Preschool Plans

Sometimes I can be pretty cavalier about things. The truth is that I'm not always so confident. Of course I knew that Norah would some day get off of the vent and decannulate. There was never a doubt in my mind. I don't really have a whole lot of doubts when it comes to Norah and what she can and will do. I guess my doubt is sometimes in my own ability to facilitate some of those triumphs. I also have doubts in my ability to cope with everything with a smile. Sometimes I'm not sure if my smile is genuine. I absolutely love my life. It is beautiful and wonderful, and I wouldn't trade it for any other life. I have found fulfillment in ways I never could have imagined. But sometimes when I look ahead, it all seems so daunting. Yes, we've gotten this far - and what a challenging journey it has been. Again, I don't ever doubt that we'll meet our goals. I suppose, like most people, I just get a little tired.

Though she is a very smart girl (sometimes too smart for her own good), Norah is pretty behind developmentally. She turns three in a few weeks but she has yet to walk, stand, or even get to a sitting position on her own (though she's close). She is improving, but her expressive communication is lacking too. We recently made the decision to enroll Norah into preschool at the Jean Massieu School of the Deaf in Salt Lake City. Norah is hard of hearing. Though we have a Deaf Mentor (one of the most awesome people) who comes weekly to teach us American Sign Language, Norah will need even more exposure to ASL if we hope for her to be fluent. As for us, we're working on our fluency too. I truly believe that at JMS, Norah will be a "normal kid". I picture her at a typical school. She tires quickly, so would be lying down a lot. She would have minimal communication with the other kids. They would treat her like a baby, running figurative (and possibly literal) circles around her. She is not a baby, and I remind people of that often. At JMS, she'll be just any other kid there. Those kids are so accustomed to "different" that different = normal. She'll be ready to join Harper at our local elementary school someday, but that isn't just yet. Next month we have another appointment at Shriners to see how her scoliosis and c-spine (neck) stability are coming along. Cross your fingers for us, because her safety at school will be directly related to her neck stability.

Norah's formal list of goals on file is a long one. Will it be hard? Yes. Will we get there? Yes. Heck, I'm just thankful that we are facing these educational decisions and goals. It wasn't too long ago that we were facing different sorts of decisions - those that were necessary for her very survival. It's a welcome change of pace to be thinking about education and development instead of breathing and surviving.

It's Happening

'Tis the season for goobers and viruses, which means it's also hermit season.  We don't mind though, because the kids are both doing amazing. Harper is in love with school, and has already learned so much. Norah is taking huge leaps, too. 

For awhile now, she would get around the house by scooting on her bum. This was tricky while tethered to her ventilator. She had some successful trials off of the vent with a little attachment that moistens and warms the air and bleeds in a little extra oxygen. So we decided to take a big leap. On Sunday, we let her wear this attachment (referred to as an artificial nose) all day. She did amazing. She also did amazing all day Monday. And she'll do it again today. I put her back on the vent for "naps" and overnight, since she definitely still needs it while "sleeping". So this is a huge step. HUGE. 

We have also dropped her "dinner" tube feeding, as she has been loving meals by mouth at dinner. We've even been able to graduate from her eating on the floor (a familiar place), to the high chair. It's been a lot of work to get her to eat by mouth, but it's happening. It's all happening. 

Easy As Breathing

You have likely heard of the phrase "as easy as breathing", or "as natural as breathing". For some people, breathing doesn't come so easy. When Norah was a newborn, she was constantly telling us that she needed help breathing. Even today, it is loud and clear when something is wrong. She sometimes grabs our hands to put them on her suction ballard when she needs suctioning.

Norah breathing without the
ventilator!

But today, Norah accomplished something that had multiple people (especially me) crying years of joy. For twelve minutes, Norah was breathing without the ventilator. 

We connected what is called a trach mask to her, instead of the ventilator. The trach mask simply expells moist oxygen into the airspace just outside of her trach. So with each independent breath, she was getting an extra puff of oxygen. Think of an oxygen mask that covers the mouth and nose, but designed for the trach instead.

