The Story of a Broken Heart
At our routine 20 week ultrasound Luke and I were told that they could not get a good picture of our baby's heart. We were told not to worry but we were being referred to a perinatologist for a level 2 ultrasound. The level 2 findings were not so promising.
The Dr. told us our baby has 2 holes in it's heart, also known as Atrioventricular septal defect, or AVSD. As if this was not devastating enough, the Dr. continued on to say this defect is commonly found in babies with Down syndrome or with other chromosomal disorders. She explained that our baby had several other ultrasound markers indicating a chromosomal disorder and that in her professional opinion our baby most likely had Trisomy 21 (Down syndrome) or Trisomy 18. We were given the option to have an amnio to find out an exact result. Luke and I were too emotional at that point to make any decisions so we decided to go home and think about our options. After reading about Trisomy 18, and discovering the heart wrenching fate of these babies (most do not survive delivery or live hours, possibly a few days). We decided to have the amnio.
We were able to get early results after 48 hours, which confirmed our baby does have Down syndrome. While the news was heartbreaking, we were happy to rule out Trisomy 18 and know that our baby is expected to live a full and joyous life. As the initial grieving has worn off, we have learned so much about the wonderful things ANY new life brings into this world. We are so blessed to have family, friends, support groups, and great Omaha resources and medical care to help us along our new journey. We cannot wait to meet baby #3 and know that this gift will bring our family closer together and make us stronger.
I, of course, am hoping for dark, curly hair and Luke changes his mind daily on whether or not he thinks the baby is a boy or girl based soley on my mood and what I want for dinner!
Awkward
Honestly, one of the hardest things about finding out our baby has Down syndrome has been telling our friends and family. It is awkward and people don't know how to react or what to say. I feel like I relive the torturous weeks of ultrasounds, tests, and waiting for results everytime I tell the story. I just want everyone to know that you do not have to be sorry or feel bad - because we aren't. This baby is a blessing and we are doing everything we can to prepare for the journey that lies ahead. We appreciate everyone's kind words and support and want you to know that saying "Congratulations!" is still okay or "Can't wait to meet him/her!" is just fine. The Janke clan would love your continued prayers and positive thoughts for our baby's health and uneventful welcome into our world!
The Next Step
We meet with the pediatric cardiologist at Children's hospital on September 30th. He will perform an echocardiogram of the baby's heart and give us a better idea of when surgery will be. As scary as heart surgery on an infant sounds, I have been comforted by reading lots of promising stories. The surgery is *typically* done between 3-6 months of age (and the baby should seem generally healthy up until the surgery). The baby is *usually* sent home in less than a week. I am anxious to meet with Dr. Danford and learn more about how he will fix our broken heart.
4 comments:
Dear Leah and Luke,
When we got message from your parents about Grandchild # 3 I immediately thought of Amy Barmann and the joy she has brought to all who have known her throughout the years. You will now have 3 beautiful children who will teach each other the lessons and joys of life. We are looking forward to meeting Precious Baby Love in the coming months.
Love, Mary Jean and John
Hi Leah, Luke and I graduated high school together at Gretna. My name is Jess (Gregory) Wells. Congratulations on your new addition!!! I saw this link on Jill's fb page, so that is how I found you:) This baby will be a wonderful, amazing addition to your family! I don't know if anyone has every told you about Kelle Hampton's blog, but you may want to check it out. She has a little 1 1/2 year old with Down Syndrome and she she writes about family, faith, and just day to day things. My husband teases me that I am addicted because every time there is a new post, I get a super excited. I hope the rest of your pregnancy goes well and I am sure you are excited to meet the new addition!
Congratulations Leah and Luke! You will definately be busy with three little ones. Hopefully you have a sibling like Bridget does (me!) who loves to help babysit three kids :) Also wanted to tell you that Baby Janke's scar from open heart surgery or "zipper", as us heart kids call it, will just be a reminder of how strong he/she is. You are very lucky to be in Omaha and have great pediatric specialist so close by. My prayers are with you for a great pregnancy and all that comes after!
-Meggan Johnson (Bridget's little sister)
http://www.kellehampton.com/ take a look at this blog and read the birth story of Nella. She too is a gorgeous child born with down syndrome. I wish you all the best xo
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