Friday, September 25, 2009

The Fear

Hello boys and girls... I don't have much to report this week... Everything is status quo, with Big Brother still trying to learn to walk, but not quite there yet, and Little Brother trying to figure out how he can ingest massive quantities of milk and stink up more square footage. Oh, Big Brother is working on that second task, too. Diamonds are NOT this girl's best friend... The Diaper Genie is!

So there is a story I have been wanting to get out for a while, but my words seem to fail me on this one. I'm going to give it a shot tonight, though...

Every parent-to-be, I think, experiences The Fear. That worry, that "what if" that maybe you don't talk about, but it's there. Every parent dreams of their child becoming the President, or a doctor, or a sports legend. No parent hopes for a child who is disabled or sick. In fact, most parents will tell you that is their biggest fear.

Why is that? Is it a fear of what the child will face? Or is it a fear of our own weakness?

With improvements in prenatal testing, parents are now able to know with great certainty if their children will be born with certain syndromes or birth defects. Many parents opt to abort their pregnancies if there are foreseeable issues, and just "start fresh" with a new child who might be okay. I can understand that reasoning. When my husband and I first became pregnant with the twins, we both had The Fear, and we had to wonder... "What would we do?"

Don't get me wrong, we're both pro-life, but still we wondered...

So we opted out of prenatal testing... And we dreamed of our children being presidents or doctors or sports legends... And lived with The Fear.

I asked earlier why parents fear. Our fear was selfish. We weren't worried about our children, we were worried about us. Were we strong enough? Could we handle it? Would it inconvenience us if we had a child that was different? Would it embarrass us?

And then Aubrie was born... Way too early, with a brain bleed she would never fully heal from if she lived. And you know what? All of a sudden, it didn't matter anymore.

The Fear disappeared. We just wanted her to live. She was ours, and she was perfect.

Over our months in the NICU with Daxton, we were faced several times with potentially life-altering diagnoses. I admit, sometimes The Fear crept back, but this time it was not for us. Would Dax always live in pain? How significant will his disabilities be? Will other kids make fun of him? Will he even live long enough for us to know?

The night before Dax was to discharge, and two days after we discovered we were pregnant again, a neurologist gave us a devastating diagnosis. The MRI results pointed towards a genetic syndrome that would render Dax dependent on others for the rest of his life, and there was a 25% chance our new baby would have the same disorder. He told us to take the night and think long and hard about whether we wanted to abort the new baby after genetic testing was complete.

We were heartbroken.

When we lost Aubrie, and when Dax was so sick, we discovered a strength we never knew we had. We were blessed beyond measure. But could we possibly go through it again? Could we handle it? There's no way...

But then it hit us.

If someone had told us at the beginning of our first pregnancy that our twins would be born months too early, that our daughter would die, and that our son would spend eight months in the hospital clinging to life... That our son would have more health problems than we could fathom... That he would come home on oxygen and monitors and feeding pumps... What would we have done?

But, what would we have ever done without them? Our broken, imperfect little babies had taught us more about living, and loving, and fighting, than either of us had ever learned before. Our broken, imperfect little babies had shown us what real happiness was all about. Our broken, imperfect little babies had taught us how to treasure the small miracles in life, and how to seek the impossible even when it's completely out of reach.

And all of a sudden we realized there was absolutely nothing to fear... And with the birth of Tyler, we were able to witness another sort of miracle entirely.

So does God give us children so that we can teach them, or does He give us children so they can teach us? I'm not entirely sure. What I do know is that none of our children are perfect. Had you known in the beginning that your child would one day be anything less than perfect, or grow into a less than perfect adult, what would you have done? And what would you have missed out on?

I, for one, am incredibly thankful to not know.

Saturday, September 19, 2009


Hi all,

I want you to picture for a moment a present or former 2-year old who means a lot to you. The chubby cheeks and giggles and innocence, running around with food all over their faces and getting into everything. Two is such a fun, amazing age.

Now picture that same 2-year old, still happy and giggling, but unable to run or play like the other kids do. A child who is locked inside a body that won't do what it's supposed to. What would you do to help that child that you love so much?

I met Jennifer and Liam soon after the doctors discovered Dax was missing his cerebellum. Liam was born at 24 weeks on the dot, and is a twin to Brady, who, like Aubrie, was not able to survive outside the womb. Liam, like Dax, is missing his cerebellum, but he also has been diagnosed with cerebral palsy and has significant delays with his motor development. He's a very bright, loving boy with a wonderful, supportive family who is trying everything they can to give Liam a long, happy, normal life.

So, here's where you come in. Liam's family is trying to raise some funds right now for a therapy that insurance will not cover. It has been hard on Jennifer to reach out for help, but they've done a good deal of research on this therapy and will do whatever it takes to make sure he gets it. Please consider donating a few dollars to help.

