Beautiful and Wonderful ~ Having a Child with Down Syndrome

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Why I Share Dianna's Story
I feel that I have always been a compassionate person, not judging or belittling others for the way they look or how they may act or for how someone may be different than I am or different from what is typical. That being said, I have never really paid much attention to those who may be considered different. When I gave birth to my daughter Dianna in April 2012, I knew as soon as I saw her that she was different from my other babies. I knew from looking at her that she has Down syndrome. This did not cause me to love her less, but I had not been expecting this and I didn't know what it would mean for her or for me.

Since having Dianna, I have learned much. I researhced to find out how I could best help her. I have come across many sites that help to remove stigma of Down syndrome, to teach about what it is and what it is not. I find these sites encouraging and love reading about others' stories.  I especially enjoy reading stories about families who did not know about their baby's diagnosis until he was born because that was my situation.  I try to see if there were any similarities. I realized that I'm interested in these because I gave birth to a baby who has Trisomy 21 (commonly called Down syndrome).  My hope is that I can be of help and encouragement to someone who has given birth to a baby with Down syndrome. I don't feel my purpose is to persuade someone to keep her baby, but rather to her encourage her in taking care of her baby.

Dianna Lee, 8 months


Pregnancy and Birth
At the beginning of August 2011 I had just flown across country with my family including my 10 month old son. My husband and I had decided to take a family vacation while we helped two of our older children get settled into college. I remember being very tired. I passed it off thinking I was just exerting myself more than usual. For example hiking up 3,600 foot high hill while carrying my 10 month old in a front pack on a hot August afternoon.

About two weeks after returning home from our trip a friend sent me a message asking if I was pregnant. She had a dream that I was pregnant. I still have the message, and it's funny looking back at it. I assured her I would know if I was pregnant, that I was still nursing my little boy even at night so I really doubted I was pregnant.

I had an early sonogram to determine a due date which showed that I was about 13 weeks along. My care progressed normally and I declined prenatal testing not wanting a risk to my baby and knowing that we would not terminate a pregnancy.

At twenty weeks I had a routine sonogram. There were two technicians that took an abnormally long time to perform the test. I attributed the length of the exam to one of the techs being a trainee. They were able to tell me that I was having a girl, which I completely doubted, but they also said I needed to have another sonogram in a month or so. They could not get a good enough look at the baby's heart or face. They gave me pictures of my baby which looked fine to me. I even marveled at the size of my little girl's face, already so chubby. A second sonogram a month later showed all things were fine. I went home with a few more pictures of my baby and another confirmation that I was carrying a little girl.

The pregnancy seemed uneventful, though it was an uncomfortable and very tiring pregnancy.  I was looking forward to having more energy in my second trimester, but it never came. I waited and waited, and I was just so, so tired. I went into my third trimester not feeling any different from my second.

I felt as if the baby was small, like I had just a little beach ball in my belly. She certainly felt smaller than the nine pound babies I previously had. I attributed a smaller belly to not gaining much weight, which was another strange thing about the pregnancy since I really wasn't very active due to limited energy.

The week before Easter I did small things to prepare for the arrival of my little girl, things that weren't essential but I wanted done before she was born.  I wrapped small gifts for my older children so they would know I love them while my sister-in-law took care of them the day I was induced. My husband had plans to take our son, who would turn five the day after his baby sister was born, to the Lego store for his birthday. I had things prepared and planned and everything seemed to be going accordingly.

April 5 came with no baby, so we traveled to the hospital at 5 am to have labor induced.  At the hospital I had ivs placed to start a bit of pitocin to begin labor. It was working, slowly, but working. After a while I decided it would be fine for the doctor to break my water to get labor into full swing.  The labor had been routine but I was getting horrible headaches that would not go away and only relieved with ice packs.  At one point during labor the baby's heart rate dropped below 100 bpm. It stayed low for about 30 minutes. The doctor used an internal monitor at this time to get a more accurate reading. He had me move around to try to help the baby reposition and improve her heart rate. Just before he decided she needed to be delivered right away, her heart rate went back within normal range. And, within an hour she was born without need of a c-section.

