Monday, November 26, 2012

Feeding and Feeling Sick

This post is another two-parter. I haven't fully gotten over my fatigue yet, so it's been challenging to get online after Max goes to bed. Most nights I just crawl under the covers so I can get enough rest to wake up at 4:30 the next morning. There are so many posts that I've promised. I've got to catch up somehow.

On to the meat and potatoes (so to speak) of this post:

Part One

Max is only now beginning to feed himself foods that aren't easily held in the hand. Utensils aren't really a part of his life yet (no real interest), so feeding himself foods like applesauce can be tricky. Admittedly, I've been slow to push the issue because of the mess that inevitably results. I've finally realized I've got to get over it, and so Max has recently had several fun food adventures. Here he is the other day feeding himself applesauce.

That was a several paper towel clean-up.

Picky-ness has been an issue as a late, as well. Max has a handful of things he likes, and refuses most others. Needless to say, eating what Mom and Dad eat has been out of the question. You can imagine how thrilled I was tonight, then, when Max ate the tiny bison burger I made him to match mine. I figured, hey, just for that, why not let him indulge in a cupcake.

Clearly enjoying himself and signing "more."

This was a full bath clean-up. He got that cupcake up his sleeves, on his belly, even on his toes!

Part Two

In my previous post I talked about my then upcoming sequential screening and ultrasound. I was worried because that was the appointment that changed our lives the last time. Well, I'm pleased to announce that so far, there appear to be no genetic abnormalities. The sequential screening came back normal.

But as life goes, you relieve one stress and another takes its place.

About 10 days ago Max was diagnosed with fifth disease (parvovirus B19), also known as slapped-cheek disease for the brilliantly red rash that colors the cheeks. If you haven't heard of fifth disease, its one of these common childhood viruses that is annoying but not dangerous, and for which there is no treatment.

It's not dangerous for Max, but it turns out it is dangerous for me...or rather for the little baby taking up residence in my belly. Initially, I had a vague idea of the complications associated with fetal infection of fifth disease, but I wasn't worried until my OB called on Friday to say that my blood showed the presence of parvovirus antibodies.

So what does that mean? Best case scenario, that means I was infected at some point prior to now, and am now immune to present or future infection. There is no danger to the baby. Worst case scenario, this is a new infection that could affect the baby.

The next logical question, of course, is how does it affect the baby? According to a number of online medical sources, parvovirus B19 causes fetal anemia. The increased effort of the heart to move enough oxygen-rich blood through the body then causes hydrops fetalis. What? Basically, that means that pockets of fluid develop inside the fetus in places they ought not to be. This can ultimately lead to heart failure and fetal loss.

So, can it be treated? Well, yes. In some cases intrauterine blood transfusions are performed. In simple terms, they perform a transfusion (or multiple) on the baby while still in the womb.

All of this information comes from a number of medical websites online, the most significant being that National Institute of Health. Unfortunately, rates of infection, fetal loss and successful treatment vary across sources.

I'm experiencing a lot of stress right now. One of my girlfriends experienced anxiety-inducing complications during two pregnancies. She advises me to assume everything will be fine. Power of positive thinking and all that. I think she's right. Worrying gets me nowhere. Unfortunately, it's one of those things that is difficult to control.

Anyhow, I'm going for additional testing in a week to determine if the infection is old or new. Those results can change the course of this pregnancy.

I'd like to make a request. If you pray, will you pray for our little baby? We'd really appreciate it.

Monday, November 12, 2012

Double Post

Two years old. Grown-ups always said that the older one gets, the faster time flies. Well, now that I'm a grown-up with a 2-year-old, I'll add, once you have kids, time goes by in flashes. And it really feels like that. Mixed up with the murky, half-formed memories of everyday life, I've got vivid, larger-than-life images of memorable moments in my--our--life with Max. Like, the first moment we Max in ICU after his heart surgery. His bright red, screaming face the first moment we met him, two years ago. The smile that spread across his face the very first time he tasted a cupcake. That backwards glance he always gives just to make sure someone is behind him before he sets off up the stairs.

I think for each of his birthdays I'll have a moment or two of melancholy, or nostalgia--not sure which. It'd probably unavoidable. But before I get carried away, here are seen from the birthday party yesterday.

Max's cousin Nicholas and his Auntie 'Cole.

Enjoying the snacks.

Max joined by Mommy and Daddy (and Caetano) for wish-making time.

Both Grandmas.

