a miracle - Week 13

Today was the day.
I was in the middle of getting dressed when my genetic counselor called.
"I have good news for you," she said.

Our baby is a carrier for my husband's mutation on ALG12. A healthy carrier BOY.
I'm still stunned. This could happen. This could really happen.

After some chatter, I asked her if the test found anything else? Anything bad?
Turns out...no bad news! Just a healthy baby boy.

I expressed my concern about cystic hygroma and diaphragmatic hernia. Drew had both and John had neither. Both abnormalities are part of many syndromes, but they also can stand alone.

But my genetic counselor said she thinks we would have already seen evidence of a cystic hygroma and so far this pregnancy seems to be perfectly normal, perfectly unaffected.

I called my husband and cried. We are going to have a take home son!

I truly thought this baby was a girl. What are the odds of having three boys in a row?
So I spent some time looking at boy baby clothes at the store today and I even bought a little striped sleeper. I browsed the boy scrapbook papers.

Tonight we looked at boy nursery themes. We named our little one, our little boy.

It looks like we really are expecting Clark Alan on Dec. 29.

It is a miracle.

To Doppler or Not to Doppler - Week 13

I have been astonishingly — ASTONISHINGLY — positive about this pregnancy. Maybe its the good NT scan, maybe its something else...I don’t know! All I know is that while I worry and worry and worry, there is some part of me somewhere down deep inside that feels like this baby is OK.
So with that comes peace.
Until last night. I don’t know what happened. My husband and I were talking about the baby a little bit and I felt fine. We decided to take our daughter to see the new Superman movie (bad idea. Not a film for kids. Not a good film for adults, either.) While we were sitting in the dark theater, somewhere in the middle of Superman’s umpteenth battle, it hit me.
Something might be wrong.
I think something is wrong.
Something is wrong.

I started to think back...when was the last time I felt this baby? (I’m feeling little movements, but not much else, It’s really too early for movement).
Then I started to panic. The baby is dead. I know it. No heartbeat. I KNOW IT.
When we got home from the movies, I asked my husband if I could get a Doppler to keep track of the baby’s heartbeat.
SIDE NOTE: My husband never tells me no. I am spoiled rotten.
He said no!
He said he doesn’t want to deal with the days when I can’t find the heartbeat on my own. He thinks that stress will be too much for me. He thinks it will be too much for him.
“I don’t care if you find one for free,” he said. “I don’t want it.”

So now I have to wait until July 8 to find out if this kid is still kicking in there. That’s two whole weeks!
I was even tempted to go to the local “free clinic” where they charge you $50 per appointment and see if they have a Doppler and could check the baby.
I don’t know if a Doppler would help or hurt this situation. As with everything with this pregnancy, I am without answers.

On another note: still nothing on the target genetic test. I’m hoping for results by Wednesday, but I bet it comes in later than that. Wednesday will be 10 business days since my CVS. I’m just ready for some answers.

Did You Feel That? - Week 12

I was so tired when I got home last night, I could barely make dinner. I finally got the meal made and was almost too tired to even eat it.
I was dozing off in bed when I felt it — I swear to you I felt this baby squirming back and forth! I WOULD say that it was gas or something, but it was rhythmic - somewhat consistent - like a muscular fish flexing in there.
I really am pregnant, y’all!
I also had a surprise this morning while getting dressed. My shirts fit over my belly, but they do not accommodate my newly ample bosom. My babies always send me up a bra size, but I never get to keep that nice full B cup. Now the fat I collect on my rear is a different story...I’ll have to work my butt off — literally!
I’m getting more and more anxious for the results of the genetic testing. I was playing it so cool for a whole week and now I am starting to chew my fingernails over it. Let’s hope the results are in next week.

The First Call - Week 12

I got the call we have been waiting for this week. This baby does not have any trisomies. That’s right - 46 perfect little chromosomes.
While most parents would pat themselves on the back for being so genetically sound, we breathed a big sigh of relief and then went right back to worrying.
Both our boys had the correct number of chromosomes. In fact, other than the 1g, there wasn’t much wrong with them. That means that we got the “good news” from the Cleveland Clinic seven times - two FISH, two SNP, two microarrays, and one target test for Smith Lemli Oplitz — all perfectly clean. Nothing to see here.
So that leaves us with a minimum of seven days wait for the target test. MINIMUM.
So, yes, yay for no trisomies. But this ain’t over yet.