About 4 days after birth, I had my first chance to get to feed her. I realized later that her face wouldn't always be so chubby. She was swollen from her body retaining fluid from her heart defect. She still has a cute, round face though.

I remember being worried about her because she wasn't crying. She did have meconium and a low oxygen level. The doctors wanted to get her off to the NICU for testing and oxygen treatment but would let me hold her briefly. As my ob handed my little girl {I couldn't believe it, a little girl} to me, I noticed some things about her. For one thing, she didn't look little at all. She looked like a football player! Massive cheeks and rolls on her upper body. I could hear the nurses guessing her weight. When we did get a weight, everyone was surprised she was only 7 lb 13 oz. But the one thing that struck me about her was how much skin she hat around the back of her neck. I didn't know the name of this until just a week ago {nuchal fold}, but it was a sign to me. I looked at my ob and said, "She has Down syndrome, doesn't she." And he being kind and gentle, yet I think afraid of disappointing me said, "I think so, but she is soooo beautiful." And she is.

Unfortunately, the rest of the day didn't go as I had planned either. Dianna was born shortly after 7 pm and within thirty minutes of her birth, she was whisked off to the NICU and I was whisked off to the OR for hemorrhaging. There was my husband all alone, without his little girl, without his wife. During a long time of not knowing about me, he learned that Dianna had a complete AV canal defect, meaning she had no wall from top to bottom separating her heart into four chambers and she only had one valve instead of two.  I remember a bit more than a week after the birth sitting and talking with him and realizing for the first time how lonely he must have been. It was a long night and I ended up in ICU and Dianna in NICU for a week. A time that is usually spent bonding and resting and taking care of an infant was spent in the hospital just struggling to get better, both of us.

Getting to Know Dianna
A week after she was born, we headed home. I could barely sit up and was still having severe headaches. Dianna was still jaundiced and had a severe heart defect but feeding very well {bottle, no nursing}. Thankfully my 20 year old daughter came home from college early to help. For the first four weeks she took care of baby Dianna, especially at night. I was worried that Dianna would not know I was her mother. I would sit and hold her often throughout the day or lay on the floor next took her while she took sunbaths so we had as much bonding time as possible.

Dianna has a bit more space between her big toe and second toe {see this post about Sandal Gap}.  I love her toes and she does too!

Once I began to feel better I did research on the internet and read books I ordered. I started to feel a bit overwhelmed, thinking there was so much to do and I just wouldn't have the energy or the time to do it. The best advice I received at this time was from my sister-in-law {who has a 25 year old son with Down syndrome}. She told me to just love Dianna. So I did. I would hold her and sing to her, I would rub her fat cheeks and rock her. And even though I loved her, my love for her grew exponentially.

As the first couple of months passed with visits to the cardiologist and pediatrician, and even one to the ER after an reflux and aspiration episode,  I spent time getting to know her. She loved {and still does} to hear singing. When she would try to cry or make sounds, I noticed she seemed to have a deeper voice than my other babies. She also would smile. From the first day she came home her face would break into a smile. Not just her mouth, but her whole face. I call her smiles, a whole face smile.

I say this is Dianna's typical face.  She smiles so much and uses her whole face to show how happy she is.  She is 7 months in this picture.

I learned she is like my other babies. She liked to watch her hands as she discovered she could control them. She is stubborn about what she wants and doesn't want to do. She is like her siblings in that she is different from them, she is unique.  They all have their own personality. They all will have wonderful blessings in their lives. And they will all have challenges to face.  We are just expecting certain challenges with Dianna, while the challenges for ourselves and our other children are unknown until they occur.

