Four months ago today we met the most beautiful baby. Four months ago today our lives were forever changed.
I know my life is completely different then before she came, but I can’t seem to bring myself back to holding her. It all feels like a dream. I long to hold her and hug her and kiss her sweet face SO much. Sometimes at night when I am sad I feel like she is with me. I can feel her head on my shoulder and she is telling me “It’s OK, Mommy, I’m right here.” And I try to keep her close to me always, in all I do. I am trying to make my sweet Noelle proud, somehow.
We received our final autopsy results last week. After nearly 4 months of waiting and after SO many negative results, I assumed that we wouldn’t find out anything that caused Noelle’s hydrops. That is what I was prepared for. And I kept thinking… “we will never know “why”… I want to know “why””.
But now we have an answer and I wish I could go back to not knowing “why”.
Alex and I are both carriers of a recessive gene mutation in PIEZO1. The likelihood of us both being carriers is <1%. Noelle inherited this recessive gene from both of us and this is what caused her Hydrops. The research behind this is very new. If it were 3 years ago, Alex and I may not have an answer as to “why” as this gene was JUST beginning to be studied. But it is believed to play a significant role in the lymphatic system and so Noelle could not properly regulate her lymphatic system with this mutation. The likelihood of this happening in a subsequent pregnancy is 25%. This information has been torturing me for the last week.
Do we have kids and take the risk that our child may very well suffer and die as Noelle did? Do we risk that heartache for ourselves and our child all over again? Do we not have any more children (I’ve always wanted a big family)? Do we adopt? Do we try IVF with PGD testing so that only those embryos without this mutation are transferred?
We are leaning towards the IVF option. I have been tearing myself apart over this. When does life begin? Am I playing God? Does this mean that I regret having Noelle? I do NOT agree with this to test for gender, eye color or other features and to weed out certain disorders that ARE compatible with life.
I never really thought about IVF so deeply, I always agreed with it if someone was infertile- I honestly just always thought “everyone deserves the chance to have a family” but I guess I never thought about the embryos in such great detail and what the embryos deserve. What happens to the embryos we don’t use? This is where I am having the most trouble. I have always considered myself prolife ESPECIALLY after Noelle. We heard her heartbeat at 8 weeks and that was it for me… I know a heartbeat=life. But what about before then? Is it just potential for life? These are REALLY hard questions. And I have been back and forth so many times, analyzing every decision. But at the end of the day the fact remains that I want a family, my husband wants a family, here on earth. The fact remains that we buried our first-born. The fact remains that today as I remember her life and her death I remember her suffering. I remember my suffering. My hearts breaks all over again. Every. Single. Day.
Maybe it is the selfish decision to not have to bury my next child. Maybe it is against my religious beliefs and against God’s will. But maybe not. And I don’t think anyone here on earth knows for certain what God’s will is.
If it weren’t for medical advances SO many people would not be here today. In my current job, I help keep people alive on a ventilator. Of course there are times where I have questioned if we are doing more harm than good for the person. Every case is unique.
In my case, I am trying to remember why we are choosing this path. We do not want another one of our children to suffer. We do not want to watch them suffer.
I believe God will have the final say. He is still there right alongside the medical team and whatever outcome happens, I know it will be because of Him.
Maybe my path in life is not meant to have living children here, but it is not something I am willing to give up on yet. So our journey with IVF/PGD starts now. The road ahead of me just got a little longer, a little darker, a little more complicated. But hopefully there is a light at the end.
For now, I know my sweet baby Noelle is watching over us. I know that she is helping to guide this path and guide these decisions.
I miss you sweet baby. I miss you my sunshine. Mommy loves you so much. Happy 4 month birthday in heaven.