Norah has tracheomalacia, also referred to as an overly floppy airway. The trach tube stents her airway open while the vent opens up her airway and lungs. Because of this, they considered that she may fail the trach mask trial. I knew she wouldn't. I knew she could do it. She is strong, brave, and amazing. Most of the people in that room had seen Norah at her worst as a baby. We're all amazed at how far she's come. But what's more, is that we are so excited about the future. Norah will someday come off the ventilator. Then she will someday be able to be trach-free. She may have hardships ahead with her multiple medical needs, but there is hope. We have never given up hope on Norah. Breathing may not be easy, but Norah perseveres. We all do. 

PS: She will be home with us in less than one week!

Hope

For some time, it had been my secret wish that Norah would be discharged to home by her second birthday. It doesn't look like that is going to happen. Try as we might to not get our hopes up, it's nearly impossible not to. There was a light at the end of the tunnel, but we were only seeing a lamp, not the exit.

Norah is a slow grower. We know that she grows at about half the rate of other kids her age. She is doing amazingly well on the home vent (now on it 16 hours per day), but we are still waiting for her to get big enough to meet the FDA minimum weight to take her home. However, we have a medical equipment company likely willing to let her go home when she's at the flexible end of that weight goal. So we may be able to take her home at 8kg (17.6lbs) instead of 10kg (22lbs). This is a huge deal. It means that while we won't be home by her second birthday, we will likely be home sometime this year. It's the homestretch. There is that light at the end of the tunnel.

I don't want to get my hopes up, but it is unavoidable. I don't like telling people this because things tend to not go as planned. I'm only blogging about it because I'm so often asked about a potential discharge date, and I have a hard time not being honest. So for now, we will continue on our path. We will continue to play and laugh together while at the hospital. We'll continue to long for her when we are an incomplete family at home. We will continue to make the best of things, and continue to hope... Because I suppose that getting our hopes up is all part of the roller coaster that we're on.

Growing Up

I've had several friends mention my lack of blogging lately. I know. I'm not going to say it's because I've been busy. I'm not going to say it's because I don't have anything to say. The truth is, it is hard to write when I grow weary of my own thoughts and emotions. I don't want to complain. I don't want to live in sadness, nor do I want to constantly feel like I have to force myself to stay positive. Well, I suppose I do the latter is just part of how I handle our situation. And in truth, it isn't always forceful. There are so many beautiful things and people in our life. It is just hard. And I feel like such a whiny baby when I complain about how crappy things are for us. Yes they are hard. Yes others have it more difficult throughout the world. Much, much, more difficult. It is both challenging and easy to maintain perspective. We see so much sadness in the lives of others, and while we sometimes feel like we have a bum deal too, we are energized and comforted by our perfect family and all the love around us. So I often feel conflicted about my feelings. How's that for a mouthful?

We have been off and on sick for the past month. Fortunately, Norah hasn't had to make a trip back to the PICU. We, along with the staff at South Davis are pretty aggressive at doing what we need to keep her from going downhill. That has meant steroids, albuterol when she's wheezing, extra suctioning, extra vitals, and extra measures towards preventing the spread of illness. Jeff has had to make some solo visits, and Norah is (sort of) getting used to seeing me with a mask. She hates the mask. I think she is a bit afraid of it, being that masks and gowns at SDCH typically mean that a trach change is coming. She tries to pull it off my face, and sometimes she cries, but I do what I can to remind her that I'm not going to do anything mean, and that I am just going to play and cuddle. The other good news is that she is still doing 11-hour sessions every day on the home ventilator. She needs to tolerate it 24/7, then also grow big enough so the FDA will "let" us take her home for good. She is up to 7.3 kg (16 lbs), and she needs to be 10 kg (22 lbs)... which is proving to be slow-going. The unfortunate thing is that the respiratory director still considers her to be the most fragile (respiratory-wise) in the entire hospital... and that is with a handful of newer babies that use the ICU ventilator, too. Hopefully he only says that because he is so attached to Norah, and has seen how scary things have been with her. After all, he was one of the key people that helped bring her back to us on quite possibly the worst day of our lives.

Norah is so funny lately. She loves to hang upside down off of her Boppy pillow or my lap. She laughs, she plays, and she is so very smart. She rolls everywhere in her crib, as well as sits up in it. I'm sure it's just a matter of time before we have to start putting the rails all the way up to the top. I hate that - it's sort of like a cage. She is still the cuddliest girl in town, she still loves to play with Harper's cars, and give him a smack when he tries to hug or kiss her. She always has mischief all over her face. She is social, but she demands that all new people earn her respect and attention. She is 20-months going on 20-years. I love her.

