IT FINALLY HAPPENED!

It happened. It actually happened.
Jackson had heart surgery.

It was actually done on Monday, and lemme tell ya, Sunday night and Monday morning were probably the lowest points of my life. When they stopped in the hallway on the way to the OR, and said, “Okay, mom and dad, give him kisses and tell him you’ll see him soon,” I thought I was going to faint.

The waiting was agonizing, and felt like it took forever, even though, in actuality, the surgery was much shorter than they had told us to expect. The surgeon closed both holes (his massive one, as well as the small one that lots of kids are born with– he figured, why not?).

He was taken to the CICU, and when we saw him, he was very scary. He had a chest tube in his chest cavity that came out of his body to drain the blood from around the incision of his heart. He looked… painful.

But, wow, what a difference 48 hours makes! His arterial and central lines are gone, he is off all of his cardiac medicine drips, and only on pain meds as needed.

For heaven’s sake, he’s not even fussy! They have a TV over his head (because the Cardiac ICU takes care of kids up to age 20), and he is mesmerized by this kaleidoscope video. He’s on a little trip when he has his Lortab while he watches the spinning colors, ha!

They have already put in a transfer for him to go back to the NICU, and THANK GOODNESS. Not that he’s not getting great care from the CICU nurses and doctors, it’s just a lot scarier over here. I prefer the comfort and familiarity of the NICU.

But, it looks like he is doing really, really well, so our stay in the NICU might be short! I’m so optimistic. His breathing is now consistently in the 40s, which is actually normal, for once.

He’s our little fighter. His daddy and I are so proud!

Thank you, everyone for all of your support. Keep thinking about him, he still needs to heal!

A Stranger Holds My Baby’s Heart In His Hands

I’m sitting in a tiny waiting room, with gray walls, and uncomfortable chairs. There’s a coffee machine that dispenses what can barely be called the drink it supposedly supplies, and there’s a television permanently set on the Fox News Channel. That’s not unusual; this is Texas, after all. There is also a single, black landline phone sitting on a rickety end table.

What waiting room am I in? Is it the DMV? Am I renewing my license? Did I lose my social security card?

No. It’s the cardiovascular surgery waiting room at a children’s hospital. That black phone will ring every 30 minutes, and a nurse will give me an update on my 3-month-old son, who is lying on an operating table with his chest open, his heart completely exposed, waiting for what I can only hope is an extension of some deity to fix the holes that have compromised his quality of life from day one.
Continue Reading

It Doesn’t Matter

Everyone goes into their pregnancy thinking, “I’m going to have a healthy baby.” Especially if it’s their first; that’s the default mindset.

We like to think we’re worried about the baby’s development, which is why most women will say, “Oh, I don’t care, as long as it’s healthy!” when asked what sex they prefer, when that’s actually just a politically correct way of avoiding the question, because we all know there is usually a preference in the back of our minds.

It’s just what you say. You say, “As long as it’s healthy, I’m happy with a boy or a girl.”

But… what if it isn’t healthy? Then what? Give it back? Ask for a refund?

No. Not an option.

You just do it. Whatever it is. You do it. You sit at the hospital. You let surgeons cut them open. You learn new ways of living. You learn new ways of becoming normal. You learn about medical technologies you’d never heard of, or thought of, and certainly never envisioned being used on your child. Your mindset was in default; your child was going to be healthy.

Well, it wasn’t. So, what are you going to do now?

IT. We’re gonna suck it up, and do it. For them. Because they are teeny, tiny babies who didn’t ask to be born, and didn’t ask to need medical intervention.

So, it really doesn’t matter. It doesn’t matter if it’s a healthy girl, or a healthy boy, or an unhealthy girl, or unhealthy boy. The new answer should be, “It doesn’t matter; it’s ours, and we already love it.”

We love you, Jackson. We’ll do whatever IT takes. We already are.

Happy Birthday, Mom

The last two and a half months have been a nightmare for me, and has changed me in ways I probably haven’t even realized yet.

The only person that has kept me from completely collapsing under the weight of the stress is my mother.

Since I moved out of her house, she has always been a friend, and leaving her, even knowing I’ll be back to visit in two weeks, made me tear up.

On May 11, my world was turned upside down, and she has been there for me ever since, using all her strength to make things right. She has offered her assistance in any way she could, and became a surrogate mother to Sydney when I couldn’t be there.

