And Baby Makes Three...

It has been two weeks since our worlds were turned upside down. It really is true that everything can change in just a matter of seconds. All of your hopes, dreams, and plans need to be reevaluated. When we received the news, the world seemed to come to a screeching halt. So many questions and fears came to mind, but mostly just disbelief. Since then, I have gone through every emotion that exists, sometimes within just seconds of one another. This blog is to follow our story and to hopefully help someone out there who needs it. If it reaches even just one person’s life, I know that it will have been worth it to share. After all, hearing and reading other people’s testimonials has been a major comfort to me.

Let’s go back to four months ago in March. That is when everything started. One positive pregnancy test. Disbelief. Two positive pregnancy tests…then three…then five. I was so surprised, elated, shocked, scared, confused, and amazed! Over the years I had convinced myself that I could not have children. I had a few reasons behind this concern, but mostly it generated out of fear. Being a mother and having a family was always top of my list in life. The thought of that not happening always terrified me, and over time I just believed it. Finding out we were pregnant was such an amazing moment, especially given my fears.

Everything seemed to be going great with the pregnancy. All tests came back perfect and there was no indication anything was wrong. I had the normal morning sickness (ahem, all day…), weight gain, a few random mood swings, just joyful pregnancy stuff! When I started to feel our baby move, everything became even more real. Josh and I were so overwhelmingly happy. We had started thinking of names, arguing over nursery themes, and talking about all of our hopes and dreams for our baby. Over the moon happy.

At our routine 20 week ultrasound, things just seemed off. The ultrasound was taking an extremely long time and the technician was taking a whole lot of pictures. This is our first pregnancy, so I thought I was just worrying too much. I figured it could be normal for it to take so long. We tried to relax and not think anything negative and just enjoyed our time seeing our baby. She announced that we were having a baby girl! What a huge shock. We were sure it would be a little man. Don’t get me wrong - we were psyched about having a little Katy running around and my dreams of bows, dresses, and tea parties started to swirl in my head. We saw our sweet little angel’s face and just marveled at her little nose and cheeks. We joked that she was shy or stubborn, as she continuously put her hands in front of her face and wiggled out of our sight.

At the end of the ultrasound, our nurse practitioner told us that unfortunately the ultrasound they have just wasn’t giving them good enough pictures. They wanted to send us for a level II anatomy scan with a specialist. She said that there were two concerns - our baby girl was measuring a little small and that her umbilical cord appeared to be incorrectly inserted into the placenta. I called the specialist’s office on the drive home and set up an appointment for the next day. I worried all throughout the rest of the day. What if she is born premature? What if I need a c-section? What if she can’t gain enough weight and is born small? What if she is not getting enough nutrients? My mind wandered. Little did I know, these were the least of our concerns.

The next day at the specialist replays in my mind all the time. Another ultrasound that just seemed to take way too long. A few side comments that didn’t sit right in my stomach. An excessive amount of pictures of my baby’s heart and brain…I was nauseated with worry by the middle of the 2 hour ultrasound. The specialist came in, took more pictures, and looking at me asked, “Katy, tell me what all you understand about what is going on with your baby.” I felt like I swallowed a pit. I looked at Josh in panic and looked back and managed to say “I know she is small and something is wrong with her cord.” The specialist didn’t say anything for a few moments and then proceeded to tell us that our daughter had “several significant problems with her anatomy.” The tears came as I tried to listen for more. The specialist went on to start with her brain. She could barely say two sentences before I lost it. Josh helped me to regain myself and the specialist talked about our baby’s long list of problems…a dandy walker abnormality in the brain, tetralogy of fallot, a diaphragmatic hernia…the list went on and on. The question of terminating pregnancy came up, stating our baby’s problems on a list of 1-10 are a 10, that it would be an uphill struggle, with no chances of surgical corrections, and that most people would choose to terminate. After an amniocentesis, we learned our baby has full Trisomy 13, a syndrome that happened completely by chance during conception. Some cases result because a parent is a carrier, which wasn’t the case for our daughter. Her disabilities were caused by the T13, a problem that is deadly all by itself.

Trisomy 13 is considered “incompatible with life.” Most of these babies are miscarried or pass away in utero. If they are born alive, the median life span is 2.5 days. Some of these children make it longer, but a large percentage pass away before a year of age. This is not a very common syndrome. I can’t seem to find consistent information on how often it happens, but many sites say 1 in 10,000 births. To be part of that tiny percentage - especially considering that I do not even have the risk factors: genetics, increased maternal and increased paternal age - was mind numbing.

There was never a question for us about what we needed to do. I knew in my heart what was right for us, our beliefs, and our little girl we have named Kinsley Marie. Although in many ways, it is the harder road, it was the only one that I could live with. I have made the decision to carry my daughter throughout pregnancy and care for her as I would any child. She is my first baby and I want to mother her in every way I can, even if it's not in the ways I had planned for. We don’t know what is going to happen. Every day with her kicking and squirming is a gift from God. We pray for miracles, knowing that He can grant them if it is His will. We pray for the strength, perspective, and wisdom to endure this heartache. The only thing that I know for certain is that Kinsley is my daughter and that she deserves to live, so I am “Keeping Kinsley” as long as God will allow.

This blog is for anyone whose child has been newly diagnosed with T13 or another illness, people who have been through it or are currently going through it. It is also for friends and family who are supporting us in this time. It is even for strangers who maybe can learn something about life through this story. Mostly, it is to get Kinsley's story out there and change someone's life somehow. This was an extremely long post to start off and I'm sure future posts will be much less time consuming for those of you who would like to follow us on this roller coaster.

Pictures from the gender reveal party we had the night of our first ultrasound. <3