Project Macy, Part 2

Last month I wrote about a new family tradition that involved making it through the month of January. Why January? Because January is the roughest month of the year for me.  

I spent January of 2009 on self-imposed bed rest. I was determined (despite gaining 50 lbs and 7½ liters of amniotic fluid and basically having my short torso enlarge big enough to be carrying triplets) to carry Macy to term. Why? I think in my head she had a better chance of survival if she was full term.  

And I’m not sure what I mean by survival. Because of course in my heart and in my head, I knew that Macy was going to die. If you don’t know the specifics because you didn’t know me back then or you’ve skimmed my previous posts about infant loss, Macy had Trisomy 18. Most babies with Trisomy 18 don’t make it to their first birthday. In fact, a lot of pregnancies with babies with T18 end in miscarriage. Perhaps other early miscarriages can be attributed to T18 as well.  

Add to that Macy had a congenital diaphragmatic hernia. When I found out, my heart sank. Somehow I was hoping that we’d be able to bring our Macy Button home, even just for a while. Taking the ‘doctor-speak’ out of it, because of the diaphragmatic hernia, Macy’s lungs didn’t develop properly. Infants with CDH need to be placed immediately on a ventilator until they are stabilized for surgery. They also need to qualify for ECMO—a heart-lung bypass machine, which with T18, she didn’t qualify for. Plus, no surgeon would operate on her, I’m sure. And I wouldn’t have wanted them to—why put her through that suffering when I could spend that time peacefully with her instead?

I’m going to tell you something that I haven’t said to anyone, except my husband. There was a point when Macy was gasping for air that I started to panic. She was breathing quickly and couldn’t breathe—in essence, she was dying and there was nothing I could do about it. It wasn’t as peaceful as I would have hoped, and I even pulled aside Dr. B (Macy’s neonatologist and my friend, and, I believe, the sole reason why my husband and I were able to meet Macy alive) and asked her if we needed to do something. We debated morphine, which would hasten her death.  Was she in pain? I’m still not sure.  

In the end, Macy died in a room full of love, in her mother’s arms. I like to believe she felt this love all around her. I certainly did.  

Last January, one of my good friends listened to me babble on and on about the specifics of Macy’s short life. Thank you, Andrea, for letting me talk about her. This year, thank you to you readers, for letting me write about my daughter once again.  

On New Year’s eve, we finally started Project Macy—our own version of an advent calendar that we are using as a special countdown to Macy’s birthday. Each day we’ll open an envelope. Each envelope holds a quote about love or hope or family or determination. All from books, of course. After all, we still are bookworms. And I’d like to believe our Macy Button is one too.  

Once again, thank you to Art Camp LA for the inspiration for this fun art project (from her advent calendar post) and new Bookworm family tradition. (PS Arielle, you may recognize some of these envelopes.  :D)

Melanie Tioleco-Cheng | January 12, 2017