Just Keep Swimming

My daughter has recently gotten hooked on Finding Nemo. We watch that dang fish disobey his father, like, a billion times a day.

Nemo isn’t her favorite, though; she’s a huge Dory fan. As a matter of fact, my mom ordered her a stuffed Nemo from Amazon, and she held it in one hand, while digging in the box with the other. She looked at us, her brow all furrowed, and said, “Where’s Dory?”

Sorry, kid, a 12-inch Dory is about $60 on Amazon, and that just ain’t happenin’.

But, even as I roll my eyes every time she asks to watch “fish,” I can’t help but smile and sigh at my favorite line, which just so happens to come from Dory: “Just keep swimming.”

That is what I have had to tell myself the last few weeks, in a nutshell. Just keep swimming. Just keep going.

Jackson keeps having setback after setback. We were planning to go home tomorrow, and now, all of a sudden, they’re talking about putting him back on oxygen because he can’t regulate himself.

We’re going backwards. We’re going backwards, and it makes me tired. I don’t want to keep going; it feels like this ordeal is never going to end, and that my son will never leave that hospital. Is it too much? Is there just too much wrong that his little body can’t do it all?

But, as I think I’ve said in every single blog post since we arrived here on May 11 (my GOD, have we really been here that long?!), we will keep going, because we have to: we don’t have a choice.

Like Dory said, we’ll just keep swimming. Just keep swimming.

I just hope we spot land, soon.

Sick Babies Are Not A Plan

Disclaimer: I am an atheist.

When people learn that about me, they’re shocked, for a number of reasons:

A) I’m a mother
B) I’m a Texan
C) I’m married to a military member
D) I grew up in a loving household
E) I’m (generally) a nice person
F) I have a special-needs child

All those labels would would normally classify me as being a good, God-fearing young woman.

But, I’m not. God-fearing, that is. I’m still a good, young woman with plenty of morals, values, manners, couth, class and charm. I promise. I just don’t believe in god. Any god.

If you would like to yell at me for my views, my email can be found on the “Meet the Engels” portion of my blog. I’m not here to discuss my reasons for my beliefs, and how I arrived at them (for anyone blaming my parents, neither of them are particularly happy with my personal label either, so that’s a dead-end).

I’m not here to tell you not to pray for me, or Jackson. I love prayer. Prayer is awesome! You know why? It means people are thinking about us. I know we are on several prayer lists, and that whole congregations are rooting and praying for my son.

How can hundreds of people thinking about your child be a bad thing? It can’t–it literally can’t. So, keep doing it. And, keep telling me you are. It brightens my day, and I smile when I look at Jackson, knowing he is on so many people’s minds.

What I am here to say, though, is this:

STOP telling me this is God’s plan. It’s cruel.

As a nonbeliever, that is the worst thing you could possibly say to me. It just solidifies why I don’t believe in a higher power. Why would I want to put faith and trust in something or someone whose plan is to put my son through so much pain and suffering? Why would I worship something like that? Why is telling me this is “his” plan supposed to comfort me?

There is no plan. There is no reason. There is genetics. Science. Environmental factors. And, just plain bad luck. At some point in Jack’s development, something went wrong, and several of his organ systems got the short end of the stick. It’s no one’s fault, and it certainly wasn’t anyone’s plan.

Atheists get cancer. Christians die in freak accidents. Jews are diagnosed with rare diseases (IC, am I right, Miss Sarah? 😉 <3). Sickness doesn't discriminate. Jackson's medical issues are not some deity trying to get my attention– and, if they are? Wow. That’s pathetic. I’ll take my chances in hell.

That seems harsh, and I know it will offend people; I’m truly sorry for that. I would ask that you remember the points I made above: I’m still a good person. I just can’t bear the thought of something out there inflicting this kind of physical pain on a child, and this kind of emotional pain on his parents, and calling it a plan. It bothers me.

And, it seems the deeper we delve into the medical mystery that is Jackson, the more I hear it. I know it’s meant to be comforting, and maybe for some people it is. But, it only hurts and angers me. If there was someone physically hurting my son in front of me, I’d do my best to to stop him any way I could. I don’t understand why, because it’s religion, this suffering is supposed to have a meaning and a purpose behind it.

It doesn’t. It just is, and we’re dealing with it. Some days are better than others, and some days I don’t know how I’m going to be able to handle things another minute. But, then the moment passes, and my perspective is back.

He’s my son. I love him. I would do anything for him. And, that’s the plan– to do whatever it takes.

Really? He’s Lucky? Seriously?!

Last night, I was rocking Jack while watching Twilight (DON’T judge–I was curious), and he had fallen asleep (as most men do who are forced to listen to Robert Pattinson lie about how beautiful Kristen Stewart is, and vice-versa).