She stays at the hospital with Jackson so Justin and I can get a break and try to remain a family, and she also takes care of Sydney like her own, as to minimize the amount of trauma our little girl experiences.

I would be incoherent at this point from the stress, and it’s because of the relief she brings me, along with my dad, that I’m not in a fetal position 24 hours a day.

I couldn’t do this without her.

Happy birthday mom, as you sit at the hospital with Jackson. I love you so much, there are barely words to describe it. Thank you for everything you do, and for loving me so much.

I am beyond lucky to call you “mom.”

Ssshhhhh…

ETA: Scratch all of this. It seems we have been bumped to Monday. I have now words. That’s not true, I’m a Communications major, I have lots of words. I just don’t have any nice words. So. There ya go.

—————————————————–

I’ve been a little quiet. It hasn’t been too eventful around here, we’re just trying to keep things “status quo.”

You know, for the surgery. The heart surgery. The heart surgery that’s happening on Friday.

He’s been on the schedule for almost two weeks. We haven’t been bumped yet, and we are less than 48 hours from the event.

I am slowly but surely turning into a basket case. I can’t even think about Friday without dissolving into a puddle of tears.

So… I’m not. Thinking about it, that is.

I’m thinking about puppies instead. 20140723-224318-81798835.jpg

All the Difference

I’ve complained a lot about the lack of communication between doctors in this hospital, and the way we were seemingly pushed to the side until Justin and I stood together and figuratively shouted, “HELLO!” at the doctors.

I’ve even complained about a few of the doctors themselves, wondering why the heck they went into a profession knowing they would be working with children, and terrified/anxious/needy parents, who would need a lot of reassuring, hand-holding and patience, when they had none of those things to offer.

But, there is someone who can make everything seem like it’s going to be okay, even when you don’t really believe it: a great nurse.

This hospital, again, is supposedly the king of the children’s hospitals. Nurses and doctors come from all over the country, and the world, to work right here, right where my son currently lives. They’re all proficient and accurate in the technical sense.

But, they’re not all awesome.

This is day 68 in the NICU for Jackson, and he has two nurses per day– day shift and night shift. Yes, we do sometimes have the same nurse, and, now that he has been here for so long, he has primary nurses: nurses that have asked to be his nurse whenever they are working. But, we still see a lot of different faces.

And, the difference between a tolerable day in the hospital, and one that actually allows me to enjoy my son during this obnoxious time in our lives is a great nurse.

Someone that doesn’t just help give your son a bath– they add the oxygen tube to the water and turn it into his own jacuzzi spa. A nurse that delights in seeing how big he has gotten since he last saw him a few days ago, and rejoices with you when you realize he’s gone almost 24 hours without a reflux episode.

Someone who will stand in your room and talk through your fears about his upcoming surgery, and offers advice on what to expect– even the scary stuff you don’t want to hear, because she wants you to be prepared just in case.

A nurse that knows that sweet spot on his head that he likes to be rubbed on, and will stand there and do it long enough for him to fall asleep. Someone who remembers you have another child and remembers their name, their age, their likes and dislikes.

A nurse who, while your baby is their job, treats them like their own. You know they truly care about your child.

My husband and I plan to go out on Sunday to celebrate our wedding anniversary (wow, eight years!). Remember, we don’t leave our kids with anyone but family… but, we have a nurse, the kind I described above, who will be on shift and in charge of Jackson that night.

I trust her to look out for him while we’re gone. She’s that good.

And, she has made the NICU a better place for us.

I Hate the Pity

We are the family that other families pity.

I’ve written about this before, when we were in the neurologist’s waiting room with my, at the time, 6-month-old daughter.

The texts, the well wishes, the prayers– it’s all wonderfully sincere, as they hold their healthy children to them, silently harboring their gratitude that they are not in my shoes.

I was that parent, once upon a time. A long time ago, though, and only for a few months, before my daughter’s condition manifested itself. And, now, my son has so many things wrong, the pity from my family and friends is overwhelming.

Pity isn’t the only emotion, I know. There’s concern. And love. And genuine hope for our future.

But, if we’re all being honest, there’s a lot of pity. Thank goodness their kids can swallow liquid without needing a feeding tube. Thank goodness their kids have two functioning kidneys. Thank goodness their kids have two working, symmetrical hands.

