Capture Your Grief: Day 15, WAVE OF LIGHT

Day 15 for the Capture Your Grief Project is the October 15th WAVE OF LIGHT for International Pregnancy and Infant Loss Remembrance Day.  All over the world, at 7 pm their time, people lit candles for at least one hour in memory of their precious babies they lost and miss dearly.  So for 24 hours, non-stop, candles were lit in honor of all those little ones we love that can't be with us.

My husband and I lit three candles that I made just for this occasion.  The front candle is for Taylor, the one on the left is for the babies lost by our family and friends, and the one on the right is for all those babies of people we have never met but have this tragic connection to.

For that moment, I felt a connection to parents all over the world who also knew what it was like to never see or hold their child that they love so much.  I've heard it said, and I wholeheartedly agree, baby loss is a close-knit group of people who support each other, even though they never wanted to be in the group.  I've witnessed that throughout this project and I definitely felt that today.                                        ~T.

Capture Your Grief: Day 14, Community

Capture Your Grief: Day 14 is "Community".  I created a collage of organizations that have helped in my healing in any way.
    I have mentioned the Carly Marie Project Heal before, so that is no surprise, especially since she is the one running the Capture Your Grief Project.  She also did the prayer flag project and a Book of Honor & Remembrance on Oct 15. 
    Bloggers for Hope is a blog that has a variety of authors that write on topics such as pregnancy loss, infertility, adoption and family issues.  I have gathered information and validation from their blog.  
    Pantego Bible Church is the church where my husband and I spend every Sunday morning to prepare for our week and feel revived.
    Team TSF is the race we are doing in November to raise money for the Turner Syndrome Foundation.  They raise money for research, education, and advocacy.
    Small Bird Studios is a blog created by a wonderful lady named Franchesca, who is also the founder of Still Standing Magazine.  She also does the Lost for Words card line with Carly Marie.

I hope all of these resources can be as much of a blessing to you as they were to me.

~T.

   

Capture Your Grief: Day 13, Signs

Taylor's Birthday Rainbow

Taylor's "I Love You" to Mommy

Day 13 of the Capture Your Grief project is a sign you have received from your baby.  I included two pictures for this day.  The first picture is a picture I took on Taylor's birthday while we were at the lake.  The flash of light (blob) in the middle of the picture is her Wish Lantern we released after praying for her.  As we watched the lantern fade from sight, I noticed this beautiful purple nighttime rainbow arching over where the lantern disappeared.  I pointed it out to my husband and stated that I had never seen anything like it before.  The sunset was actually behind us and other than the rainbow, that part of the sky was pitch black.  It was this beautiful purple color and we knew it was a sign from Taylor, telling us she loved us as we celebrated her here.  We both were tearing up. It did not make scientific sense that there should be a color of light where the rainbow was, but yet, there it was.  I tried to get a picture of it, but could only get blackness.  When I got in the car, I looked back through my pictures, disappointed that they were black.  Then I looked through the pictures I attempted to take of the wish lantern and noticed the one above.  I was so excited that I had captured the rainbow!  The crazy part is that we could not see the rainbow until the lantern was gone, but there it was in the picture.  Below is the same picture, but with adjusted levels,  I think it's beautiful to see all that was going on in the night sky that we couldn't see, yet our daughter was painting us a picture. 

The picture on the right is from the day that I spoke of in Day 3/4 post.  It is a beautiful sunset straight from Heaven and my baby girl.
I am thankful that I am getting to the place in my grief where I can see Taylor in my world and smile.  When you are in your darkest days that is so difficult.  Unless you have lost a child, you have no idea what these moments mean to a parent.  They are our baby's way of sending us a hug, a kiss, and an "I love you."  They are everything.
~T.

Capture Your Grief: Day 12, Scent

Day 12 of the Capture Your Grief project is a picture of a scent that reminds you of your baby.  I wish I had had the opportunity to smell her sweet baby scent, but since I didn't the scents after her loss are what remind me of baby Taylor.  When we went back home after losing her, we had this beautiful bouquet from my grandparents waiting for us.  We received several others, but the scent of the lilies overtook our home.  So soft, fragrant and beautiful.  On Taylor's birthday last month, we received a beautiful bouquet of white lilies from our good friends.  Again our home was filled with the sweet fragrance.  We took a single lily with us from that bouquet to our lakeside ceremony my husband and I had for us to say "Happy Birthday".  You can see that single lily in the memorial picture we took that is posted from Day 5.
I looked up the meaning behind the lily and found that it means "innocence, purity, hope, faith, motherhood, and rememberance".  If that is not an appropriate definition of a scent that describes my baby, then I don't know what would be.

~T.

