Germ Party

Norah has been feeling crummy for the last few days. She's been a little grumpy, a little restless, and has had some viral-like symptoms. They did a bacterial check of her sputum a few days ago, which I just found out today came back positive for MRSA: Methicillin-Resistant Staphylococcus Aureus. Yes, there's a "staph" in that name. The "MR"means that it is resistant to standard antibiotics that treat typical staph infections.

Before anyone freaks out, keep in mind that it's important to read the specifics of the results. If there are just a teeny tiny few little germs in the pitre dish, it would likely be a contaminant. MRSA is actually quite widespread, especially in long-term care facilities. It can be found on clothes, skin, etc. Plus, it lives for a long time. So if an itty bitty fleck of skin made its way into Norah's sputum sample, that could be the cause, and it would mean that the sample was contaminated.

Having a trach means that colonizations of bacteria are sort of par for the course. If you were to swab someone's mouth, you would probably find something similar on a smaller scale. I know, sort of gross, isn't it? Well, since Norah lives in the hospital, it is highly probable that she could get a group of those germs hanging out in a small crowd. This is normal, and doesn't require treatment... just watchfulness. That would be a colonization.

Now, if this little group gets out of control, and starts attacking Norah, this could be an infection. We're talking like Beatlemania proportions here. That is the horrific "staph infection" that most people have heard of. You know - gross wounds or sores that are difficult to treat. Yuck. There is a chance that her trach could become infected in this way, but the stoma (hole) looks too good at the moment to be infected. Well, that's at least my mother's intuition on the subject.

So which is it: contaminant, colonization, or infection? I asked the nurse how much MRSA was found in the sample, and she wasn't sure. I'll know more after my afternoon visit with Norah, but honestly I'm thinking its simply a contaminant or typical colonization. Nothing to worry about. Hopefully.

Happy Birthday, Harper!

With so much going on with Norah, I don't post about Harper nearly often enough. He doesn't know it, but he turned four on Monday. He thinks his birthday is on Saturday, when we're having his party. All day Monday, I whispered "Happy Birthday" to him. He would ask, "What?" ...to which I would reply "I love you", with a sly smile.

Harper never ceases to amaze me. During this last year, we have pushed him so far beyond his comfort zone. He is painfully shy, hating new people and places. That just doesn't work with our lifestyle. We're always taking him to the hospital, appointments, meetings, etc. He doesn't want to go. He doesn't want anyone to talk to him. He wants to be left alone. We stretch him to the limit (and sometimes beyond it). He shuts out the world with video games learns to cope as best he can.

But that's not all. He's smart. He's HILARIOUS. He says the craziest things, as most four year olds do. He laughs. He lights up the world with his brilliant smile. He has really impressive manners when it comes to "please", "thank you", "you're welcome", etc. He is always telling me that I'm his best friend and I'm beautiful (Jeff taught him well), and always telling Norah that she's his "beautiful sweet girl" or his "beautiful baby sister". He's such a charmer. He cuddles me when I'm sad, and to Jeff's dismay, Harper always goes to mommy when he needs a good cuddle.

He's a doting big brother, too. He is so gentle with Norah. He shares his toys. He pats her gently and tells her how much he loves her. He asks how she is after I get off the phone with the nurse. He asks when she'll come home and says that he misses her. Sometimes he even says that he wants to go to the hospital to be with her. I'm enjoying the way they get along for now... I'm sure it won't always be that way, but a girl can hope!

I can't forget to mention his video game skills: that boy is a champ. He will someday play in a Super Mario or Kirby tournament, and will win us millions.

We love this little guy, and are so thankful for him. He brings so much joy to our lives. He has helped us through some really difficult times, reminding us that laughter and smiles are ever so important when life gets really difficult. One of my biggest hopes is that we can show him that our love for him is truly unconditional.

Happy birthday, my sweet, beautiful boy.

Home Sweet Home

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

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

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

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

Life As We Know It

Sometimes I think about what sort of blogger I'd like to be. Certainly, I hadn't planned on this blog evolving into a place that people would go for the occasional cry. It seems that it has turned out that way. I drool over some of my favorite knitting blogs, crafty blogs, home DIY blogs, and creative writing blogs. That is not my life right now, but that's okay. Maybe moving into this new house will spur my creativity. Or maybe I'll be too exhausted to blog about it anyway. Or maybe not. We'll see.

