Thursday, June 9, 2016

It's a girl! And the genetic test results.

It's a girl! I don't always trust my intuition, but I had a really strong feeling that this baby was a girl. I feel like God named this baby. From early on in the pregnancy, I knew she was a Bethany. It's not a name that has ever been on one of my baby name lists, so it was a bit of a surprise. But it seems fitting for this baby, to be named after the city where Jesus spent so much time, and where he raised Lazurus from the dead. It means House of Song and House of Affliction, which also seems appropriate as I pray that Bethany isn't suffering, and know that Jesus will raise her from the dead and take her to live with him and her siblings. Julie is choosing the middle name, and is still undecided, but Faith is on the short list.

The bigger shock was the results from the CVS test we had two weeks ago. We were fully expecting to receive a diagnosis of full trisomy 13 based on clinical findings on ultrasound. The brain, kidney, and heart abnormalities are hallmarks of full trisomy 13. But it's only partial. She has the same genetic makeup as Natalie. My first thought was what a miracle Natalie is. Natalie is so healthy, and yet Bethany is so sick. Aside from some minor issues as a newborn, and needing to have her tonsils and adenoids removed due to obstructive apnea, she has not had any health problems. Her presentation of partial trisomy 13 has been nearly all developmental. It's really astonishing that the same genetic disorder can lead to such severe symptoms leading to death in one child, and yet Natalie can be well enough to ask for french fries on her iPad as she gets off the school bus. Genetics are a really interesting, sometimes confusing and terrifying, and always fascinating thing.

Bethany is really moving a lot. I find myself worrying about her frequently, whether she is in any pain from the lack of fluid. I know she is very tightly curled in my uterus. I have prayed to God through tears to take her now if she is suffering at all. But for now, the pregnancy continues, and we prepare to meet her, and say goodbye, and bury her with Molly, Peter, and Sarah, who we lost at 7 weeks. Some days I can't believe we are going down this road again. Some days I even let myself wallow in self pity, just for a while. And then I remember how lucky we are that losing so many babies IS rare, that generations of mothers before me probably took it for granted that not all their children and nieces and nephews would make it to adulthood. That doesn't make the grief any easier, any less, but somehow it makes me feel less alone.

For now I try not to think about it too much. I know we have to purchase another cemetery plot, and hope the one next to Peter has remained reserved for us. I have to choose readings, and songs, and burial garments all over again. I remember acutely doing all of this the first time. I remember all the people I reached out to, the organizations that exist for no other reason than to support people in my position. But I haven't done that this time. Why? I am not sure. Other than that I feel like a veteran. I not only carried Peter for 42 weeks, but then Molly for 19 weeks. What could they tell me that I don't already know? Somehow it feels sort of like how the second babies rarely get baby showers. Sure you don't need the gifts, but why don't we celebrate their lives as well? Oh, you're losing another baby? That must be tough. I wonder to myself, does that make it easier, or harder? Should I be able to deal with this smoothly and unemotionally, because I've already done it? Somehow I think its the opposite. If I really think about it, if I really, really, consider that I'm going through all this yet again, I would completely crumble. So I build a small wall. I go about my daily life, and lie to myself a little. I tell myself it's really not THAT big of a deal because I came through this once, so clearly I can make it through it again. But then I spend so much time NOT focusing on what's happening, that I forgot it's not just happening to me. This baby has sisters, a father, grandparents. And then I remember how completely crappy and unfair this entire thing is.

1 comment:

  1. You close your post with "how completely unfair this is". Yes. It's beyond unfair. Two loving parents who want to grow their family, and yet, you face this tragedy once again.

    As the Mom of two special needs children, I sometimes see families with lots of little kids - correction: healthy little kids - and think "why them?" and "why not us?".

    And then I remember that God has a plan for us - for all of us - and I must trust in His plan always.

    At least for me, your faith, your strength, your courage and your vulnerability, encourages me, sustains me, supports me, and - most of all - grows my love of God. I know He has a plan for you and your family. May he continue to bless you all richly with His love and grace. - Allison Snow