Capture Your Grief: Day 11, Supportive Friends/Family

Obviously I do not have the ability to squeeze everyone who has been a support to us these past six months into one photo collage.  I have tried to let people know what their support means to me, but I don't think I can put into words the love, strength, and hope they have given to me.  I included in the collage my husband, my parents, my cousin and sister-in-law, and my brother.  My grandparents have been amazing, I have an aunt I can go to for anything, I have a second cousin that checks on me frequently and allows me to vent even when it's ugly, I have 3 fur-babies that cuddle me when I am sad, and I have several amazing friends, but one in particular that has been there to hear me cry or text me about the craziness that has been my life.  She even went so far as to mail me an "Egg Retrieval Care Kit" that made me smile during the most stressful of times.  The cards that we receive always put a smile on our faces, as well as the random texts just to say "thinking of you today".  I, really we, are so blessed to have the amazing people we do in our lives.  Love you all.

~T.

Capture Your Grief: Day 10, Symbol

Angel Butterfly

For those that don't know by now, the purple butterfly is the symbol for Turner Syndrome.  When I was shopping for Taylor's birthday memorial, I looked for a purple butterfly that was special and beautiful enough to be a part of our celebration.  Although I saw many purple butterflies, when I saw this butterfly, I knew it was the one.  To me, it looked like an angel, so it was a perfect addition for my Angel's birthday celebration.  Since it came in a 3-pack, I plan on keeping one in her memorial box, one goes on our Christmas tree and the last will go to my parent's house for their tree.  This butterfly will always be a reminder of our baby girl during the holiday's.

~T.

Capture Your Grief: Day 9, Special Place

Day 9 of the Capture Your Grief Project is "Special Place".  Carly Marie describes this topic as "a place that you visit that brings you peace."  Although I felt a lot of peace when we celebrated Taylor's birthday at the lake, the place I feel peace most often is with my husband.  So I took the metaphorical approach :)  I took a picture of his hands holding mine because I know I can trust that my heart is safe in his care.  Whether I am dealing with my grief or having a great day, I want those hands to be holding mine.  Underneath the picture is the caption from Instagram.

"The place that brings me the most peace is in my husband's arms, his hands holding mine tightly.  Whether it's at home when I'm having a hard day and missing my baby girl, or out facing the world, he is my home and refuge.  His hands hold me, pray for me, and keep me safe and feeling loved.  These are the kindest hands I've ever known and I am so very blessed that God let me marry this amazing man."

Until tomorrow,
~T.

Capture Your Grief: Day 8, Jewelry

Jewelry

Capture Your Grief Day 8 is a picture of a piece of jewelry that is in memory of your baby.  I know the picture is horrible, I am going to try and get another with natural light.  I have had this bracelet, with the charm of my name since my 16th birthday.  For Mother's Day this year, J wanted to make the day as easy as possible for me and let me decide how we were going to proceed.  I had decided I wanted to go to a Ranger's game because I could escape into my world of baseball and not be over exposed to Mother's Day excitement.  I couldn't struggle through the service at church, where each year they honor the mom's by having them stand and applauded and hand out a charm.  I just couldn't do it.  So for my Mother's Day present, J honored me with a matching charm and had it engraved with "Taylor Grace 2012".  Now her and I are side by side on this bracelet and as close as the charms are, I feel that close to her when I wear it.  The charms are now all scratched up from rubbing each other, so I really need to have hers fixed and figure out a way to protect it.  But even if I'm the only one that knows what it says, I love her little charm and how close it makes me feel to my baby girl.

~T.

Capture Your Grief: Day 7, What to Say After a Loss of a Child

Day 7 is a topic I was looking forward to because it allows me the chance to honor all of those in my life that have honored my daughter and our family.  All of these were either said or done for us after the loss of our daughter.  Some of them are so very simple, but yet they have meant everything to me and my husband.  So to those that actually know me and read this blog, "Thank you."  I love you so much and am so blessed to have each and every one of you in my life. I know if J were typing on this blog, he would say the same.  

~T.

Capture Your Grief: Day 6, What Not to Say

What NOT to say to someone who has lost their baby.

 

 

    If you don't know what to say, a hug or a handhold is a good choice.  They may tell you they can't handle it right that second, but it shows love.
    I also added in what not to do, i.e. ignore the parents, disappear from their lives and when you see them pretend like the loss never happened and like the baby did not exist.  When someone you love is going through this much pain, how could you NOT support them?  Even with something as easy as a phone call or text to check in on them once in awhile or to tell them you are thinking of them and their child.

After losing a child, what parents need the most is LOVE.

~T.

Capture Your Grief: Day 5, Memorial

Day 5 for the Capture Your Grief Project is a picture of anything you have done in memory of your baby.  While it is similar to what I will be using on Day 17, it is what I consider to be Taylor's memorial.  This is the memorial we created for her when we celebrated her birthday on September 24.  It includes her Prayer Flag, the angel butterfly I found (because butterflies can be a symbol of lost babies and a purple butterfly is the symbol for TS), her ultrasound from when we heard her heartbeat, Peanut (her puppy dog that my brother and sister-in-law gave me for Mother's Day, wearing the outfit, with Rangers t-shirt, they gave J for Father's Day), Mr. Raccoon, Pajama Baby (Mr. Raccoon and Pajama Baby are from my uncle for Taylor), a lily from the bouquet our wonderful friends sent us in honor of her birthday, and candlelight to let her know she shines on inside of us.  I will share more about her birthday celebration on the 17th, but I think this was a beautiful way for us to honor her.  I am not ashamed to admit that I have slept with one of the three stuffed animals every night since we lost her and I can't go to sleep until one of them in tucked under my arm.  It makes me feel close to her each night.  Hard to believe our baby girl would be in our home by now filling it with all kinds of wonderful baby sounds and smells if things had been different.