Mad rush for candy after beating the pinata senseless.
 This was the year for noise-making birthday gifts. Here Max demonstrates his skill on the triangle--a gift from Grammy and Papa--while Papa holds it up.

It really was a wonderful day. And I'm thankful that I didn't have to go to work today. One full day preparing for the party, and one full day having the party is enough to make a pregnant woman collapse. And collapse (figuratively) she did. Oh, and I'm referring to myself.

Yes, I am pregnant. Today was the first day of my 12th week. I was so hoping that, like they did with Max, my fatigue and nausea would disappear in a flash. Alas, they did not. Oh well, there's always tomorrow.

Big day tomorrow. I'm having the first of two sequential screening's and the ultrasound that measures the nuchal translucency.

Last time we went into this appointment without a care in the world. "Of course our baby is fine!" But a few days later our world came crashing down around us. My OB called on a Friday afternoon to tell me that our baby's chances of having Down syndrome were 1 in 10.

1 in 10. That meant that for every 10 women with the same measurements as mine, one of them had a baby with Down syndrome. That also meant that nine of them did not. Of course, these sorts of things only happen to other people, so the baby would be fine.

It turns out, we were those other people. I was the one.

We elected to have a CVS the following week. At the same time, they performed an ultrasound to measure the growth of the nasal bone. The specialist who did the ultrasound found the nasal bone, and perhaps, regretfully, gave us hope that the results would all come back "normal". We received Max's official diagnosis a few days later.

Unlike with Max, where I felt certain during the entire first trimester that something was amiss, I have felt at peace and confident about the health of this baby. Perhaps it is simply knowing now that a diagnosis of Down syndrome is not the end of all things. Or, perhaps it is a mother's intuition signalling that in fact, all is well in babyland.

That calm disappeared two days ago when I realized that I will be able to read the results of the nuchal translucency on the screen as it is performed even if the tech refuses to give me any information. Max's measured 2.9mm, which is at the high end of normal. What if this baby's is higher?

I'm not afraid of having another baby with Down syndrome. Max has improved my life by leaps and bounds. I'm afraid of the feelings I will have if the baby is diagnosed with Down syndrome. I don't want to feel the devastation that I felt 2.5 years ago. I don't want to experience the sense of loss and grief that overwhelmed me. I don't want to be on the phone with my sister-in-law, unable to ariculate a single word as she calls out, "Amy, breathe, breathe." I don't want to sit in my car in the driveway, screaming at God, in blood-curdling wails, for this diagnosis...this diagnosis that was ruining my baby, ruining my baby's face.

Now, this is how I felt months before I met Max, and realized that he is the perfect, most beautiful son. He is exactly who he is supposed to be. Down syndrome didn't ruin anything, it is a part of him. It has done nothing but enhance our experience as parents and I wouldn't change a single thing.

But the thing is, emotions come unbidden. They are difficult to control. When they are intense, they are difficult to experience. Even though I know Sean and I are strong enough to weather whatever these tests may reveal, I can't help but hope that they reveal nothing. Nothing at all. That they predict an uneventful pregnancy, and a healthy, typical baby that Max can help us care for. I'd like to have that experience.

Thursday, November 1, 2012


Wow. This was Max's first Halloween! I mean, he was around for Halloween last year, but come on! he wasn't even one! We dressed him in a costume that he hated, took a couple of pics, and then put him to bed.

This year was the real deal. Max's favorite animal is a monkey, so there wasn't anything else he could be. I went all out and bought a ridiculously-priced costume, but boy was it cute!

For the life of me, I couldn't get a good picture!

First, too much monkey face...then not enough!

So I enlisted Grammy's help. Her first try, pretty good.

Her second try, even better.

But, as they say, the third time's a charm! 

Don't you love it?!

Anyway, being my first Halloween as a mom, and in a new neighborhood, I felt a little bit like a fish out of water. At 6:00 I started looking out the windows, waiting for the first sign that the little ones were ready to go. I mean, aren't they supposed to trick-or-treat while it's still light out? Nothing. "But it's New England. It gets dark early!" And dark it got but still, nothing. Then around 7:00 I finally saw the first brave souls.

We ventured out together, the three of us, our little family. It felt a little funny carrying Max to our neighbors' doors, almost two years old but looking more like a giant one-year-old. But any discomfort I felt melted away as Max laughed, waved, hollered and had a grand old time. It was good, old-fashioned fun. I can't wait to do it again!