Friday, September 30, 2011

No Need to be Broken Hearted...

We met with Dr. Danford at Children's Hospital today and he performed an echocardiogram of our baby's heart.  The appointment went pretty much as we had expected.  Although, Baby J's active movements were not making it easy!  Dr. Danford confirmed our baby has a Complete Atrioventricular Septal Defect (AVSD), a heart defect commonly found in babies with Down Syndrome.

What is a complete AVSD?
  • A large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body.  The defect allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation. (

Dr. Danford was very positive and told us that besides the septal defect, the rest of the heart looks good.  The success rate for the sugery is 99% and only 10% of patients require another heart surgery later in life.  

The surgery will most likely be performed any time between 3 weeks and 3 months after birth.  We will know the time for sugery is imminent when the baby starts having trouble eating and breathing properly.  This time can vary depending on when the heart's natural resistance to the incorrect blood flow begins to wear down - but, until then, we should expect a normal, loveable, baby!  The recovery time, in the hospital, is usually 5-10 days and the baby should be 100% back to normal within a few weeks.  

Dr. Hammel or Dr. Duncan, a team of pediatric cardiothoracic surgeons, will perform the corrective surgery.  We have heard nothing but good things about them and have been reassured our baby will be in great hands.  

We look forward to welcoming Baby J into this crazy world soon - only 3 more months to go!

Sunday, September 25, 2011

Giddy Up

We had so much fun checking out the 4 H animals and playing in the Kid Zone at the River City Roundup!

Monday, September 19, 2011

Thursday, September 15, 2011

Welcome Home Daddy!!!

The kiddos and I are very anxious for daddy to get home tonight!  We worked hard making him a sign last night. Wyatt was very concerned about were daddy had gone on his trip (Las Vegas) and what sort of prize he was going to bring him...haha!  It sure makes you appreciate your other half when you have to do the parenting on your own!

Friday, September 9, 2011

Wyatt Starts School!!!

Wyatt had his first day of one day a week "school" at Bethany Lutheran Church in Elkhorn.  I was so nervous last night - Will he be sad??   Should I send his milk (like his security blanket)??  Will the teacher remind him to go potty??

I am so glad to report all my worries were unwarranted!  Wyatt waved good-bye to me with a big smile.  When daddy picked him up, he was in a great mood (and was still in the same shorts and underwear!)!!!  He was happy to announce he had made new friends and his teacher was nice, although he could not remember any of their names.  LOL.  Wyatt was hoping tomorrow was a school day, too!

He was being a stinker this morning and refused to pose for a picture so this is as good as it gets!

Decked out in his "toad" backpack from Grandma Sue!

Sunday, September 4, 2011

Thursday, September 1, 2011

Baby Janke #3

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!


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.

A little information about Down syndrome

Down syndrome is named after Doctor Langdon Down, who made new discoveries with the syndrome in 1866.  Down syndrome is also known as Trisomy 21 - meaning 3 copies of the 21st chromosome.

Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome.  There is no known cause or prevention of this extra chromosome.  

The additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies is born with Down syndrome.
  •  There are more than 400,000 people living with Down syndrome in the United States.

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems.  Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

*Information taken from the National Down Syndrome Society -