Eight Months

Another month has gone by, and our sweet girl is still smiling with that sweet face and two bottom teeth. She's the strongest person I know, and so very loved. She is a charmer and a flirt, and everyone at the hospital is in love with her. I just get get enough of my daughter, and am so glad we've made it this far.

Showing off her two little teeth

Physical therapy AKA playtime!

Enjoying carrots during speech therapy on the left. Just before her swallow study on the right.

Such a big girl in her Bumbo chair for occupational therapy

Trying on the dress I knit for her. All it needs is some ribbon embellishments!

Love this face

Her impressive wardrobe. It isn't always this organized.

One of our nurses made this tutu and bow for Norah. So beautiful!

Uncle Greg and Lolo

A few weeks ago, my dad accidentally spilled the beans on the surprise that he and my brother were coming to visit. During the week leading up to their drive from California to Utah, Harper talked of little more than Uncle Greg and Lolo... or as Harper says, "Uncle Greg and Yoyo".

We had an incredible week together. They were a huge help with car repairs/maintenance as well as some yard work. We hung out, shopped a bit (thanks for the treadmill, Dad), played soccer in the back yard, played with Harper's cars (of course), and visited Norah at the hospital. The experience of my dad and brother meeting Norah for the first time was great. I think it was a little difficult for them to see her connected to so many wires, tubes, and machines, so I pointed out each attachment and explained what they did. My dad still panicked every time Norah let out the teensiest cough or made any face other than a smile. I gave him more than one smack, telling him to not freak me out with his alarm of "Shauna, what's wrong with her!?"

The visit went by way too fast. I sure love them to bits and hate living so far from them. Greg even let me give him a haircut the night before he left. My brother sure cleans up nice. And ladies... both my dad and brother are single!

She couldn't keep her eyes off of her Uncle Greg. He's so amazing with her, too. 

 

Lolo and his beautiful granddaughter. 

Yes, those selfless crazy men replaced the Mazda's alternator. It was somewhere in the neighborhood of 32*F, and our rental house doesn't have a garage. There was still some snow on the grass.

Harper came with us a couple times during the week to see Norah. We had fun family story time.

 

Tuckered out after the long drive from the hospital.

After the hair cut! He wouldn't let me go shorter, but he looks so great with short hair! I sure do miss this guy. He's sweet, funny, brilliant, and all around awesome!

Girl's Night!

I can't remember the last time I spent the night with my sweet baby girl. I've been talking about doing a girl's night for quite some time, and we finally did it on Wednesday night. It was a blast! We stayed up late, talked about boys, and partied hard! The only thing we didn't get to was the pedicures. Maybe next time. The highlight of the evening was migrating everything that she's tethered to over to the pullout bed so we could lay on it together for our girl talk. For just a few moments, things felt "normal"... whatever that is.

I'm still in the process of adjusting to daylight savings time, so I had no problem staying up way too late chatting with the night shift nurses. It was super fun, and I can't wait to do it again soon. I do have to admit that I missed the boys at home. Being a divided family is no fun, and I'm so ready for Norah to be able to come home. The tunnel is a long one, but I know that there's a light at the end of it... which is more than a lot of other families can say.

In other news, Norah is has a colonization of gunky bacteria, which is sort of par for the course with a trach. She had about 24 hours with an IV but they switched her to a non-IV antibiotic. She just hates not having function of both hands. They are crucial to both playtime and comfort time. Oh! and I nearly forgot the BIG news - she cut her first tooth last night! I was so glad to be there for it, too.

Sweet cuddles with mama on the pull-out bed. Note the IV in her right hand and the drool-catching bib.

Wiped out from a fun, late night. I loved being able to glance over to my left any time in the night to see this lovely girl on the other side of the room with me.

The morning-after: a bathed, dressed, happy girl! No more IV!

This one was taken a couple days ago. How cute are those leggings? Norah enjoys time travel in her spare time and wanted me to tell you all that 1983 sends its regards.

The State of My Heart

I always knew that I wanted to be a mommy. I especially fell in love with my friend Janette's kids - Noah, Jaidyn, and Lexy. I was their Sha-Sha, and they were my babies. I instantly loved them with a ferocity that I thought was as intense as it could get. But when Harper was born via c-section 3 1/2 years ago, I hadn't expected my doctor to simultaneously transplant my heart into his body... at least that's what it felt like. Suddenly, I was only remotely connected to my heart, which was now beating in someone else's body. Parenthood takes love to a whole new level. This first photo is of Harper and I when he was about six weeks old... the age Norah was when she was trach'd. My little buddy rarely left my side for longer than a moment.

After my maternity leave ended, I found that the value of my work was not equal to the cost of being away from my family. I didn't want Harper to be raised by sub-par day care or babysitters. Jeff and I wanted to raise our family on our own terms, and with our own parenting techniques. We are lucky to have a house full of great love and respect, so we wanted Harper to get the most from it. I quit my job after only a few months, and haven't regretted it for a moment (despite the challenges that accompanied both income and lifestyle changes). We no longer had to make compromises when it came to raising our family.

Of course, everything is different now. While I am beyond grateful of my family's support in watching Harper while Jeff and I are at the hospital, it is still difficult to leave him in the hands of anyone but Jeff and I. And just look at what we have to do with Norah. Though Jeff and I have collectively never missed a day with her, I sometimes go without seeing her for days at a time, or even over a week when I'm sick. She is cared for by doctors, nurses, and various therapists. Instead of receiving visitors to see my sweet baby girl, I am the visitor. It is so difficult to leave her at the end of the day. These same parents that could hardly bear to leave their son at day care now have to trust others with the well being of their children. It brings a whole new meaning to the term "it takes a village..."

But of course all of these compromises come with a whole lot of amazing things too. Harper now has such a close bond with his cousins and Aunties. And where do I begin with the joy that we've experienced at the hospital with Norah? I simply adore some of the nurses (you know who you are!), and have become great friends with some of them as well as therapists, doctors, and other parents.

With Harper, I wanted to be selfish and keep him all to myself. With Norah, I am compelled to share her with everyone. I want the world to see how strong and amazing she is. I want them to see her triumphs and her happiness. I want to share every smile with whoever will take it. I love that the PICU staff is so bonded with her, as it makes leaving her there so much... well... not necessarily "easier", but "better".

To say that I love my kids is an understatement. Like any parent, I want the best for them. It just makes things so difficult when the two halves of my heart (Harper's and Norah's halves) must live in two separate places.

Everything goes straight to her mouth. We're still waiting for those teeth to pop out!

She sure knows how to have a good time!

So in love with this face!

We try to make things as "normal" as we can for Harper. We went to the nearby nature park a couple days ago and he had a blast!

Care Conference

We had our recurring care conference on Thursday. We got together with some of Norah's many care givers to discuss how things are going and the current plan for care. I never fail to cry during or after these meetings.

Everything went well, and Norah is doing great, so that wasn't the cause for my tears. The problem is that these meetings remind me that Norah is so far from being ready to come home. They remind me that while she's happy and thriving, she is still a PICU patient. Her smile makes that easy to forget.

Will she wean from the ventilator soon? Probably not. Will she be home for her birthday? Not likely. Will she even be home for Christmas? I don't know. This experience has been the ultimate test of patience, strength, energy, and optimism. I'm feeling pretty tapped out of all four lately.