Today was our first OB appointment with Laura. We switched our care to Laura since she is a high risk doctor and has been with us from day one of this nightmare. It was the third week in a row of doctor’s appointments. We were not excited to have yet another emotionally draining appointment.

This was the first time we saw Laura and Karen since the initial diagnosis. The four of us sat in the room together. It didn’t take long for my waterworks to start. Wayne had to do most of the talking because I couldn’t speak over the tears. He’s a trooper.

Our big question was: Now what? Now that we know what we are dealing with, what do we do? That was the focus of the appointment.

Since we’ve had a diagnosis, I have refused to do any googling on Trisomy 18. I have no desire to hear other people’s stories or read about Trisomy 18. That might sound strange, but I knew our story and that’s all I wanted to focus on. I didn’t want false hope nor did I want to be completely freaked out. So I refused to google. Wayne did very little googling at first. In fact after doing a very small amount of research, Wayne told me to never do it. I’m glad my gut said the same thing.

In Wayne’s limited research, he found two schools of thought when it comes to Trisomy 18. Some people are focused on making the baby comfortable after birth in order to spend time with the baby knowing the baby will pass in a few minutes, hours, or days. But there is also an extreme school of thought strongly encouraging parents to take extraordinary measures when the baby is born. Wayne stopped researching after reading this. We weren’t interested in making our baby’s diagnosis a political debate.

Laura’s first question to us after we all hugged (see why we love her?) was: What do you know about Trisomy 18 from the internet? We shared with her the very little we know. And we went on to explain our interpretation of it. Out of the 10 common complications Trisomy 18 babies have, our sweet baby girl has 7 of them. We believed our baby’s numerous complications made her diagnosis on the more severe end of Trisomy 18 spectrum- not to suggest any Trisomy 18 diagnoses aren’t severe. Therefore, our guts told us we wanted to spend time with our little girl and not rush her off to surgery where her little body will most likely not survive. Laura and Karen completely agreed with our thought process.

Of course, this assumed our little girl will be live born. Laura reminded us, in a very gentle way, preterm labor, stillborn, or intra-uterine death were still a strong possibility. Regardless, I was delivering a baby. We now needed to pray for a live birth so we could spend time with her and so Madeline and she could meet.

I couldn’t believe we were having this conversation right now. More tears.

We also discussed how to handle the remainder of this pregnancy. As of now, there were no risks to me. I needed to be monitored for the usual pregnancy risks- diabetes and preeclampsia. We would check in on our baby periodically to listen to her heart tones, but the main focus would be on my health.

Ugh, this just seems so unnatural- putting my health over our baby’s in a way.

We decided to keep the same OB appointment schedule. And we added ultrasound appointments as well. Basically, we scheduled an appointment every other week. This is going to be a very long pregnancy for many, many reasons.

Our next appointment is in two weeks. It will be another growth ultrasound. It has been difficult to get good images of our baby’s heart. The doctors know there are heart defects, but they still do not know how severe. They are hoping the next ultrasound will provide more information.

Before we left, Karen said something interesting. She mentioned how important it is that we enjoy this pregnancy.

WHAT? I do not understand. How am I to enjoy this pregnancy when I know at any time my baby could die and even when she is born she will not live long? I know Karen deals with situations like ours on a regular basis. My mind knows Karen knows what she is talking about, but my heart doesn’t understand. Enjoy this pregnancy? How is that even possible?

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