Surgery

This is the big one. The one I haven't wanted to write about. Talk about. Even think about. I kept saying I won't talk about his surgery until we have the date. Now we have the date and I have to think about it. 

July 8th. 

We are traveling to Cincinnati this summer for Jackson to have a Laryngotracheaplasty reconstruction surgery (LTR). They will cut out the damaged part of his trachea and take a piece of his own rib cartilage to reconstruct his airway. The top hospitals in the country do about 10 of these a year. Cincinnati Children's Hospital is the leader in the world for this type of surgery and they do 50 a year. We will go out the week before for Jackson to have a week of testing to see if he's a candidate. If he is, he'll have the surgery July 8th. Then he has to stay in Cincinnati for about 6 weeks to recover. 

I've had a weird relationship with this surgery for the last few months, looking forward to it with both hope and dread. 

It's been my last shred of hope that Jackson will get better and go back to his normal life. I've clung to it with all my strength. This is what we're working towards: keeping him healthy, getting him stronger, getting him to Cincinnati for surgery. And I'm terrified he won't be able to have the surgery. 

But I'm also just as scared he will be able to have the surgery. This surgery feels too big. He's already been through so much this year, how can we already be doing more to him? And what if it fails? When you've been holding on to hope so tightly, it's scary to let go. It seems too good to be true that the nightmare we have been through this year, could really be undone this summer. And aren't we always taught not to trust something that seems too good to be true? 

So I'm scared. I'm scared he won't have the surgery. And I'm scared he will have the surgery. But despite our fear, we're moving forward. We're making plans. On to Cincinnati. 

Jackson's driving the bus and we're along for the ride. 

Thank You

I still remember vividly sitting in the surgical center waiting room while Jackson was having his tracheotomy. It was after 8pm. His surgery had been pushed back several times. It had been a long day of anxiously waiting after an even longer 3 weeks of anxiously waiting and hoping he would get better. We had once again declined offers from family and friends to come sit with us while we waited during the surgery. We were drained, emotionally and physically, and just wanted to be alone. 

But as we sat in the waiting room I remember looking around to see families everywhere. Even that late there were several other families waiting. There was one in particular that must have had 15 people waiting. All in matching shirts with balloons. I have no idea what kind of surgery their kid was having or what kind of battle they were up against. Maybe it was an easier one. Maybe it was harder. But I just remember thinking they looked too happy and at ease to be in a children's hospital. It reminded me of when my father in law was fighting cancer and the whole family showed up to the hospital in matching shirts every single day he was there. The doctors and nurses all knew who the Parkers were. My father in law did not have an easy battle but I bet there were other patients and families who were fooled into thinking so because he had such a large team there to cheer him on, make him laugh, be his support. I bet there were times another onlooker thought 'they are laughing too hard to be at the cancer institute'. As I watched that family, thinking of our family, I turned to Hunter and said maybe we're doing this wrong. Maybe we shouldn't be trying to do this alone. 

It was after that night we stopped fooling ourselves into thinking we could do this alone. We let down our walls we had put up thinking they were protecting Jackson. Protecting ourselves. From what, I'm not sure. We let go of the thought we could do this all alone because we weren't meant to. We are fortunate to have such an amazing family and friends so willing to help us out.  Since then we have been absolutely and completely blown away by the generosity of our friends and family. Words will never do justice to the gratitude in our hearts for all of those that have helped us in so many ways. Jackson is stronger, healthier, happier for the love and prayers he feels from so many every day. Thank you. Thank you for your prayers. Thank you for your generosity. Thank you for your support. Thank you. 

Beautiful Noise

Jackson losing his voice has been a tough pill to swallow in all of this. It was one of those things we didn't even think about until after he had gotten the tracheotomy. When Jackson first got really sick and was intubated the silence in his room was noticeable. And we didn't like it. Hunter kept a steady loop of soft music playing for 2 weeks because we couldn't take the silence. We would torture ourselves watching videos of Jackson running around, yelling over and over just sobbing. Praying for the day when we would see him like that again. 

Because Jackson has so much scarring in his airway now he is not able to push enough air up around the tracheostomy and talk. Removing the feeding tube in his nose reduced a little pressure his esophagus was putting on his trachea allowing him to make some small noises again. But not enough for a speaking valve. 

