Lucas Camilo

This past weekend we celebrated Ida’s first birthday, and our first year of being a family of four.   It’s hard to overstate how amazing any first year of life is, and Ida’s is certainly no exception. She’s gone from a totally helpless infant to having lots of personality and skill in getting what she wants out of the world. She smiles, rolls, grabs, turns pages, sits and plays, says “baaa” to balls, “boah” to dogs, “mamamamamama” with a loud cry at 5:45 am when its time to get up. She has the most amazing deep belly chuckle, that escalates to almost breathless writhing and kicking and when Burke is coming in for a tickle attack.

We first decided we didn’t want to throw a birthday party (too much work for a baby who doesn’t know the difference!), but that decision morphed into three days strait of wonderful, small celebrations. On Friday, her actual birthday, the four of us went out for pizza and beer to celebrate our family-versary. On Saturday we had a fun dance party with our extended family here in Seattle, including an amazing Xbox inspired dance party and Ida’s first experience of cake.

On Sunday we had a few close friends and their kids over for not-party number three, where we put party hats on cute toddlers and blew out another birthday candle. Our most special guests were Sha and Matt and their baby, Tighe. Tio Sha and Matt have been close to Lucas since he was born, so it was really exciting to introduce Lucas to their daughter and have them in town to celebrate both our growing families.

Ida loved it all. And as far as I can tell, Ida has loved just about every day on earth so far. She is an almost constantly content baby, either giggling, or saying “oooooh!!” at other babies or dogs, making fun faces as she smears food everywhere, or asking to be picked up and held. So I’m not sure if her birthday weekend felt any more special than any other day.

Everyone asks us “How’s Ida?” And we often just say this: She’s so happy. We couldn’t have ordered up an easier baby. (Did we mention that she’s gone from waking up almost every hour of the night to sometimes sleeping 11 hours straight?)

The other question that sometimes people are asking is “how is her body doing?” Or maybe they mean, “how are you, her parents, doing with her physical delays?” She’s so clearly different than your average baby by now. She’s one year old and she’s not able to crawl yet, much less stand on her own or walk. And the short answer is, we’re doing great. We’ve got a brilliant six year old showing us how to live joyfully with limitations. We have a happy baby who is figuring out how to move around.  Recently she’s become quite confident at moving around the room by sliding out on her belly from sitting; then rolling across the room; then pushing, pulling, and heaving herself back up to sitting. She usually goes for a bookshelf or shoe corner or backpack that she can quickly dump out and then inspect the contents.

And the more complex answer is that of course we worry. We hope that she’ll feel confident about living a full life, whether her disability ends up feeling major or minor to her. We wish that we didn’t have to add to our calendars the long list of appointments that come with motor delays. We wish she could keep up with her peers who are running around the room now. And we’re OK with all that, too. Lucas has taught us so much, including the fact that you can both wish things were easier and love exactly the kid you have in front of you. And that’s what we did this weekend. We loved up Ida exactly as she is. Brilliant and funny and moving in her own way around the world.

The short post-op blog update is this: Lucas is doing great.  He came home from the hospital just a day after surgery, and two days later he was back to school.  He appreciated all of the love – jokes, emails, videos, and emoji-filled text messages.  Thank you for your support.

The longer post-op story is that hospital stays are grueling, even when you’re there for just over 24 hours.  In many ways we are fortunate — Lucas hasn’t needed to be in the hospital for a long time, so some of the challenges that we’ve been through before manage to take us by surprise: doctors needing to be right all the time, even when they’re not; nurses determined to take vitals every 4 hours, even when the kid and his dad just need sleep;   discharge taking hours longer than expected because we need a few pieces of information that no one can figure out.  Hospitals can really suck for parents.

Meanwhile, Lucas was a champ.  He didn’t complain about the constant prodding, and when we asked him about pain he said it was minimal. We watched the Lion King (which Lucas had never seen before) and though it seemed to please the hospital nurse — who kept reciting the lines and singing the songs — even more than Lucas, it was a good distraction.  Lucas especially enjoyed reading all the emails and Facebook comments from friends on his iPad. Though we haven’t had a chance to respond to everyone, you should know that Lucas savored every word and felt genuinely special that so many people were thinking about him.

