So Much More

Our family spent some of the first days after learning our baby's diagnosis talking about how we will use purposefully person-first language when we talk about him.

This is natural for me because I have used this same language for years when talking about my uncle. I never say he is schizophrenic. Instead it's that he has schizophrenia. This seemingly small distinction is important! My uncle comes before his condition because he is so much more than that: one of the most generous people I know, a huge sports fan, a Beatles fanatic, a wonderful uncle.

Lily immediately took this language seriously. She has already become a strict enforcer and will point out any transgressions. This means she is mostly correcting Ella who tends to say our baby IS special needs. What we're working on is saying he HAS special needs instead. Similarly, he is not a Downs baby; he is a baby with Down syndrome. Because just like his Great Uncle Tom, our baby will be much more than his condition.

And although we don't know much about him yet, the girls and I realized while sitting in the car in the dance parking lot that he is already more than his diagnosis. He is a boy, my son, and their brother. He is a grandson, nephew, cousin, and great grandson. He is William Oliver. He is Will.

Telling the Girls

We have put off sharing any news with the girls. They were crushed last time and really how could we put them through the risk of another loss? Over the weekend we started to think about when we should spill the beans. I am, after all, starting to look a little round after several previous pregnancies. We figured we'd wait for the next appointment to confirm we were still chugging along and we'd wait long enough to get the Harmony results so we could share whether they could expect a brother or sister.

So when we received the news about our baby boy having Down syndrome, there was a lot of uncertainty about what our future will look like. But one thing that Troy and I held onto was we were ready to share our news with Lily and Ella.

Now the amazing thing is, our daughters have sort of been groomed for their upcoming roles. Both girls attended the special needs preschool at the local elementary school as peer models. While I'm not even sure of what needs their classmates have had, I am sure my girls have played with, learned with, and befriended a variety of kiddos. And this year, particularly, Lily has become friends with a girl in her class who has Down syndrome.

So we started by telling the girls there is a baby in my belly. Troy continued to share that the baby will have special needs. This is a term Ella has been using a bit in the last few weeks, so we thought it might resonate a little with her. He added to Lily that the baby has Down syndrome and she understood that is the same thing her friend has. We finished by letting both girls know that they will be great big sisters.

We didn't tell them whether the baby is a boy or girl. We're saving that for a celebration! At least for now, votes seem to be that they want a brother.

The Tears Came

After the initial hours of strength (and let's be honest, shock), the tears came. But they came and continue to come from a very specific trigger:

In the middle of that first night, the floodgates initially opened when I seeked out a blog post I first read five years ago when a mother wrote about learning her daughter has DS.  She expressed the initial raw emotions and also the love and wonder she felt.
Her Post

It occurred when I happened upon a video of children explaining all the things they CAN do with Down syndrome.
View the video at the bottom of this page.

The crying, sobbing in a parking lot, happened when I watched a video of happy, active children who have Down syndrome participating in the Special Olympics. My brother sent me the clip of this event, which he happened to attend the day of our diagnosis.

And the crying came when I read my brother's blog post written the day after learning the test results. Perfection.
View the video and read his blog post here.

What these all have in common is they're all positive. They all give me hope about our future with OUR SON.

The Results Are In

Today we had our appointment. With less and less morning sickness in the last week, I had struggled mentally for the last several days. So, I was very glad to go in for some reassurance.

I was nervous, but the nurse decided to take my blood pressure at the beginning any way. Surprisingly, it wasn't too bad...for me. The doctor said she would get straight to the doppler then we could talk. I told her I didn't have any questions because all I needed was reassurance for another week. She tried the doppler first and thought she found the heart beat but said my heart rate was too high again to be sure. I was surprised to hear this because I actually thought my heart rate felt normal. She wheeled in the machine and I got another look at the baby. Today showed a very active mover and shaker, which felt like a relief since last week there was hardly any movement.

Afterward, Dr. L shared that the harmony genetic test results were in. The next part, was life-changing.

The results were abnormal. My first reaction was to demand to know why she had just bothered to show me the baby. She explained that the baby has trisomy 21, Down syndrome, and that it's not fatal. She wanted me to see that everything was still ok. I expressed that this outcome seemed crazy after everything else we've endured. Her reaction was something to the effect of, "I know. What the fu*k."

I asked the few questions I could come up with off the top of my head.  I asked to know whether the baby is a girl our boy. I asked for literature to feed what I'm sure will be an insatiable quest for knowledge.

