Another Surgery

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

We were wrong.

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

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

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

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

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

Trach-free

I had this long, intense post written... when I accidentally deleted it. Yep, me - the person people turn to for computer help... I deleted the post and it auto-saved. Nice, huh? I just can't bring myself to re-write it. Perhaps you should be thankful that my other post was deleted... it was pretty long-winded (as I tend to be). But I wanted to break my blogging silence, at least for this one post. So where have I been? Enjoying life, of course. We've been living in the moment, and enjoying every bit of it.

The rumors are true that Norah was decannulated on June 4th. To say she's doing great would be an understatement. We're all adjusting to this new life. It's amazing what can happen in a year to such a strong-willed girl. She is strong, healthy, and enjoying her new trach-free life. We're all enjoying our new trach-free life. Norah is now in HD. She is more vibrant, active, vocal, mobile and just as sassy as ever.

The trach/vent mom in me will always be in there somewhere. But someday I'll forget the size and style of her trach. I'll forget her old vent settings. I'll forget the weight and juggle of equipment in my arms. I'm sure the first time I forget the oxygen tank (that is rarely, if ever used), Jeff, always the worrier, will be right behind me with it. And as we wean off of our private duty (night) nursing, I'm sure the trach/vent mom will be stirring within me, at the ready for any respiratory emergency.

Her medical journey is not over, but her rocky start is. She can finally breathe on her own. I can't even begin to express how thankful I am to all of you, to all of her caregivers, to technology, and to the love that has lifted her up and surrounded her since the moment she was born. Thank you for sharing in her journey... It isn't over yet.

Hibernating

I had been hoping it wouldn't come to this, but it looks like it has become necessary, if not critical. This flu season is becoming progressively aggressive, so we're going to have to make sure that everyone that comes in close contact with Norah, or even in our house, is up to date on their flu vaccine.

The truth is, I didn't get my first flu shot until I was pregnant with Norah. After her diagnosis, my doctors stressed that she could have respiratory issues (ha!), so we needed to make sure our family was protected. I have received the shot every year since, and so have Harper, Jeff, and Norah.

In our lives we are always weighing risk and benefit. Some people have allergies or sensitivities that result in a choice against the flu vaccine. (You can get a preservative-free version, though there are other allergens too.) Others may not fully understand what can happen if they get ill. I truly hope that everyone does research on both sides of the topic to make a fully educated decision on whether or not vaccination is right for them. A good place to start is the CDC's website. We understand that our family lives in this unique world where we are apt to hear more scary details about what the flu can do to otherwise healthy, youthful people (hospitalization, heart and lung ventilation, even death).

I just know that for my family, we need to increase our "herd immunity". Jeff and I have decided that, for our family, we cannot afford risks. I will not tell anyone that they should or shouldn't get the vaccine. I may tell them to consider it, but I will not tell anyone that they have to. However, our company will be contingent on it. Our family has had to live in separate places for far too long to have to take any unnecessary risk of having to live that way again. For those that do not vaccinate, we still hope to keep in touch via other means, and look forward to coming out of hibernation in April!

Prologue

Someone might crawl soon!

Has this past two years been a prologue of what may be ahead? I'm not sure... but I do know that it is not our entire story. Despite all we've both endured and enjoyed over the past 22 months, we've only just begun. And now we look forward to the next chapter.

Norah is coming home. 

No - she isn't coming home today, but the end of our hospital stay is in plain sight. Norah has now been on the home ventilator since 8am Tuesday. If she can stay on it continuously for one month, our girl will finally discharge to home. There are many tests and trials ahead for the next month, but everyone is very optimistic. I told Jeff that it will take quite some time at home for me to truly believe that no one is going to take our girl away from us.

This is not a guarantee that things will go as hoped. She could get sick. She could simply not do well on the home vent for so long. Her recurring labs could come back terrible. We don't know what will happen. But again, we're all optimistic.