My mom was here for almost three weeks, and it sped by far too quickly. Below are some photos from the last month. There are quite a few, so I've squeezed them in. Be sure to click for full view!

Sweaty sleeper

 

Cuddles!

The playful otters at the aquarium were so much fun!

Harper was mesmerized by the lit jellyfish.

Love this girl.

Auntie Kelli came! I love this picture because they're making the same face. Miss you, Kel... say hi to the pacific northwest for us!

Peekaboo with Auntie Emily

Life as we know it.

Go Norah, Go! She had an endocrinology appointment in SLC on August 10th. It was her first transport for an appointment since she's been trach'd. She did fantastic and was on the home ventilator the entire time! It was also her first time being rained on. It sure exhausted her (afterwards she slept from 4pm-9am), but it was such a wonderful day.

Harper doesn't have a DVD to watch when we drive the Mazda instead of the Tahoe. This is what typically happens.

 

Harper and dad enjoying the recliner at the hospital. Apparently, it's hilarious.

Roots

My homesickness for Seattle is no secret. I miss the weather. I miss the water. I miss the culture, the people, and the whole PNW vibe. I miss vegetarian-friendly restaurants and grocery stores. I miss the breeze and the intense greenery of the Emerald City. I miss it all (well, except for the traffic and high cost of living). But there are things that Utah has that Seattle doesn't. Most of Jeff's family is here, and they've proven invaluable in these recent years. And Utah also has... hmm... well... okay so the family is what keeps us here. When we moved here, we had hoped it would be for about five years, then we'd move back. That just doesn't appear to be in the cards right now. So we've decided to plant some roots.

We are eager for Norah to be able to come home, but we can't bear to bring her home to this house we're in now. Our landlords are fantastic, and the rent is a great price, but we need a house better suited to Norah's needs. We began the rental search, only to find that our needs and our rental budget didn't match. After exploring several options, we decided to buy a house. Yes, those are some pretty thick roots to be planting.

With the financial burdens that we've been facing lately, we knew a home purchase wouldn't be an easy feat. So we brought out the big guns and bit the bullet (not sure exactly how that saying works, but I've said it). Jeff and I withdrew hefty chunks from our retirement funds in order to be able to pay off one of our auto loans to in turn afford a mortgage, put money down on the house, afford the move, and hopefully get some furniture. Sure, we may be mad at ourselves in about thirty years... but maybe we'll strike it rich by then. Besides, our retirement funds were only losing money. Perhaps this will be a better investment. We may need you to remind us of these things when retirement time rolls around.

The house is fantastic, and suits our needs perfectly. The scary thing is that now we are completely tapped out. Financially, we have little to fall back on in an emergency, but we always think of something... right?

So it's a quick close, scheduled for August 15th. Then we hope to move (from Layton to Farmington) the following weekend, on the 18th. Fortunately, our family (big strong Gunnells) will be helping. Remember what I said about Utah having things that Seattle doesn't? ;) We still hope to move back to Seattle someday, it just appears that it will be much farther out that we had originally planned.

Be The Match

We lived at Primary Children's for so long. Once, when Harper and I were leaving the hospital after a visit, an employee made small talk with me in the elevator. I mentioned that Harper's sister "lived in the hospital". She said something like, "Oh, I'm sure it feels like that sometimes". I briefly explained before she got off at her floor, that Norah did indeed live in the hospital.

I would often see other kids and families that had an aura about them that said "We're regulars here". Some of these kiddos were obvious oncology patients. Cancer happens to good people, as evidenced by the way sweet, tenacious kids have to battle with it every day. But here's the thing - sometimes, with certain types of cancers, there is something that we can do to help. Short of waving a magic wand, there isn't much we can do for Norah like there is with some of these oncology kids (and adults, for that matter).

