Monday, February 3, 2014

Our Beautiful Butterflies - Take Three!

In Lily's first year of life, I had an idea.  An idea to show the world what Turner Syndrome looks like.  To date, it, and it's sister post from last year remain my most popular posts ever.  A fact that I'm both amazed and proud of.  In fact, this year's addition includes a couple of girls whose mothers found that post, and it gave them hope and encouragement. Turner Syndrome is not some horrible drawing from a medical text book, it is these amazing, beautiful, capable girls!  And that, is mission accomplished!

February is Turner Syndrome awareness month, and Lily and I wanted to do something to help spread awareness.  Awareness of what Turner Syndrome is.  Awareness to the just diagnosed, that this does not have to be a bad thing, and hope to the expecting mother, carrying a precious baby with Turner Syndrome, that this will be a journey that is worth any hardship you may face.  


The butterfly is the Turner Syndrome symbol. The TSSUS chose the butterfly because the butterfly is feminine yet strong, every butterfly is unique, and butterflies fly on their own which is our hope for these girls. I think it fits so well because butterflies may at first glance appear fragile, but are truly strong and beautiful, just like these girls!  Over the past 2 years I have come to know many of these girls's mothers, and some I have formed life-long friendships with.  And again, putting this post together this year, I have been moved to tears many times.  2 years ago, I learned that Lily and I are not alone, this year I know we have an entire support system to lift us up whenever and wherever we need it. These people are our family!  

My hope is that you'll share this post as much as possible. Please post it to your facebook, tweet a link to it, email it to your family, friends, your local media.  Alone I'm just a single blogger, with a beautiful daughter who happens to have Turner Syndrome.  Alone, there isn't a lot I can do, but together we can make a difference!  

So without further explanation here are our beautiful butterflies - 45 chromosome princesses of all ages, they are many and varied,  they are miracles, our one percents!

Emma T - 2-1/2


Emma was diagnosed in utero as she had a large cystic hygroma and hydrops. We were told that she would not survive and gave us a 0% survival rate. This was extremely devastating in itself; however, we had already lost a baby at 28 weeks in utero due to severe hydrops/hygroma that was due to  a severe heart defect and a miscarriage at 9 weeks.   However, God had bigger plans. At 28 weeks in the pregnancy the hydrops and hygroma finally resolved and the doctor gave Emma a 1% survival rate. I do not believe it a coincidence that at the same week in the pregnancy we lost our Emily but we were given a change with Emma! We are always thankful and grateful for our miracle girl.
She is now a 2.5 year old active sweet girl. She adores her family and especially her sister Erika (6 years old). She is amazing and always loves everyone and everything. She is always so happy and there is no one that does not love Emma after having met her.

Madi - 4-1/2


At 20 weeks gestation Madi was diagnosed with Turner Syndrome. It was suggested to abort because she was only given a 1% chance of survival. Well here were are almost 4.5 years later with a beautiful, spunky little lady! Madi is just like every little girl..she loves her babies and playing dress up! And she LOVES Doc McStuffins and playing doctor. We thank God everyday that HE chose us to be her parents! She brightens every room and brings joy to everyone she meets.

Sajda - 3 (almost!)


Sajda is a Kurdish Irish American girl with Mosaic Turner Syndrome.   She is almost 3 years old now.  When she was born she was very sick because she had a congenital heart defect called Pulmonary Atresia with VSD.  She had open heart surgery at 5 days old to place a conduit and repair her heart.  Since then she has been thriving and has only had slight issues with her thyroid.  In the last year she has drastically improved in her speech and now talks nonstop it seems :)  This past summer she took her first international trip to Kurdistan and Ireland.  Her mother says, "She brings smiles to me, her daddy, and 4 older brothers all the time.  Life wouldn't be the same without her.  She truly is my sunshine, my pumpkin!"

