First Contact

I just moved. It's not that big a deal, really. I've moved at least 10 times in my life, and that's not counting any of my various apartments in college, etc. I figured once we got settled, I'd contact the local support group and join the party. No big deal.

It was harder than I thought.

The group out here is pretty big, I guess, and very organized. Their website is amazing, and actually helped me choose the hospital where I want to deliver Lizard Loaf, which also led me to my new doctor (who I hope is amazing... she sure sounds like she will be). For contact info, there was a phone number and general email address, too. I tried the number first. Even just dialing it, I felt anxiety. What do I say? I got some sucky news this past summer, so will you guys be my friends? Everything I thought of sounded pretty much as bad. But even worse, no one answered. The contact number for this support group went to a voice mail. "We try to check these messages frequently," it hedged. Try?! So, if you're busy, my petrified call for help would be what? Over-looked? Misplaced? Out-dated? Forgotten? I started feeling like I already belonged in the 'round file' (aka-trash can). No one was going to listen to my message. There wasn't going to be anyone in my new town to help me. I was alone.

*sigh*

I cried a little. Then I sent a terse note to the email listed and left the computer. My daughter's preschool tries to use redirection as the primary response when children get upset or misbehave, and I thought I'd try the same thing. I don't remember what I did, but an hour later my husband happened to check my email. I had such a wonderful note from one of the board members of the local group, and she had responded to my email within 10 minutes. It was a few days before I responded, and I still haven't called to set up a time to meet her and her son, but hearing from her has been such a comfort, such a strength. I'm not in the 'round file'; I'm not alone. My new friend says that I'm part of a special club now and that 'we stick together'. I think I believe that.

Mermaid's EKG/Echo

Sweet hair day for Mermaid! ;)

Mermaid had her EKG and echocardiogram on the same day as LL (Lizard Loaf). It's destiny. The MD felt confident telling me that his preliminary viewing of 80 something pictures of her heart indicated no defects. The total number of photos topped 130+ by the time we left and they'll be comped over before the official report is filed, but I'm feeling pretty good about that diagnosis. =)

Fortunately, I had a girlfriend explain what to expect and how to prepare. I want to be that girlfriend for you, in case any of you are going through this for the first time. Step one: plan to be at the hospital for a while. I packed a couple of Clif bars for me and a bottle for Mermaid. The EKG wasn't a big deal. Mermaid did have to strip down to her diaper and it took a couple of minutes to put special stickers all over her and hook up the electric leads, but the actual test only took a couple of minutes max. then they removed all of the stickers, though some residue remained on Mermaid's belly. I asked the technician how the results looked and she just said she wasn't a physician and couldn't discuss it with me. That left me nervous. I learned they really just can't tell you. It's not allowed.

Then we waited to be called for the echocardiogram. I had heard this would take about an hour once they started. In our case it was 2 technicians and 2 doctors and 1 hour 45 minutes. Mermaid finished her bottle and I had to down a Clif bar while they were changing technicians. Technically, no food was allowed. What's a nursing mom to do? I had left my home three hours earlier! It's important that the child hold very still especially during the echo, so being asleep or having a bottle to drink for that 1-2 hour process is so helpful. The last thing you want to do is be sent home and have to reschedule because your baby wasn't cooperating. Also, baby must be bare chested so it might be nice for baby to wear a button up or just take baby's top off and keep baby comfy in a blanket until it's your turn. Maybe baby will even fall asleep and you wouldn't want to have to wake them up by taking their clothes off for the echo. Now, the technicians could certainly help the process by warming the ultra sound gel. Mermaid was actually pretty good and took her sweet time with the bottle, but towards the end got really bored with being calm and wanted to play with the cables stuck to her shoulder. The technician was working right under her neck, so Mermaid went to work sucking on the technician's hands.

It was amazing watching her little heart pump so steadily. I could clearly see all of the chambers working. Then the technician would flip a switch to help her see blood flowing in and out and it came in three different colors: blue, red, yellow. It was like fireworks exploding in Mermaid's chest. When the doctor came in to tell me there were no defects, I felt like there were fireworks exploding in my chest too! Woo Hoo!

Echocardiogram

I nearly passed out. It wasn't that the news was shocking (we didn't even have any news yet) or the procedure so painful (no needles involved)... actually, I don't know what it was. But whatever the cause, I started to black-out about 10 minutes into the ultrasound with the pediatric cardiologist. They got me some more pillows, a drink of water, and I stole an apple slice from the snacks I'd brought for Her Nibs. I've still felt weak all day, but I did avoid actually passing out.

