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Wednesday, October 31, 2012

Gnome Sweet Gnome

Let's be perfectly honest with each other; this blog has been a bit of a downer lately. It's also been pretty focused on Quinn, though for obvious reasons. That said, we do have 2-year-old who is mad cute and deserves a little love right now, especially since his Halloween costume is so rad. So without further ado, may I present to you, Atticus the Gnome:







                             




Monday, October 29, 2012

Positive Vibes Needed

We went in for our fetal echocardiagram today, which was an important appointment to check the structure of Quinn's heart and see if he falls into the 47% of babies with Down syndrome with a congenital heart defect. All our ultrasounds looked good in this area, so we were relatively optimistic about the exam. Granted, every appointment seems to come with some semblance of bad news, so I was a nervous wreck going in.

First, the good news: dude's heart is awesome. This was a huge relief and we couldn't have been happier. Of course, that happiness was short-lived, as we were right to expect the usual bad news. Turns out that Quinn has fluid build-up in his chest, also known as pleural effusion. There are a number of underlying causes, the most common of which is a heart defect. Since this was already ruled out, we're left to wonder if this is the result of a virus (remember the scary spots we found on his liver and stomach?), poor lymphatic drainage, or simply a manifestation of the Down syndrome.

Our OBGYN called a few hours later to explain what this means for the rest of our pregnancy. The scariest scenario is that the fluid build-up could become more widespread, resulting in a condition called hydrops. About 80% of hydrops cases are fatal, but the later in pregnancy they develop, the better the prognosis. As a result, we now go in for weekly ultrasounds to monitor the pleural effusion and ensure it doesn't get bigger. We're also now in for a long NICU stay and will have to deliver at a hospital with a neonatal surgeon, just in case. There's a very high chance that I will be induced early to treat the pleural effusion asap, but we can't do anything too soon or Quinn's lungs will be fatally underdeveloped. All in all, we're left in yet another state of hypotheticals of which we have zero control.

Wednesday, October 24, 2012

John Franklin Stephens is a Badass


You've likely come across the public outcry regarding Ann Coulter's use of the word "retard" to describe President Obama. It was top news on CNN today and, given my new-found role as special needs advocate, I immediately informed myself on this recent injustice. This lack of class is nothing new from Coulter, who frequently uses terms like "raghead" and "tent monkey" to describe those of Middle Eastern descent and even said of 9/11 widows, "these self-obsessed women seem genuinely unaware that 9-11 was an attack on our nation and acted as if the terrorist attacks happened only to them.  I've never seen people enjoying their husbands' deaths so much." Though while I was reading about this latest incident of foot-in-mouth, I found myself cursing Ann Coulter (pretty typical behavior, actually) and using words that I can only say inside my head to describe her. She is a vile woman and one I try to ignore based on her own hate-filled ignorance. But this time around, she struck too close to home.

In the midst of my frustration, I came across John Franklin Stephens' "Open Letter to Ann Coulter" and found my anger abating due to his well-written and moving response. Not only does this 30-year-old Special Olympian (who also happens to have Down syndrome) eloquently address Coulter's inappropriate statements, but he manages to do so without anger or bitterness. He manages to do so in way that makes me so proud of who my son can become. It was a powerful moment. And hell, he made Ann Coulter look even less human (didn't think it was possible) simply by being more so. As one commenter said, "Mr Stephens, it is people like you who will change the world. Responding to close-minded ignorance with a thoughtful open-hearted invitation to understand makes you a better man than most and invites others to follow suit."

My sentiments exactly...


John Franklin Stephens


Houston Update: our feelings, months later



You might remember my previous post regarding our first few months in Houston, where I shared with you the good, the bad, and the ugly of this giant metropolis. It was an honest reflection of our time here up to that point, but I feel like we’re far enough in to truly reevaluate our feelings about this city.

Things we like:

Last time I started my post with a list of the things we like about Houston. Rain, amenities, great food, proximity to family and cost of living were all celebrated, and still are. But I’d like to add a few more, as things are finally starting to look up a bit:

-Access to the best medical care in the south: This is one of those things you hope you never have to worry about, but if and when you do, you have a whole new appreciation for top-notch facilities. Even as the bills are piling up, we already feel like we’re in the best place for Quinn’s care should he need any serious interventions at birth and beyond. Even services like Early Intervention (EI) therapies and special needs education seem to be more advanced in Houston than in surrounding areas. I know that we would be a bit more nervous about Quinn’s impending arrival if we were still in Austin, even though we adored our former doctors, but people here are just better-equipped to handle any serious issues should they arise. 

-Our house and ‘hood: At first we were on the fence about this one, and there are still a lot of things we would change if we could, but as we spend more time (and less money) in West Houston, we realize that it really is the best place for us right now. First, we’re so incredibly close to work. Less time in the car means more time with my family (or in my bed). Second, I suddenly understand the appeal of suburbia. Sure, there’s not a ton of charm in strip malls and perfectly-landscaped lawns, but good god is it cheap. And we need cheap right now. We moved here to save money, and it’s nice to know we can do that and maintain a level of comfort that would be impossible to uphold if we lived in the Heights. Our house isn’t huge, but it’s perfect for us, and the playground and Hershey Trail are within walking distance. Since we’re also really close to Westpark Tollway, which takes you directly to Central Houston with no traffic or red lights in about 10 minutes, we’ve made a point of heading to the cooler parts of town every weekend. So we’re experiencing Midtown, the Heights, Montrose, and Downtown without the high cost of living or the daily commute to work. It’s the best of both worlds. We’re also very lucky that Atticus adores being in the car. 
 

Saturday, October 13, 2012

I'm Feeling Lucky...