A few weeks ago, I joined the Be The Match registry. I have yet to find out if I'm a match for anyone, but I sure hope that I will be, especially considering my mixed ethnic background. I may be the only person in existence that could save that certain someone's life - with something simple as a stem cell donation (similar to giving blood or plasma), or marrow donation (which replenishes itself in 4-6 weeks).

So for those of you that are eligible, I ask that you strongly consider joining the Be The Match Registry.  You might have the power to save someone's life.

Girls Just Wanna Have Fun

Can you believe how sweet Jeff is? I was so touched by his post below. He is the most amazing husband, father, and best friend a gal could ever ask for. Times may be tough, but never was there a marriage as strong and true as ours to get through it together.

Did you all know that my mom is in town? I am awfully sad that we're wrapping up her almost 3-week visit. On our first or second day together, we went out for lunch, and check out the fortune cookies we got! Her fortune is on top, mine is on bottom. So crazy!

We have such fun together, not to mention that she's been a tremendous help around the house. She's given me mani-pedis, I've played with her hair, and she's given me comfort when I've felt down. We've indulged, laughed, and hugged. She's played with Harper and cuddled with Norah. And one of the most fun things we did? On my birthday we got tattoos! I love you, mama.

My mom is the lead stroke for a competitive (whale boat) rowing team in California's Bay Area, where she's lived most of her life. The ocean is meaningful for her, as is the water design that I drew for her (first!) tattoo.

What is this nerdery? This is Chromosome 12, wrapped around my wrist. The location of the gene that causes Jeff and Norah's genetic change is highlighted in pink, and ID'd below the chromosome... along with a star for each of them. It amazes me that this little tiny thing has had such a big effect on our lives.  I might add to it at some point, getting further down to what the actual genetic change is, which is a tiny itty bitty amino acid. It represents a really challenging year, as well as an amazing future. They carry this genetic change with them always, and now I do too.

My Shauna-Our Family

'We were but stones, your light made us stars.'

Lest it be unsaid, and I’m sure that Shauna would prefer it was left unsaid, Happy Birthday to our most beloved Mother Star. Amidst all the action and deserved attention that Miss wonderful wonderful Norah received around her big numero uno, Shauna’s birth date came and went modestly without the same fervor. I’m here to correct that.

Shauna is my beautiful wife, the mother to our kids and the most wonderful person I know. There is no one I know who is stronger, more kind hearted and caring and also the best Super Mario Brothers player I know who...wait, what’s that my son? Oh yeah, scratch that last one Harper, you’re right, you’re the best....around...no-ones gonna ever keep you down!

Ahem. 

Shauna and I met through work. It’s the last place either of us were looking to find someone to fall in love with. Unless you count that one time I mistook a private meeting with the HR representative to be about my behavior and not my charming ways and dashing good looks. It only took one conference call with Shauna after my extended absence and I was hooked. Man, I was kind of annoyed at first. Who is this person that took over my job while I was out, and how does she know so much more than I did when she had only been doing for 6 months what I had been doing for over a year?!? And why did I want to hear her voice again, even if it was to talk about work related blah blah blah. It didn’t take long from there for us to veer the conversation from work related topics to music, far side comics, and other jibba jabba. These conversations went on and on, even after work should have been long over with and we both would have been racing for the door normally. And I hate talking on the phone.

And then I started looking for excuses to talk to her after work, and we started text messaging. No, not the type of text messages that KSL admonishes senior citizens for sending to each other. We just felt that that talking on the phone for 6 hours at work wasn’t enough. Our cell phone bills were increasing.

*NOTE: People reading this that work where I work, these numbers I throw out that sounds like we weren’t working and were just talking are exaggerated numbers and man I am a hard worker...yeah, that’s the ticket.

'There’s a light, when my baby's in my arms.'

One thing led to another, and here we are approaching our 5 year anniversary. Time starts to fly when everything’s in it’s right place. For someone who never thought he’d get married, have kids, live the dream, etc., this is all quite amazing and mind blowing. 

