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. 

6 months old

Happy half birthday baby! How has 6 months gone by already? Realizing that six months has already gone by was definitely my wake up call that it all goes by so fast and to enjoy every minute of it. (And to probably start documenting it better again).

I often catch myself worrying about if he's 'doing' everything he's supposed to at his age. Is he eating enough? On his tummy enough? Growing fast enough? Playing with toys enough? Happy enough? I catch myself comparing him to other 6 month babies. 3 month babies. Premature babies. Always wondering is he on track? Are we doing this right? But I catch myself and remind myself to just enjoy every amazing thing about him. While visiting with another preemie mother I met, making small talk about is your baby doing this? Or that? As all new mothers do. She shared her favorite saying with me,

"A rose doesn't compare itself to another rose. It just grows how it's meant to grow. "

I thought it was such a sweet reminder that all babies are special and beautiful in their own way, and they are just going to grow at their own pace. 

So here a few things about our sweet, 6 month old, Jackson:

- Weighs 8lbs 8 oz

- Oxygen is at 1/16 liter per minute but we've starting turning him down to 1/32 quite a bit and that's the last step before being done with it

- Is already a little charmer. Loves to giggle and smile in response to you laughing

- Lights up when Dad comes home at night 

- His head had a big growth spurt, and won't fit through most newborn clothes, although his body still does 

- We think the large noggin is also why he doesn't enjoy tummy time as much lately, too heavy to lift 

- Starting to show a little interest in toys, will hold onto them if you put them in his hands

- Loooves his swing and the mobile on it, he calls out to the monsters on the mobile "aaaaahhhhh ooohhhh"

- Toots all morning long while he is waking up, so we sing 'Born to be Wild' to him every morning cause he's "getting his motor running..." and he laughs

- Has rolled from tummy to back a few times but not consistently. He sure tries hard though

- Finds his hands to be the most fascinating thing right now. He holds his hands in prayer a lot and is obsessed with putting them in his mouth

- Started sleeping 8-9 hours at night (I hate to even write it for fear of jinxing myself)

The week Jackson turned 6 months was a big one. We went to a Utah for Dr. appts (everything's good!), saw family and friends, took his first airplane ride to Henderson, NV to see Grammy and Grandpa, dipped his toes in the pool there for the time, and went to his first restaurant. 

We couldn't be happier with how wonderfully Jackson is doing. 

Jackson loves to be sung to, we got him to smile do big in these pictures because my Dad was singing to him. 

Discovering toys are pretty tasty

But hands are his first love

Can't beat pool time at Grammy and Grandpa's

Goodbye Utah

Moving Day Eve. It is such a bittersweet night. Tomorrow we will say goodbye to our friends, family, and first home. 

A house that Hunter and I literally poured our blood, sweat, and tears into with countless renovations. A house that taught us we are just not DIY kind of people despite our best intentions...we get it done but we usually learn how to do it the hard way along the way. Long nights into the early morning painting rooms. An entire summer dedicated to a sprinkler system, fence, and landscaping. Roughly 900 trips to the hardware store. 

A house that Hunter and I planned a wedding in, became Husband and Wife, and welcomed our beautiful baby boy home to.

A house that I thought I hated and made countless threats to destroy it. I have actually grown to love and am going to miss. (Even the dungeon wall in the basement, because how many people can say they have a dungeon in their basement?) This house taught us patience. It taught us strength and skills I didn't know I had. It showed me how truly talented my husband is. It taught us that it really doesn't matter where you live, it's who you're with that matters. And if I do say so, it turned out beautiful after all that work. 

A house that became a home. 

A home we now say goodbye to and start our next adventure in Gillette, Wyoming as a family. It is sad to say goodbye but it has been a long 6 months with Hunter working in Wyoming and only home on the weekends and we can't wait to be a family together again.

Jackson's NICU Stay Video

It took me 3 weeks to edit over 2,500 pictures and videos from Jackson's time in the NICU down to 3 minutes, but here are his first 103 days of life. It was quite the journey to go back through these pictures. He is truly our miracle baby and we are so blessed to have such a happy, healthy boy. It's amazing to see how far he has come. He was such a fighter and continues to fight on. FOJSP!

Day 103 HOME

And we're home!!! See ya NICU!

Day 102

Jackson day 102:  2468 grams or 5 lbs 7 oz. We are at the hospital rooming in tonight bringing the boy home tomorrow. He is hooked up to a Brady cardia monitor. If his breathing rate or heart rate are too fast or too slow it alarms very loudly. He is eating great. He is sleeping soundly right now. We will be here until the doc releases him likely tomorrow afternoon. We'll keep you posted.  FOJSP! 

Day 101

Day 101

Jackson day 101: 2459 grams or 5 lbs 7 oz. since he's not gaining very fast dr. Nold has put him back on fortified milk. But she said this will not stop him from coming home Monday. The pediatrician can monitor his weight gain from here. He is now on demand eating. So he can eat whenever he wants. He's taking full advantage, eating every hour sometimes and then switching it up to every 4 hours. This little guy will keep us on our toes for sure. FOJSP!