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  

New Normal

I always cringe when I think about the name I chose for this blog...New to the Parkers. I was so naive at the time thinking what an adventure having a baby was going to be.  In my mind I only pictured the good kind of adventures. Taking our new baby to the zoo, to parks, hiking, on vacations...I pictured myself as a very active new mom apparently. To give my pre-baby self credit, it has been an adventure but filled with more trips to the hospital than anywhere else. 

As cringe-worthy as I find the name it continues to be fitting. We are definitely in new territory here. As I have been reading about life with a trach kid and talking to others who have experience with this, everyone's favorite phrase seems to be 'new normal'. As in, it's not so bad you just have to find your new normal. 

Leading up to and right after Jackson got his tracheostomy everyone we spoke to was so positive about it. "This is such a great thing!" "He can breathe!" "He has a safe airway!" "Life will be so much better now!" After fighting my initial urge to punch every one of them in the face, I tried to embrace the positive attitude. New normal here we come! I started dreaming of all the ways this could improve his life. We had always kept him in such a bubble to keep him healthy. Hand sanitizer and bleach wipes were our best friend. We avoided public play areas like the plague. But suddenly all my dreams of taking him to do fun things came rushing back. I was determined to make this up to him, as he lay in bed sedated for a week I made all sorts of promises to him to take him to do amazing, fun things. I was determined to make this tracheostomy a positive thing. The first day he got transferred out of the PICU to begin his rehab and our training, reality came crashing down on us and I was the one getting the punch in the face. And the gut. And the heart. He wouldn't be able to go to the grocery store let alone any of the fun places I had started dreaming of taking him to, to make up for this horrible thing that was happening to him. I had no idea just how fragile he was. It was not one of my strongest days as a mom. But I took my selfish moment, mourning the loss of the life we had before. And then forged ahead on our journey of finding our 'new normal'. Our first full day home from the hospital, Hunter and I toasted to finding our new normal and then promptly went to bed at 7pm because it turns out our new normal is exhausting. 

Three days later we were still exhausted but feeling pretty confident that yes we can do this. Our new normal isn't so bad. Then that night Jackson decannulated himself (pulled out his trach) in his sleep and Hunter and I had to resuscitate him. Turns out that trach training and CPR class they make you take is no joke so if you ever find yourself in one, pay attention! After that happened we had people say to us I don't know how you handled that, I don't know how to respond to that except to say you just do. You don't even think, you just act. 

Two weeks later Jackson started having problems with his breathing and they told us to change out the trach to see if that resolved the issue. We couldn't get the new trach back in and suddenly that 'safe airway' the doctors promised us was gone. I was holding it in my hands and I couldn't get it in. I was literally holding my son's life in my hands and I was failing him. This is what our new normal looks like. It did eventually go in, and we were able to resuscitate him, and he is safe now. But I feel myself changing as a mother. I have now watched Jackson go code blue twice in the NICU, three times in the PICU, and twice at home. And my heart is breaking and changing and this is not a new normal I know how to deal with. And I'll be honest it's not one I want to deal with. I want to run away from this. I want to hide from it. I want to turn back the clock and change things. I want to fast forward to a time when I dream this is all resolved. I want this to all go away. I want a different new normal. 

And that is where I am at today. That is the brutal, honest, ugly truth of our 'new normal'.  We try to be so positive if not just for our own sake to protect ourselves from the scary reality but for Jackson's sake. He deserves it. As much as it feels like this is happening to us, the truth is it's happening to him and we're just here to support him. So now that I've let out all the scary feelings that I've been holding inside, I can go back to being positive tomorrow.

And to end this super depressing post, I'll share one story about the lighter side of our new normal. There is a Norovirus outbreak in the PICU so now there is a security guard at the door asking everybody about their bowel movements. If that doesn't just make you cry-laugh about your 'new normal', I don't know what will.

So cheers to finding our new normal! Let's pray it continues to change and evolve past this. And I promise to be positive again tomorrow. 

I'll leave you with this picture too because Jackson hugs are the absolute best and make you feel like it's going to be all ok.