35 weeks of unknown

For those who don't know the background story of Helena and Lucie, I'll fill you in a little. When we found out we were having twins again and that in fact, something was seriously wrong with one of them, our world came crashing down. But anyone who knows my husband and I, knows we're really rational, practical people. We didn't start praying, as we're not religious, we started asking about risks and statistics. Any way we could get our hands on solid, absolute information and we were there. When something like this happens to you, you move from the category of "oh I have cankles now and I keep puking, woe is me" to "I have one healthy baby and one baby who will probably die and I have to do what I can to save one." There's nothing like forced perspective to keep you inline. Of course we're not cold individuals. Our mourning process began in that single instant. My husband is a physician so there was no candy coating anything. Every discussion was dominated by how are we going to save Helena? What are we going to do to ensure she will remain healthy and come out ok? Had there been a way to save Lucie, we most certainly would have done that. But after visits to specialists in both Detroit and Cincinnati, it became clear that this pregnancy was going to be a bittersweet one. In utero, Lucie was fine. She actually trucked along quite well with her sister. They were avid kickers and thumb suckers. But we knew that as soon as she was taken out of the most hospitable environment she'd ever know in her short life, all of that would change. Lucie had a giant omphalocele which contained her liver, and part of her bowels. It was covered with a membrane. Her abdomen simply did not fuse properly so it resulted in a large hole with her internal organs on the outside of her body. As a result of this giant sac of large organs on the outside of her body, the internal organs that were still inside suffered. Her heart was pushed up into her chest cavity. Her lungs would never develop properly. That part there was what sealed her fate. Everyone always says they'll do anything to keep their loved ones alive, but keeping a premature infant alive on life support that she'll never be able to come off of, for us, wasn't heroic, it was inhumane. I don't judge other parents who do that. You never know what you will do until you are thrown into a situation like this. These weren't Lucie's only issues though. In addition she had a severe 90 degree scoliosis. When I look at the photos of her as she was removed from my uterus, I can see the severity. She had a meningomyelocele, which means her spinal cord and back didn't close up properly. She had some other issues as well, but those were the three major ones. When she was originally spotted during the first scan at 11 weeks, they thought she was actually fused to my uterine wall. The fear and concern on everyone's mind for my pregnancy was that if Lucie died in utero, the drop in blood pressure from her death could potentially result in brain damage for Helena. There was a host of blood issues going on the entire time because they were identical twins in the same sac, sharing a placenta. WIth each passing week came more ultrasounds, more dopplers, an MRI, non stress tests, etc etc. With each test they hoped to gain a better picture of what actually was going on in there, but unfortunately, the bigger babies grow and the more there are in utero, the harder it is to make things out clearly. During this time we had to make a birth plan for Helena and one for Lucie. Because Helena was completely healthy we decided for her, if she came out and wasn't breathing, use the heroic measures. In the case of Lucie, we knew that even if we did that, she'd never make it. It just wasn't her fate to walk this world. So we chose to hold her, to love her, to whisper sweet nothings in her ear. We'd just be with her, the only time we'd ever get to be her parents. The 35 weeks the girls were in me were terrifying and peaceful. Tragic and beautiful. As the time got nearer for their delivery, I grew more sad. I knew my time with one of them would soon be over. I treasure every kick, punch, and hiccup. I treasure the times her older brother came up to my swollen belly and talked to her. I treasure all of it, the good and bad, because it's all I have of her.