But the thing is Jackson doesn't need his to voice to make noise. Lots of noise. Beautiful noise. We worried so much about how he would communicate with us. How would we know what he wanted. Or if he needed us since we couldn't hear him cry. But Jackson has picked up sign language so much faster than I imagined. And now he communicates better than he did before (which was mostly just a combination of pointing and yelling with a few bye byes thrown in for good measure). 

I put together a video of the signs Jackson has learned so far. The first clip is the last video I took of him talking on December 27th. Watching it doesn't make me cry anymore. It makes me proud to see how far he's come in his communication. Especially now that I know he will have no problem continuing to make noise. Lots of noise. Beautiful noise. 

9 Months

This post is for Riley. 

The second child.

The healthy child. 

The not forgotten child. 

A family friend came to visit Jackson in the hospital a few months ago and he asked how Riley was doing. I told him she was getting spoiled with two grandmas there taking care of her while Hunter and I were consumed with the scary reality Jackson was facing. He said oh that's good, it's always the healthy kids who get forgotten. I know he was referring to his own childhood having gone through a sibling having health complications. I know he wasn't bitter and didn't mean anything by the comment, it was just the truth of how he had felt at the time.  But it breaks my heart to think of Riley saying that in 30 years. 

Even being a preemie, since day 1 Riley has been an easy, dream baby. She has always been a great eater, great sleeper, and just an all around happy baby, hardly ever crying. Especially in comparison to her wild older brother running around, causing chaos everywhere he went.  She always seemed so calm and easygoing. It has been a long running joke to tease me about not forgetting Riley because she is so quiet you might forget she was there (not because I ever actually have forgotten her!). 

So this is for Riley so I can always look back on the amazing things she is doing right now. The things you think you will remember forever but in reality the details will already begin to fade within the year. 

Happy 9 months sweet girl!

Not really crawling yet but is trying so hard. And between rolling, pushing backward, army crawling, and something that looks like an inch worm...is managing to make it across the room before you know it. 

Loooves to eat. Everything. Except green beans. Those make her gag and cry. She's a carb lover at heart like her mom. Oatmeal and Cheerios are her favorites. But she also loves carrots, peas, bananas, and eggs. She makes the funniest face while eating tart things I can't help but keep giving them to her even if she doesn't love them. 

Has two teeth. On the bottom. Razor sharp. Is still nursing. Enough said. This also causes her to test the deliciousness of things edible or not. 

They may be tiny, but I know they're there. And I just noticed that is a mustache changing pad, the joys of big brother hand me downs start early Riley. 

Loves bath time. Or as she calls it splash time. 

Is a raspberry blowing queen. Has a laugh that sometimes sounds like crying. Is learning to use her voice. I swear says mama. Goes to sleep at night without crying. And is all around just a sweetheart.

We love you Riley. You will never be the forgotten healthy child. Even if your mom is a little late putting together your baby book. And just know from one second child, little sister to another... I feel your pain. 

Hospital Birthdays

Our family is getting pretty good at celebrating hospital birthdays. Jackson actually had a really special 2nd birthday here last month and my 30th birthday was pretty awesome too. Actually I would go so far as to say it was one of the better ones. Turning 30 was a great time to reflect on how much has changed in 10 years. A few friends shared some throwback photos and I can't help but look at that crazy 20 year old college girl and laugh at the problems I thought I had then; at the carefree, optimistic way I approached life assuming things would always work out, thinking nothing bad would ever really happen. I definitely never imagined my life being where it is now. 

My mom asked what I wanted to do for my birthday and at first I felt too guilty to celebrate. I worried it was too selfish, what would people think of me if I left Jackson for a bit. But after some encouragement from my mom I realized it was ok to leave the hospital for a little bit. It was ok to still take a little me time. It was ok to still celebrate my birthday. So thanks to a lot of help from my parents and brother-in-law and sister-in-law who all helped watch Jackson and Riley (it takes a village!) I got to enjoy a perfect day that made turning 30 feel pretty good. Even though Hunter and I spent the most of the time talking about mucus (yes this is normal dinner conversation to us, obsessing over the thickness of the mucus in Jackson's lungs), and hospitals, and upcoming surgeries...Hunter and I both agreed it was the lightest our hearts and minds have felt in months. 