We are preparing Harper for kindergarten. I made a chart for him to put up stickers when he completes a kindergarten-type activity. So far it has been working out great. Just yesterday, we got crafty by each drawing pictures of our family of five (I am not pregnant - Norah's ventilator is our fifth family member). Next - and this is the big one - will be social activities. I've been on the hunt for local community activities that we can go to... hopefully I can find some that will work with our crazy schedule. We recently did the "Kindergarten Round-Up" at his school. He was super shy at first, but by the end of it, he was ready to run around with the other kids.

Both of our kids are really growing up so fast. I just can't wait to get them both under the same roof for more than a few hours. 

SDCH Friends

I'm so proud of my son. Whenever we (or our roommates) have kids visit who don't often come to SDCH, you can see the difference in their behavior versus Harper's. No, I'm not talking about outward behavior like patience or manners, or the ability to sit still. I'm talking about something a little less noticeable.

You see, there is this sweet resident at SDCH who is pretty much the celebrity - just as Norah is in PCMC's PICU. We'll just call her "S". Like anyone else that spends a considerable amount of time there, we adore S. She is sweet, smiley, and silly. She's an amazing 7-year old that has been through so much... And I think she may have a little crush on Harper. He always wants to say hello to her, and she to him. She gets super excited to see him, and has on a few occasions, spotted him from the other end of the hall, and wheeled immediately over to greet him.

Here's my favorite part: when Harper looks at her, he doesn't see her wheelchair. He doesn't see the massive amount of equipment strapped to her chair that for sure weighs more than she does. He doesn't see any of her mental or physical challenges. He doesn't see her quirks and "isms" that are different from other kids. He only sees her. When she comes to our doorway to talk to us, I've seen the way other kids often look at her. They look her up and down, taking in every bit of her disability. And for those of you that may think I'm just referring to your children, I'm not. We've been there for quite awhile and have had a lot of young visitors. I'm referring to just about all of them (I suppose the adults do it too). I know with kids, their curiosity almost comes from an innocent and interested place. They haven't seen S before. They don't understand. This is not a criticism.

Rather, it is a compliment to my son. He has been so very exposed to these special needs kids, that he only sees people, not people with disabilities. A month or so ago, one of the residents that has been there pretty much his whole life wheeled past us in the hallway. He said "Hi, little boy" to Harper. Harper hid behind me. "He's scared of me," the resident said with an unoffended and understanding tone. "No, no," I assured him. "He's just the shyest kid you'll ever meet." And it's true. He wasn't scared of the way this resident looked. He was simply being shy as he always is.

I'm so proud of Harper and who he is becoming. He is a polite, sweet, caring boy, that sees people for who they are, not for what they can or can't do.

Lately

My heart has been a bit heavy lately, which, I suppose is why I haven't been writing much. Sometimes I grow tired of my whining. I really don't want to throw a pity-party for myself. I really am trying to make the best of things. But sometimes it is just so difficult. Sometimes I just can't seem to pull myself up and out of this funk. Jeff, Harper, and Norah help, of course. They help me see and feel that things really will be okay. They remind me to not only look to the future for when we will all be together under one roof - but they remind me that living for today is important, too.

We are getting ready for Harper to start kindergarten in the fall. He didn't go to pre-school. He didn't really go to day care except for those few months when I returned to work from maternity leave then promptly quit my job. We've been getting him ready with "homework", as well as talking to him about what school is like and driving by it a couple times a week. Next week we'll be visiting for "kindergarten round-up". He has some pretty intense social anxieties, but I think he will be fine, so long as we continue to support him.

Norah is so fun lately. She's going through a mama's girl phase (shhh don't tell Jeff). When I reach my hands out for her, she gets the biggest smile on her face, and reaches towards me. Often times, when someone else is holding her, she reaches out for me and begins to cry her sad, silent cry. It's difficult to resist. When I hold her, she loves to wiggle down my lap until she's laying across my legs. It's her new favorite. She also loves to hang her head off my lap like a crazy girl. She is such a toddler, and I am loving every moment of it.

Our visits seem far too short lately. They're very fulfilling, but I always leave in want of more. I see sadness on her face when I leave. Now and then she cries. It breaks me. So I'm doing my best to live for today, but it isn't easy.