Ivy - 3-1/2


Ivy was born on 6/18/10, so she's now 3.5.  She's a total spit fire, girly girl with no fear and an intense desire to experience life.  She had a heart surgery at 4 days old and has been taking growth hormones for a year and a half. In that year and a half we've seen nearly 6 inches of growth!  Yeah!! She's still the smallest kid in her class by a landslide, but that doesn't slow her down, if anything it's made her tougher.  She enjoys animals, babies, princesses and mud.  She really lives up to her "Italian redhead" status and never leaves the day dull.

Maizy - 19 months


Maizy is 19 months old, and is a 45XO. She was diagnosed at 25 weeks gestation, and at 35 weeks we discovered she had a coarcation of the aortic arch. Her family packed up and "moved" 4 hours away to be near Children's Mercy Hospital in Kansas City, where she was born. At 9 days old she had open heart surgery to repair the coarc, and 40 days later finally came home. She had to return at 3 months to have an angioplasty to widen the patch, and since then, she has had no recurrent coarctation. Maizy is a lively, active toddler, who loves to follow her 3 1/2 year old sister, Piper, around, jabbering constantly as she goes. She loves playing outside, listening to stories, singing, and snuggling up with mommy. Maizy is as spunky as they come, and doesn't let anything slow her down. Her mother says, "We can't wait to see what she has in store for the future!"

Mikaylee - 2


Mikaylee was diagnosed at 6 weeks old after spending a month in the hospital for breathing/eating issues. Mikaylee has mosaic Turners Syndrome. She shows no physical characteristics except her extremely small frame, and frequent ear problems, especially infections. Despite her small frame she is a fighter that loves to dance, talk, play with her babies, and run after two older brothers. She is precious, sweet, feisty, and down right hilarious. Her mother says, "We can not imagine our life's without her."

Kambree


Kambree was diagnosed with classic TS just after her 2nd birthday, thanks to a wonderful pediatrician who recognized some of the signs in her.  She has an older brother and an older sister who she loves keeping up with.  She loves smothering her family with hugs and kisses. She is really doing well at learning Sign Language, too.  Her spunky personality and strong-willed spirit are definitely bigger than her.  What she lacks in size, she makes up for in personality.  Her mother says, "Because of her, we know that miracles really do exist!"

Isabella - 3


Isabella's mom writes, "At 47 years old, all my children were grown at 15, 18 and 21. I was returning to work after 20 years at home with them. But God had other plans for me. The day before I was to start my new job, I had a positive pregnancy test. I had always wanted more children, but I confessed I thought, "Now, God?" At my 20 weeks scan we found that we were having a girl and she had a cystic hygroma that was very large. I  refused an amniocentesis because I didn't want to endanger her any further.The perinatologist  suggested an abortion."


At 24 weeks, she was not worse. At 26 weeks, he suggested that she had Trisomy 13 or Trisomy 18, both generally fatal chromosomal abnormalities. Her mother was heartbroken.  At every appointment after that he again said that he thought she was a Trisomy baby.  At 34 weeks, her mother developed preeclampsia and was induced. Isabella was born weighing 4 pounds 2 ounces. She was able to breathe room air shortly after birth. Her mother writes, "When the neonatologist came to say he thought she had Turner's Syndrome, he was surprised that I was so happy. That was the first time that I thought I would get to keep my little blessing." She stayed in the NICU for 11 days and came home.


Isabella is now a bright, funny 3 year old that is the joy of her family. She loves to sing. She dances with "Angelina Ballerina." She's the light of our lives!

Adele Mikayla - 6 months


Meet Adele, Northern Canadian baby girl! Diagnosed with classic Turner Syndrome. She received extra help from miracle workers at Children's Hospital the first month of her life. Although she's been through a lot (heart surgery at 4 days old), she continues to thrive and have that cute little smile on her face everyday! She is loved and admired by all in her life. Adores big sister, Riley. She absolutely capitalizes on cuddle time and already expresses such passion and love through kisses and caressing faces hehe. She is definitely a little lover.  Her mother writes, "My treasure, my joy!"