One of the many people that come in to do random things in Jackson’s room tiptoed in, and as she was leaving, she paused, turned around and said, “I don’t know how you and your husband do it, with one of y’all staying here every night. It’s amazing how many parents don’t stay, or don’t come, or even call. It’s sad. Your little guy is very lucky.”

So much ran through my mind as she left the room.

1) HOW SAD IS THAT?! I mean, really, how sad is it that she felt compelled to tell us that Jackson is lucky? That it’s great he has parents that care about him enough to make sure he’s never alone in a scary place where people poke him with needles, and strangers randomly put their hands on him to assess him? That breaks my heart to know he’s lucky. He shouldn’t be lucky. That should be the norm. It makes me want to walk around and pull all these hurting, abandoned babies out of their cribs and love all over them.

2) SHAME on these other parents. They don’t deserve to be parents. I don’t care if their baby is just slightly premature and needs a few days to stabilize before going home, you BELONG WITH YOUR BABY. Even if you’re in a wheelchair from a difficult delivery, at least drop by and snuggle them so they smell their mommy! They need to know you were there, loving them, as much as possible. Those first few weeks are essential for bonding.

3) At the very least, call, my GOD. Each day Justin and I switch out after 24 hour shifts, we give each other the run down on the kids. “Jackson had trouble keeping his oxygen up today, so watch out for that later,” or, “Sydney wouldn’t settle down for a nap, so I bet she goes to bed early tonight.” Kids change, and things happen very quickly. It’s your job as a parent to know what’s up with your kids, so you can know what they’ve been through, what works and what doesn’t… and how can you exist not knowing how your newborn handled the day?!

I know that some parents don’t have the luxury of staying with their kiddos every day of a prolonged stay in the NICU, but she implied that some of these babies basically have no one caring about their well-being. Nurses only have time to cuddle babies so much; usually, if their cries are not causing any of their vitals to drop, babies are left to cry it out. And, while I’m a proponent of CIO later on, that’s not a tactic that should be used on newborns.

Just… sad. Jackson is never, ever, EVER left alone up there. Ever. Between me, Justin, my mom, or my dad, there is always someone who loves him a great deal sitting by his crib, making sure every breath he takes is safe, and that nothing unexpected happens to him alone.

I will say, he is a very lucky boy to be incredibly loved by so many. I do agree with that. ❤

Dare to Dream

Sunday will be seven weeks we have lived in this hospital, and in this tiny room.

Will we make it to then… ?

POSSIBLY NOT.

That’s right. You read what you read, buddy.

An actual doctor came in, looked over his chart, chatted with us, and literally said the words, “I think it’s time for him to go home and grow before heart surgery.”

I almost dropped him… which would have kind of negated her words in the first place, so thankfully, that didn’t happen.

Now, we might hit the seven week milestone just because checking out of the NICU is a long drawn out process, even for kiddos less high maintenance than Jack. It’s not like a hotel, where you take a cursory glance at the closet and pray you don’t forget your phone charger on the way out.

No, there is a loooonnngg list of things that must be done. Our case manager has to set up our upcoming doctor appointments with cardiology, nephrology, GI, and his general pediatrician, who he will see frequently, even more than the average newborn.

We also have to take the CPR and car seat safety class (check!), and watch four different videos (purple crying, babies sleep on their back, general care, and caring for his g-button).

I also have to speak with someone from Jackson’s medical supply company. Since he will be going home with the button, that requires a LOT of stuff– feeding bags, tubing, extension tubes, decompression tubes, formula (which insurance PAYS FOR! Over the moon about THAT)… lots of stuff.

Plus, he’s also going home on breathing treatments, so he’ll need the mask, albuterol, and tubing for that.

He will also come home on two heart medications, and an anti-anxiety med, which keeps his breaths down.

It’s a lot, which is a major understatement. I’m overwhelmed by all the equipment he needs, and we’re not even home yet. I’m going to need some sort of organization system, perhaps a tackle box, or something scrapbookers use. I need to check out Hobby Lobby.

But, I don’t care. My children are going to be living under the same roof. My son will sleep through the night without strangers coming in his room to empty the laundry, check his equipment, write down vitals… he just gets to be with his family.

He gets to be Jackson. Not Baby Engel in A16. He’s Jackson.

My Jackson. And, he’s coming home (and, now that I’ve thoughts those words in my head, he’s probably not, ha!).

Cautiously Optimistic

I hate to even think like this. I mean, it goes against everything I’ve learned so far in our nearly SIX WEEK STAY at this hospital.

But… I’m really starting to feel kinda hopeful. Continue reading

I’m Missing It

Today, I’m angry.