Thank goodness their kids aren’t having open heart surgery in eight days.

It’s okay, it’s normal. I was there once, too. I’m still there, sometimes, as most of Jackson’s medical issues can be resolved by him maturing, or surgery. He could be afflicted by so much worse.

But, this is our reality, and it hurts, and it’s scary. And, I hate being the family that others pity. No one ever imagines during their pregnancy that their child will be so bad off, that instead of the happy, joyfulness that should be surrounding a new baby, pity is the dominant emotion.

I hate where we are. I hate what he has to go through. I hate being grateful for the prayers and well wishes. He needs them. We need them.

But, I wish we didn’t.

Once A Day

I have become the master at being fake. I fake a smile when people ask me how I’m doing. I fake it at the hospital when the nurses ask me questions. I shrug my shoulders and smile crookedly in an, “as good as can be expected,” way.

They ask me if I’m happy about the surgery, since the whole hospital knows how annoyed we’ve been about Jackson’s care, and this is all we’ve wanted since day one. I smile and say, “Of course, it will help so much.”

But, each day, I can feel the emotions creeping in. Dread. Fear. Anxiety. Terror. Panic. I can feel them taking over me, and I know I need to find an empty place to be: a bathroom, a running shower, my car. I need to let my body shake, and my tears fall, and my wails out.

Open heart surgery. OPEN. HEART. SURGERY. On my 2.5-month-old. Are you kidding me? Is this for real? Whose life am I living, because it’s certainly not mine? I didn’t sign up for this. I didn’t sign my son up for this. Or my daughter. Or my husband. Our family wasn’t supposed to be splintered, with Jackson at the hospital with one parent, and Sydney at home playing hot potato: being watched by one of us, or one of my parents, or my sister.

A man– a human–a flawed human, is going to cut open my precious son’s chest, and expose his heart. He will touch his heart. He will place foreign objects on it and sew it up. And, all I can do is sit in the waiting room and wait. Wait for him to be done, wait for this nightmare to be over.

All of that is what runs through my mind every day when my panic attack comes on. I have a countdown in my head that refuses to leave. It’s as if it is tacked on to the front of my brain, because it’s the last thing I think of at night, and the first thing in the morning. Today, the number is 12. Twelve days until heart surgery. Tomorrow, that number drops to 11.

Eleven days. Eleven days for my stomach ulcer to grow. Eleven days before Jackson goes under the knife yet again.

The attack eventually passes, and I can plaster my fake smile back on and act out my fake enjoyment in the world again. But it’s just the ebb and flow of the darkness, and it will take me over again, eventually.

It always does.

Passing the Time

So, yesterday was our two month anniversary of being in the NICU, which makes me want to scream and punch things. I can’t believe Jackson has spent 97% of his life in this hospital. Mind boggling. Never in a million years would I have guessed one of my babies would be going through this. By the way, if you find yourself in a prolonged NICU stay, here are my six secrets for surviving.

Plus, when you have no house to clean, no toddler to take care of, no laundry to do… you realize how much babies actually sleep. What do I do with all this empty time? I call it ’empty,’ not ‘free,’ because I can’t do what I want with it. Want to know what I have done?

I re-watched That 70s Show (well, until Eric left and they added that creepy new guy).

I caught up on Mad Men (except for the current season!).

I re-watched Arrested Development.

I watched all the New Girl episodes on Netflix.

I’m currently halfway through the second season of Orange is the New Black.

I re-read the Twilight saga.

I watched the Twilight movies out of curiosity. I wish I wouldn’t have. I respected Robert Pattinson more as Cedric Diggory.

I re-read Gone Girl in preparation for the movie.

I started reading the Maze Runner. Again. Because it’s SO SLOW. I’m sure it’s great once it gets going. But, it needs to get going.

I started this blog and have written articles for other sites.

I have perfected the art of sleeping on a plastic couch.

I have taken 100 picture of baby boy sleeping.

I have tried not to go crazy. I don’t know how I’ll make it to September.

Thank goodness he’s cute to hold, and I get to see this adorable girl every 24 hours.

20140712-140535-50735004.jpg

Bipolar Reaction

Did my dream just come true? Or my nightmare?

Open heart surgery for Jackson scheduled for July 25. Bam. He’s on the calendar.

I think I’m going to throw up while I do a happy dance at the same time.

Yay! Shit.