Missing My Baby Girl

My Audrey Grace.

My very much wanted and planned for second child. My sweet pea. My baby who had Trisomy 18, a third copy of her 18th chromosome… a condition considered “incompatible with life.”

We welcomed her into the world on October 15, 2003, knowing well in advance the ultimate outcome. My baby girl would have been 11 this year. If she only had two copies of that 18th chromosome, she would have been full of life and hormones about now. She would be bugging her older brother. She would probably be driving me crazy… and we would have been crazy about her. Life would have been very different indeed.

But life doesn’t always turn out the way we plan.

I told my mom when I was a teenager that I thought I would have a child with different needs. She told me I wasn’t normal 🙂  She said that “normal” people see themselves with “normal” children. When I found out that Audrey wasn’t “normal,” I had a sense of peace and calm. I knew God had prepared my heart many years in advance to be the mom of a very special child. I didn’t plan to have a child with different needs, but I somehow always knew I would.

Knowing in advance simply does not prepare one for the onslaught of care and decisions. We knew at 15 weeks and 6 days gestation that she would not be with us for long. We chose to carry her to term and spend as much time as we could with her. We purposely chose to face whatever came our way.

Knowing in advance didn’t make the loss easier. Visiting funeral homes instead of pediatricians was never on my radar for a pregnancy activity. Choices of what type of care to pursue and not to pursue? They don’t have a class on that. You visit on line sites and pray a lot. You listen to others who have traveled the road you are traveling. No two families have the exact same journey, just like no two children with any Trisomy (or any birth defect, for that matter) are alike. You do the best you can with the information you have at your disposal at the moment. Sometimes the choices are easier. Sometimes the choices are almost impossible.

When the time comes to say, “Good-bye,” whether you knew you were going to lose her or not, it is gut wrenching. I believe I had it a little bit easier than many. I knew ahead of time that my daughter wasn’t built to last. It wasn’t a shock. Did I feel my insides get ripped out? Yes. Did I cry? It took about two months, but I was able to cry. Did I get angry? Of course. Seeing healthy babies come from moms who didn’t care, drug moms, babies left in dumpsters… it wasn’t fair. We could have given our much wanted second child a beautiful life. Grief ebbs and flows. Some days are easier than others. Some days you can barely function. Some days you can take solace in the care of those who don’t know what to do or say. Some days you can laugh at your other children’s antics or a TV show. It’s okay to laugh, but just because you are able to laugh doesn’t mean  your grief is instantly over. Everyone must take their own journey through this. Each journey will be unique. Some journeys are shorter. Some are very long. Be gentle with yourself. Healing will come when it comes.

In the end, you have to believe that you did the very best you could. You have to know that following your heart was the best choice. It isn’t easy. My grief journey started before my daughter was born. It intensified when her soul left her body as I held her in my arms, just 40 minutes before Mother’s Day in 2004. I have made it to the plateau they call “Acceptance.” Does that mean I have ceased grieving? No. It just means that the waves of grief are much farther apart now than they used to be. There are still days I question, days I wonder what would have been, days I long for her hugs. That will never end.

She will always and forever be my baby girl.

My Audrey Grace.
She was a wiggly one and liked to pull her oxygen tube out… we had to gently tape it in place.

 

What in the World is a Trisomy?

My son, age 4, and his sister, Audrey Grace. She was six days old in this picture, the day before she went in for neurosurgery. She was a full term, 5lb, Trisomy 18 baby.

Simply put, a Trisomy is the presence of a third copy of a particular chromosome. In reality, a trisomy turns your life upside down.

In 1956, it was determined that the human body has 23 pairs of chromosomes. Twenty-two pair, plus your gender chromosomes. In 1959, trisomies were discovered. If there is a third copy of one of the pairs, it is called a Trisomy (remember, “tri” means three). The extra information really confuses the body. It gets all confused and stuff goes wrong.