After Lucas got home from the hospital there was still some pain and discomfort so he ended up needing to miss a couple days of school for recovery — more than the doctors had told us he’d need.  But he rolled with it, saying that it just felt like an extended weekend. Burke had to go to Nevada for work for a couple days, but he got back in time for Valentines Day.  Although its not a holiday Burke and I usually get very excited about, it was so fun to see Lucas love feeling the love.  He was back at school last Friday and made valentines cards for all his friends, and was excited to read through the valentines he brought home from his classmates.  (“They all know I like dinosaurs!?” he’d say each time he found one with a personalized dinosaur picture on it.)

On Sunday we took Ida on her first zoo adventure, and Lucas had a great time visiting the animals.  That evening he was so inspired by love that he kept trying to invent his own little sayings… like “I’m feeling hearts inside myself” and “love is surrounding us all.”  And it wasn’t just cliche Valentines love.  Lucas actually feels and expresses a lot of loving thoughts these days, especially for us.  It is humbling to the point of overwhelming sometimes to have our six year old — the same one we used to describe as “not very concerned with other people’s feelings” — unabashedly showering us with love.

So Lucas is doing amazingly well, and all the outpouring of love and support is certainly helping Burke and me recover from our short stint at the hospital.  Lucas’s sleep has been pretty bad over the past few days and thus we’re still feeling a little frayed from the whole ordeal.  So keep sending Lucas your emails and emojis, and visualize a good nights sleep for our whole family one of these days.

Lucas getting “nuzzled” by Stanley as he arrives at the hospital.

Lucas made it through surgery!  This afternoon he’s drowsy, but he’s still asking everyone at the hospital their name and telling them that he’s a dinosaur guy and a whale guy.

Our morning started at 5 am, with a hospital check-in at 6:30.  Lucas was amazing — he cheerfully chatted up everyone who came into the pre-op room.  And if you haven’t had surgery recently, let me tell you that means A LOT of people.  While we were feeling grumpy about having to answer the same questions a million times (the questions on the hospital standardized lists, not necessarily the questions most pertinent to Lucas’s unique needs), Lucas stayed goofy and fun throughout.  He introduced everyone to Stanley (his stuffed stegosaurus), and he convinced the doctors to let Stanley come into surgery with him.

I was able to go into the operating room and – this is maybe a story for another post – when I started questioning the anesthesiologists vent settings they tried to usher me out of the room before Lucas fell asleep.  Needless to say, I stayed next to Lucas until he was completely out.  Even as the nitrous oxide kicked in, he was asking me about the different sounds in the room and making sure Stanley was nearby, curious but wonderfully worry-free.

The four hour wait was hard, but I felt lucky that Burke and I could both be here.  Burke’s job gives him the flexibility to work from anywhere, and then take off the hours that he needs to be there for Lucas.  So we took turns getting antsy and then making coffee runs and trying to read/work/email to distract ourselves.

We’ve been with Lucas in recovery since about 1:30 this afternoon.  For the first couple hours his voice was very faint and his eyes at half mast, but the anesthesia seems to be wearing off now.  His voice is louder, and he’s paying close attention to the dino story he’s listening to.  We had hoped we’d go home today, but its looking like he’ll probably spend the night just so that the docs are sure that he’s totally stable before discharge.

Lucas and Daddy and Stanley checking Lucas’s email post-op.

Lucas immediately wanted to check his email and he has loved the messages of support — thank you all for the love!  He was especially taken with the multiple dinosaur poems.  John Helmiere wrote his own (!!), but Lucas is also happy with pictures, poems, links… anything off the magical internet.  His other new favorite thing are emojis.

Finally, we want to send out shout out to Lucas’s grandfather (aka Papa) who also went through surgery today on his knee.  He’s recovering across town, and hopefully everyone will be home and healthy soon.

Tomorrow Lucas will go into Children’s Hospital for a long-planned surgery. It’s a relatively minor urological procedure… and yet it’s still surgery. We’re confident it will be success but still slightly nervous given that there’s always a possibility of complications when you go under general anesthesia.

Lucas seems pretty chill about it all.  It’s not his first surgery but it is the first time that he’s old enough to have a sense of what’s going on.  We’ve explained to him about the procedure and why its needed, and Krista even showed him some videos about kids going into surgery yesterday (including one with a doctor who had an awesome British accent, which Lucas always appreciates.)  He even said that surgery was his “bud” for the week – i.e., what he’s looking forward to.

At any rate, we just wanted to let friends and family know so that you’ll be thinking of Lucas tomorrow afternoon… and maybe even send him a message of support.  He has his own email address now (lucas@estansbury.com) and though it takes him a while to write individual responses, he loves hearing from people and writing silly things back.

Lucas saw his first full rainbow the other day!