I am so glad we took the opportunity because Jackson is coming home today. While we are thrilled to have him home again, we are nervous. And we know that we will not have the opportunity to go out together like that again for a long time. One of us always has to be with Jackson. He can't be left alone with anyone who is not trained and prepared to deal with his trach coming out and resuscitating him. And that's a big ask. 

So while Jackson was in a safe place I'm glad we took the chance to soak up some sunshine, savor that cocktail, reflect on the past, and start to look ahead to our next challenges. Here's to another great decade and hoping that in 10 years we're sitting back, watching two healthy kiddos run around, with hospital life a distant memory, thinking wow I never thought my life would take me here. And maybe enjoying that cocktail on the beach next time. (Hint hint Hunter 😉)

Eating...it's kind of a big deal

This will be a quick update because Jackson is having surgery this afternoon (or as we speak because I was slower to post than I intended) to put in a more permanent feeding tube into his stomach. 

Which on the plus side means we're getting this adorable face back!

But on the down side it should make the game "where's your belly button" more interesting with an extra button on his belly. 

Eating has been a big challenge for Jackson for a long time. After all the medical things he has been through he developed an oral aversion. He wouldn't chew on his fingers, toys, and gave a big 'no thank you' to any solid food. Our saving grace was he was still ok with his bottle. That was until this January when all these issues started and now he's refusing the bottle too. So he will be getting a g-tube while we work on his feeding therapy. 

I thought this was an amazing article that really explained oral aversion and the options for therapy if you're into that sort of thing: http://mobile.nytimes.com/2016/02/07/magazine/when-your-baby-wont-eat.html?mwrsm=Email&_r=0&referer=

On the flip side there is this girl who loooves to eat and made for a fantastic cafeteria breakfast date this morning even though she stole all my scrambled eggs 

I'm being light about this surgery because 1. Optimism and humor is how I deal and 2. It is pretty common surgery and there are usually no complications, but we know how that goes...

Most kids

"Most kids..."

I think these are my least favorite two words in the English language. (Except for moist and the way my husband says mother, think old fashioned kid who's in trouble 'yes, mother'...um no I'm young and hip and a mom thank you very much. But that's probably too off topic here...)

Back to my hatred of any sentence that starts with "Most kids..." There is safety in numbers and when your kid isn't following what most kids are doing you feel like a failure. To be clear, not that your kid is a failure, but that in some way you failed them. 

But what do you do when it's something big and scary that your kid isn't doing like they expect? Where is your safety in numbers? What are you supposed to believe or expect then? 

Less than 10% of babies are premature. Less than 2% of those premature babies develop subglottic stenosis (narrowing of the trachea caused by scarring from intubation). Of those 2% who receive a series of procedures to dilate the trachea 0% end up with no airway and needing a tracheostomy as a result of the dilation. Zero percent! Awesome. Thanks stats. I hated you in college and I hate you now. 

Over and over again doctors have tried to comfort us with most kids statistics but our little Jackson continues to show us he's the exception. 

So here we stay in the hospital until they figure out why he is the exception to this latest rule. Why his lungs just don't seem to want to cooperate with this tracheostomy. So far I have resisted the urge to punch anyone...yet. But you can be damn sure the doctors are careful when they use the words "most kids" around me. 

But while we wait to figure out this latest issue, I'll share some most kids statistics of my own... 

Most kids don't have hair as awesome as Jackson's

"Yes, I just wake up with these curls, cause I'm awesome like that"

You know you wish you had curls like these

"Great Scot Marty!" Where's the Delorean when you need it? Get me the hell out of here! 

And I bet you most kids don't have a dad as awesome as Jackson's...

While trying to figure out the lung issue they told us it's a dehydration issue for 'most kids' so Hunter took fluid intake tracking to the next level with charting that would make any nurse jealous

And then he took it next level...level NERD...when he discovered he could project it on the wall. But he is one awesome dad and we can definitely eliminate hydration as a source of the problem