Tiegan Rae - 3


Tiegan Rae is 3 years old. She was diagnosed in utero at 21 weeks. She had open heart surgery at 6 days old for a coarctation of her aorta and has also had surgery on her throat and ears. She has some hearing loss and this year got her BAHA band. She is learning more every day. Her favorite things are Minnie Mouse and kitties. She is mommy's true miracle.

Sienna Rain - 7


Sienna is 7 years old and in the 2nd grade. She was diagnosed at 4 years old with Mosaic TS and started GH at 5 years old. She has grown over 7 inches and gained around 9 pounds since starting the GH. She is an athletic little girl who got a new pony this year! She has been riding since she was 5, and this year we moved to a house where we could keep our horses! Sienna goes to riding lessons at least once a week, is in swimming lessons a few times a year and was part of a running club at school this year that ended the season with a 1.25 mile run! She has a horseshoe kidney, has had tubes in ears 4 times now, her adenoids and tonsils out, and wears glasses. She tells her mom that she is going to grow up to be a horse worker and asked her if she could go to college to learn about horses!

Emma A - 2


Emma is a 2 year old Turner Syndrome miracle.  She was diagnosed with Classic TS at birth. She's such a happy and caring girl.  Love her personality, always willing to give hugs and kisses. Very friendly with people. Has so much energy and loves to eat. She had tubes put in 8 months ago. She has been on Growth Homrone for 1 yr and she's growing!  She loves to watch Mickey mouse club house and Dora the Explorer, and dance and clap her hands. She is currently potty training and doing great. She knows how to say her name and a few words. She also receives physical, occupational and speech therapy. 

Abby - 2 years 9 months


Abby is 2 years and 9 months and full of life and energy!  She is constantly on the move and is learning something new every single day.  Abby was diagnosed with Classic Turner Syndrome a few weeks after she was born,  but we continue to marvel at how "normal"  her life has been ever since.   She started her growth hormones this past fall and has seen significant growth on them to date,  jumping all the way back onto the normal growth charts!  Her mother says, "Abby is such a delightful child;  a miracle we thank God for continually."

Destanee Grace - 6 months


Destanee Grace was born on August 16, 2013. She was diagnosed with Classic Turner Syndrome at 15 weeks gestation by an amino done after the discovery of a cystic hygroma, pericardial effusion and fetal hydrops. Her mother was told she would not survive and was given an option to abort.  Immediately she decided she would not and she would give her little butterfly a chance. She is such a fighter. She has a multicystic dysplastic kidney, bicuspid aortic valve and has no ovaries. she loves to smile and is such a happy baby. Her mother says, "I can't wait to see what our future has in store for us!"

Juliana Grace Rose - 2-1/2

Juliana's pregnancy was very tough.  We were given the news that she had a cystic hygroma, fetal hydrops and multiple heart defects when I was 17.4 weeks pregnant.  She was given 1-3 weeks to die in utero.  We were devastated and chose to have an amniocentesis done.  2 days later I found out she had Turner Syndrome and that if she survived could have a decent quality of life.  We chose to pray, pray, pray and on June 2, 2011 Juliana made her dramatic appearance just over 4 weeks early!  She was transferred to U of M hospital to have open heart surgery on June 6, 2011.  She was in the hospital for 5 weeks and has been home ever since!  Juliana still has heart defects that we monitor on a regular basis.  She takes heart meds daily.  She also has had some issues with her ears, she has had and still needs multiple surgeries.  She now wears hearing aids.  You would never know that she has and still is battling so many health issues.  She has the most energy and spunk of any little girl you will ever meet!  She is kind and humorous!  Her favorite people are her big brother Will and little sister Gabriela.  I thank God everyday for Juliana's life! 

Addison - 2-1/2


Our daughter Addison was born August 22, 2011. She was four weeks early weighing 3 pounds 14 ounces and 16.5 inches long. I found out in utero  through an amnio that she had TS. She was measuring small on the ultrasounds , so the doctor suggested something was wrong and to do an amnio. 