After watching Notre Dame's very close victory against Stanford today (we're not even going to discuss Texas' dismal performance against OU), we felt like celebrating the luck of the Irish with pancakes for dinner. The unconventional time for breakfast foods takes me back to my childhood, when my mom would make pancakes or french toast for dinner as a reward for making the honor roll or winning the big game.

So I head into the kitchen with pumpkin pancakes on the brain. I will admit, I used a box mix. Don't judge. I'm pregnant and looking to do the least amount of work possible for my food lately. There were two columns of instructions on the box depending on if I wanted 6 or 12 pancakes. Honestly, I wanted somewhere in the middle. But for six pancakes I needed one egg, while twelve required two eggs...it was quite the dilemma. How the hell do you come up with 1.5 eggs? Throw half of one out? It seemed wasteful, but in the end I figured it was less wasteful than tossing 4 uneaten pancakes, so I cracked the first egg into the bowl. Enter the double-yolked egg:



Not only did it solve my baking conundrum, but apparently this occurs in 0.1% of eggs and is seen in many cultures as a sign of impending good fortune. Considering we're celebrating the luck of the Irish with exactly 9 pancakes (requiring 1.5 eggs), we've decided that it MUST be a sign that our luck is changing for the better. We could use a win, after all.

Tuesday, October 9, 2012

What to Say to Parents Struggling with a Down Syndrome Diagnosis


I love this blog for a number of reasons. First, it allows me to release some of the tension and trouble I’ve been carrying around with the whirlwind of information, doctor’s appointments, and late-night online research sessions. My emotions bounce back and forth like a yo-yo and writing helps me feel grounded. But it’s not all selfish. I also enjoy sharing this journey with you all. It’s good to know that I don’t have to have these conversations a thousand times, that you’re all getting accurate and updated information directly from me instead of as hearsay from someone else, and that so many of you have read the posts and sent your thoughts and words of support our way. It feels as if we’re not going through it alone. 

As the weeks tick by and we gain some perspective on Quinn’s diagnosis, I realize how difficult it is to be in your shoes. What do you say to someone who has just received life-altering news? How do you react? The answers aren’t simple, and I’ve actually spent a fair amount of time thinking about this myself over the past few weeks. The reality is that there’s no “right” thing to say or do…the emails and phone calls and messages are all unique and offer the support and love that we so desperately need right now. That said, I feel like an instruction manual into this situation would have been helpful, as the one thing we heard more than anything else was, “I don’t know what to say.” I wouldn’t have either. I guess I still don’t. But this won’t be the last time you’re faced with this issue. And who knows, there might be complete strangers out there who stumble across this blog hoping for instructions on how to offer support  to someone who has just learned that their child has Down syndrome. It’s with that in mind that I came up with the following tactics (and if you said/did one of the things on the “DON’T” list, it’s ok. I’m not harboring any hostility or anger because, as I mentioned, I wouldn’t have known how to react either. This list is simply based on my reflection over the past few weeks and what helped us the most. We love you all, no matter what your response to our news may have been).

Thursday, October 4, 2012

News...


We went in for a follow-up ultrasound to check on Quinn’s heart and kidneys and to make sure there were no other red flags. While one of his kidneys is still dilated, his heart looks great, which is good news. The bad news is that they found white spots/calcifications on his stomach and liver. The doctor (not our OBGYN, but a specialist in Maternal Fetal Medicine) said it could be a result of a viral infection, but told us it’s probably related to Down syndrome. Either way, she encouraged me to get tested for infection and dodged my questions about worse-case scenarios. She left us feeling  more than a little shaken up with her awkward bedside manner. We assumed she was hiding something from us and waiting for our regular OB/GYN to share the bad news with us. This was at the end of the day, so naturally our regular doctor would learn nothing about the appointment until today.

Enter Dr. Google. After much research, I learned that these calcifications are not especially common in babies with Down syndrome and often point to a larger problem. In our case, we’re most worried about CMV, a virus that causes birth defects and even death if transferred prenatally. It’s common in daycare centers and rarely causes symptoms in healthy adults, pregnant or not. Toddlers who contract the disease show mild flu-like symptoms, identical to what Atticus has had the past few weeks. We assumed it was a string of colds since it’s his first foray into the world of germy daycares, but now we’re not so sure. We worried and stressed and fretted all night, assuming the worst. There’s no treatment in utero or any way to know how strongly he would be affected, so we're naturally scared for our little guy. We know that he’s at a greater risk for health problems as a result of his Down syndrome, so we worry about his ability to recover from something so catastrophic. C'MON universe! Two serious sources of birth defects? Really? The past 24 hours have been absolute hell.

But my regular OB/GYN just called to calm my fears. She knew instinctively how worried we must be and let me know that the doctor we saw during yesterday's ultrasound has been known to terrify expectant moms with a pretty crappy bedside manner. She said my experience as a teacher, nanny, and daycare worker means I've very likely already contracted CMV before and my body is therefore immune. This means there's very little chance of passing it on to Quinn, even if Atticus had/has it. She said while the calcifications are not necessarily common in cases of Ds, it does happen and is likely the reason for their presence. Also, she reminded us that we should be celebrating the fact that Quinn's heart still looks great, which should not to be taken for granted. This is excellent news.

This is not to say that we're out of the woods. There will be more tests, more worries, and more complications as the weeks go by. The calcifications could be a sign of something more serious, but our doctor feels that this is unlikely, making further testing for this issue unnecessary and invasive. So for now we're feeling loads better than we did last night and ready to celebrate the small victories, like a healthy heart and the reality that Down syndrome is not the worst-case scenario.

We have a baby coming, y'all. And he's gonna be adorable...