Truly Unexpected

We received the preliminary results from the amniocentesis today. The diagnosis is triploidy. I am still somewhat in shock. It's not at all related to the balanced translocation, and appears to be a very, very rare fluke. It's a birth defect in which every cell in the body has three of each chromosome instead of two. So it's a trisomy of everything, not just one chromosome like Down's Syndrome or trisomy 13. There is a possibility that it's mosaic triploidy, in which some cells are normal and some contain 3 copies, and that is less severe. There appears to be less than 60 cases documented world wide, although I am seeing a lot of articles and blogs with that figure mentioned and no statistic to back it up so far. There's a chance that the baby could live months or, very unlikely, but possibly, years, with the mosaic form.

I am experiencing so many fears and emotions. Some are similar to when Peter was diagnosed, and some are different and somewhat unexpected. Mostly I still feel stuck. While I am glad to have information (information is like a drug for me....I can research something for hours and hours and still hunger for more details. I need every scrap of information I can find) there is still a lot we just can't know. Full versus mosaic is an important piece of the puzzle. But more than half of babies with this diagnosis die in the first trimester. I am already 17 weeks. Most who make it that far still won't make it to term alive. So, unlike with Peter, we have no idea how long we have with this baby with us- days, weeks, months, or even years. It's very stressful; even just thinking about planning out-of-state trips to see family or weekend getaways are fraught with "what-if's".

On a happy note, the baby is a girl. Stay tuned for the name :)

Here we go again

I'm pretty sure we are insane. 

Because here we go again. We are in our sixth pregnancy. I am still somewhat in shock that I have been pregnant six times, and you would never know it by the number of car seats in my car or dining room chairs at my table. In order, we have Julie, Natalie, miscarriage, Peter, miscarriage, and this little soul yet to be named. I am 17 weeks but I don't look like it. That's because the baby is measuring closer to 14 weeks. There are echogenic foci on the heart (thank you Google....I'd never heard of them either), and the ventricles in he brain are enlarged. Isolate them and they don't cause major concern. Put them all together and they are pretty strong indications of a genetic condition. We, of course, fear the worst. We don't know for sure yet, so Steve and I decided to pray our hardest for a miracle. We spent the Solemnity of the Sacred Heart of Jesus asking for a miracle, a complete and total healing of this baby in my womb, for the grace of a healthy son or daughter. 

Am I insane? Because it kind of feels like it. But that urge, that desire to grown one's family, it's somethings just so much stronger than the fear of the unknown. I've never felt like my family was complete. Even after everything we've been through, and the odds that we've been given (which I now think are total crap, by the way) we were willing to take that chance, just having faith in a loving God who always cares for us and knows our needs. But I was so sure, we were both so sure that this would be the one. This would be the healthy baby that we have so longed for. Still we pray and hope. And feel a little insane. 

October 15: Pregnancy and Infant Loss Remembrance Day

I'm coming off a long blogging hiatus to talk about Pregnancy and Infant Loss Remembrance Day.  Some say the subject of pregnancy loss is taboo. I don't know if I agree. I think it's just very personal. Early miscarriages happen before many even share their news, and before a swollen belly gives them away. But there are still people who are uncomfortable at the mention of someone's loss, and what a shame that is.

You needn't worry that your bringing up of someone's lost child will make them sad or remind them of their loss. Quite the opposite. They will be overjoyed that someone remembered their precious child, that someone took the time to say "thinking of you". They didn't forget that they lost a child, that there's a hole in their heart that will only be filled in heaven. You don't remind them; they couldn't forget if they tried.

Will you take a moment to pray with me for all those moms, dads, bothers, sisters, or grandparents who are grieving a child they never got to know?

4 months

It's been 4 months since Peter was born. Four months. One hundred twenty three days. Two thousand nine hundred and fifty two hours. But it feels like a lifetime ago. Or yesterday. Time is funny that way. And on this day, four months later, I am preparing for a Christmas without him. Last Christmas, he was safety tucked away in my womb. None of us knew at the time that he wouldn't be alive and well the following Christmas. We never dreamed we would still be a family of four on Christmas in 2012. And I can't help but think of those 26 families who also didn't know they would be celebrating Christmas without their loved ones this year. The devastation and grief and abandonment they feel is unimaginable, indescribable. The bond we have with our children is like no other. We can only take comfort that those children and teachers, like my Peter, are celebrating Christmas this year with the One True God. They will be in Jesus' arms, will witness the heavenly celebration, hear the angels rejoicing. And God willing we will, too, one day, with Jesus and our beloved children. I pray for all those mourning the victims of the Connecticut shootings. May God comfort them now and always.

Blessed are those who mourn, for they will be comforted. Matthew 5:4

Lord have mercy. 

It's Advent!

I am honored to be featured on this, the first day of Advent, as a guest writer on CatholicMom. With some great editing by my friend Anne, I think it turned out beautifully. I'm so proud of it, and humbled that people actually are reading it!

Joy in the Midst of Suffering

Where is the time going! Christmas is only a month away. Julie was so excited about putting up "Peter's tree" so we bought a potted Alberta pine on Friday and hauled it and all the accompanying decorations to the cemetery on Saturday. We all enjoyed the first Christmas activity of the season, and enjoyed doing something special for Peter.

Merry Christmas, Peter! We love you!

Newspaper article

Maria Wiering from the Catholic Review wrote a wonderful article on Peter and our story. I am amazed at the number of people who will learn about Peter, be touched by his story. It's truly awe inspiring. I love that his memory is being kept alive and that more people are going to know about our journey. I pray that people will read our story and realize they, too, can carry their child to term after receiving a severe prenatal diagnosis.

Photographs

For families who lose their child to a fatal condition, photographs are so very important. They, along with pieces of clothing or foot print molds, are often the only things we have to remember our babies by. Now I Lay Me Down To Sleep is a wonderful organization staffed by volunteers who take pictures of babies who are stillborn or expected to die shortly after birth. Our photographer from Heartlove Photography took some truly amazing images of Peter that I would like to share with you all.