Up All Night

Like a shot in the night, I sat up in bed. I was stressing out about my new job, about turning in my letter of resignation for the old job and everything that leaving entails.
I tossed and turned, keeping my eye on the clock. It was 3 a.m., then 4 a.m.. By 4:30 I had flopped onto my stomach and my mind turned to an idea I have been kicking around for a long time. My book.
Doctors and nurses and others have encouraged me to write about genetics, about termination and testing and decisions and dead babies and exomes. I’m a writer by trade, so who better to discuss the process, put the pain into words?
The desire to write about it turned into my blog Beyond the Exome, but that was mostly because I couldn’t find ANYONE else who was going through the exome process. There is no emotional handbook for that long wait for possible results. No one holds your hand through it, though I do have a genetic counselor who should get paid double for her efforts as a therapist. She is amazing.
I chose to write about exomes to give other people a little bit of a roadmap through the process, but also to give myself a “nuts and bolts” topic: Not how I’m feeling as the mother of two dead babies — other women have already written about that.
The idea to write about the terminations and the genetics feels like the right thing to do, but how to start?
I didn’t have to start — my brain did it for me. I flopped onto my belly and the words started to form in my head. An abstract idea formed into an essay.
So like Ernest Hemmingway on a creative bender, I got out of bed and turned on the computer and started to type. I wrote it all at once, which probably means it’s crap. Nothing stopped me. I didn’t stumble over words or fuss with the phrasing.
I love what I wrote. This introduction feels like more than an introduction to a book - it feels like a warm welcome after a long day at work. Like I had to come to this or it had to come to me, the hard way. There could be no forcing it.
Even if I write this book and no one else ever gets to read it, I think I still need to write it. For me. And it feels really good to get that first part out of the way.

Loose Lips Sink Ships - Week 12

I don’t want to tell anyone about this baby. I mean it. Part of me has that “I don’t want to jinx it” feeling, like things are going so well and the first time I tell someone about it or even buy a package of baby wipes something will go bad.
I’m also incredibly fearful of the reaction to my “happy news.” With John, everyone was so excited. We had so much fun telling everyone! With Drew, some people looked at me like I was nuts to try again. Some people cried not-so-happy tears. I ignored them. I was happy. I marched on with the determination that my baby was going to be just fine.
Except he wasn’t. And a lot of people weren’t surprised.
So here we go again. I don’t want to worry about what other people think of our decision to have another baby. I don’t want to see the looks of certain pity. We are definitely waiting until the genetic test and the anatomy ultrasound come back clean to tell anyone, but I am tempted to hold out even longer.
I suppose if it were up to me, I’d just call everyone up in December and congratulate them on being grandparents. “We want nothing but diapers for Christmas, for no reason at all.”
I spend Sunday with my in-laws and my best pregnancy disguise was a glass of wine. I carried it around with me and pretended to take little sips here and there. My husband drank all of his and the switched glasses with me so it would look like I drank it all. I wear Trendy Tops, which are like Belly Bands but cheaper. I’m loving yoga pants, which I actually wore to work today. I think my co-workers have guessed, but with the new job they won’t get to guess much longer. Then I just have to fool a bunch of new people.
My best friend is pregnant with her second child - a boy. I call her and we talk about horses and work and the new job, but we never discuss her pregnancy and certainly not mine. It feels strange to keep something from the one person who could likely understand me best.
At some point, the reactions of the people who love me most have done something to me that I can’t seem to wish away: I am more afraid to tell people that I am pregnant than I would be to tell them I am having another dead baby.
In my final therapy session, I talked with my counselor about my boys and how now that I am so far away from the terminations, I don’t ever regret them. I love them and they are a part of me, and I wouldn’t “un do” them. While their deaths were traumatic in every way, their lives have become something I carry with me every day. I would miss them if I didn’t have their little spirits with me. That’s a new feeling and it feels pretty good.
That means that even if this pregnancy doesn’t work out the way all pregnancies should just work out, I won’t regret getting pregnant this fourth time.
I just wonder if everyone else would regret it for me.

Round ligament pain and other pregnancy happiness - Week 12

I am no longer peeing every 15 minutes, which is very nice at night, but I have developed Round Ligament Pain. Ugh. Terrible, sudden shooting pains up my belly and into what feels like my cervix. I had these with my son John, so I know it isn’t going to kill me or the breadcrumb, but my poor husband barely survives these pains.
He just doesn’t know what to do, he fears something is really wrong. I swear he is going to die of a heart attack before we meet this little one. Everything, everything is a big deal when you are analyzing each and every detail of a pregnancy.
The morning sickness is all but gone. I am feeling dizzy and weak most of the time, which is attributed to the increase in blood flow due to the baby. Showers are the worst for this and there is no worse place to pass out than in the shower.
The app on my smart phone tells me breadcrumb is the size of a lime and I LOVE those little food comparisons. I sought out a lime in the grocery store today and felt more like an expectant mom than ever before.
I still can’t go into the baby section at the store. I can’t look at all the clothes and bottles and diapers. It still hurts too much. I had such huge hopes for both my boys — and especially Drew, my youngest, who was supposed to be my “rainbow baby.” Who has a rainbow baby and doesn’t savor every second of it?
Me, now.
This is *very hopefully* our rainbow, but I can’t enjoy it like I wish I could. I figure we have a minimum of nine days left before we get the results of our genetic tests, and even after that I won’t likely buy anything or plan anything until after we go to the early anatomy scan on July 8. I just won’t be able to relax until I see about diaphragmatic hernia, cystic hygroma and neural tube defects. Those are my focus. I’m not sure why. I guess because Drew had cystic hygroma and the hernia, unlike his big brother. So I question, of course, whether these were part of the glycosylation or rouge defects that lead to a higher chance of future babies having them?
The world may never know.