Living on Life Support

Most people think of the term "life support" as the means to an end. Perhaps that is true in most cases, but not ours. To us, "life support" is the means to a beginning. Norah recently had her half-birthday, turning 18 months old. She is definitely a toddler. She throws fits. She gets frustrated. She gets annoyed with her family. She wants to do everything her way and on her own terms. But yes, she is still on life support. She has a trach, a ventilator, a long-term feeding tube, and enough gear to start her own medical supply store. She lives in the hospital still, and our hope is to get her home by the time she turns two years old (but who knows if that will actually happen). While we try to live life fully and happily now, we sure look forward to breaking free of life support.

Jeff and I often daydream about our future. There are so many unknowns, as with all lives. We wonder if Norah will still be dependent on these medical devices when she goes to school. We wonder if she will choose American Sign Language or spoken word. We wonder when we will hear her sweet voice for the first time. We wonder what it sounds like. We wonder if she'll grow to be proud of her challenges, or embarrassed by them. We daydream about the day she is decannulated - the day she gets her trach out. It will be an overnight stay in the PICU, and it will be coming full circle. We wonder how old she'll be. At first we pictured her toddling around, all of her favorite nurses chasing her around the unit. But now maybe she'll be coloring in her favorite coloring book. Maybe she'll be reading a Harry Potter book. Maybe she'll be painting her toenails and texting her friends about how bored she is.

We daydream about Norah and Harper taking care of one another. He will protect her, and she will protect him. They will fight, they will laugh, and I can only hope that they will be close.

There is certainly another sort of life support aside from the medical type. There is the life support that requires the love of those around you to lift you up and help you get through tough times. There is the type that creates wonderful memories to draw upon when life gets difficult. Right now we live on both sorts of life support- the medical and the emotional. It is difficult, frightening, and completely beautiful.

A very wire-and-tube-filled photo of Norah during her recent
PICU stay last week. Her hair is amazing.

Someone I Love

I recently read a lovely poem on a friend's blog that I felt compelled to share.


Poem by Lori Hickman

Someone I love relies on me in ways you will never understand.

Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.

Someone I love is unable to advocate for themselves for things that most of us take for granted.

Someone I love will never have the opportunities that every child should have.

Someone I love will need unconditional love and support after I am gone - this frightens me to the core.

Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others.

Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.

Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.

Someone I love has needs that require more time and energy than I have to give.

Someone I love has needs that mean I am not able to meet basic needs of my own.

Someone I love has needs that have become the driving force behind major decisions my family makes.

Someone I love has changed me in ways I will never be able to describe.

Someone I love has taught me about love and about the really important things in life...

And still others don't understand what it is to be me.. they aren't living in my skin.

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.

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.

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.

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.

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.

Our Most Beloved Star

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

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

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

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

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

Harper and Emma

At about 6 weeks apart in age, Harper and his cousin Emma are the best of friends... although every once in awhile they can seem like worst of enemies. Below is a picture of them (with Jeff and Emily's parents) when they were just sweet little babies, followed by a photo I took today. I love watching them grow up together. 

Happy Half-Birthday, Norah!

Well ladies and gentlemen, we've made it six months with our tough little girl. Her life has been saved more times than I'd like to remember, and every scare, every bit of heartache, and every ounce of tough work has been worth it. She is the warmest, happiest baby I've ever met. Though we'll more than likely be celebrating her first birthday in the hospital in July, it will be the best birthday ever.

Nom nom nom!

Look at that playful girl!

Had to sneak in this too-cute photo taken after Harper came traipsing into the living room wearing my glasses.

A few weeks ago, Norah had a dance party with one of our favorite nurses, Cecily. Though developmentally behind due to her medical issues and life in the hospital, she does really well sitting in the Bumbo chair.

My Little Dude

This post is long overdue, but I don't think I need to give any excuses; I'm sure you all understand. My precious little dude turned three on August 20th (hey, at least I'm not a full month late). Three years ago, we were announcing "It's a Boy!" to everyone. Harper is one of my very best friends. He warms my heart and makes me laugh. He is my precious little guy, and I love him so very much. Though he can be a total booger sometimes, I always cherish our quiet cuddles, sweet affection, and goofy giggles.

We had a fun little get together for his birthday party. The only missing attendee was Harper's "baby sister", as he calls her. This was the first time he was really into gift-opening, as seen in the pictures below. It was a great day. Thanks to everyone for the gift, birthday wishes, and for celebrating such a special day with us.

