Sunday, August 1, 2010

A long overdue update

It's taken a while for me to be able to put together this post. We definitely have some things to update, but sometimes it's easy for me to focus so much on the scientific and the medical details (maybe too much?), but this last few days have been the most emotional we've experienced on this journey. So figuring out what to write has been hard.

Alas, here are the details: last Thursday we got a call from the Genetic Counselor and they had received the results from the amniocentesis performed two weeks earlier. I was surprised they gave them to us over the phone, but nonetheless, Juan was at work, I was in my car parked at Mount Hermon, and we talked to Stephanie on a three-way call. She shared with us that they did find a chromosomal abnormality. It's called Trisomy 18, and it means that our baby has 3 copies of Chromosome 18, rather than the normal 2. It's a condition the doctors consider "not compatible with life." 98% of babies with Trisomy 18 do not survive pregnancy. Of the small number that are born, their lifespan is typically only seconds, minutes or hours.

We had an appointment on Friday, where we did an ultrasound and saw that the baby's heart was still beating. Dr. Taslimi also pointed out that the swelling has extended even more into her arms and legs. He appeared very sad as he let us know that our baby's swelling is so profound that medically, the doctors only expect her to live in utero for only a few more weeks at most.

Unbelievably, we spent most of our appointment with the genetic counselor talking about the whys and hows of gaining "closure" in a situation like ours. I was surprised yet grateful that the medical establishment placed so much emphasis on this. We have lots of ideas and some potential plans, but most of all, we now know the importance for our emotional health long-term of processing our grief for our baby.

So...that's the factual update, and here's the emotional one: we are so very saddened and also emotionally exhausted at this point in the journey. We have another appointment tomorrow with my regular obstetrician, and we'll probably start having weekly ultrasounds with her, but at this point the purpose of the ultrasounds is to look for signs of life. And unless science, medicine, and statistics are proven wrong in our case, one of these next few weeks, the doctor will look at us and say, "I'm so sorry."

It's safe to say we're "preparing for the worst" and in doing so, the waiting is really difficult. However, I've said it before and I'll say it again, but both Juan and I deeply believe that despite all the pain that we've experienced up to this point, and despite the pain that we know could be in our future, we believe that God can and will bring healing to our broken hearts. It won't be easy or pain-free by any means, but we do believe in healing.

One closing note: we just wanted to say thank you to all of you who have been so supportive and loving towards us in this process. We can't imagine going through this journey alone, and our hearts will forever be grateful for the love we have received from people like you. Thank you.

2 comments:

  1. Oh, Shelly.... I'm so, so sorry to hear this news. I will be praying!! xo ~ Cheryl

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  2. Shelly, I've just learned of your very difficult journey today thru the church prayer list. I've just finished reading your blog entries and am very saddened to learn of your precious little one's situation. I know what a blessing Olivia is to you both, as much as Aubrey is a blessing to us. And I know that you will continue to look for the blessing of this as well. I'll be praying for you all, to find peace and comfort in the coming weeks. Love, Kimberly Bonds

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