, and that kills me. I can feel that she is hurting, too. But she is so much stronger than I am. She doesn't cry. But that might make it even more sad. This separation is all she knows.

Norah is so smart, and so aware of everything and everyone around her. She's always been that way, even at just a few days old. And others comment on what an old soul she is. But in some ways, it works to her detriment. If ignorance is bliss, what does that make intelligence? How much longer will we have to wait to be together? Will she be walking and talking by the time that happens? Will she be going to school? Will she be a grown adult? Okay, I know that she'll be coming home sooner than that, but sometimes it feels like the day she comes home to stay is a lifetime away. When she was first trach'd, no one would have ever guessed that she would still be living in the hospital at fifteen months old. So what does that mean for the future? My patience meter is running on empty these days, and it has got me really emotional. Some days I feel so on top of everything, and other days are just a tear-fest.


But we keep going. We keep going because we don't have any other choice. Our situation is only as hard as we make it. We could be like most of the other parents of the kids at South Davis (though there are some exceptions), and just resolve ourselves to the fact that she lives there. They rarely visit, and it breaks my heart. So of course we can't do that. We go every day because there is no other way. She is our family, and we do everything we can to give her the best life possible. So we keep on going. We may not like it, but we know that we can do hard things. The last fifteen months proves it.

Harper's first carousel ride at the Zoo. We try to do special
things with him so he doesn't feel like he has too much
of a bum deal. 

After going to the zoo, we wanted to go back for
a second visit with Norah, especially so she could
play with the little monkey we got for her. We're so glad we did.

Double Halloweens

Harper enjoyed two Halloweens this year. The first was at South Davis, and the second was at home.

It was a busy day, and it was a poor choice to start it with dentist appointments for both Jeff and I. My poor hubbs got one filling and had his top two wisdom teeth pulled. He hadn't anticipated how much it would hurt, and ended up spending most of the day stuck at home managing his pain.

In the afternoon, I took Harper to South Davis so he and Norah could go trick or treating together. They lined up all the patients in the halls of the first floor for their annual event of passing out candy to the community. Jeff's sister Emily brought her two kids so she could help me juggle Harper and Norah. I held Norah while her RT carted her ventilator and oxygen tank. She was a bit overwhelmed by everything, but not in a bad way. She just hasn't seen too many crowds quite like this. She was so adorable in her Princess Leia costume that was custom tailored by a friend. (Thanks Michelle!!) It fit perfectly, and was a million times better than it was when it came out of the package. My "costume" was a matching Leia hat that I had knit just for the occasion.

Afterwards, we went back home for a bite to eat followed by more trick or treating around the neighborhood. Harper sure hit the jackpot, even though he isn't a huge candy lover. It was a fun day despite having to do things in a modified sort of way with Norah at the hospital. Sadly, I didn't get a photo of Harper and Norah together... what was I thinking?!

I've been awfully emotional lately, and I can't quite put it into words yet. Maybe it will be anther post for another day. I hope you all had fun and safe Halloweens with lots of treats and not too many tricks.

Trick or Treat!

Norah uses The Force!

Finally Catching a Break

Sometimes I wonder when our family is going to catch a break. I figure I have good karma coming my way. I let people into traffic, I wait for pedestrians, I open the door for strangers, I go out of my way to be helpful and courteous to others. I don't have to tell my readers that we've had a trying time during this last year or so.

Well, we've finally caught a break.

We had an appointment with Norah's orthopedist on Thursday. Back in July, he fitted Norah for a hip harness to help push her hips into place. The amazing news? It is working. Her hips feel solid in place. The even more amazing news? This means she has no immediate need for hip surgery! Oh but it gets better...

Right as we were walking into the clinic at Primary Children's, South Davis' social worker called me. She let me know our insurance company approved our request to take Norah for a day visit HOME on Christmas Day. Yes, my wonderful readers, you read that right. For the first time since September 6, 2011, when Norah was only 41 days old, she will be home for a few hours to be with her family on Christmas Day.

