Elena Grace

Our Elena Grace was born on January 28th, weighing 6lbs 15oz and 20 inches long.  She is healthy and we are all so relieved to have her home with us. 

After receiving the diagnosis, there was so much I was afraid of.  I was afraid I would feel more fear than love the first moment I met her and that I would never be happy again...

I was afraid that Lilly would never experience a sisterly bond...

I was afraid Jamie wouldn't be interested in his baby sister...

 
 I can't believe I was so afraid! 

Merry Christmas!

I hope everyone had a very Merry Christmas!   We were fortunate enough to have every Krueger at Mom and Dad's on Christmas Eve this year.  34 Kruegers under one roof!  The living room was overflowing with entertainment from Tom, Matt and Paul playing carols on the guitar to Tim's rendition of Christmas boogie woogie on the piano.   Everyone joined in to sing (or scream) the carols and of course, there was never a dull moment. 

Christmas morning went off without a hitch.  The kids had a late wake up, which was perfect for us since we only had a few hours of sleep after having to assemble the presents the night before. 

Lilly and Jamie had their first skating outing.  Poor Mike had to haul around two wet noodles on ice the whole time.  The kids had a blast though! 

Today we finally had snow!  

 Lilly decided on strawberries for eyes.  The snowman looks like something out of a Wes Craven movie.  Hopefully it's not a sign of things to come.  


Just a quick update on the pregnancy.  I just completed my third week of Nonstress test and have four more weeks to go!  Everything has been going swimmingly so far.  Thank God!  My doctor has decided to induce me a week early since there are higher risk factors with a Ds pregnancy.   If all goes well,  our little blessing will be here on January 29th. 

Wishing everyone a happy and healthy New Year! 

Prenatal Echocardiogram

I had my prenatal echocardiogram on the baby's heart today and everything looked great!  The baby will have another echo at birth do to the risk of a heart defect being 50%, since she has T21.  Sadly, it never gets easier seeing her on the ultra sound monitor and I now associate fetal ultra sounds with utter despondency.   I'm constantly waiting for the other shoe to drop.  Luckily she has been rockn' that extra chromosome and is growing like a weed! 

Sisters

 Sisters are such a true blessing to any family.  I am fortunate enough to have three older sisters.  Each one with their own unique quality.  One who inspired me to follow my dreams and achieve my goals.  One who shares of herself so completely and shows passion and love for those less fortunate.  And one who shows wisdom beyond her years,  humor in everything and never sweats the small stuff. 

After my diagnosis, my oldest sister Kathy came to visit.  I was so worried of what she thought of me.  I viewed myself as a failure for not being able to carry a "typical" child.  I though she would look at me with pity but, of course I was wrong.  Kathy didn't treat me any differently than she always had.  I still wasn't feeling comfortable in my own skin though.  I asked Kathy what she had thought of the diagnosis.  She talked about how nothing phases her anymore and that no matter what, this child will be a blessing.  

Early on in my pregnancy I worried about the sister Lilly would have.  I felt that she would never be able to have the sisterly bond I share with my sisters.  I waited to tell Lilly that she was having a sister until I was 24 weeks.  I took her to my doctors appointment.  Lilly sat next to me on the table as the doctor used the ultrasound machine to view the baby.  Her eyes lit up with delight as she proudly told the doctor that the baby was her sister.  

When we got home, my mom asked how the appointment went and Lilly said: "It was awesome Mom Mom, the doctor put a magic wand on mommy's belly and I got to see my baby sister.  I saw her tummy, her feet and her face."  A week after, I would still catch her telling the story to her friends at school.  Since then I stopped thinking that Lilly wouldn't have a wonderful relationship with her sister.  Sure, it may be different than the relationship I have with my sisters but, it will be just as rich and beautiful.  

Down Syndrome ~ The Cliff Notes

                                                        

There is so much information on Down syndrome and I don't want to overwhelm (okay... bore you) so, I'm just going to highlight what I feel is important to know.  

                                            Terminology

Here is a list of terms that are no longer used when referring to a person with Ds:

• Down syndrome child
• Down's/Downs baby  
• Downsy (ugh... I hate that one). 
• He/she suffers from Down syndrome or is afflicted by Down syndrome (It is a diagnosis not a disease, people do not suffer from Ds).
• Mental retardation (although medically acceptable, it's social unacceptable)
• And of course... retard

List of terms that are used when referring to a person with Ds:

• A person with Down syndrome
• cognitive disability  
• cognitive impairment 
• intellectual impairment  
• intellectual disability
• developmental delay 

These terms can be found on the National Down Syndrome Society and the National Down Syndrome Congress website.  
 