What I didn't do was cry. I still have a living baby. Certainly, our previous experiences have given us a healthy dose of perspective to know that things could be much worse.

And on some level, I wasn't surprised. For the first time with any pregnancy I was nervous for the results of the test. Also, I read last week on Harmony's site that the results take 7 days. Monday night at dinner (the 7 day mark) I said to Troy, "What if she got the results but didn't call because something is wrong?" Rather than saying that was silly, Troy seemed to agree that that was a possibility. As it turns out, Dr. L received the results in the same hour as this conversation. She decided to wait until our appointment the next day so she could share the news in person.

I said last week that soon we would know more about who was growing inside of me. And now we know there is a little boy and there's a 99+% chance that he has Down syndrome.

10.5 Weeks

Yesterday was my latest doctor appointment. I could tell I was getting anxious in the waiting room despite having a calm week anxiety wise. When the nurse went to take my blood pressure I asked her to wait until I had reassurance before she took it because I knew the reading wouldn't be accurate. She agreed.

Then came the doctor. She had decided to try the doppler rather than ultrasound (a cost savings for me of about $120 out of pocket. At this point I'd racked up 4!). She thought she found the heart beat right away but because my heart was racing over 100 bpm, she couldn't say for sure whose heart she was hearing. After trying for a while and not being certain, she decided to just do the ultrasound. I'm glad because I'm not sure I would have been convinced who we were hearing even if she was.

She immediately pointed out the beating heart of a baby who looked so different from last week: bigger, more developed, more baby like. I was a bit concerned by the lack of moving since the week before we saw a bunch of wiggling. But I've learned that rather than just sitting and stewing about it, I should just ask. Dr. L wasn't concerned but said we could watch for a while. A minute or so later, an arm went drifting up to the head. Measurements are still right on track too.

We ended the appointment with getting the blood drawn for the Harmony test. They draw two vials of blood from my arm and can separate out fetal DNA to look for some genetic disorders and the sex of the baby. Dr. L warned us she'll call as soon as she gets the results even if it's 10pm. Within the next two weeks, we will know more about who's in there!

In the Right Hands

A while ago I wrote about questioning whether I should keep seeing Dr. L or switch to a new doctor.

What I can now say is she has been so supportive of me and is working overtime to help alleviate my anxiety. Dr. L now uses an online portal that allows patients to send written messages. This is a major contributor to my peace of mind because I have direct access to my doctor rather than having to go through a nurse first. With previous pregnancies, I expressed to Dr. L that the nurses felt like gatekeepers keeping me from her. This time I shared that the portal and the direct access it provides to her is a Godsend. She revealed that messages automatically still go to nurses but when she sees one from me she grabs it and responds herself. What is even more amazing is she has responded at 10 on a Saturday night and while on vacation.

In addition to quickly responding to my concerns, Dr. L has basically let me set my own appointment schedule. I requested an appointment last Monday to coincide with my eye appointment. At first a nurse said there were no appointments available until April 9th. The next thing I knew, Dr. L sent me a message that she would add me to her full schedule on March 30th as I requested. At that appointment I said I felt weekly appointments would be best for my peace of mind and she agreed to not only see me weekly but to add me to the end of her day every Tuesday so that I wouldn't have to miss work.

Today was the most recent in my string of weekly appointments. We got to see a wiggly baby to get me through the next few days. Next week, at our request, we'll draw blood for the genetics test that reveals whether the baby is a boy or girl. I definitely feel that I'm in the right hands.

A Sixth Sense?

After having five losses including a late loss with Olivia, we're well aware that for us pregnancy doesn't equal a take home baby. That repeated disappointment is not only hard for us but for others who care about us. 


Apparently my grandma told my mom she didn't want to know the next time I was pregnant until much later in the pregnancy because it was hard for her to deal with the losses. The day I found out about my current pregnancy, I called my mom to tell her but she didn't answer. 
When my mom called back, I told her my news and she couldn't believe it. She had missed my earlier call because she was on the phone with my grandma who called my mom to say she had changed her mind and actually does want to know about my next pregnancy and that she was pretty sure she already knew. My mom assured her I wasn't and then returned my call only to find out that I am.
Grandma's not the only one, though. Earlier this week, Ella commented twice on the same day that there might be a baby in my belly. We certainly haven't told our children yet because we're trying to protect them from the disappointment they felt last time. I don't know where Ella is getting her prediction, but she's onto me.