“Letting the days go by, letting the days go by, letting the days go by, once in a lifetime”

Some highlights (historians from the future aka internet nerds, will mock me for missing the million wonderful things I fail to mention):

-Hearing her voice for the first time

-Falling in love

-Seeing her for the first time

-Falling in love

-Meeting each other in person the first time in Vegas

-Falling in love

-Christmas in Arizona

-Falling in love

-Seeing the Beatles Cirque du Soleil show in Vegas 

-Falling in love

-Getting married on the beach in Northern California with our closest family.

-Falling in lo-...ok, you get the idea

-Seeing the positive sign on the pregnancy thing showing we were pregnant with Harper.

-Getting to a place where she could quit and be a full time mommy

-Seeing the positive sign that we were pregnant with Norah

-Norah’s beautiful crazy birth

-Every day afterwards where together as a family we’ve survived the hardest, most wonderful moments of our life together.

'All you need is love.'

Shauna is everything wonderful I refuse to see in myself that she helps me resistingly see, and that which we both see in our kids. She is Harpers mischief. Norah’s smiles. Norah’s fits :). Harpers sweet hugs and cuddles reserved for ‘only momma.’ Norah’s assuming the napping position that is reserved just for momma. The love reserved for Norah from so many strangers that have become close friends and protectors, not just of her, but of momma as well. She is the light that has guided us both through dark times where worried tears wouldn’t dry, not for lack of tissues. The bridge for a family when our sweet daughter couldn’t come home after being born and momma couldn’t bear to leave her side. The strength that seemed completely sapped, only to be restored through sheer willpower.

There is no one like my Shauna. I’ve wasted enough words in a vain attempt to describe how amazing she is and how much she means to me and our family, but it’s a failed attempt. As words can’t do it justice. A picture worth it’s million words would fail in it’s earnest effort. All I can say is that I love her, and that she is everything to me.

Happy Birthday Nauna.

Your Norah. Your Harper. Your Geoffrey.


-J

The Happiest of Birthdays

Norah's birthday was simply perfect. Of course, she wasn't at home. She wasn't free of life-supporting medical equipment. But she was alive, happy, smiling, breathing, and so very loved. I can't believe it has been a year (sometimes it feels like days, other times it feels like a decade). Every once in awhile I think about the typical things that our family has missed out on. But those thoughts are fleeting, as Norah's smile reminds me that it is all worth it. Our life is our own, and while I'm eager to someday take Norah home, I'm also grateful for what we do have.

There had to be something like 75 people that came to wish Norah a happy birthday. It was totally, completely crazy, especially when you consider that there were only about 30 people at our wedding. We're low-key sort of people. But that's just not how Norah rolls. My only regret for the day was that I wasn't better able to spend time with each one of the partygoers. It meant so much that our loved ones celebrated with us, both near and from afar. It meant even more that our family was able to see the love that so many carry for Norah. As one of her PICU nurses said, Norah is love.

We had a slideshow of this last year's photos of Norah. Even those that know her best were a little surprised by how she looked when she was first born (we included one of the scary NICU photos). The contrast between the struggling newborn babe and the smiling 1-year old is striking.

Oh - and we finally set-up a donation button on the righthand side of the blog. Several of you have asked for it, though we have been hesitant. We are admittedly prideful about asking for help, but we've given in... After all, it is for Norah. So thank you to everyone that has, and will donate. Your contribution will help with medical costs, travel expenses, and time away from work to be with our girl when she needs us most.

It's been a year for the record books, and I thank all of you for supporting us through it.

xoxoxo

Norah meets her great grandma, Jeff's mom's mom.

Norah meets her newest cousin, 5-day old Dreyden. They're close to the same size!

Norah and Dreyden's feet. Norah's are barely bigger. I love her feet. 

Harper dealt with the chaos by losing himself in his Nintendo DS and daddy's iPhone. This poor kid puts up with so much despite his social discomforts.

Norah kept her eyes locked on her speech therapist from PCMC. She wanted Leann to help reassure her during the whole eating/tasting experience. She wasn't used to the audience while eating. She has come so far with her oral aversion, thanks to her therapists at both PCMC and SDCH.

Norah was wired after the party. In this photo she's showing us that she knows how to take the oximeter (it measures the oxygen percentage in her blood) off of her foot and put it in her mouth.