Wednesday, May 08, 2013

On her Twelfth Birthday.....

This is the story of how Down syndrome entered into our lives,,,,,,,,presenting itself in the genetic make-up of our youngest child.

We hope you Enjoy reading about our beginning of this journey........

The story of Emma Sage

Emma: One who heals
Sage: One with great wisdom

Alexandra: See her birth story to find out the meaning of her third [unplanned] name

Even before her birth, Emma Sage has lived up to her name, by healing and teaching those around her the true meaning of life.

Emma Sage is our fifth child. She was conceived one year to the day of our miscarriage. Before her conception I never fully understood the power of ones soul…….but the moment of her conception, I arose from a deep sleep, overcome by the most incredible sensation.….I sat up as I felt her soul enter into my body [I know you might question this experience, but it was the most profound moment of my life and one that has allowed me the greatest sense of peace.] I knew immediately that I was pregnant. I placed my hands on my lower belly and asked GOD for this baby to stay. It was a warm August night and the moon was full. I laid back down and watched the stars through the skylight thinking about what had just happened.

About 10 days later I took a home pregnancy test and it was positive….I took three more just to be sure. I was very nervous because of our loss that I asked my midwife to check my HGH levels at around 4 weeks. The levels were high and my fears subsided a bit. It was around this time that I began having dreams. I kept dreaming of a little girl who looked just like a china-doll….so tiny and perfect. I had my first dream of having the baby on the side of the road…..Beginning my concern of missing labor and birthing [in my dreams it was everywhere]. My sister who is a L&D nurse would laugh at me when I would tell her of my dream and she brought me a cord clamp and told me to keep it with me. [As fate would have it, we needed to use that cord clamp!] At 8 weeks, we took a family vacation to Florida. While at Universal Studios, Rick, Katrina, Greta and I [Otto was at Disney World with my mother, sister and her family] we were sitting in NYC waiting for the Blues Brothers show…..when this powerful sensation came over me again. I was watching this beautiful little boy dancing around…he would come up to us and smile and then dance away back to his parents. After the show started I could not keep my eyes off of this little guy. I looked at Rick and told him that I thought that this little baby was going to be exactly like that little boy [that it would have Down syndrome]. Rick put his arm around me and said, “That would be just fine”. I told my sister about the incident that night at dinner and we both forgot about it.

At my 13-week visit I was measuring big for dates, so my midwife asked if it was OK to do an ultrasound to rule out twins. Rick and I agreed [I was actually so nervous this pregnancy and wanted to take a ‘peek’ at little one]. The ultrasound was one of the worst experiences of my life….for the only reason being that the technician was cold and in the middle of the scan said “There is something wrong with this baby” and left it at that, even though I was asking her millions of questions. While I was wiping off the goop, she called my midwife and said, “I think we have a problem”…..Rick and I went right up to my midwifes office. There, my midwife Peggy told me that the technician had measured the baby’s neck and the measurement was abnormal. The baby’s nuchal translucency was 3.6mm and anything over 3.5mm was a soft marker for Down syndrome. Later that night Rick and I sat outside in the barn on his motorcycle and talked. I asked him at one point “what are we going to do?” and he looked at me and said “we are having a baby, we are not GOD, nor should we ever play GOD” [[man do I love this guy…..he is my best friend and he gives me such strength at times]] I was just so scared not knowing …….but this began my quest on finding everything I could on nuchal translucency, soft markers & Down syndrome. We already knew we would not have an amnio and we scheduled a level II genetic ultra sound for 19 weeks gestation at a teaching hospital near us.