I believe in Norah, and I believe in our family. We're almost there. Coming home will not be easy. I will be her nurse (and we joke that Jeff will be our CNA). We will be doing a different sort of juggling, but it will still be juggling (likely with less sleep involved). But our family will be happy, healthy, and together... and that is what matters. Thank you all for your continued generosity and support. It was my (somewhat) secret hope that Norah would be home before her second birthday, and it looks like that just might happen. I may not have brought a baby home from the hospital, but I'll take that silly, sassy toddler without any complaint. Let the countdown begin.

Sleeping sweetly on Saturday's day trip...
for the first time ever in her own crib at home.

Best Mother's Day EVER

I don't care what anyone says: my Mother's Day tops that of anyone else on the planet.

Last Tuesday, our insurance company told us that we can take Norah anytime, anywhere without permission, so long as it was restricted to a day trip, and not overnight (which is fine since she needs the ICU-only ventilator at night). This. Is. A. Huge. Deal. We're planning to take her every weekend: the zoo, the park, parties, and most importantly - doing nothing at all at home. But without question, Jeff and I agreed that the first thing we wanted to do was visit his family in Logan, a good drive northward. The next family get-together just happened to be on Mother's Day. It was perfect. It was difficult to keep this secret, but we knew that the payoff of a big surprise would be worth it.

Norah cuddling with her Grandma

We got to the hospital at about 10:45am, and didn't have her back until almost 8pm! She did great in the car, sleeping most of both ways. When we got to Jeff's parent's house, we parked on the far end of the driveway, and went through the garage, as to not give away our surprise. We were the first to get there. Jeff's mom opened the interior door to the patio, greeting Harper, then Jeff, then me, then.... NORAH! She squealed in delight, immediately fighting tears. She could hardly believe we had brought her with us. Jeff's dad said that the moment he heard his wife's reaction from the other room, that he immediately knew why.

Enjoying my in-laws' gorgeous backyard

It was so fun to sit in the living room, watching everyone do double takes as they came through the door, realizing that we had a very special guest with us. This was Norah's first time outside of her little 25-mile radius. This was the longest duration she had been away from a hospital since she was an itty bitty fragile baby. Everyone commented on how healthy (and beautiful) she looked. We ate dinner together, played, cuddled, went outside, and Norah met lots of new faces. As usual, it was sort of like having a celebrity in our midst. One of the most exciting parts of this day was Norah finally getting to meet her paternal great grandparents. G&G Gunnell had yet to meet Norah since they can't easily travel. They were thrilled to meet her, and fell instantly in love. It meant so much to Jeff and I that Norah spent time with everyone, especially them and her Great Grandma R (my mother in law's mom). The three of them are so wonderful, and I just can't say enough great things about them. In many ways, I like to think of Great Grandma R as the white version of my own Mima - my filipina lola that passed away a few years ago. And G&G Gunnell are the sweetest, most cheerful couple you'll ever meet. I just love them!

This photo sums up their relationship

As usual, navigating Norah's equipment was no easy feat... but this time we had loads of help. Every time we moved from room to room, we carried Norah (of course), the ventilator, the a/b monitor, the oxygen tank, the suction machine, miscellaneous medical supplies (maintenance and emergency types), and all of the tethered tubes, wires, and power cords. One of these days I want to hold it all and stand on a scale to see what it weighs. It's madness, but it's worth it. This girl does not travel light. More still, we had her diaper bag, and other random bits that were with us but not necessarily taken from room to room.

So much happiness in one photo

As the day came to a close, Harper said that he didn't want to take Norah back to the hospital. He said that he wanted her to stay and come home with us. I think he can sense that our days of living in the hospital are numbered. We're yet another step closer to drawing that "Get out of Jail Free" card from the deck. Norah didn't want to be left there, either. Jeff and I told and signed to her that we were leaving, and she started to cry. Can you even imagine having to leave your little toddler at the hospital every day? Can you imagine your visits being borrowed time? Let me tell you, it's the pits. But there's that light at the end of the tunnel. And we're ready.

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.

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.

Birthday Bash

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

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

On The Road Again...

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

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

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

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

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

Cautiously Optimistic

Here's the deal. We have big news. I'm cautious to share this, because nothing is certain yet, and we still have a long way to go but... well, let me give a little backstory for those of you that may not know all of the details of Norah's saga.