I really didn't  know what to expect or if she would even make it, but she did!  She was evaluated in the NICU and they noticed a blockage in her small intestines.  She was transported  to Children's Hospital of Atlanta at Eggelston. She immediately had surgery to have the blockage removed. Unfortunately, a week later the suture broke and they had to do surgery again. This time an illeostomy was put in and she had a bag for 6 more weeks. She was reconnected and we left the hospital after 80 days.  We had lots of doctors appointments but she she was healing and growing. We did deal with severe reflux but by 9 months she stopped!  She does not have a COA nor has she had one ear infection or problems with her hearing. We had physical therapy twice a week to help with her gross and fine motor skills. I give thanks to the  therapist because she hit all the milestones on time and has never given up.

Flash forward to January 2014! She is almost 2 and  a half bright , bubbly little girl that makes us so happy.  She loves to eat! She could sit for hours and look at books or have them read to her. She knows her ABC's, colors, can count to 5, and knows most of her shapes. She loves to play and never meets a stranger! She also loves her baby sister.  Everyone is drawn to her smile and outgoing personality. She is strong willed and never gives up on anything she tries. This is the child I always dreamed of when I thought I would have one. She is perfect and I love her so much! She brings so much joy to our family everyday. 

Olivia - 3-1/2


Olivia was "accidentally" diagnosed with Turner syndrome at 5 months old. She was in the NICU at the Children's Hospital of Philadelphia for her first 6 weeks, fighting for her life from an unknown illness. As quickly as she got sick, she just started getting better. While doctors were searching for a cause of her being so sick and having multi organ failure, they did a chromosome test and discovered she had mosaic Turner syndrome. It didn't explain her symptoms at birth, but we felt so fortunate to find this out so early on in her life.
Olivia is pretty healthy, and just struggles with speech delay, mild learning disabilities and frequent fluid in her ears, which requires tubes. She is small for her age, but is still in the 75th percentile for height according to the TS growth chart! She will be starting growth hormones when she turns 4, in September. Olivia has a special light around her. She makes everyone she meets smile, and we know that there is a special plan for her in this world. She is truly out little miracle and a great gift from God.

Danielle Magdalene - 7


Danielle Magdalene is 7 years old. She was diagnosed with Mosaic Turner Syndrome at birth and also had surgery at 3 days old to correct a Congenital Diaphragmatic Hernia.  She stayed in the NICU for 60 days.  Shortly after bringing her home, she experienced ear infections which resulted in placing numerous sets of tubes in her ear within a 3 year span. She also had her Adenoids and tonsils removed at age 3. She wears a hearing aid in her right ear due to moderate hearing loss. Danielle has always been tiny compared to other children her age. She started Growth Hormones last summer and she has grown 4 inches and gained 20 lbs.     She is in the first grade, and she loves school and making new friends.  She loves to dress up and to sing and dance. She has been through so much but you would never be able to tell because of her fighting spirit!

Katie - 11-1/2


Katie was diagnosed at age 9.  She is the youngest of 3 children.  She has 2 older brothers, but she can handle herself.  She has had 5 sets of tubes, tonsils and adenoids out.  We only found out due to she wasn’t growing like kids her age so they did blood work.  They found out her thyroid was low so they put her on meds for a year to hope that would help and sent her to Endo.  After that didn’t help they did more blood work and found out she has Turners.  She was full term and  7 lbs 2 oz.   She enjoys Cheerleading.  She is getting ready to be tested for hearing aids.   

Ainsley and Aubrey - 3


aka: The Tinkerbugs 3yrs old

These two are identical twins that happen to have mosaic Turner Syndrome, making them the least identical looking identical twins we've ever seen. (In our opinion anyway). 

Watching these two grow over the past three years has been incredible! The first year I was scared of everything, they were constantly sick, barely growing, continuously at the doctors, therapy three times a week, it was so overwhelming! They were worth every second of it, but I won't lie, I was overwhelmed. 