Trisomy 21 (or a third copy of the 21st chromosome) is also known as Down Syndrome. By syndrome, it means that there is a massive list of things that could go wrong, but the number of things that are actually wrong varies by person, as does the severity of the symptom. For instance, 40% of those with Trisomy 21 have heart problems. Some will have a hole between the upper chambers of the heart; some will have a hole between the lower chambers. That hole can be less than a millimeter or several millimeters. Their heart problem could be something entirely different. Each person is a unique individual with their own set of symptoms, but just one primary cause, that being the third copy of a chromosome. Trisomy 21 is the most common trisomy. 6,000 babies born in the United States each year have Down Syndrome. That means one out of every 700 babies has this trisomy.

Trisomy 18 is the second most common trisomy. That means the extra chromosome is the third copy of the 18th. It is also known as Edwards Syndrome. This trisomy is referred to as being “incompatible with life.” There are about 1000 babies born in the United States each year with Edwards Syndrome. That would mean one of every 6,000 babies born has this extra chromosome. Of those, 50% will not survive for a week and 90% will never see their first birthday. There are also a litany of different issues associated with this syndrome. My daughter was born with a couple loops of intestine in her umbilical cord, had a clubbed foot, a sacral myelomeningocele (an open-to-the-outside neural tube defect on her tailbone), and five heart defects. She underwent six hours of neurosurgery when she was a week old to repair the neural tube defect, which required placing a shunt in her head to drain off excess fluid which would happen after the repair. She was with us for seven days shy of seven months. Many doctors had told us she probably wouldn’t be born alive. We were so blessed to have the time we did.

Trisomy 13 is known as Patau’s Syndrome and is the third most common trisomy, occurring in roughly one of every 10,000 births in the US. More than 80% of Trisomy 13 babies born alive will pass away within the first month. Theirs is also a diagnosis of being “incompatible with life.”

Trisomy 15, 16, 22 as well as extra gender chromosomes (XXX, XXY, XYY) are well known, but trisomies of any chromosome can happen. I have known a mom of a child with Trisomy 8.

 

Before I had the first indication that anything might be wrong with the little girl I carried, I had never heard of trisomies. While we were awaiting testing, I began to learn about trisomies. After her diagnosis, I continued my learning, focusing on trisomy 18. When she was in the hospital with RSV, I had nurses come in and ask me questions about Edwards Syndrome. It is rare enough that most of them will not have the opportunity to care for a baby with this particular disorder more than a couple of times in their career, if at all. I didn’t have to learn a little bit about every illness, as a medical professional would, so I became their expert on Trisomy 18. I was thankful for them asking. I appreciate people who are willing to learn.

If you have any questions, please leave them in the comments. I am more than willing to help people understand, as far as my knowledge extends. You can also visit websites like SOFT or the Trisomy 18 Foundation. They are a wealth of knowledge and understanding.

Taking a break from Grief

My little morning angel

 

When I was looking for a “Throwback Thursday” picture for Instagram this morning, I happened upon this photo of my son. I remember the day this was taken just like it was yesterday.

This was taken one year to the day after my baby girl, Audrey Grace, left us for Heaven. My sweetheart died in my arms on the evening of May 8 at 11:20pm, with that little man up there by my side. He absolutely wailed when he found out his baby sister had gone to live with Jesus. It reverberated throughout the PICU. At that moment, my entire focus switched to him. My daughter was gone. She was no longer struggling with a body that didn’t work properly. She no longer needed supplemental oxygen. She was happy, healthy, and whole. She was unencumbered. My little boy, however, needed me. He needed my love and support and distraction. If I hadn’t had him, I don’t know how I would have survived the death of my child. Even when you know it is coming, as in the case of a child with Trisomy 18, it is a shock. It still hurts. It still debilitates you. You still question. You still struggle. This little guy needed me and that was what helped me through.

May 8th of the next year fell on Mother’s Day. We are normally in church on Sundays. We had an awesome church family that supported us with love and prayers during her whole life and her death and our grieving. But I knew that Mother’s Day Sunday would be exceptionally difficult. We chose to purchase/donate the flower arrangement for the altar and have it delivered to the church in her memory. I kept my son home and just had a lazy day.