When Norah was first trach'd, it was because her little body caused her little lungs to be restricted from working properly. Oxygen saturation was never a problem, but she wasn't able to blow off her carbon dioxide. Her airway wasn't the problem either; she needed to be on a ventilator so she could be given pressure support to her breathing. Who would have thought breathing was so complicated? Trust me, it is so complicated.

Though I still believe that placing the trach was the right thing to do, at the time no one foresaw that it would lead to such a long hospital stay. No one thought that perhaps she wouldn't be compatible with any ventilator but the fancy-pants ICU-only Drager Evita. The girl has expensive taste.

Things were a little sketchy at first. Norah had a really rocky first 6 months of her life. She was constantly desatting (turning blue). She was needing constant intervention from the care team by bagging her or even that awful day that she needed CPR for nine minutes. I was tired of being the source of the awful code blue alarm in the hospital. But somewhere along the road, Norah turned around. She became stronger. She started playing and developing. She wasn't just surviving anymore... she was thriving. Norah told us what she needed, and we listened. It was with the excellent health care that she received, and love from us as well as all of you, that she began to do so well. Now she has a bright future ahead.

So what's with the long story and the dangled carrot of big news I have? Well, on Wednesday, Norah passed her previous record for her longest stay at South Davis. We had officially been there eight days. It was time to try her on the Trilogy vent (a vent that they don't have at PCMC), which will do a mode that the typical home vent (LTV) won't do. It will do AVAPS (Average Volume Assured Pressure Support), which, long story short, should work for Norah. She did fantastic. She didn't even notice the change. Okay, here is the big news: this is a home ventilator.

We're not going home today, or tomorrow, or next week, but it means that we will probably be home before our original guess of 18-months while we waited for her to grow to be able to take a 50cc breath on the LTV's volume mode. It will take time for her to transition from the Drager to the Trilogy. Plus, she has surgeries coming up in late summer/early fall. They're going to have to teach us a million things before we'll be ready to take her home. We will work up to it with short trips outside, then a few hours out and about, then maybe even a day trip home. It'll take awhile, but we're getting there. The light at the end of the tunnel is still far off, but I have a feeling we've finally passed all of the bends and curves that have prevented us from even seeing that it was indeed there.

Taking a Step

As mentioned in my last post, there were discussions around sending Norah back to South Davis Community Hospital. We had a care conference on Tuesday, where we discussed her current progress, ideas for treatments, goals both long-term and mid-term, as well as potentially sending her back to South Davis.

The great news is that Norah is thriving. She is stronger than she was the last time she was at South Davis. She isn't quite so fragile, and is a happy, active, ray of sunshine. They've been running trials of lighter support on the vent, and she's been doing fantastic. Though her pulmonologist had originally guessed that she would only need the vent for a year, he thinks it could possibly take her until age two (give or take) until she could be free of the trach and vent. However, that doesn't mean it will take that long to get her home. We will continue to encourage growth and strength building, which is what needs to happen before she could come home. I honestly don't know when that will be.

It was with much discussion that we have decided Norah will transfer back to South Davis in two weeks, on May 29th. This is going to be emotionally challenging for us. Well, "emotionally challenging" may be an understatement. The PCMC staff have become our family. Of the nine months of Norah's life, she's probably spent eight there in the PICU. There will be lots of tears, but it does feel like the right thing to do. There will be many milestones to hit before Norah can come home, and going to South Davis seems to be one of them. We're feeling nervous and cautious, so please wish us all luck.

Could this face be any sweeter? She is my strong, beautiful girl.

Enough hair for a little pigtail... can you see it on the side?

Jeff was trying to have some cuddle time, but I distracted Norah with her first knitting lesson.

Heavy Reality

They try to clear out the hospital before holidays so families can be together. I noticed more sad faces than usual at the hospital yesterday. Maybe the tears were a product of all the new admits. Sometimes I get the desire to comfort some of these people, but I always remember that you can never presume anything about anyone or their situation. Sometimes I feel so strong - as if I'm in my own element, playing the role of the parent who is used to life in the ICU. I was feeling that way yesterday... until we had a meeting with a few members of Norah's care team.

