A Letter to our Friends...

This is a letter which we sent out to close friends and family to inform them about our little boy's condition. We've realized many of you would like to know "the latest" but don't want to bug us, so we've started this blog to keep you updated. Please know you can ask us how we are doing without offending us and we'll share as much information as we are comfortable with.

Now for the letter:

Friends & Family:

Most of you know we are expecting a little boy in December/ early January. Several months ago we found out that our little boy ended up with an extra #18 chromosome (Trisomy 18), which has wrecked havoc on his tiny body. This extra chromosome means that every cell in his body has extra information encoded into it. The extra information causes confusion in the way that the cells were formed and results in the potential malformation of all of the body systems. Just like with Down's Syndrome (Trisomy 21), there is a wide range of how this condition will play out. Unfortunately, because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down's Syndrome. Only 5-10% of babies with Trisomy 18 will reach their first birthday. Our hope is that our little baby will be born alive and that we can spend some time with him. We have a 50% chance of carrying him to term and if born alive, we may have 5 minutes with him, 5 hours, or 5 days and the slim possibility of having him live a few months or even longer.

Our little boy has many visible problems and we know there are many that we cannot assess until after he is born. Many babies born with Trisomy 18 have difficulty feeding and their body forgets to tell them to breathe, which is one of the main reasons they pass away.

I have loved carrying this little boy and try to treasure all his movements. Each time he kicks I think, "Kick harder!" We have felt a deep sense of peace and at times are sad and cry, but we are okay. We believe the hardest time will come later. Right now we're preparing a room for him and gathering a few items for him. The girls wanted to buy him a journal and we've done that and are doing other things with the girls to help them. At the same time we're also preparing to say our goodbye's.

Three years ago we started wondering aloud if the experiences we were having were in preparation for us to lose a child and now we find ourselves here. We're grateful for those experiences/preparation and the people we've learned from. Our friends handled their situations in such neat ways and we're trying to do the same. We're hoping to make this as sweet of an experience as we can.

We're glad to have him be a part of our family and have no regrets in having him. We now pray for time.

We love you and are so grateful for your love, support and friendship!