The second year was more of the same, but they became mobile and started to make progresses in areas that I wasn't sure we would see, like Ainsley is amazing at running and climbing and jumping. The second year closer towards the middle, Aubrey took off in speech! Sometimes her words are still a little hard to catch but for the most part she never stops talking and we got a kick out of telling the doctor No, she speaks in 6 or 7 word sentences when asked if she combined 2 or 3 words at her last appointment. :)

This third year is proving to be even more fun & challenging (come on its 3)! So far they've begun preschool and got their alphabet, colors, and numbers to 10 down. Ainsley just rocked the potty train, but Aubrey is really overwhelmed by it so its taking a little longer. We will get there, this is a time where having a tiny heiney is an awesome advantage! 

These two are amazing little girls, they have the tenacity and courage of people 10x's their size! If I have anything to do with it, they will keep that quality! These beautiful girls have brought us some great friends and extended family into our lives! We've enjoyed watching all of these beautiful children and so many more grow. I wouldn't change a thing about my girls, they were made exactly how they were meant to be!

Lily - 2


Lily's parents first became aware of Turner syndrome when a 12mm cystic hygroma was discovered at 12 weeks gestation. She was diagnosed with Turner Syndrome at 16 weeks gestation. Lily's parents were told she would not survive past 20 weeks, but she did! She had coarctation of the aorta repair done when she was 2 days old, and came home when she was 12 days old. She has had tubes placed for frequent ear infections, and had tonsils and adenoids removed due to obstructive sleep apnea. Lily started growth hormones last spring and has seen some growth improvement, but she makes it known that although she is small, her spirit is not! Lily is a joy to everyone who knows her. Her smile is contagious, and her giggles brighten the day. She loves Bubble Guppies, Paw Patrol, and Dora, and enjoys causing trouble with her Irish twin, Sage. Lily looks up to her big brother, Schuyler, and loves to play outside, even if "outside is cold." Lily enjoys participating in family yoga practice and loves to snack all day long. She is amazing, we love her to the moon and back and we are so grateful we are blessed with her miraculous life.

Brissa - 10 months


Brissa was diagnosed with Turner Syndrome at 16 weeks pregnant by an amnio she also has a congenital heart defect called hypoplastic left heart syndrome with intact atrial septum, and she was in the hospital for almost 7 months!  She had her first open heart surgery at two days old.  Brissa has had many complications after that surgery but she is a fighter and did recover.  On 09-25-13 she had her second open heart surgery and she recovered very well, finally on 10-15-13 she was able to go home and enjoy the warm love of her family and of course her mommy.  Her future surgery will be the fontan which will also be her third one. She has a permanent pacemaker, for now she is on oxygen because she has pulmonary hypertension.she loves when mommy sings to her and she is beginning to grab her toys, after all she is being through and even though the doctors always said since the beginning she wouldn't make it she smiles all the time.  Her mother writes, SHE IS MY MIRACLE I LOVE HER WITH ALL MY HEART."

Eliana Grace - 3


Ellie is 3 years old and lives in TN.  She is a bright and very normal child who enjoys dancing, homeschool, stories/books, and anything involving Mickey Mouse.
She loves to go to church and especially enjoys playing with her friends in the nursery.  Ellie is very social and is like a ray of sunshine to all who know her.  She is not the average height of her peers, however, she is growing at a fairly normal rate without growth hormone at this time.  While she has some sensory processing issues, and a vascular malformation in her foot, she is a relatively healthy child who enjoys a normal lifestyle.
Her mother writes, "Ellie is most certainly our blessing, our testimony of God's grace, and we know the Lord has great plans for her one day!"

Ryann - 7


Ryann is doing great. She is 7 and in a life skills class at school. She wears hearing aids and leg braces, but nothing slows her down! When the psychologist asked her what she wants to be when she grows up she responded "I am going to be a pirate and sail the seven seas!" Yo Ho Ho!  The best is that it is in the actual medical report!