We had a preliminary meeting before we had her full care team there to discuss our short term and long term plans for her care and stay at the hospital. We were presented with a heavy reality. Norah won't likely come home for another year, or even longer. Though we all hope for the best, and they do what they can to prevent it, there is still a chance Norah could have an event similar to that which happened last Monday. As difficult as it is to swallow, Norah could still die in the ICU.

I wasn't able to hold back the tears when the doctor said that.

They are going to reach out nationally to find other cases of babies with skeletal dysplasias that needed to be trach'd so early in life. They want to get a better handle on Norah's possible prognosis as well as any possible treatments that they haven't though of. Norah is an extra special case. They haven't had any other patient like her - not only because of her physical challenges, but also because of her sweetness and amazing level of interaction with everyone. Though they may find cases "like" hers, I wouldn't be surprised if she's in a one-of-a-kind situation. Even after genetic testing, they still don't know what sub-type of spondylometaphyseal displasia she has. I vote for naming it after our family if they officially recognize this sub-type as our own.

After the meeting, I was pretty sad. Jeff reminded me that when he was born, his mom was told that Jeff would likely be a "vegetable". They couldn't have been more wrong. The reminder helped me feel a bit better, but I was still feeling low. I said to Jeff "What if...." and couldn't finish the thought. He said the most comforting thing to me. "With Norah, there is no 'what if'. There is only 'right now'." And that is how I'm going to try to live.

Puppy Love

The first time I fell in love with a dog, it was with my best pal Kristen's greyhound Neptune. She was the sweetest, gentlest princess I had ever met. Neptune led me to wanting to adopt a greyhound of my own. When I first delved into home ownership, greyhound adoption was the first thing on my make-a-house-a-home to-do list. I remember the day Kristen went with me to pick up Dottie from Arizona Adopt a Greyhound. It was love at first sight. She was a petite girl for a greyhound, and had an independent (read: snobby) personality and the most beautiful dark brindle coloring. This first photo just kills me with her lovely face.

Over time, Dottie had quite a few health problems: ear infections, digestive woes, and paw/nail problems that have plagued her since about age 5 or 6. I can't even count the many attempts at treating her poor paws. Her paw/nail problem baffled multiple vets. But she was still our sweet snobby girl and we loved her.

I first met Dexter at an adoption event. He was a scared sweet big boy looking for a home. He raced for about two years in Kansas City before coming to Phoenix for retirement. Life with Dexter was a bit of a journey. He was clearly abused during his racing career, and perhaps before it too. He could be a bit agressive with other dogs when put in a bad situation, and was very wary of humans. Sometimes he'd be so spooked that we couldn't get him to come inside the house. Poor guy. Over the years, Dexter warmed considerably. He gave the best hugs, and loved to hog the bed.

Just before Harper was born, we stopped letting the dogs rotate turns sleeping at the foot of the bed with us. We didn't want to take chances of having a 100 lb dog jump onto the baby accidentally. It took them awhile to adjust, but they eventually did. To them, that was the end of an era. From that point forward, the dogs were constantly having to adjust to the shenanigans of their humans. It hasn't been fair to them at all, and now we have the added concern of soon bringing home Norah with all of her respiratory concerns.

The day after my gallbladder surgery, Jeff took on the awful task of dropping the dogs off with the kind woman who runs GPA SLC. You may remember that she helped find the perfect home for Noodle, too. She agreed to take Dexter in to her own home and adopt out Dottie to a friend of hers. Since this happened the day after my surgery, it was just too physically painful to cry. Jeff and my mom helped me fight from sobbing because it was murder on my body. As a result, I still haven't found myself fully able to grieve the situation. I miss them so much, but know it was for the best. The reality is that they're going to homes where they'll probably be much happier than ours. They'll be the center of their little universes again, and that's exactly what they deserve - especially at their old ages of 8 and 9. They were our kids for so long, and I am so thankful for their companionship over the years.


Dottie & Dexter, your mama and daddy love you so much. I hope you can forgive us, and I hope you enjoyed our years together as much as your daddy and I have. We miss you so so much, and not a day goes by that I don't think of you with love in my heart.

