What a Difference a Year Makes

When we left the hospital with Jack almost a year ago (WOW! Has it only been a year? Feels like a lifetime ago!), we were relieved, but anxious. His heart was fixed and he was healthy enough to go home, but he was still such a big question mark. Would his one working kidney hold up? Would he ever eat by mouth? Would he push beyond the obstacles of his smaller hand and missing pec muscle to sit and walk and crawl? With so many different areas of his body being affected, did we need to worry about a mental deficit, as well? 

So many questions, and, for awhile, they haunted us. When progress didn’t come quickly, or faltered, we stressed and worried, laying in the dark at night, hands clasped under the sheets, whispering our terrifying fears. We just wanted him to be healthy and pain-free, and it wasn’t happening.

He didn’t even seem very happy; he was fussy regardless of who held him, and he had no interest in toys or books. There were days I would turn to my husband, tears in my eyes, and say, “Why is he always crying? Is he hurting? Why is he never happy?”

Well, he is now.

Coming up on the one year anniversary of our jail-break, Jack can’t stop smiling. Seriously. The kid is so happy… and LOVING! I had no idea it felt like being crowned Queen of the Universe when your 14-month-old leaned in for a kiss! My 4-year-old was a very standoff-ish baby, and didn’t really give kisses until 2. Jack is the complete opposite, he loves kisses! Afterwards, he pulls back and grins at you, like, “That was fabulous.”

In the last four months he has blossomed from a cranky, uninterested-in-the-world baby to an observant, sweet and happy kid that gives me instant joy just seeing his face. 

In the last four months he:

Learned to sit. 

Learned to crawl. 

Learned to bear weight on his legs. 

Grew five teeth. 

Started eating solids by mouth. 

Started taking a few sips of water by mouth. 

Learned to say mama specifically when he wanted me. 

Started smiling at everyone and everything. 

Plays with the millions of toys we are delighted to buy for him now that he shows an interest.

Laughs with abandon. 

Plays smart games, knowing where I hid the ball under a blanket. 

Became even more enamored with his sister. 

Discovered that crawling lets him chase after the dog, his FAVORITE pastime. 

Stole my freaking heart. 

I’m so proud of this kid. I am SO. DANG. PROUD. OF. THIS. KID. He’s gone through so much, and then he had to go through a period of adjustment and watch his father and I freak while he figured life out. I’m slowly learning that Jack is awesome, and he will do all the awesome things that kids do like play sports, fall in love, make dumb decisions and learn from them. Eventually he will do all the awesome things that grown-ups do, like go out into the world, learn new things, meet new people, and have a life. 

As long as I have his little grin in my life until the day I die, I will be a very happy woman. 

My Mini Vacation

The kids’ clothes had all been washed, folded and packed carefully away in their lime green shared suitcase. I had loaded a bag full of toys, beloved stuffed animals, and favorite spoons as well; the things kids have to have every day, but you don’t think about it until you’re taking inventory on what to send when they stay the night at grandma’s. 

I pulled one more grocery brown bag out of the cabinet; just a few odds and ends. I meticulously arranged four cans of formula at the bottom of the bag. On top, I counted eight 500 mL feeding bags, and two extension tubes which connected the bags to Jack’s gastric feeding button. I also added a roll of medical tape, and some gauze, as well as a Foley catheter. My mom already had an extra button at her house, for emergencies.
Walking down the hall, I called for my mom to meet me in the foyer, and pulled out the catheter. “Okay, if he pulls out his button, you need to put some KY Jelly on the end of this, and put it into his stoma to keep the hole from closing.” My mom looked at me wearily.


