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!