An echocardiogram is an ultrasound where they look exclusively at the heart, but in great detail and with an expert on the heart. We saw a pediatric cardiology fellow first, then the head honcho pediatric cardiologist came in for a few minutes to get a few pictures himself, and he's the one who sat down and talked with us afterwards. I shifted by legs around a little at the beginning and the doctor said "Yeah. Make yourself comfortable. This is going to take about 45 minutes." Seriously?! A 45 minute ultrasound?! Yep. Seriously. We accepted their offer to put a movie on for Her Nibs.

It wasn't fun, exactly, since I was still sort of fighting for consciousness the whole time and felt very uncomfortable while trying to lie still and hoping Lizard Loaf wasn't in a bad position for pictures. At the same time, I've been waiting anxiously for this day and the results of the echocardiogram ever since we learned Lizard Loaf has Down syndrome. Nearly 50% of children with Down syndrome have a congenital heart defect (you probably know this, but congenital just means 'born with it'). Usually, the problem is a hole between the four chambers of the heart, pretty much right in the middle. This is, of course, a bad thing. The solution is a surgery within the first year of life that is actually fairly routine. Babies with this heart problem have a harder time circulating oxygen, so they tend to be sleepier, and I've read about one that had a bluish tinge until after the surgery. From what I understand, babies who need this surgery are usually in the hospital for less than a week and recover very quickly. This sort of health problem is not desirable (by any stretch), but it's not the end of the world.

Fortunately, Lizard Loaf's echo cardiogram came up completely normal.

*huge sigh of relief*

We're not completely out of the woods, but Lizard Loaf definitely doesn't have the big hole in the middle of his heart between all four chambers. In fact, he doesn't have any major heart problems at all. Unfortunately, this ultrasound can't see everything. The heart, I learned today, works differently before a baby is born. The heart fast-tracks oxygenated blood from the placenta straight to the brain, rather than cycling it through the lungs first (which don't have any oxygen to give yet, obviously). Once a baby is born and starts taking in oxygen, the tubes change a little, and the blood picks up oxygen in the lungs before going to the brain. The pressure between the various chambers of the heart changes after a baby is born, too. Some things that might be invisible now would be apparent later after these changes happen. Also, Lizard Loaf's heart isn't much bigger than a quarter right now. You can only see so much on such a tiny organ. There's still a chance he has a small hole in his heart. Even if he has one now (which we can't detect), it could easily fix itself before he's born. And even if he has one that doesn't fix itself before he's born, it would probably still repair itself and not need surgery.

I know this is a rambling post. I hope it makes sense. Bottom line: There are no guarantees in life, but in every way we can measure right now, Lizard Loaf is perfectly healthy. And Turtar and I are very grateful for that.

Pictures

Yeah. I know. He's pretty much gorgeous (and with quite a schnoze, too). Sometimes I wake up and think: It's all a mistake. When my baby boy is born, he will be healthy and normal. He especially will not have Down syndrome. What is counting chromosomes suppose to prove anyway?

*sigh*

Natalie Merchant's song "Wonder" fits Mermaid better (for reasons of gender), but I've adopted it, too, as part of a new logo. I'm making a onesie for Lizard Loaf with this on it:

at the beach

Have you ever noticed how whatever is on your mind suddenly plays out in the world around you with crystal clarity? We've had Down Syndrome on the mind and suddenly it seems like everywhere we go is someone with Down Syndrome.
Today we saw a young man with Downs who had very little hair--it looked like a chemo-treatment sort of hair loss. A couple days ago, we saw a young many with Downs dressed like a little g...beard, sideways hat, big black rapper shirt baggy pants. Each person we've seen has been dressed in clean clothes that seem to be what the parents think is the best look.
One little girl with Downs at the beach caught my attention. I'm not sure how old she was, but she was at least four or five. She wore a great pink strawberry swimsuit and had cute pigtails. I saw her just past the life guard chair sitting face-front on her mom's lap as they joyfully leaned in for kiss after kiss. Her family was a big group--with cousins and aunts and uncles and grandparents. I'm so glad our family gets to share in the joy and pain, triumph and frustration together.
We should do it at the beach. =)

Culture Un-Shock: Validation Station

I shouldn't be so delighted by the annoyance of other people. I have been annoyed by so many things lately, I should have nothing but pity for others suffering in the same way. But I'm delighted.

I don't think I fit the mold of a parent to a child with Downs. So many things seem to bug me, some coming straight from other parents in the same situation. With specialized levels of political correctness facing me in this new society, I've felt doomed to be an outcast, even in the support groups. But there is hope.