Our normal schedule of switching shifts at 5 p.m. had to be altered due to us needing to attend the G-Button class today at 2. So, at 1:30, I showered, gathered my overnight bag, and prepared to walk out the front door of my mom’s house.

Just then, Sydney skipped down the hallway in her rainbow bathing suit, and her Hello Kitty sunglasses, positively giddy to be headed outside to the pool with Grannie. She waved, and said, “Bye, mommy!”

This. Is. Not. Fair.

She is only 2 once. She will have this summer, at this exact age, ONCE. I will never, ever get this day back with her. I lost it forever.

I want my summer back with my daughter. I’m missing it. She’s missing it.

Not only that, but Jackson is missing it, too. He’s in here, away from the sunlight, away from fresh air, away from his sister. He’s missing time spent on his tummy, looking around, absorbing the world. I truly believe he’s grasped the concept of these ugly, pale walls. Time for some trees and sunshine!

An entire season is passing us by while we sit in this square box and listen to the doctors find reason after reason to prolong our stay.

I just want out. I want to be a mom to both of my kids at the same time, and to finally feel normal again. I don’t care if we have to build a hospital in his room, just let us go home!

It’s What Moms Do

Outwardly, I’m a nice person. To the cashier at the grocery store, to the guy handing me my delicious Jack in the Box tacos: I’m kind. I smile graciously and say thank you. To doctors, police officers, teachers: I’m respectful. This is all true even if I am having the worst day of my life.

Even to most of my family members, I will internalize most of my anger and frustrations and force a pleasant demeanor. I was raised to be polite, and utilize manners in all situations, and I do that… to a fault, actually.

… But, there is one major exception: my mother.

Moms get the full brunt of your most hideous emotions. They are hit with sarcasm, surly looks, sighs of annoyance, and hateful tones. When you’re in a bad mood, they know it. Even if the source of it has nothing to do with them, they’re constantly in the danger zone.

Why? Because they love you.

Moms love you through everything.

They love you when you get your first period on Thanksgiving and are scared and bitchy at the same time.

They love you through your first break-up when you’re screaming at them to give you back your phone so you can make a terrible choice to call back the idiot who doesn’t deserve you.

They love you through those teenage years when you would rather die than be seen with them.

They love you through those moments in the dressing room when you are pissed off at the body in the mirror and dissolve into angry tears.

They love you through your first pregnancy, when even someone breathing wrong makes you want to smack them.

They love you when you are at your wits end with the doctors supposedly caring for your newborn, and you end up crying and ranting at them, as if it’s their fault.

Moms are the ones who are always there, and yet they are put through the ringer undeservingly. Why?

Because they will always be there.

I know my mom will be there for me after my cranky mood has passed. I know she’ll be looking for my smile after whatever storm I’ve been through has broken up. I know that no matter how much I push her away, she’ll always be there, waiting for me to let her back in.

It’s because she loves me the most that I let out my frustrations on her. I know she won’t hold them against me. She’s not keeping track; she’s not waiting to use them against me down the road. She patiently waits for me to become myself again.

That’s what moms do.

Still Waiting

Where are we? That’s a good question.
What’s the next step? Also a good question.

I wish like hell I had an answer.

Let’s take his list of anomalies one by one and run through them, shall we?

Large hole (VSD) in his heart

As of now, the doctors do not believe this is causing his rapid breathing, even though that’s what the doctors told us for the first three weeks of his stay. They plan on doing another echocardiogram soon, but they say the flow of extra blood into his lungs is restrictive, and that apparently is a good sign.

Bottom line: No heart surgery in the near future.

His left cystic kidney

The right kidney is doing a bang up job taking care of all its kidney responsibilities, and so no one is even concerned about it. Aside from checking their function once a week with a blood test, the nephrologist hasn’t even come back since the first week.

Way to go, one part of his body is doing what it should!

His little hand (or his Nemo fin)

Since it doesn’t bother him, and he has full range of motion with both his arm and wrist, and his fingers all move (and try to rip out his oxygen tube just as often as his good hand), they are not concerned with it.

Woohoo!

His hernia

Well, it turns out it wasn’t a hernia. It was hernia-like, and I have no clue what that means. Whatever it was, they fixed it. He still has tape and gauze covering his stitches, but it’s healing well.

This can actually be crossed off the list now!

Aspirating his feeds

Jackson is officially a non-bottle fed baby. No matter how thick they made his formula, he was inhaling it, so that’s where the button came in. I haven’t personally administered a feed using it, but I’ve watched the nurses closely. I’ll start soon. It’s not as obtrusive on his little body as I thought it would be. I’m not happy it has to be there, but we are going to work really hard with speech therapy and working on his swallow. He will have a swallow study done every six weeks, and hopefully in the next 4-6 months, we can remove it.