Some of our favorite memories with Dottie and Dexter:

• We lovingly referred to them as the most "pathetic" dogs on the planet. Just look at the sweet pathetic looks on their faces. <3
• Dexter loved to catch snowballs in his mouth every winter; Dottie loved to chew on ice in the summer
• A few months after adopting Dexter, I attempted to take up jogging. I took both of them with me the first time, but before even a single mile had passed, I was having to literally pull Dexter along. He has zero endurance!
• In her younger years, I'd take Dottie to charity 5k walks. She liked being social with the other dogs, but sometimes I sensed a little competitiveness in her pace.
• Though I can't recall the reason, I remember once crying on my bed in Phoenix. Dottie came right up to me and licked my face to cheer me up. It worked.
• Once I had to carry all 65 lbs of Dottie across a giant parking lot in Phoenix because it was too hot for the pads of her paws.
• Dottie was a sun worshiper. She loved to spread out in the grass and soak up the hot sunshine.
• One time Kristen brought over one of her foster dogs for a playdate. The moment we went outside, her foster dog just trotted into the swimming pool, thinking it was only a couple of inches deep. Down he went! FYI: Greyhounds don't float well since they have so little body fat!
• The first time Dexter met Jeff, he clearly didn't want him to leave. Jeff was sitting on the couch when Dexter came up to rest his head in his lap and heaved a big sigh.
• In Arizona, there was an especially large bee flying around. Dexter thought he would do his duty and chase it away. He trotted over to the bee, snapped his jaws in a fury, missed, and came running back into the house as if he was being chased by a pack of hungry cats.
• Dexter loved to lean against us. He'd just lean in, begging your arm to be wrapped around him. We couldn't ever deny his hugs.
• Dexter was especially gentle with Harper, and I often got the sense that it was in a protective sort of way. When Harper would get upset at a random barking dog during a walk, I'd always say "Don't worry buddy, Dexter will protect us!"
• Dottie, Dexter, and Noodle bore their own track into the backyard in Seattle! Here in Utah, Dexter still loved to run, and for some reason it made Harper laugh so hard! Dottie, on the other hand, would often go back inside. She became antisocial in her old age!
• Backyard picnics with the dogs begging for food cuddling with us on the blanket 
• As mentioned in Noodle's post: The fact that they were there for our wedding in CA - I'm sure everyone who was there remembers Dottie and Noodle's Great Escape!
• And who can forget the "bucking incident" as hilariously documented by Jeff
• Though a pain at the time, I'll always remember the many many road trips with them including a Thanksgiving with Kristen in NM, several trips to CA, and of course our multiple out-of-state moves.
• Dexter's ears could rival the softness of any puppy ears!
• Dottie's nicknames: Moomooz (she had what I called cow spots on her chest), Moomoozers, Dotsalot, Skinny Minnie... but when she was in trouble, we called her by her full racing name: Dotsero!
• Dexter's nicknames: Dexterious, Dexterious the Mysterious, Dexter the Perplexer, Cuddle Bear
• Their collective nicknames: Mangies, Puppies, Mange-mo-my-moes (don't ask), Smellies (this one was well deserved... Dexter could especially clear a room)
• The love they always had to share, especially when you most needed it

Sisters Dottie and Noodle reunited.

Dottie: "Oh no, not you again!"

Dexter snoozing a few days before the wedding

Driving to our honeymoon

The only thing Dexter loved more than eating... sleeping

Miss Priss in Seattle making it known that she hated the snow, though it was only a light dusting.

My Skinny Minnie. She was often on a hunger strike, but would eventually give in and eat.

Happy birthday Norah!

Norah Ayala Caroline came into this world just about a week ago. It's been a whirlwind of activity and I'm really wishing things would show some sign that they were normalizing soon.

Due to respiratory distress, she was placed in the NICU Wednesday morning right after being born. No parent should ever have to see their child turn so blue (which I've now had to go through two additional times just this last day or so). I didn't get to see her until later that day, and held her for the first time the following day.

I was discharged at about the same time she was moved from the NICU to an intermediate nursery. The hospital has been great, letting me stay in a "twilight room", which is a very basic room for families to stay in when mamas are discharged before babies. I do however have the added stress of not knowing from day to day if I have the room for another night. They base it off of need, which I think is great but difficult nonetheless.