We stayed in our jammies most of the day. We played bottle caps (stand the plastic bottle cap on its side, put your finger on the top, parallel to the opening, and press hard, pulling your finger towards you as you do so. The cap goes flying off). We sat at tv trays in the living room and went for distance. We shot them at each other. We ate junk. We made nests on the floor with blankets, pillows, and stuffed animals. We snuggled as we watched silly movies and kid’s shows. We chose to just enjoy the day.

To be honest, he was only five. I’m not sure if he realized it was Mother’s Day or not. I am pretty sure we talked about Audrey. We did most days. That day, I chose not to wallow in my grief, but to embrace the child that needed me as much as I needed him. We had fun. We made some memories at a time when we so desperately needed it.

I am not sure when it happened for him, but I know it took me about 18 months after losing her before I realized that I was having more good days than bad days. Losing a child is never easy. I am thankful I had someone to take care of, which allowed my mind a break from the grief.

You know, my baby girl has been gone ten years now. There are still times when it takes my breath away and I can’t believe I never got to see her grow up or that I will never hold her again. That little boy in the picture up there is now in high school, hanging out with his friends, a lineman on the football team, a member of the drama troop, a player of Minecraft, going to the pool, riding his bike all over… still needing his mom, though he doesn’t often admit it. We have made it through a lot in life together. He has seen more and had to deal with more than a lot of kids his age. It has made him tenderhearted. I am thankful for that. And I am thankful for the days we chose joy and chose to enjoy the little things in life. That picture is my memory of one of those days.

 

Writing my Dream

If you read my first blog post (click here), you know a little bit about me. One of the things people are often surprised to hear is that I am one of the many, many parents who has lost a child. I am thankful it wasn’t an accident or a sudden shock. I know the trauma would have been so much worse if we had lost her unexpectedly. We knew before my daughter was born that she was going to die. She had an extra chromosome. The presence of a third copy of a chromosome is called a “Trisomy.” An extra 21st chromosome will give you Down Syndrome. An extra 13th will give you Patau Syndrome. An extra 18th chromosome will give you Edwards Syndrome. Down Syndrome is the most common Trisomy, followed by Edwards Syndrome.

When we had Audrey Grace, the statistics I found said that  85% of Trisomy 18 pregnancies will end in still birth or miscarriage. Trisomy 18 affects about one in every 5000 pregnancies. Roughly 1000 Trisomy 18 babies are born alive in the US each year. Of that 1000, 50% will not live to be a week old. 80% will not live three months. 90%+ will not celebrate their first birthday. My baby girl defied all predictions and lived to be six months and 23 days old. 206 days. Seven days shy of seven months. Our life with a very fragile, terminally ill baby was not easy, but it was a blessing. Given the option to have never had her or to have had her and lost her, I would choose to look into those wise, gray eyes every time.

My Audrey Grace.
She was a wiggly one and liked to pull her oxygen tube out… we had to gently tape it in place.
One night, she kept pulling it out, making it blow into her eyes. I ended up taping it to the end of her nose, LOL. Don’t worry, it didn’t hurt. It just looked funny.

When we had our precious Audrey Grace, my son was four. He had just turned four the month before she was born. I was so blessed to be able to stay home with both of my children through this time. We had time to build memories. We knew her time with us would be short. We chose life. We chose faith. We chose love.

My baby girl passed away in my arms 40 minutes before Mother’s Day in 2004.

Today, I sat down to write a book I have been wanting to write for ten years. I am writing a book that will help other parents with a pregnancy that has a terminal diagnosis due to a Trisomy or other chromosomal abnormality explain to their older children how their new sibling won’t be with them long. It will be a short book, probably a picture book, written from the viewpoint of a three year old. It’s not an easy thing to write, but I have always said that if my experience could help just one other family… and I already know that it has. God has continually brought into my life people that need to hear my story or people that just need someone that had “been there.” This book is my way to help more people. This is my chance to tell how we prepared to survive the worst thing you can even imagine.

Today is my “anti-procrastination day.” I am writing my story.

My children in the NICU the day after my daughter was born.

 

What have you been putting off? What is in your heart to do or say? Do you have a story to tell? Remember what Eleanor Roosevelt said (“You must do the thing which you think you cannot do.”) and just get out there and do it. Nothing worth doing, nothing worth having has ever come easily.