Jillian - 4


Jillian has a twin sister named Lainey who does NOT have Turner Syndrome.  They were born at 31.5 weeks.  They were in the NICU for 3.5 weeks and came home.  Just as we were adjusting to the life of preemie twins I noticed Jillian just stopped growing.  She was always a bit smaller than Lainey but by 8 months old she was a lot smaller than her twin sister. They were eating bite for bite of baby food but Jillian wasn't growing and Lainey never stopped. So I took her to our pediatrician who did blood work and all was normal.  With a follow up a few weeks later, she'd only gained a couple ounces so he sent us to a Geneticist.  He examined her and did a karyotype and that's when we got the news...Turner Syndrome...I was devastated, especially after researching the odds of these miracles making it to term, and the news of no biological children for her.  But, at the same time we realized how blessed we were that we had her, both of our girls! She had beat the odds and we just had to push forward and do whatever we needed to do for her.  After specialist after specialist we got all of the "details" of her condition.  She had an almost 1/2" hole in her heart, called an ASD. It isn't the common heart defects of TS but she had it and had open heart surgery just before she turned 11 months old to fix it.  She started GH at 28 months old. She is a very loving, bright, smart little girl.  She is high of life all of the time and doesn't miss a beat!  

Kessleigh - 3


Kessleigh is 3. She has been on growth hormones for a little over a year and is doing so well! She has not been hospitalized in over a year and is much healthier now than just a year ago. She is currently seeing a Gastro to determine what is going on with her stomach and also sees an endo every 3 months! She is such a blessing to everyone she meets and she is truly a miracle!

Emory - 19


Hi! I'm Emory. I'm 19 and was diagnosed with classic TS at birth. I'm currently a freshman in college. I love concerts and movies. I'm just a country girl at heart!

Emmry Adelynn - 2


Emmry Adelynn was born 9/16/11. We were completely unaware she had Ts (45X) until she was lifeflighted immediately after birth due to a COA and PDA of the heart, she was labeled failure to thrive, with horseshoe shaped kidneys and had partial hearing loss. She was also born with an omphalacele, and doesn't have a belly button because of it. She was supposed to have open heart surgery, but with medication her heart healed and now we Just follow up. From the start she saw 3 specialists a week, for her severe lymphedema and developmental delay, but now with lots of love, breastfeeding, good food and monitoring all negative signs  we avoid as many doctors as possible. She has had lots of issues with her ears and behavior, but we wouldn't change our miracle for anything. She is just the way God intended her to be and we don't believe in changing one thing about her. Go, Emmry, Go!


4 comments:

Kayti Arney February 3, 2014 at 9:22 AM  

You are so wonderful for taking the time to write this. It made me emotional thinking of all of the battles we as a family have faced, and we as a group of supporters have faced. I have seen many parents lose their butterflies, and it broke my heart. I have seen us all struggle but in the end we are all chosen for a reason and that is incredible. I wouldn't trade being Kessleighs mom for anything in this world.

Thank you.

Attitude of Gratitude February 3, 2014 at 11:27 AM  

Oh thank you for this. I wish I'd found something like it when I was pregnant with my butterfly, worrying and wondering. Today, my 14 year old butterfly has the most splendid wings. She is strong, like her sisters.

Chelsea Bishop February 3, 2014 at 1:46 PM  

Thanks for this post Sarah! I have a Turner's miracle that is 17 months old! I was a reader of your blog during your pregnancy with Lily and as soon as I received the news that my daughter had Turner's Syndrome I used your miracle as my sense of hope and peace! Thank you for blogging your experience it helped me in more ways than you can imagine!

Rachel Churchill February 14, 2014 at 12:51 PM  

What a wonderful post and what beautiful butterflies!

I came across your blog over a month ago, when my daughter was diagnosed with Turner's in utero at 18 weeks. Seeing all of these beautiful girls and reading their success stories gave me so much hope! Sadly, my daughter Gracelyn was stillborn at 22 weeks 2 days. I'm proud to say that I am a mom to an Turner Syndrome Angel. I will always keep a place in my heart for every girl and woman with Turner's Syndrome.

Thank you for sharing your story and sharing the stories of others alike.

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