Happy Birthday!

Happy 1st Birthday to our little man!  I've always thought that birthdays are a pretty big deal, but this one was a VERY big deal! ONE! Josiah had 2 parties.  We were able to go back to Nebraska to celebrate with family and then we had his big ole' Texas party with our "Texas Family". :)

The Nebraska party was a little spur of the moment, but it couldn't have been any better!  We were able to celebrate with Grandmas, Grandpas, Aunts, Uncles, Cousins, Great Grandma, and  Grand Aunts and Uncles!  The party was post-bedtime, after a crazy week with little to no naps, but it went about as well as could be expected!  We left the next morning to return home for his Texas party the following day.

We had a Police-themed party with a gorgeous police cake and a little donut smash cake for the 1 year-old.  There were lots of friends and it was an all-around great day!

We had LOTS of food! Complete with [cop]corn, donuts, police cars, & "lunch break" (sandwiches) :)

We had a "craft station" complete with a spot to make your very own police badge!  The kiddos were able to take home a treat bag complete with a mini police car, a star sucker, and a police ducky.

A friend of ours made his awesome police cake topped with a police siren!

Both parties require a family picture!

Happy Birthday!

Two parties means two smash cakes, two renditions of "Happy Birthday" and two MAJOR cake-related melt-downs! Can't blame him. For a kiddo who doesn't eat anything by mouth, putting a sugary, gooey, sticky cake in front of him could be enough to make anyone melt down!  We didn't force the issue, as this was a celebration...not feeding therapy. ;)

Of course, Mommy and Daddy were quick to the rescue! :)

Once the party was over and the majority had left, we let him explore in a little more comfortable setting.  None of the cake made it to his mouth, nor did we expect it to, but I did get those "smash cake" pictures that are oh, so adorable!

Happy Birthday, Peanut! We love you more than you'll ever know!

Our Hero

Many who know me well know that I'm not one to vocalize my political views or get into a heated argument about something.  One, because I'm not one to research topics to get accurate information to argue my point. Two, because I don't like conflict.  Well, this stirred me up a little too much and I feel as though something needs to be said.

As I opened my email today, I noticed a popular tweet headline: "Local police involved in 400 killings per year".  Opening the article, I instantly became angry at the portrayal of our police officers.  Reading through, I read how one sided it was toward the evilness of police and the portrayal that they are out to get innocents.  Really?! It saddens me to be reading articles about these men and woman who, day after day, go out and put their lives on the line to keep us safe, yet they are targeted as malicious and nasty.

There is a lot of coverage, especially this week, about a particular shooting that happened.  Again, I don't know specifics (remember...research... :/ ), but I do know how our nation has jumped on this bandwagon that police are bad.  Let me tell you something...my husband is one of the most protective men whom I've ever met.  He wants the best for people, but he also knows that he can't "fix" the world. (If he could, he would!) He has wanted to be a police officer for a long time. And now, here we are. He did it! But now, on top of all of the rational fears I have of having a police husband who is on the streets many hours a week, I also have to worry about what would happen if he got into something and our nation turned against him because he was protecting the lives of everyone else in that situation.

I'm new to this whole "police wife" business.  Here's what I know about it: it's scary. Every night as I'm putting our son to bed, we pray for Daddy's safety. Every night as my hubby walks out the door, I say, "be safe". I've said it every shift he's worked since he started on the streets.  A part of me jumps when my phone rings or there's a knock on the door while he's at work for fear that I'm about to get bad news.  This isn't an 8-5 shift at the office.  It's long hours with a lot of missed family time because he's serving a community who could care less about him and the job he's doing. 

Here's the bottom line: I'm proud of my husband. I'm proud of the other police officers who serve communities around our nation.  It isn't an easy job.  They get a bad rap and they put up with a lot. A LOT! I'm tired of hearing our media making villains of these people for doing a job that not many would do. A job that not many could do. They are heroes. Let's treat them that way.

The Other Side

We're on the other side...we've made it through the really icky part.  As I write this, I'm sitting on my parents front porch, feeling the breeze and being thankful that we are able to be 650 miles from home and his doctors and therapists and nurses and...!