What Next?
There are many websites that are written to help raise awareness of Down syndrome. And there are some websites that offer personal stories and helpful advice. I hope to be of help to families who have given birth to a child or who have adopted a child with Down syndrome. I plan to continue to share fun activities and recipes that I make with my family. But I also plan to add some posts about what I have done with Dianna and what I have learned and found to be helpful. I started this blog to share with other moms and grandmas and families what we do as a family to enjoy life. What I do with Dianna is now a part of this.

I don't know how often I will post about her or other things {time certainly has gotten away from me}, but here are a few things I hope to share soon~
*At Home Therapy
*Helpful Toys and Baby Gadgets
*Health Concerns
*Cognitive Development
*More!

A sneak peak at one of my favorite {and Dianna's} toys, the Happy Apple.  They don't sell them in stores anymore, I don't know why.  But they can be found used, and a very limited new ones, on Amazon.


Until then here are some links to things I have found especially helpful.
Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals
Baby Signing Time
Milestones Chart for Babies with Down Syndrome
Growth Chart for Babies with Down Syndrome

I have not been shielded from those with Down syndrome. I have a nephew (25 years old) and a niece (2 years old) and some friends who all have Down syndrome. I do have to admit since April of 2012 my attention to individuals with Trisomy 21 has changed.

When I see a young man in the grocery store, shopping by himself and calling his mom for advice, I think of Dianna and whether she will ever go grocery shopping by herself. When I see a young lady walking down the street, slowly and clumsily but happy~go~lucky, I wonder what Dianna will be like at her age. I am excited to see what the future holds for her and who she will become.

Sometimes I wonder if she will be like a 5 year old for a length of time. Don't misunderstand me.  With all of my other children I longed for that newborn stage to last and last.  With Dianna it lasted much longer.  In many ways I would like her to be little for a long time. Five-year-olds are perpetually curious and full of energy. They see the beauty and wonder in the simplest of things. They like to cuddle. They are endlessly forgiving. They are ever hopeful.

Some {perhaps most} who have a child with Down syndrome do not like to equate their child to the term Down syndrome. And I don't either in that I do not want someone to look at my daughter and think she is the definition of Down syndrome, that every person with Down syndrome is just like her. Nor do I want a person's idea of what Down syndrome is define who my daughter is for them. Considering that, I can honestly say that Dianna would not be Dianna if she did not have Down syndrome. I can not imagine her without it. Even in Heaven, I can't imagine that she would be more perfect without what we call Down syndrome. She is beautiful and she is completely wonderful.

Dianna has little flecks of white in her blue {for now} eyes.  I've read that these are called Brushfeild Spots.  I think they make her eyes even more beautiful.




4 comments:

  1. Anonymous9:08 PM

    Sheila as I said here reading this story knowing a lot of what had happened it brought tears to my eyes. Diana has been such an inspiration to me as you post the pictures of her beautiful smiling face. You have always been such a wonderful mother so loving and caring and I'm just so proud of you. Diana is in my prayers daily and I am looking forward to the day when I meet my sweet little cousin and can kiss those precious cheeks. I love you and I'm so proud of you and I know that granny your mom and Mary Ellen are looking down on you loving smiles. You are such a blessing and I pray the Lord will give you all you need to continue being the wonderful woman that you are. All my love your cousin Marsha

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    1. You are very sweet, Marsha. And what a glorious day that will be to meet so many who have gone before. You need to add Robing to that list. Love you, too!

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  2. Anonymous2:12 PM

    Hi there!

    I stumbled across your blog by complete accident but I feel compelled to let you know that your little girl is absolutely beautiful. The happiness and joy in her face is so pure. Just by looking at her photos you can tell how loving and sweet her heart is. I swear it is God himself smiling through her. She is a gift. A pure and wonderful gift. Thank you for sharing your story and letting the world see her sweet face!! You are very blessed!

    ~ Kathy

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    1. Thank you, Kathy; you are quite sweet. She is a great blessing to our family!

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