The time between the 13-week scan and the 19-week scan proved to be one of the most enlightening times of my life. Everyone who asked me about my pregnancy heard about the possibility that the baby might have Down syndrome and the responses I got amazed me….from “you will be truly blessed if the baby does” to “What are you going to do, your not going to have it are you?” One of the most profound comments came from my daughter Greta. While discussing with the children the ultrasound and ‘choices’ people make based on pre-natal testing Greta looked at me and said “So mom, if parents had a crystal ball [like the ultrasound machine] and found out that the baby they were carrying was perfect and when that baby was five it was in a horrible accident and became disabled and they had to take care of that child for the rest of their lives, could those parents choose to terminate that baby just because they didn’t want to deal with it later on?” [[See I told you Emma Sage was already teaching those around her the true meaning of life, even before she entered into our world]]

At the level II, my sister came with me. She used to work at St. Peters and I wanted her with me to also look at the scan to see if there were any issues with the baby’s heart or other major organs [I had come to accept the T21 very easily…it was health issues that I was scared of, because I wanted to make sure we delivered at the right hospital if little one need immediate medical care [how funny is this when fate had its hand on where Emma Sage was to be born]]. The baby was free of any structural issues and the nuchal translucency had corrected itself at this point. We did have a slightly abnormal pyelectusis, so another soft marker was found. This changed my risk/ratio from 1/47 to 1/280. At a 28-week scan the baby had no soft markers for Down syndrome, but I knew in my heart already that she would be born with that extra little chromosome.

I celebrated this pregnancy. I shared with everyone the joy we felt, even in light of the question of T21, because to me, that didn’t matter……this was a baby, a perfect and beautiful baby. My dreams kept intensifying. It seemed like at least once a week I would dream of missing labor and birthing where-ever… sister always laughed when I would tell her of my dreams and kept reminding me to keep the cord clamp with me. I kept dreaming of an angel…..I thought it was the baby we lost trying to reassure me that everything would be fine.

Three days before Emma Sage’s birth we were at the library and for some strange reason I found and checked out the book ‘Babies with Down syndrome’ When my mother-in-law saw the book I had checked out [along with a bunch of books on gardening] she looked at me and said “your not going to need this book”, and I just smiled at her and said “I know, it is for just in case”.

Emma Sage was due on May 5th……..on Tuesday, May 8th I was busy that evening helping my oldest daughter with her science project. We finished up the project and everyone headed to bed early [Rick had an early trip and need to leave the house by 3:00a.m.] I had bad gas and went down stairs to take a warm bath…..I would then sleep on the reclining chair for an hour or so and then wake up with ‘gas’, and take another bath…..this went on three times. After the last bath I feel asleep to wake to what I thought were finally contractions. It was 1:00 a.m. I timed them for 15 minutes and at 1:20 a.m. called my sister to say that I think was going into labor [at this point they were beginning to hit me fast and furious, but I could still walk and talk through them] She told me to call my midwife and she would get dressed and meet me at the hospital. I called the midwife at 1:25 a.m., getting her answering service, left a message and waited [timing what seemed to be waves of contractions, never really beginning nor ending]. She called me back at 1:33 a.m. {which awoke Rick, who jumped out of bed and got dressed because he figured something was going on}. I told her I was not sure if this was the start of labor, but that I felt so weird and that could she check me out and if it were nothing she could send me home. She said she was on her way to the hospital and would meet me there. We woke up the children and I dressed Otto, while I was bending over to put on his overalls, I was hit with a contraction that scared me. I asked him if he could put on his shoes, because mommy didn’t feel like bending over anymore. I got myself dressed and while I was pulling up my overalls, I got another contraction that hit me like a ton of bricks…..I got real scared because I thought to myself “If this is the way my labor is beginning, I don’t think I’m going to be able to handle it and is it a good thing to be bringing the children to the birth if I’m out of control”……I walked down stairs [Rick and the kids were on their way out the door] and when I got to the bottom I had this strong sensation to go to the bathroom. I told Rick I had to go to the bathroom….pulling off my clothes. When I got in there I realized that I was going to have the baby. I yelled for Rick telling him that I thought I was going to have the baby right away. I asked him “Where should I go?”,,,thinking living room floor or back up to my bed and Rick tells me “Get in the bathtub”….he throws down a bunch of clean towels and he calls 911. I hear him on the phone and he yells, “kids quick, what is our address again?” [Our address had changed a few years back for 911 but he could never remember the street number as opposed to our old RR# as he was always traveling around the world]