Jennifer explains about the therapy and their needs on her blog. If nothing else, just stop in to see how stinking cute Liam is and check out their story.

Here's the link:

Thanks so much everyone!

Wednesday, September 16, 2009

Update and a soapbox

Today was my first day back at work... My boys missed me terribly, as evidenced by how they acted completely normal when I left and when I came home and all of the time in between. I know it's all a front. My boys are so thoughtful.

Me, however... Not so tough. Anyone have any old, rich uncles they're not using? I'm fresh out. I never wanted to be a stay-at-home mom until I had children. Maybe when they grow up and move away we'll be able to afford it.

I heard from the hematologist today and everything is good. She ran three tests on Ty's blood, and everything looked fine. One of his results was slightly abnormal so she wants to repeat that lab in a few months just as a precautionary measure, but she said that if there was any real problem with his platelets the results would have been very abnormal, not just slight. Big sigh of relief, and prayer of thanks.

The hematologist couldn't believe that Ty is only 6 weeks old... She kept repeating that he is very "mature" for his age. Might have something to do with Ty sitting up without assistance when she walked in. Not really that exciting when you realize he can only do it because his fat rolls hold him up, but, hey, we take what we can get.

Oh, and he can roll from his belly to his back, too. And he didn't even need months of therapy for it. (I think maybe Dax is getting all of his therapy out of the way when he's little, whereas Ty will probably end up spending most of his adult years there. Different types of therapy, yes, but in both cases I guess they can blame their mother. Lucky me.)

I was telling a friend today how fast Ty is developing, and she told me that it's an old wives' tale that babies who learn fast are a sign of another baby soon to come... A statement which I then repeated to my husband... And I'm not 100% sure, but I'm fairly positive I heard his testicles hail a cab out of town. Adios, dear friends! See you at the vasectomy!

And finally, I'm going to end this post on my soap box. I haven't climbed up in a while and it's time.

This particular irritation reared its head last week when I was hauling the demon in for his impromptu appointment to check his blood and rule out leukemia. Little known fact: I'm a tad bit high strung at times (okay, so maybe it's more of an established fact), but I was keeping positive and just ready to get some answers from the doc. I grab Ty and his things and proceed as I always do, through the back door of the pediatrician to the desk area so they can place us in an exam room to wait.

For those of you who aren't familiar, doctors will often allow the parents of medically fragile children bring their kids in through the back door to avoid them waiting in an area populated by the germy little monsters in the waiting room. This is to minimize the risk of the medically fragile child catching something that could potentially lead to hospitalization or worse. So I belong to the oh so exclusive "Back Door Mamas" club, which is not nearly as exciting as it sounds.

At any rate, I smile and walk to the desk and this nurse I have never met rudely asks me if she can help me, and I tell her who we are and who we have an appointment with... Then she asks in a very disapproving tone, "Did they tell you to come in the back door?" and I say yes, still smiling but biting my tongue. Still not satisfied, she glares at me like I'm a big fat liar and says "Why?"

My tongue became unbitten. I had several things I really wanted to say, but instead I began to fill her in on Dax's medical conditions and she had us placed in an exam room before I finished.

I get that people have jobs to do, and maybe I was the 17th person who had come in the back door that day, and the first 16 were not supposed to. I don't know. What I do know is that I would give anything to be a Front Door Mama. I'd love to have children that can go to the mall and Chuck E Cheese and the doctor's office and touch things and people and get colds and bugs and all the other things that kids do. But I don't. I have a child who absolutely can't, because a cold could land him back in the hospital for days or even weeks, and we have his brother who absolutely can't, because what he gets he could easily pass to Dax. This phase will pass, but for now and the remainder of the cold and flu season, we live in a sanitized bubble... And we can live with that... And I don't expect everyone to understand our feelings and actions. What I do, expect, however, is for medical professionals to be polite and respectful and assume that I'm doing what's right for my children without first knocking my block off. Just a thought.

So that's that. More to come later!

Saturday, September 12, 2009

I am a genius

I just had an epiphany as I was getting in the shower, and I just had to share. I have just come up with the solution to the whole teenage pregnancy issue.

Teenages are hammered with lectures on abstinence and STDs and pregnancy... And obviously it's not working.

My idea... Someone needs to make teenage girls stand naked in a 360 degree "mirror" that simulates what they'll look like post-pregnancy, 30 lbs heavier with stretch marks, cellulite, and saggy boobs. If that doesn't scare their panties back on nothing will!!!

Thursday, September 10, 2009

A little brotherly competition

Daxton has kept us busy the last year, going to this place and that. We've seen doctors for his brain, his eyes, his ears, nose, and throat, his teeth, his glands, his genes, his lungs, his heart, his boy bits, his tummy... And, the whole package. There may be more... They do all begin to run together after a while.

I honestly thought we'd met just about every specialist in Nashville at some point or another... I was just about right.

Enter a little brotherly competition.