His non-closing eye

They don’t think his 7th nerve is completely missing; rather, they think it may be small or immature. This means that he will probably master the blinking and closing feature in the future. It already seems to be closing more than those first few weeks. Fingers crossed!

So, that just leaves us with his fast breathing. We still don’t know why he’s doing it. We, as a family, speculate it IS the VSD, but we can’t get any doctors to agree with us.

Right now, he is currently on a small amount of oxygen, and it sounds like, barring any outside complications, that they would like to send him home next week. He would need to be off the oxygen for that, but no one seems to think that will be difficult.

The doctors are comfortable sending him home breathing fast, while Justin and I are 100% not. Not this high, when he’s constantly been in the 90-100s. If he hangs in the 50-70s, that’s one thing. Not the 100s. We took him to the ER breathing 128, and we’re going to take him home breathing the same way? How does that make sense?

Right now, it’s kind of a stalemate between us and the doctors. And, it’s the weekend, so of course nothing happens; everyone just tries to maintain the status quo of their patients until the real doctors come back during the week.

We’re still waiting. And waiting. And waiting.

I’ve Lost My Optimism

I’m a glass-half-full kind of girl. I tend to prepare myself for the rosiest of outcomes, and truly believe everything will turn out okay in the end.

My husband, on the flip side, is a “realist.” Well, that’s what he calls himself. I see him as a pessimist, but that’s because he doesn’t try to delude himself into thinking everything will work itself out. He looks at the facts, and doesn’t jump to the best possible outcome, like I do. Or did. It’s one of those things that helps us work so well as a couple.

But, I’m not that girl anymore. After a month of letdowns, of fear, of vague answers, of being ignored, of not being taken seriously, of setback after setback… I’m done. There is no more optimism left in me. I’m at the end of my rope.

The only things keeping me from crawling under the covers and letting the darkness take me over are Sydney and Jackson. Sydney needs her mom to be as normal as possible, so that her childhood isn’t scarred by this traumatic event. Luckily, it hasn’t so far. And, Jackson… well, Jackson needs to know his mom is by his side. Even if he doesn’t consciously know it, somewhere in his little brain, he registers my touch and my smell. He knows I’m here.

So, for those two reasons, I slap a smile on my face, and I keep my spot next to his crib at the hospital nice and warm. They need me. And, I need them, too.

I’m going to try to keep it up; I really am. Each day I get more worn down, especially as we discover more things about Jackson, and the longer I see him suffer. It’s physically hurting me.

And, this is not “god’s plan.” I’m not religious, but hearing that honestly causes me even more pain. To think that someone truly believes an almighty being is inflicting this kind of pain and suffering on a tiny child is beyond me, and I don’t see how it could possibly bring anyone comfort. Prayers are awesome and appreciated, but, not the “plan” stuff. Please.

I hope I find my glass half full again, soon. I hate looking at the world so negatively.

❤ I love you, Jackson.

One Step Closer

The day Sydney was born will be one of those days I relive in my mind over and over. Everything about her birth was perfect: the room, my nurses, the epidural, how fast she popped out, my recovery period… not to mention the overwhelming adoration and joy I felt over holding her in my arms and marveling at this perfect creature that I made. Even Justin being deployed couldn’t ruin it– we knew he would be home soon, and we still reveled in the feeling of completeness for our family, even 10,000 miles apart.

Now.

Take that rosy picture, do a complete 180 degree turn, and that’s what it felt like the day I had Jackson. Nothing was right. Everything felt off center.

It sounds insane, but I honestly had this dark cloud hanging over me the whole time. I tried to push it away, tried to look happy and force myself to enjoy the day. I was supposed to be having my second child, I scolded myself. Smile, dammit!

Call it mother’s intuition (which I firmly, and 100% believe in), call it whatever you want– I just knew something was wrong.

And, it was. It has been. It’s been all wrong. All of it. Every moment of his short little life has felt wrong, off, nightmare-ish.

Until today!

Today, even though I was a complete anxiety-riddled mess last night, and even worse this morning in the waiting room, today he is one step closer to being the Jackson he is supposed to be.

The Jackson who doesn’t have his intestines poking between his abdominal walls. The Jackson who doesn’t breath at an alarming rate. The Jackson who doesn’t have a massive hole in his heart.

No, we’re one step closer to the real thing. My little Jack with his sweet little hand, and his one kick-ass kidney. Those are the only permanent things he is supposed to have.

The circumstances surrounding his birth were wrong, and the things he has had to endure are wrong. HE is perfect, though, and I can’t wait for the first day we spend together outside the walls of this hospital.

It’s gonna be awesome.