Patience

I knew the next phone call from the hospital was going to be the results of the preliminary FISH test. I had prepared my mind for the moment the genetic counselor said, “Positive for Trisomy 18,” but it was still painful. In the following weeks, the amniocentesis would confirm that Tessa had “full” Trisomy 18. Every cell that she was made of had an extra chromosome, resulting in her internal problems. The genetic counselor and I had a long conversation regarding my choice to carry. To my surprise, she was more than supportive of my decision and offered information for a local non-profit group for support, and wanted to give me a book she thought might be helpful for me about carrying a sick baby to term. After I declared that I wanted to continue the pregnancy, the doctors wanted to keep a close eye on me to monitor Tessa’s growth, especially her heart.

The specialist wanted me to see her every other week, and see my OB/GYN the weeks in between, because I was at a higher risk for developing preeclampsia and other health issues. God definitely made sure that I at least would have people that I could lean on. My regular OB had been so supportive through my past pregnancy losses, and he had proven to be trustworthy with my health. I never felt I ever had to sugar coat or tone down any questions or concerns I had for him. I was happy that I would get to see him so often now because I knew he would look after me. I was so relieved to know I had a familiar face who was already familiar with me and my medical history.

One thing I must say, especially for any readers looking for similarities between their pregnancies and my own, is this: just like every normal pregnancy is different, so is every baby that becomes a high risk situation. You do not know what will happen. What happened to me, might not happen to you. Keeping your mind and heart open is the key to sanity. Trusting your body, listening to your motherly instincts, respecting your medical team’s training and knowledge, but also having a medical team that respects you and your decisions, are all major factors of why I ended up having a positive mindset in such a negative situation. If I’d had bad or indifferent doctors and nurses, I do not think that I would have walked out of this even half as positive as I did.

In the first few weeks after her preliminary diagnosis, the first hurdle, emotionally and mentally, was trying to process that I may never bring home a baby and trying to prepare my heart for that the best I could. I tried to balance the anticipation that she may die with the possibility that she might live. And if she lives, what kind of care would she need? How many surgeries would she need right away? What else could be wrong with her that might need to be fixed?

The second hurdle, was being around other people. In the first two weeks, besides my immediate family and a couple of close friends, I secluded myself from the world. I didn’t want to talk or have people look at me and ask questions. When I finally got the nerve to go out in public, I was waiting at the checkout line with my daughter when a couple women in line asked how far along I was. I paused. Five-and-a-half months, I said shortly. You must be so excited, is this your second? I wanted to run out of there. I didn’t want to start explaining everything to complete strangers, so I just said yes. And left it at that. It ate me alive.

That night, after my first public outing, I cried alone in Tatum’s room. We had already switched Tatum from her first small bedroom to a bigger room in our house to accommodate her bed and crib so the girls -these sisters- would have “their” room. I had spent hours picking out paint samples, and my husband had already painted the room. I had argued where the best place was to put the crib. That argument was now such a small, stupid thing to worry about compared to the bigger scheme of things. I had picked out bedding. I had pulled out her bassinet. All of the fun things that you get to think about were now on hold. I sat on Tatum’s bed holding a newborn outfit, looking at its little flowers and wondering if Tessa would ever get to wear it. I sat in the room mourning a baby girl that may never get to see what I had prepared for her. I thought to myself that my womb may be the only place she would ever know her mama’s comfort. I was determined to talk and sing to her while I could through my belly. I prayed that God would just let me meet her. And at that moment I decided I would try my best to limit my sadness and let her feel what happiness I could until she was here.

Once I started gaining some positive headspace, I was able to be around people again a little more freely and it bothered me less and less when people asked questions. I realized that questions like, “Why can’t they just operate?”, “What are they doing to save her?”, “Oh wow, I would have terminated,”, “Why are you carrying?”, “Can’t they just fix her and give her a new heart?” “She’ll be fine, doctors don’t know what they’re talking about.”, “Why would you tell people she has that?”, “Did you give it to her?” “Was it something you guys did?”, came with sharing the news. I have this deep understanding that people who ask questions are just curious. Sometimes people are malicious and sometimes they just lack social skills to know they are being inappropriate. Still, I felt like people did not understand her condition or how severe the situation was. Maybe in those first few weeks of being diagnosed, I didn’t know how to explain it. But one thing was certain: people did not know the demons I fought every night who would come to try to steal my inner peace.

In those first few weeks, I had asked God to not let me internalize the outside world or think too much about people’s questions. I prayed for patience and I felt this was His first gift to me. I found patience. Patience for people, patience for myself, and patience that things would work out how they were supposed to. And most importantly of course, patience for the unknown. Without the gift of patience in its many forms, I especially would have gone crazy waiting for each appointment, even though they were only six or seven days apart. I knew that when I chose to carry Tessa, I also accepted all the things that came with it, and I was ready to accept all of it with no complaints. I asked God to carry my extra baggage so I could freely carry Tessa.

At 23 weeks, 2 days, I had my first official appointment as a “high risk” pregnancy patient. I was scheduled to see the specialist, the same one I had previously met, and I returned to Room 1. This room would become my portal to Tessa. After careful documentation of her growth, her heart, and her organs, my specialist said she would offer 3D pictures for each visit, and explained that she wanted to help create some memories for us, since Tessa was at high risk for being stillborn. My specialist surprised me when she, too, would talk to Tessa. When she switched the ultrasound from 2D to 3D, I wasn’t prepared for how I felt the first time I saw Tessa’s face: euphoric. There she was. She was beautiful. She looked just like her sister, who looks just like their daddy, go figure. I was taken aback by how gorgeous she was. I knew at that moment, seeing her in 3D, that I had absolutely made the right decision to carry her, and I was going to keep on telling her to fight.

 

20170806_131350
Tessa Faith at 23 weeks, 2 days, weighing just under a pound.

 

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