Though we have never missed a day with her, we feel that we have missed so much of Norah's life, and it hurts. She hasn't been home since she was a teeny tiny newborn. She hasn't been home since she was struggling to cling to life. She is so different now. She's a toddler (though she doesn't "toddle" yet). She smiles. She laughs. She throws fits. She's still fragile, but nowhere near as fragile as she was the last time she was home with us. She will get to be in her new room of our new house for the first time. She will get to play with her Harper. She will get to roll around on the carpet - something so simple that she has never done.

It will only be for a few hours, and it will be so hard to take her back to the hospital. But it is going to be worth it. It is a dream come true. But there is more that will be bittersweet on this day. This day will also mark the one-year anniversary that our dear friends, the Packs, had to say goodbye to their sweet boy Colum. While my heart will be singing for the temporary joy of a few hours at home with Norah, it will be heavy with sorrow for the pain that my beautiful friends are enduring.

Here's to hoping that nothing gets in our way of this Christmas Day visit. No illnesses, no bumps in the road... nothing. Just a perfect few hours of bliss.

A Far Reach for Little Arms

View during practice,
taken by my brother Anthony
who also rows

My mom is amazing. That statement doesn't even do justice to her level of awesomeness. On Saturday, I received a very special phone call from her. She was out of breath, emotional, and it sounded like she was outside. She was calling to tell me that for the first time in her almost ten years of competitive rowing, her team, Solano Rowing Club, won first place. They, competing as a women's team, even beat the time of the men's team. The other teams didn't even come close to their time, as you can see in the photo below. In all their years, they had never won first place.

Here's the kicker - they dedicated the race to Norah.

While they sat in the boat, waiting for their turn, my mom had a moment of inspiration  She told her team about her granddaughter. She said that Norah lives on a ventilator, and has to fight for every breath. And if she can fight, they can too. My mom dedicated the race to Norah, and was determined to race it for her. And they did exactly that. One of my mom's teammates, her good friend Pat, said that she used Norah as a point of meditation, imagining her face in one of the passing windows, as if she was watching the race and cheering them on.

Yes, SRC was really that fast!
Note how far behind second place was!

During the award ceremony, my mom overheard some people chatting, saying that there had to be an error, and there was no way that team could have that time. She faced these people, politely pardoned her intrusion, and firmly said that they had the race official check twice to be sure. I'm so proud of my mom. She's not the confrontational type, but she wasn't letting anyone negate their feat.

It goes to show that Norah's little arms have a far reach. She inspires people from afar that haven't even met her. And for those of you that have met her, you know how incredible she is. Everyone just wants to be around her. There is something about Norah that makes you feel so good. I'm proud to be her mom... especially because she inspires me, too. So for those of you that ever have wondered how it is that our family bears this burden, it would only take a few minutes with Norah to understand just how exactly we manage.

Mom and my brother Anthony at practice

First place!

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.

Empathy

In late August, our brains were still a bit scrambled from the combined (good) chaos of Norah's birthday party followed by the quick search and purchase of our house. On top of that we were having a ton of clinic appointments and transports for Norah, while also preparing for cleft surgery. All of these these things are my attempt at an excuse for missing an amazing blog post from my brother-in-law's wife, Des.

I read it last night, and sobbed like a baby. Jeff did too. It seriously cut right through us so I had to share. You can read it in it's entirety here. It's worth the read, especially with the super adorable photos of Norah being held by her cousins. Below is an excerpt, referencing Norah's birthday party:

It was a joyous occasion and there were so many people there to celebrate. For some of my kids it was only the second time they've seen Norah. They were very excited to get to see her and hold her. I, on the other hand was having a hard time feeling excited and happy and didn't know why. I figured it was cause I was still feeling a little tired and sore from just having a baby and driving in the car for an hour didn't really help. I needed to feed Dreyden so I went to Norah's little hospital room. I was looking around at Norah's home and thinking about her life. As I held my healthy newborn baby, I felt extreme guilt and sadness that Shauna missed out on very basic small things that I was in the middle of enjoying. Simple little things that we probably don't give much thought to. Being able to take my baby and going anywhere I feel like going, snuggling my baby without ventilators, wires and tubes, letting him be passed around the room without the fear of illness, listening to his sweet newborn sound, nursing him, never having to leave him, being able to have him sleep with me in my bed so I can kiss him all night long. All these thoughts brought me to tears.