                                             Statistics

The following statistics are from a study conducted by three physicians from Children's Hospital of Boston which was published in the American Journal of Medical Genetics  

Here are the findings from the first study which surveyed the parents and guardians of people with Down syndrome:

• 99 percent of parent/guardians said they loved their child with Down syndrome
• 79 percent felt their outlook on life was more positive because of their child
• 5 percent felt embarrassed by their child
• 4 percent regretted having their child

The second study surveyed the response from siblings of people with Ds:

• 94 percent expressed feelings of pride about their sibling
• 7 percent felt embarrassed by their sibling
• 4 percent would “trade their sibling in” for another
• 88 percent said they felt they were better people because of their sibling with Down syndrome
• 97 percent said they loved their sibling
• 90 percent felt their friends are comfortable around their siblings 

The final study surveyed the response of people with Down syndrome:

• 99 percent said they were happy with their lives
• 97 percent liked who they are
• 96 percent liked how they look

• 86 percent indicated they could make friends easily 
• 4 percent expressed sadness about their life. 

Okay, since we all know a Ds diagnosis is not a life filled with rainbows and unicorns, I'll move on to the medical statistics.

                                      MEDICAL STATISTICS:

• 80% of all Down syndrome babies are born to women under 35 
• One in every 691 babies in the United States is born with Down syndrome.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
• 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. 

These statistics were taken from the NDSS website


LASTLY... There is a booklet called "Your Loved One is having a Baby with Down Syndrome."  It is from the Down Syndrome Pregnancy website.  It's a quick read, packed with useful information.  It will only take 10 minutes to read and I implore you to read it.  

Booklet for Family and Friends


Thanks for reading!  


Love, 


Nancy

Where to begin?

Where to begin?  

I thought I would start a blog for family and friends to inform you on what has been going on in our lives.  Hopefully, you will follow our journey and help us celebrate this new life that is bringing a little extra with it. 

I just want to fill you in on a little bit of our journey so far.  The day before I found out I was pregnant, my mom and I took Lilly and Jamie to Dutch Wonderland.  It just so happens that the day we were there, we saw an abundant number of children with disabilites from being severly handicaped to having Down syndrome.  I found it almost overwhelming.  I thought that maybe God was giving me a sign that two children were enough... boy was I wrong.  

The very next day, I found out I was pregnant.  Immediately I felt there was something wrong with the pregnancy.  Physically I felt exactly how I expected to feel but emotionally, I knew there was something wrong (although I use the term wrong I now look back and realize it was just different - I now know there is nothing wrong with this child).  I felt like God was giving me signs everywhere I looked.  I remember taking the kids to the library and on display were books about children with disabilities.  There would be a story in the news about a child with Down syndrome.  I would see children with Ds at the playground.  One night I dreamt about my high school friend Natalie, whose four year old daughter has Ds.  I hadn't seen Natalie in over three years. 

Before Mike and I went for our first trimester screening, I was given a take home blood work kit.  I remember how frightened I was mailing the kit off to the lab.  The day of the screening, Mike and I were the first couple to arrive.  It seemed as if everyone who came in after us went directly into the office.  I kept saying to Mike that something was wrong.  Finally, we were called in to one of the rooms.  As the technician placed her wand on my belly, we immediately saw our little bean kicking and moving all around.  Neither of our other two children were as active so, of course I also took this as a sign that there was something wrong.  The technician stated that the baby looked great.  She did not find any markers.  The technician told us that she would grab the results of my blood work and would be right back.  It was taking her an extremely long time to return and when she finally did, a doctor walked through the door first.  I immediately burst into tears.  Mike seemed a bit shocked at my reaction but, I knew exactly what she was going to say.  The doctor showed us the results stating that there was a 1 in 7 chance that our baby would have Down syndrome.  At that very moment, the baby I saw on the monitor was no longer my baby.  I had no connection to that child anymore.  The baby I was hoping and praying to have no longer existed. 

Mike and I went back to the office for the CVS the following week.  We received the rapid results (FISH results) within two days.  The genetic counselor who we met with, confirmed that our daughter did indeed have Down syndrome.  I can't even begin to tell you what a dark time this was form Mike and I.  We literally thought our lives were over.  I blamed myself for her diagnosis.  I hated myself for wanting another child.  I felt so sorry for Mike because he was in pain.  We were both so very frightened of this little girl's diagnosis.  Through the pain and the tears, I remember Mike saying: "Nance, we are going love her no matter what. She is ours!"  Still feeling that the child growing inside me was not my own, I remember thinking, how can he say that?  How can he be so sure that we are going to love her?  I didn't love her.  I didn't know her.  I didn't even want to know her.  I just wanted the nightmare to be over with.  