This past year has been all sorts of things. We moved from all who we love and all that was familiar. We had a super hero baby who has made it through all sorts of odds. (And continues to do so) :) We've started experiencing the "firsts" that new parents experience the day they come home from the hospital with a healthy baby that we just took a little longer to get to.  Babbling, clapping, sitting up, going out to eat, swimming, vacations, and so many more! We still don't have it "easy", but it's getting there.  When I look at the feeding tube on his face, it's still a source of frustration and continued hard work. However, when I think about the big picture, I can handle some feeding problems if it means we're at home dealing with these issues, rather than being in the hospital for bigger reasons.

We're so glad to be where we're at. It felt like we would never get here. Some days, it feels like we'll never have a baby who eats by mouth, but I know we'll get over this hurdle too. Eventually. For now, we're grateful for the steps we're making toward our normal "non-hospital" life.

Here's some photos of our life on the other side. :)

Sitting up like a big boy!

First airplane ride! Handled it like a champ!

First swim!

Helping Mom do some grocery shopping :)

Going out to eat!

Clapping! Yay!

Standing!!

These things may seem trivial, but we try not to take the little things for granted around here.  He's gone through a lot to get to these milestones! Hooray for normal life on the "other side"!

Easter Photos 2014

We took our little man out for some Easter photos. We got him all dressed in his cute little Easter outfit, pulled his feeding tube, found a shady area, and we were off!  He did a great job and we are thrilled with the results! :)

Life. Is. Messy.

This is a picture of what I've been waking up to for the better part of 2 weeks.  Yes, that is throw-up on his chin. Yes, that is a giant poo stain on his bed. No, he did not get himself undressed. :) I was about to put this boy in the bath tub, as we've done almost every morning for 2 weeks since he wakes up as a complete mess!  Good news? He smells really good for about 2 hours until he throws up again.

It can be easy to think that our lives are all flowers and rainbows now that we're out of the hospital, but it's not.  We still have frustrating days.  Feeding has been a constant struggle.  This boy has the most sensitive stomach of anyone I know and he seems like a complicated puzzle that we're trying to figure out.  Last week, I spent one morning being incredibly frustrated by him because he refused to eat anything by mouth.  Even our speech therapist was stumped.  He knows what to do, he just won't it.  Stubborn.  Ya know what he did that afternoon? He grabbed his foot for the first time ever and stuck his foot in his mouth!  Suddenly, things seemed better.  We've been trying to get him notice his feet for months!

Even though these past couple of weeks have been messy and frustrating, I can't help but look at my sweet little boy and realize that he's just doing the best he can.  He's gotta be one of the happiest babies ever!  This picture is of him right after he threw up and we got his wet clothes off of him and he's smiling away!

Our life is messy.  It's chaotic. But I try to enjoy every second.  Last night, I was reminded of God's grace that He's shown through all of this.  We were able to go to church for one of the first time's since Josiah was born and it was great to be surrounded by a group of believers and to hear God's word.  Our pastor shared Romans 8:18, which stuck with me.

"I consider that our present sufferings are not worth comparing with the glory that will be revealed in us."

There will be a day that there will be no more suffering. No more pain. No more tears.  Those days won't come on this earth. Those days will be in eternity with our creator. Oh, how I look forward to those days, even more so now that we've felt suffering.  But as one of my fellow heart mom's said, we didn't go through all of this suffering and watch our boys through all of this pain to live our lives in fear.  We did it so we can live our lives.  Messy or clean. Chaotic or simple. Finding joy.

Another Round

We have been gearing up for this surgery since the day we found out about Josiah's heart condition. That was when I was 23 weeks pregnant. It seemed like an eternity until we got to this point. We had so much to conquer before we got here. As I sit and write this, we are very much in the thick of things. Sitting in the ICU, looking at wires, IV pumps, monitors, syringes, drainage tubes, scars; it's a relief to know that we're past this surgery.