Here's the thing. I've had some really touching and fantastic conversations with Des about motherhood. Before Norah was born, we discussed the wonders of breastfeeding, co-sleeping, and special quiet time. To read Des' acknowledgement and description of my hardships have really affected me. She is completely right - it is the simple things that hurt the most. I often think about how I was once that mom. When Harper was born, I was completely oblivious to the existence of the crazy world that we are now a part of. I was the mom snuggling her new baby that never left her side. My biggest heartache was Harper's jaundice then minor outpatient urology surgery when he was 18 months old. Even when we found out about Norah's diagnosis during my 20-week ultrasound, we had no idea what we were in for. Of course, even looking back, we wouldn't have changed a single decision. But experience sure does wonders for perspective, doesn't it?

The other piece of this is that I truly admire Des as a mother. She is incredible. She and Scott (Jeff's brother) have taught their kids manners, compassion, love, respect, and tolerance. They've been foster parents too, helping set children on the right path to turn around their lives in such a profound way. They didn't just care for those children. They guided them, comforted them, and showed them how good life can be. Scott and Des think that they are simply caring for these children, but it is much, much more than that.

Des, thank you so much for your love, support, and empathy. I'm looking forward to spending time with you and Dreyden on Monday!

Norah and Dreyden

Are We There Yet?

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

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

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

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

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

Back From a Rocky Week

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

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

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

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

Norah trying REALLY hard not to smile!

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

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

The Impossible Choice

Sometimes, I feel a bit helpless about our situation. We make the best of it, and enjoy our family time, but I sure hate when I feel like I have to choose between my two kids. Norah's situation is obviously critical, so Jeff and I do everything possible to meet her needs. But sometimes I worry that Harper has bad feelings about the whole ordeal. I feel like he thinks that we are choosing Norah over him.

Every once in awhile, he'll tell me that he just wants to stay home with me. He tells me that he doesn't want to go to the hospital. He doesn't want to go to play with his cousins. He just wants to stay home. Sometimes he says, "Did you know that someday Norah will get to come home?" We're all looking forward to that day... but he is especially looking forward to it. He craves a "normal" life just like the rest of us.

I know I'm not actually making a choice between my two children, but sometimes it feels that way. My sweet buddy tries so hard to go with the flow, but it doesn't come easily with a personality like his. So when he says he wants to go see his "beautiful baby girl Norah", it is tough to refuse.

I'm pretty sure he's come down with Norah's rhinovirus. Though it is rampant everywhere, we like to take precautions in the hospital. We don't want anyone to get sick on our account, especially the sweet kiddos and their families at Primary Children's. I told him that the only way he could come today, was if he wore a mask and kept his hands clean while we walked through the hospital. And with that, I present Harper, doing something I never thought he would do, wear a mask. Trust me, this is a HUGE deal for him. And yes, I made him put it up over his nose after the photo was taken.

Ups and Downs

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

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

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

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

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

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

Surgery

Few things are better than post-bath snuggles

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

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

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

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

Our Fifth Anniversary

Has it really only been five years? Jeff and I have been through so much that it feels like more. In a good way, of course. On this special milestone, I wanted to do something special for Jeff. I made terrarium replicating our wedding scene. The sand, driftwood, and stone are from Pescadero State beach in California, collected when we took Harper there on his first birthday. The wine corks are from our wedding reception, and represent the huge logs of driftwood on which our guests sat at the ceremony. The twine was leftover from our wedding favors, and I painted the little figurines to look like us on that perfect day. The live moss, blue shell bits (for water), and fence were craft store purchases.

How did we spend our anniversary? We (I) couldn't stand waiting, so we swapped gifts the night before. Jeff's gifts took my breath away - he is just so thoughtful. The actual day was great, though we spent a little more time than I would have liked at the tattoo shop. Yes, I said tattoo! We designed this fun tattoo below, completely on our own. If you know us, you know that we are huge video game nerds. So the Peach and Mario are us, and the "high scores" are our anniversary date (with our combined initials), and the birth dates and initials of our amazing two children. We got the exact same tattoo, done by the same artist, who is really fantastic.