I am the type of person who can not deal with pain.  I needed to find a solution to this "problem" immediately.  The day of our diagnosis I reached out to my friend Natalie whose beautiful daughter Brenna has Ds.  I had to sign back onto Facebook in order to get in touch with her (I was back on FB for about 30 minutes.  Facebook is way too addicting for me).  Natalie wrote back with inspiring words about how I was a great person and going to be a wonderful mom to this precious gift.  I thought... oh yeah right, if she only knew the thoughts that had been running through my mind, she would not think I was so wonderful.  Natalie called me the very next day and if I remember correctly, the first sentence out of my mouth was: "I'm having a Down syndrome baby."  Natalie's response was: "Stop right there Nance, you are having a baby who happens to have Down syndrome."  Unfortunately, my ignorance on the subject of Down syndrome was as visible as the tears in my eyes.  I knew nothing about Ds.  I personally never knew anyone with Ds.  
Natalie and I made plans to get together the following week so I could meet Brenna and see how "normal" life is for her family.

I still had a full week before meeting Natalie and Brenna.  I was so very anxious and scared and just wanted the pain to stop.  When I was about 8 weeks pregnant, I remembered seeing a mom who had a young son with Ds at the Freedom Playground in Haverford.  After seeing her, I remember saying to God, "please don't let that be me."  Now that it was me, I immediately wanted to find that mom and find out what it's like having a child with Ds.  My mom willingly came to the playground with me that day.  As I was pushing Jamie on one of the swings, I looked over to my left and saw two beautiful boys being pushed on the swings next to us.  One just happened to have almond shaped eyes.  I turned to the woman pushing them and asked if they were hers and then asked if her one son had Down syndrome (Brazen I know but, I needed to find out more about my new world).  The mom came right up to me, tears in her eyes and told me not to be scared.  She told me that my life was about to become extraordinary and that my daughter's life was going to be purposeful, rich and an abundant life worth living.  Finally, I could breathe again!
Oh by the way, the mom I met is Mara.  She has been such an incredible support for me.  You'll hear a lot about Mara when you read my blog. 

When I finally met up with Natalie and Brenna, I was very frightened at what I was going to see.  I thought for sure Brenna was going to be so incredibly different from a "typical" child.  Of course, she wasn't! Brenna can walk, talk and play just like any other child her age.  It may have taken Brenna a little longer to reach her milestones but, she is reaching them.  She has to work a little harder at reaching her goals but, she does it with spunk, enthusiasm and a little help from Mom and Dad (oh and PT, OT and speech).  I left Natalie's with a feeling of relief.  I was still angry at how little I knew about Down syndrome.  I knew I still had a long journey ahead and needed to find out more.  

Over the next several weeks, I immersed myself in the topic of Down syndrome.  I read as many books as I could get my hands on, joined support groups and reached out to people who had a first hand experience with Ds.  I found a fantastic, compassionate and brilliant high risk doctor at Lankenau Hospital who congratulated me on my pregnancy when he met me.  
        Side note: before going in for my 1st trimester screening,  my OBGYN in New Jersey was pushing me to get invasive testing.  When I questioned him on this, he told me a story about a patient whose numbers came back high risk for Ds.  She continued the pregnancy and the baby had typical chromosomes.  The next pregnancy, she did not have any testing.  The baby was born with Down syndrome and she and her husband divorced (BTW, divorce rate of couples with a child with DS is 7.6%).  When he called to talk about the results of my CVS, he asked me if I was going to keep "it."

I had my sad days but, they were becoming less.  During my first anatomy scan at 16 weeks, Dr. Carlson had asked me how I was holding up.  Immediately my eyes began to well.  I told him how I was beginning to accept her diagnosis but, I am so fearful of what others will think of me.  Dr. Carlson told me how 98% of the problem with a Down syndrome diagnosis is society.  If people were more accepting of Ds, we probably wouldn't see an abortion rate of over 90%.  He had told me how people with Ds are more alike than different and that no matter what, he was 100% sure I was going to love her.  

I recently had my 20 week anatomy scan and my little girl (I can call her that now and actually smile) looks fabulous.  Dr. Carlson told me that if I did not have the initial testing, it would have been a birth diagnosis.  I'm so happy I had this time to grieve the loss of the child I thought I was going to have and celebrate the life of the child I will welcome into the world.  

There is so much more I have to say and am glad I have an outlet to inform everyone with.  Please feel free to ask any question you would like!  I would love for those close to me to be as informed as possible before our little girl gets here. 

Thank you for reading! 

All my love, 

Nancy