So here I remain to help our precious baby girl get well. It hasn't been easy, and the postpartum hormones aren't helping my emotional stability. I've been feeling weepy, and miss Jeff and Harper with painful intensity.

I have more to say, but am far too sleepy to continue writing. Please send Norah all of your good get-well vibes, as she sure could use them. I'll try to post again soon with an update  in her progress.

Finding Peace

When I first met Jeff, I knew that I had finally found peace in my life. As a child I was sensitive and melodramatic. As a young adult I was high-strung. I liked to think of myself as mellow, but when I truly look back, I know that "mellow" was pretty far off. The truth was, I felt anxious all the time, and about everything. That changed when I met Jeff. I immediately knew that he would be in my life forever. As we fell in love, I found wave of peace washing over all of those anxious bits within me. He brought out a calm side of me that I never knew was there.

When I was pregnant with Harper, Jeff and I were worried about birth defects. Okay, okay - ALL parents worry about birth defects. But every time someone would brush off my concerns as typical or trivial, I wanted to smack them (figuratively, not literally of course). The fact of the matter is that our concerns are not typical. Jeff was born with an extremely rare skeletal dysplasia, so each of our pregnancies presents a 50% chance that the baby will have it too. Jeff has had unique challenges in life that few people are likely to comprehend - especially considering his condition has one in a million occurrence. So mister or misses health care professional, please excuse me if I don't appreciate having my concerns brushed off as if they are unfounded.

Though we worried about Harper (who was not affected), my worries felt different early on during this second pregnancy. I can't quite explain it, but something within me knew that this baby was affected. Four weeks ago, we were told during our first ultrasound that the baby did indeed have growth anomalies that coincide with spondylometaphyseal dysplasia (can't pronounce it? Either Jeff's mom Carol or I can pronounce it for you... she especially knows it well). Though there is no exact prenatal test for Jeff's type of dysplasia, it's quite apparent that the baby has it. Of course our initial reaction was mostly sadness. And if you catch me during a hormonal moment, you might see tears in my eyes. But honestly, the longer it sits in my heart, the more I become okay with it.

For those of you readers lucky enough to know my husband Jeff, you know how incredible he is. This is not just coming from his wife and best friend. Ask anyone - his grandparents, parents, siblings, nieces, nephews, and all of the people that have really known him. He is everyone's favorite, and for good reason. He's funny, inspirational, modest, and just so dang selfless. If anyone ever had a good reason to complain, it would be Jeff... but he doesn't complain at all. One would never know what he's endured. He is my heart, and I love him so much. I can't ever imagine spending my life with anyone else, and could NEVER have asked for a better father to my children.

So it is with Jeff that I am finding peace in this situation. It seems that so few people have marriages as true and strong as ours, and we'll need every bit of that strength to get through what lies ahead. I'm also finding peace as I imagine holding this sweet little baby in my arms, feeling my heart stretch as it makes more room for the love already growing for him/her. The road ahead will not be easy. But I couldn't be any luckier than to have an amazing husband and family to lean on throughout everything. So from me, Jeff, Harper, and the baby, a big thank you to Mom, Dad, Tyra, Anthony, Greg, Mario, Carol, Mark, Shelly, Scott, Tracy, Emily, Ryan, Kelli, Jared, and all the rest of our family.

And here is a profile image our little wiggly peanut at 24-weeks, saying hello. I really love the new team of people providing us with amazing care, including my new doctor who not only has a background in genetics, but just happens to have special interest in skeletal dysplasias. Just check out her U of U faculty profile - impressive, right? We'll probably have a new picture just like this at least once month to share, up until the baby is here in about 16 more weeks!

Whoa, Baby!

Yes, the rumors are true. There's a little peanut in this mama's belly. On Wednesday I'll be just five weeks along, putting our due date around July 27th. If anyone knows of a good VBAC (Vaginal Birth After Caesarian) doctor in Utah (preferably Salt Lake or Davis counties), let me know because I'm on the hunt.

...and yes, we're going to let the gender be a surprise again! Hooray!