Even though he has a million little Cars, Jeff couldn't resist. Emma clearly thinks that Harper doesn't needed any more.

"To Harper. From mostly Mom, kinda Dad"... What could it be?

A Seattle Sounders soccer ball! Can I get a woot woot?!

He loved showing off his presents for the camera.

Another show-off! Does anyone see a theme? The kid LOVES the movie Cars.

Even though Norah was at the hospital, we were all thinking of her. And yes, he is the world's greatest brother. He is so so so sweet with her. He even kisses and hugs pictures of her.

Super cool birthday cake! Jeff had to help a bit with the candles.

My little guy has the sweetest face. Although... his cousin Logan is also making a pretty fun face in the background too!

Peanut Update and Sleeping Woes

Other bloggers probably know that sometimes it's difficult to blog when there is something significant that he/she isn't ready to talk about publicly. My doctor (who has been fantastic) is switching my care to a Perinatologist, which is essentially an Obstetrician that specializes in High Risk/Maternal-Fetal Medicine. This will be my third doctor during this pregnancy, and I'm only 22 weeks along. Hopefully it will be the last switch. Why am I going to a specialist? Well, that's a blog entry for another day. I'm still not quite ready to share the details with the world, but that day will likely come. Ultimately, we're all going to be okay, so please don't worry too much. My belly is growing, the baby is moving, and my second trimester has been mostly good to me.

This picture is from our first ultrasound at 20-weeks. The little peanut wasn't really cooperating for pictures, so hopefully we'll get a good profile shot when we have another ultrasound in a couple of weeks. Hopefully my labels help you see something other than a Rorschach test.

One of the more exhausting issues lately is Harper's current (non)sleeping habits. He has been typically waking between 5 and 6 am. When it comes to bedtime at 8pm, he resists with every bit of energy he can find. This leads to not falling asleep until between 9 and 1030pm. I'm sure it's just a phase, but we've all been awfully tired for the past month or so. I'm just thankful that he's still (mostly) taking afternoon naps. And at least this leads to fun photo ops. I only wish I could have gotten a picture of his little bum in the air when he fell asleep just inside of his closed door. We had to completely wake him to get inside. Below is just a sample of the different places he's been falling asleep out of total exhaustion.

A very early morning snooze

A statement of protest

Couldn't stay awake, even at 8am

Harper: sleeping on me

Me: plotting a smooth escape

Asleep at the top of the stairs

Finally tuckered out in a tight corner of his bedroom

The little dude really wanted to remain part of the evening activities

Snoozing on the couch for a nap

My favorite: Looks safe, huh?

Little Dude

Far too much time has passed since my last Harper-related post so it's time to make amends. I finally uploaded some pictures to share, including some from his second birthday party (graciously hosted by Jeff's brother Scott & his wife Des who is seriously a supermom).

Like his mama, Harper is one of the few Leos out there that does not enjoy the spotlight. His birthday party was no exception. He made a bee-line straight for the trampoline in Scott & Des' backyard.

There wasn't much we could do to tear him away from it... I'm not exaggerating. His cousins were much more interested in the presents than Harper was. We had to bring his presents to the trampoline to be opened.

This is what would happen when we would take him off the trampoline. When he wasn't hanging from the edge or bouncing happily atop the trampoline, he was screaming and crying to get back on.

As you can see from his birthday party photos and this one above, Harper was very overdue for a haircut. I generally procrastinate until I'm ready to deal with crying, screaming, squirming, and bits of hair stuck to his sucker, his mouth, and everywhere else. Neither Jeff, Harper, nor I are ready to let a stranger cut his hair, so I just do it. At this point, Jeff and I would rather deal with the tantrum at home instead of public. That's what parenthood is all about, right? Improvisation. Truly, the haircut isn't so bad with Jeff's help. By the way, this is a classic Harper face.

In September, Jeff's brother's (Ryan) wife (Julia) was in town from Georgia to see her family, so we seized the opportunity to take pictures of the trio of cousins that were all born within a short time period. We had such a good time, and it was so fun to see the three of them play together. Cooper is such a sweet little guy. (Left to right: Harper, Emma, Cooper)

   And how about this sweet face? Harper loves to play in our backyard - especially with his daddy. Sure, he's in his "terrible twos", but for the most part he's a goofy, adorable, sweet, happy boy.