Ty now gets to go see the blood doctor. Hmmm, never been there before.

He's been bruising really easily, like from his diaper and onesie collar. I didn't really worry about it at 1st, since, in my experience, if a baby has lungs, a heart, and most of his brain, then he's fine. Then I showed two of my nurse friends, and they freaked me out. Got in to see the ped and she is "concerned." They ruled out leukemia, and the CBC otherwise looked good, but she is "concerned" enough to want us to see the hematologist.

Really? Are you friggin kidding me?

At any rate, I've talked to some people who are way smarter than me (not that that's a very exclusive club), and the general consensus is it's probably nothing, but now I get to worry until the hematolgist tells me it's nothing.

Yay. Parenting is fun.

When do we get to start worrying about things like skinned knees and peanut allergies?

Saturday, September 5, 2009

You have a job to do.

Okay, now, as this is apparently my 100th post since I started this blogging habit, and I have successfully staved off doing housework, paperwork, paying my bills, and bathing my children so I am able to sit on my behind a few minutes and update all 4 of my readers about the ins-and-outs of our lives and what happens to be really irritating me at the moment. So now I'm making a request of you, my 4 readers. I want to know who you are (anonymous stalkers accepted), a little about yourself, and how you found my blog or what makes you keep reading it, or what you want to see more or less of. It'll just give me a little motivation for writing (other than my mother complaining that, even though I have already told her all our news on the phone, she wants to see it in written form.)

So that's your job. Please don't leave me hanging; I'm looking forward to learning about you guys!

Pics of my boys at Katie's birthday party

Daddy snuggling with the Demon... Who was especially sweet that day.

Daddy stealing kisses

The funnest part of the pool party was bouncing the booty into the water. It was great fun!

And of course, Dax's other favorite activity, hanging out with older chicks.

I'm a whiner

The NICU reunion is coming up soon, and an ungrateful mother (that would be me) was complaining to her son's nurse (that would be Beth) about how she just wants her son to be doing something fun and exciting for the reunion so we can show off. Wah, wah, wah.

The nurse gives the ungrateful mother a reproachful look, and says, "He's breathing."

Oh yeah. Crap. He is. And that is pretty awesome.

Sometimes you just need someone to smack you on the back of your head with some perspective. Thanks, Beth

Friday, September 4, 2009

Overdue updates on the boys

Okay, so I'm behind. Not just with blogging, with everything. At this point in time, I feel like, at the end of the day, I am a success if both my children are alive and the house hasn't burned down. That being said, my updates have taken the back burner... As have lots and lots of other things. Oh well, I wasn't going to win any housekeeping awards, anyway.

So, this is my plan. I have tons of things to update on, but the idea of sitting down to do one big update is a little daunting right now. Aren't you lucky? That means you'll get a few smaller updates. It's like a win-win for everybody :)

So this update is on the kiddos...

I'll start with the recent addition, which despite how tacky and terrible it is, has been labeled as "The Demon" and it has stuck. Before you go off on what a bad mother I am, consider my family history... I have a 20-year-old brother who is still referred to in some circles as "Oops." So at least it comes honest.

At any rate, The Demon has been much more angelic lately... He's eating and sleeping and feeling better and we're really starting to like him ;P I guess we'll be keeping him! We're starting to get the occasional smile out of him, too. Very sweet. He was 5 weeks old yesterday, and currently weighs in at 10 lbs 7oz and is 21 inches long. In case you're keeping score, that translates to him growing FAST. The Chunky Monkey has officially been dethroned.

And The Toddler Formerly Known as the Chunky Monkey (who is currently in search of a new nickname) is doing great. He's now weighing in at 21 lbs 3 oz, and is 28.25 inches long. We had a cardiology appointment last week that went FANTASTIC. His echocardiogram, sans supplemental O2, looked great. The cardiologist gave us the go-ahead to continue with room air trials since being off his oxygen is not making his pulmonary hypertension worse. And even though he is bigger now, she is not increasing his Viagra dosage, simply because his hypertension is so well controlled now that increasing it is unnecessary. That's HUGE. So today we had an appointment with the pulmonologist, and that appointment also went extremely well. We're continuing with our room air trials now in hopes of getting Dax off his oxygen while he's awake, but still wearing it when he sleeps. This will be extremely helpful as Dax tends to weave spiderwebs in and out of his toys with his tubing until he hangs himself with it.

As far as the brotherly love, there may be small improvements? Maybe? Could be wishful thinking. I have Dax help me pat Ty's back to burp him, but I think Dax thinks he's getting away with hitting him. Also, Dax likes to grab Ty's toes, so we play "This Little Piggy," but, again, I think he thinks he's just getting to twist his toes. Oh well, Ty doesn't seem to mind, and if he keeps growing like he is then he'll be bigger than Dax soon.

Okay, so that's the bulk of the boy updates... Will update soon about my latest medical supply company... Until then! Love you guys!