Now this is where fate steps in again………I knew this was going to be Emma Sage’s birth….I just did not know where, but I knew it was going to be just us. The most amazing thing about Emma Sage’s birthplace is that it is exactly the same area that Rick’s grandfather died [his grandfather died on the toilet in the same bathroom within inches of where Emma Sage was born,,,and actually Rick was sitting on the closed toilet, on the phone with 911 while I was delivering her….I think that there must be a gateway for souls to enter and leave this world at that spot….[and this is where Emma Sage’s third name comes from, her Great-grandfathers name was Alexander and we decided to add Alexandra to her name to honor her great-grandfather and the location of his death and her birth] Anyway, I truly believe that the dreams I kept having were a premonition to prepare us for birthing her alone. I also think that divine intervention was there, keeping her birth a peaceful and joyous occasion and not one that was over-run by medical inquiry. We were the ones to deliver her and welcome her into this world. I was the one who said upon her birth as I raised her up in my arms to my chest “Oh, look honey, she does have Down syndrome!”……..The children were there and we were a family.

We got to ride to the hospital in an ambulance and waiting there at the emergency entrance was my mother, my sister and Peggy, my midwife. Peggy looked at me and said “If it is nothing you can send me home?” and laughed out loud because Emma Sage was delivered into our world within 14 minutes of my telling her that.

Because Emma Sage was born outside the hospital she was considered a ‘dirty baby’ and had to stay with us [I would have had it no other way, but because of her Down syndrome if she had been born at the hospital they would have taken her away from me… see I told you there were greater forces at hand helping us at her birth!]……we all laugh to this day about her being the ‘dirty baby who was born in a BATHTUB!’

I knew right away she had Down syndrome and my midwife and sister both said that they too thought she did….we had many doctors come in to take a peek at her. I was scared at first because she was hypotonic and chilly so they had a warmer brought in for her….she wouldn’t latch on to nurse right away [even though she did on the ambulance ride over] and went into a deep, deep sleep. I started pumping right away because I would not allow them to supplement her with formula. She would nurse from a syringe those first 24 hours and then she latched on and has been a champion nurser ever since [I still breastfeed her and will most likely continue till she is 4 or 5 [that is if she wants too!] like I nursed all of her siblings.

There are so many things that have happened since Emma Sage entered into our world. She was the source of comfort for everyone in our family the week following her birth, when my brother tragically died. She filled every ones arms with love and hope. She carried our whole family through that very sad time.

If Emma Sage had not been born with Down syndrome, I would have been at the World Trade Center on September 11, 2001 [I was scheduled to attend a conference where a few of my friends perished] but I refused to leave her.

When we were in Montreal the summer after she was born we had this older gentleman walk right up to us [Emma Sage was in my sling so you couldn’t really see her but the top of her head] he placed his hand right on her and said “you have a very special baby here” We looked at this kind, old stranger and said “thank you, we think she is very special” and he said “No, she is very special and will touch many peoples lives…..I’m not positive how she will do it, but she will touch so many people”……the kids and I took a moment to think about what he said and he smiled and walked away……we looked back to the park were he was headed and could see him anywhere. To this day I believe he was a messenger. And I must agree with him. In Emma Sage’s short two years of life, she has touched so many people. Her bright smile, her sweet disposition and charm captures everyone she meets. I know her life will be filled with inspiring others, because she inspires us every day.

I can not imagine our lives with out Emma Sage. She has brought so much love and laughter, faith and compassion to our family.  She has brought enlightenment and frustration.  She has brought wisdom and understanding.  She has brought perspective and clarity. She teaches me lessons about life everyday.  We are truly blessed by the gift of  Emma Sage!

Celebrating Down syndrome having Emma Sage in my life has truly made me aware of the sacredness of our lives and that each journey is magical.