“It won’t hurt him, we just want to prevent him from needing surgery to re-insert his button if the hole closes up,” I told her. Though, I knew if it happened, she’d be a wreck, just as I would be. So far, *knock on wood*, Jack hasn’t pulled out his button in the nine months he’s had it. Mom could handle the bags, and the feeding pump, and hooking him up, and cleaning everything, but all of that requires the button to stay put.
She walked back to the guest room to get the rest of her stuff, and I rocked back on my heels beside the bag of medical supplies. Medical supplies. My 10-month-old son was going to spend a few days with his grandparents, and to do that, he needed to have a bag of medical supplies accompany him. Ridiculous. I couldn’t control the tears as they fell from my eyes, still surprised at how annoyed and angry I was at the situation. Regardless of how amazing, happy and content Jack is, the extra obstacles to meet his needs that other kids don’t have continue to prevent me from being the carefree mom I was when his sister was that small.
After triple-checking to make sure anything they could possibly need or want was packed, I waved goodbye as my mom’s SUV rolled out of sight. I walked back into my suddenly very quiet and empty house– the first time I had been without my kids in over a year. Sinking into the couch, I felt myself beginning to panic. I had the sudden urge to call my mom and demand she turn around and bring the two people I cared most for in this world back, right then!
But, I just cried. I already missed them, and was out-of-my-mind with worry about my parents handling Jackson’s needs all by themselves without me to offer assistance or takeover. However, I was looking forward to a break. A glorious break where I wasn’t clocking the time between feeds and rinsing out extension tubes, and worrying if I have time to get his last feed in, on top of all of the care and attention that comes with a 3-year-old girl (FYI: SO MUCH!).
For three days, I did whatever I wanted. I tanned. I shopped. I worked out. I got a pedicure. My husband and I actually saw a movie in the theater (Kingsman– we loved it!). We had dinner together without having to rush, or worry if the toddler was dropping food on the floor, or if Jack was going to be cranky. We hung out together at night without having to stop for bath time, or for bedtime routines, or to put toys away. We drank beers together late and talked, not having to worry that one of us needed to stay sober.

It was wonderfully freeing and absolute agony all at once. I forgot how much easier it was, and how selfish you could be when there was only your spouse to think about.
I also realized how empty my life would be without them.
At the end of my mini vacation, I pulled into my parents’ driveway after the two hour trip, and saw all four of them waiting on the porch for me, my toddler so giddy with excitement, she couldn’t keep a single part of her body still. I opened my door, and heard her sweet voice, “MOMMYMOMMYMOMMYMOMMY!” as she jumped into my arms for a hug.
It doesn’t get better than that.
Jack looked at me like he hadn’t seen me in years, and it felt amazing to have him back in my arms!

Bottom line: I need a little break every now and then, but it is beyond a shadow of a doubt that they are what make my life worth living. Oh, and my parents are completely capable of handling Jackson and anything he may need, and I need to stop being a worry-wart. Thanks, mom and dad, Justin and I more than enjoyed the alone time, and we love knowing they were in such good hands! 

We Had One Foot Out the Door…

Today is day 55 for Jackson in the hospital. That’s mind boggling. I’m seriously blown away. If someone had told me on May 11 when we arrived, that we would still be in this hospital after nearly two months, I would have laughed in their face.

Yet, here we are.

And, what’s sad, is that we were all set to go home last Sunday. My favorite nurse (hi, Stephanie, if you’re reading this!) even left us a card at the nurse’s station because she was afraid she wouldn’t see us again. Honest, we had prescriptions ordered, all of his home-health equipment delivered, follow-up appointments were made; we were on our way OUT that door. We were so excited.

And, then, Jackson started to backslide. His breathing spiked back up to consistently 100 breaths/minute. His oxygen, which we had NEVER been concerned about, started dipping into the low 80s and staying there. It was clear his heart was having to work harder than normal, as there would be beads of sweat on my sweet, 2-month-old son’s head.

What kind of 2-month-old actually sweats? The sick kind. The cardiac-compromised kind.

So, we stayed. We stayed, because we asked to stay. I’m not kidding. See my previous post about having to be an advocate for your hospitalized child, because we had to ASK to stay. They were still going to send him home.

So, since they didn’t, they presented him to the cardiac team again last Wednesday, and it was decided he needed a cardiac cath, also known as an anteriogram. This will give them a better picture of the pressure in his heart and lungs, as well as a better look at the VSD.

Unfortunately, this also means he will need to be put under general anesthesia again, and we all know how terrible he did with the ventilator last time. But, the benefits outweigh the risks. This procedure will give them valuable information about what is happening to him from a pulmonary (lungs) AND cardiac standpoint.

So, Monday, around 11 a.m., he will go down to have that done, which could take anywhere from 2-4 hours. That’s 2-4 hours of positively panic-induced waiting. Seriously, I may just chug my whole bottle of Valium (joke, joke, joke!).

To be quite honest, it feels like we’re back at square one again, and I keep looking around, wondering, “How did we get here?”