I read this article called "You Will Dream New Dreams". This woman went to tons of online forums oriented around different disabilities and asked parents what they liked to hear, and what they didn't like to hear when people were responding to their child. Of the Top Five Worst Responses, three are among my pet peeves.

I'm not the only one who feels this way! I'm not so different after all!

This list brought another important taboo to my attention, too. Even 'positive' stereotypes are negative. Children with Down syndrome are assumed to be happy, extra loving, and joyful. The article says:

I can honestly say that not one day goes by [unless] someone feels compelled to tell me, "They’re such happy and loving children." Well, aren’t all children? One parent wrote, "What about when they’re no longer children? Oh great I’ll have a 35 year old child." Another said, "Yes he smiles, he also has temper tantrums.
He gets happy AND sad. He doesn’t just live in his own little world."

I'm so glad to hear this. Just three days ago, I found myself saying this to a friend: "I've heard children with Down syndrome tend to be so loving and accepting. But I have a hard time imaging a child more loving than Her Nibs. She spontaneously kisses, hugs and proclaims her affection. Sometimes she bursts out jubilantly 'Isn't it wonderful being a family?!'" I just hope Lizard Loaf is as happy and loving as Her Nibs.

Side Note: Since Lizard Loaf is due in October, and we are being optimistic about his health, Her Nibs has already planned our Halloween costumes. She will be Princess Leia, Lizard Loaf will be Luke Skywalker, I will be Queen Amidala, and Turtar will be Darth Vader. We will all have light sabers, too, though I'll have to carry Lizard Loaf's of course.

In Defense of Prenatal Knowledge

I've been asked before why I choose to have an amniocentesis. A few recent experiences have prompted me to post my answer here. (Maybe getting it down in words will help me feel less defensive, too.)

"We just heard the heartbeat for the first time today." This is my co-worker. He was surprised to have an ultrasound at the first appointment, and he did not like the tech. I was trying to be reassuring, not controversial. "Don't worry. They check for tons of different things at the 20 week ultrasound. So, it'll probably be a doctor, not a tech, doing the ultrasound." He was mortified when I told him that some of the things they will look for are markers for Down syndrome. He wasn't mortified by the hard reality that problems might crop up, but by the fact that doctors would look for these things at all. He and his wife would never consider terminating a pregnancy, so what was the point? A tech should be able to determine the gender, right?

Obviously, there's a lot more to an ultrasound that discovering your baby's gender or deciding if you want an abortion. This guy is a novice, and I won't waste time on a post in defense of ultrasounds. But he was also coming down against prenatal diagnostics.

When someone finds out I've decided to have an amniocentesis, he or she often starts to judge right away. There are risks involved with this test: about a 1 in 200 chance of complications. Don't I value the safety of my baby? Was I considering abortion? And if I'm not considering abortion, then there is no reason to have the test, right? What kind of insanity must rule my mind? *sigh* My answers seems simple to me, but I always feels long-winded giving them.

I recognize there are risks with an amnio, but they are nominal. Most of the possible 'complications' are no threat to the baby at all. The amnios I've received were also with experienced doctors in excellent facilities where the risks of complications were significantly reduced.

I could never seriously consider abortion (though 90% of babies with a prenatal diagnosis of Down syndrome are killed). It offends my personal beliefs, and would probably get me excommunicated, to boot.

Beyond that, I've got this crazy notion of knowledge for the sake of knowledge. (Big surprise I ended up married to an historian, right?) Most of my family has a genetic translocation. Distinctly related to our translocation, we have an increased incidence of miscarriage (though it's impossible to quantify heartache) and a history of Down syndrome (5 now between cousins, nieces and Lizard Loaf). If I didn't have this translocation, I would probably never choose to have an amniocentesis. But I do have it, and I want to know.

I want to know if my child has the translocation. Problems may come anyway, but will she be at a higher risk for miscarriage and a child with Down syndrome? Will she want that knowledge when she's older? Genetic testing isn't cheap, and it isn't always covered by insurance (mine wasn't). An amniocentesis is even more expensive, but it is covered. Also, having this information in my medical record instead of hers might be an advantage some day.

I want to know for myself. I knew I had a higher-than-average risk of receiving the very result I got 19 days ago. I've talked to SumGreater about this possibility. I decided that if it happened, I wanted to isolate my grief. I didn't want to feel disappointed with the child in my arms. I don't think I could bear the guilt. I'm not completely past the grief yet, but I know it won't be with me in the delivery room. I'm glad I know.