We spent 3 months at home and we've been working so hard to reach milestones, only to have them squashed by this fast approaching day.  Although we'll have some more work to do now, there isn't another fast approaching surgery that looms ahead of us. After this, we get to go home...stay home...for at least a year (Lord willing)! When we go home now, we can reach milestones and go to the next. I don't have to wonder how long it will take him to roll over again after open heart surgery. I won't have to wonder if he'll have an aversion to things in his mouth since he won't have another breathing tube. We'll get to feel like every success gets to remain a success because we won't have to work to succeed at that skill again. Sweet relief!

Relief was the feeling that overwhelmed me when we were told that his surgery had finished. Calm. We made it to this day that has been greatly anticipated. He did it. But funny how those feelings can quickly turn to fear, anxiety, and panic. I knew that recovery wouldn't be easy. I knew! But I hoped for the ease that I've heard about with other kids. Our little man marches to the beat of his own drum. He doesn't do well with anesthesia. He takes a while for his tummy to wake up and allow food in again. He just had open heart surgery! He deserves to be cranky! But his cranky turns into oxygen saturations dropping and arching his back and flailing his arms and kicking his legs. Agh! While being mad at one point, he held his breath for so long that he passed out. Talk about giving your mother a heart attack! Geez!

We are now headed into night #2 and I feel hopeful that we've taken a turn for the better. His bleeding has stopped. He isn't waking up in thrashing anger. He's sleeping. He's calm. How has this all been in a span of less than 48 hours? Looking back, it will all seem like a horrible dream and a blur of a reality.  But for today, I continue to pray and ask The Lord to control this recovery process and heal my sweet little boy.

In The Middle

The middle of any journey always seems the hardest. The longest. Overwhelming.

            "The middle of any challenging journey can be the most critical point.  Many of us may not be where we were, but we're not yet where we want to go. Perhaps the terrible bondage of Egypt is behind us, but the land of promise seems remote.

            The longer we wander in the wilderness between Egypt and the Promised Land, the greater the chance that we'll return to captivity. The pull of familiar comforts and habits can feel overpowering, particularly against uncertainty of Canaan's unknowns. But as we persevere, God is faithful to continually give us the extra push of motivation to press on." Beth Moore

When you start out on a journey, the beginning can be exciting, scary, or unknown.  Our journey was all of those things.  We had no idea the complexity of Josiah's condition and each day felt like we were just trying to keep our heads above water.  We were just trying to survive.  Now that we've been home for a couple of months, we've found routine.  We follow the steps of our Safe at Home program.  We talk with Nurse Practitioners, Cardiologists, and nurses weekly, if not more. 

We're in the middle of it all. It wasn't until we were sitting in the waiting room, speaking with one of Josiah's cardiologists about his cath procedure, that it dawned on me.  This is forever.  The complexity of this condition doesn't end simply because we're not in the hospital anymore.  This is his life; our life.  As his doctor was explaining what he did in the procedure, my mind couldn't help but think; "Wow, is this really what we do now?  We listen to doctors explain coiling and ballooning and...?  I hear parts of the heart that I never thought I'd know, and I still have a hard time trying to remember them all. I never imagined this to be my life a year ago."

Don't get me wrong.  I wouldn't trade a single moment that we've had with our sweet little boy.  I will forever cherish him for the person he is, regardless of what his heart looks like.  Would I love to fix this for him? Absolutely!  But I am eternally grateful to those who know how to give him life. He's a miracle.

This road that we've been traveling is long.  It's hard to express to those who don't live it, day to day.  There is constant worry.  There is constant stress.  There are days that I just feel raw. There are many days that I want to my parents house over my "lunch break" and just sit on their couch and cry.  I want to sit at the kitchen table and chat with my mom as she busily gets dinner ready for the evening, before everyone gets home and she starts teaching piano. I want something familiar and comforting to make this better. Like the quote above, there is so much unknown in front of us, that the pull of familiar is so tempting.  Nothing about this journey has been familiar.  Everything has been new. Challenging.

We moved here for a job.  We ended up getting excellent care for Sy. Next week is his Glenn surgery. Next week marks the next step of this journey.  We still have a long road.  I learned from the cath that another procedure or surgery is like hitting a giant reset button on everything we've worked toward.   It doesn't mean that we've reached the Promised Land yet, but God is faithful to continually give us the extra push of motivation to press on. And press on, we shall.