Nothing Like Family

I come from a close-knit family; really, we’re kind of freaks. My mom and dad have been married for 30 years, and my sister and I have been best friends since I was 14 and realized how awesome having a little sister was. After I went through my emotional teenager stage (dear GOD, I hope Sydney doesn’t take after me in that area; I was a mess), and moved out of the house at 19 (and, ahem, got married), both mom and dad became friends and confidants.

It’s an “all for one, and one for all” kind of operation, and it has been from the beginning.

But, now? This is our first real crisis as a family. We have been lucky not to have had any major medical emergencies, or any other major life events that threw a big wrench in the plans.

This is the first. This, being here, with a sick baby, and not knowing what’s going to happen.

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He’s Mine

Having a son was never in my playbook; I was destined to be a mom of daughters, and the universe complied at first, giving me Sydney, in all her defiant glory.

Then, when they told me I was having a son, for a split second I was disappointed. All my dreams of Sydney enjoying that sister bond, that I share with my own, vanished. A boy. He was a boy. What do I do with a boy?

Then, he arrived. And I more than loved him. He is perfect, even through all of the medical mumbo jumbo he has had to deal with; he’s flawless.

And, it’s not that there’s “something about little boys.” No. That’s not it. There’s something about MY little boy. His deep brown eyes that search mine, even at 4-weeks-old; those are soulful eyes.

His sweet, small little hand, and his unblinking eye will deter some people from seeing those gorgeous peepers. They will prompt stares. They will bring whispers. He will be forced to confront insecure people who have nothing better to do but make fun of others, and his father and I will have to teach him that those people are sad. They are the ones to feel sorry for, and not allow him to feel sorry for himself.

We have to teach him that things he will see as negatives about his body will actually ensure that he is only surrounded by people who truly love and value him for who he is.

I imagine he will be reserved, but strong. Confident, but contained. The kind of man you can trust with something so important, like your heart– just like his daddy. I believe he will be friendly, loyal, and kind to everyone, one of those people you can’t help but be drawn towards.

Only the most special people will gain access to his life, and his world. People will have to earn the title “friend,” and will remain so for a lifetime.

When he brings home the love of his life, we will know that it’s real.

I would be lying if I said I wish he didn’t have to face these hurdles. I hate that he will have to learn how mean people can be, and how so few people are truly accepting.

But, it wouldn’t be Jackson. His little hand is a part of him, and his eye, if it remains that way, is as well. That is the son I was given, and THAT is the son I want.

No trades or take-backs; this little boy is mine, and I wouldn’t have him any other way.

Date Offer Rescinded

False alarm. All those wonderful recovery items that I listed before that I planned on witnessing after his surgery Friday will have to wait.

He got bumped. Continue reading

Mark It On Your Calendar

We have a date.

This date is better than your average, run-of-the-mill, dinner and a movie date. This is better than a wedding date.

This is a date for surgery.
HOLY COW!

For over two weeks we have been in ICU limbo, where he is too stable for surgery, but too unstable to go home. So, we have sat here, day after day, asking the doctors: when? When? WHEN?! Continue reading

I Used to Love I-30W

When I was little, and my mom would take I-30W from I-35W, I would immediately feel a shadow of dread fall over me. That route always meant we were headed to my pediatrician’s office, which is where my current anxiety over doctors and white lab coats in general originated.

But, as I got older, and needed less and less trips to the doctor (either I was a sickly little kid, or had a paranoid mother, one of the two!), taking that specific highway became less terrifying. Instead of meaning doctors and examinations, it meant the zoo, shopping, book browsing (RIP, University St. Barnes & Noble), and, later on, trips to the Apple store.

But… we’ve now come full circle. I’m scared again. Continue reading

Thank Goodness For the Military

It’s Memorial Day weekend, and it’s not something we’ve ever traditionally celebrated, even as a military family. We always watch the President speak, and we enjoy watching the military documentaries on the history channel, but we don’t barbecue or have a big get-together. As a fairly introverted family, we acknowledge it, and move on. Continue reading

Don’t Ask Questions

Don’t ask questions in a NICU waiting room. Especially to those wearing the super-special wristband that screams “shackled to the hospital.” Especially not to a mom with tears in her eyes, and exhaustion on her face.

Dear Proud New Grandmother,

Hi. Congratulations on your twin granddaughters. I’m sure they are the apples of your eye, and the sweetest, most precious babies you have ever laid eyes on. I’m sure your daughter, or daughter-in-law gave birth to them a few weeks early, and they need some love and care in the NICU for a few days or weeks while they grow just a wee bit more. It’s a special time; bask in it.

But. Don’t ask me, a complete stranger, whose appearance suggests (no, demands) that I have not taken a shower today, if I’m a “NICU mom.” THEN, don’t inform me that you could tell because of my tired look. And, your final question is exactly why you don’t ask questions in the NICU: how many weeks early was my baby?

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I Can Be Mean

This is a place meant for children– sick children. The sickest children. There aren’t colds and sniffles and chicken pox in these rooms, there are diseases and cancer and babies in need of surgery. There is no priority level, because they are ALL top priority, as every parent will tell you.

And, as doctors in a hospital meant only for the sickest of children, their level of care should be second to none. They should be on top of things. They should be seeing around corners the parents haven’t even thought of, obviously, because the doctors are the ones with the medical degrees.

It should not fall to the parents to ask for their child, who has been diagnosed with a large hole in their heart, for the cardiologist to come back, after not seeing them for a week. It should not fall to the parents, who have been mentioning the infection in their child’s eye for the 10 days, to finally call for the on-call doctor to examine it, who orders moisturizing drops and an MRI to look for nerve damage.

It should NOT. FALL. TO. US.

It’s a running joke in my family that I’m the “nice” one, and once, in a conversation about this attribute of mine, I apparently said, very pitifully, “I can be mean!” I’ve smiled sheepishly every time this is brought up, but now, I’m ashamed. Continue reading

And, the Clock Sits Still

Time doesn’t exist in the NICU, and yet, we live and breath by the clock.

Feedings, diaper changes and assessments every three hours, on the dot. Feedings by mouth only if his breaths are ordained by the almighty minute-mark. Meds administered every 12 hours. Milk bank drops off the daily breast milk supply every 24 hours.

The clock rules all, but time doesn’t matter. Without the sunlight pouring in the windows, or the glow of the parking garage at night, the time of day is completely arbitrary. It’s noon? Great. It changes nothing. 3 AM? No one cares.

All that matters is what has changed in that window of 180 minutes since the last check.

This is life in the NICU; life from inside the walls of the plastic crib.

The Journey Here

I found out I was, shockingly, pregnant in August of 2013. After many months of trying for Miss Sydney, the idea that I was — SURPRISE! — pregnant, was mind blowing.

But, cool, let’s roll with it!

At 20 weeks, they told me Jackson had (testicles, for one thing, since I was told he was a girl three weeks prior!) only one functioning kidney. His left kidney is completely cystic, and quite large. Every month I would make the trip to Fort Worth from Wichita Falls for the expert ultrasound techs to tell me, “Kidney is still doing good, everything looks great!”

Fantastic!

Fast forward to April 28, 2014.

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