~T.

Capture Your Grief: Days 3 & 4

I did not get the chance to blog Day 3 yesterday since we were driving home from my doctor's appointment in Houston.  Unfortunately J had some food poisoning from his tuna sandwich at lunch and was very sick the entire way home, thus we did not make it home until almost 11!  He is much better today :)  So here are yesterday and today's Capture Your Grief pictures.

Day 3: After Loss Self Portrait

    
This picture was actually taken on October 3, same day as the topic.  I thought it was pretty fitting that my After Loss Portrait was in front of the UT Health Science Center in Houston's Medical District.  After losing Taylor, we were not able to grieve "appropriately" because we were thrown into the whirlwind of my Turner Syndrome diagnosis.  We then were forced to grieve not only the loss of our baby girl, which is impossible in itself, but also the loss of what I knew about my body and how it is failing me.  So after endless doctors that did not know how to help me, my wonderful husband hounded the doctor at the Turner Syndrome Clinic and was able to get me an appointment for October's clinic.  The TS clinic is ran by Dr. Rivera-Davila and only treats adults the first Wednesday of every month.  So we traveled to Houston and I had the most informative and productive of any appointment I have had in who knows how long.  She is running all of those tests that I was so worried about, but the other doctors pushed off and the best part is I didn't even have to ask, it was her idea to test me.  She also threw in a few more that I didn't even know to be concerned about.  She took blood to check the following: kidney function, cholesterol, Celiac's disease, diabetes, and I'm sure many more things I didn't even catch in our conversation. She was so completely thorough and understanding and I also felt completely at ease with her personality.  She also ordered an ultrasound of my kidney and a bone density screen, which I hope to have done closer to home and have the results sent to her.  Before leaving, I agreed to participate in a research study for people at risk for heart complications, so they too received some of my blood. 

Day 4: Most Treasured Item

My most treasured items are those that take me back to my favorite memories.  Hearing her heartbeat for the first, and last time.  Lord, please help me to never forget the feeling of witnessing the miracle that was my baby's thundering heart.  We took weekly pictures of my growing belly and these pictures I have sometimes feel like the only proof that she was real, that she belonged in our world for a short time.  The top right picture was taken exactly one week before we heard the horrible words that forever rocked our world.  She was only with me 11 weeks, but she is forever in my heart.

She sent me this beautiful sunset on my drive home from work today.  I had to pull on to the service road so I could stop and take some pictures because I just knew it was from her.  The way the lights beamed down, it had to be something from Heaven. 

~T.

Capture Your Grief: Day 2, Before Loss Self Portrait

Day 2 of the Capture Your Grief project is a self portrait before your loss.  I had a harder time with this one, probably because I put too much thought and I should have just let it flow from my heart.  The first thought that came into my mind was to use the picture I did end up using; however I debated whether to use this picture most of the day, even discussing the topic with my patient hubby.  I have always felt I looked extremely tired and maybe a little sickly in the picture.  Of course I was tired, I was 10 weeks pregnant and had walked around the zoo all day with a 3 year old and 7 year old in a wagon, running to the bathroom every few minutes because the 3 year old kept drinking too much water :)  So of course I was tired!  But I was concerned with using the portrait because it doesn't show the extreme joy I was feeling.  I debated on using a wedding pic (you know good old naive newlyweds), or a fancy dressed up photo... I ended up going with my gut because I remember how excited we were all day that even though our baby was still in the womb, he/she (because we didn't know at the time our baby was a girl) was at the zoo with Mommy and Daddy for her cousin's 1st birthday.  Her 7 yr old aunt and 3 yr old 2nd cousin were also there, along with another aunt, 2 uncles and a grandma.  If you know me, you know that I am an absolute animal person and I LOVE anything where I can be around animals and I LOVE going to the zoo.  J (my hubby) and I kept talking throughout our zoo trip about getting a zoo membership so that when Peanut was born we could come often and I could even come when he/she was a little baby and just walk around to get exercise and get the baby out and about.  We loved how Baby was experiencing this birthday party, even via the womb :)  So I went with this picture.  A week and a half later our lives were shattered, but at this moment our world was unbelievably magical.

So here's our Magical Picture...

Until tomorrow,

~T.

Capture Your Grief: Day 1, Sunrise

Crazy, two posts in one day!  

  As I mentioned in my prior post, Carly Marie's website has been a good source of healing for me over the past several months.  In honor of October being Pregnancy and Infant Loss Awareness Month, Carly Marie introduced the Capture Your Grief project, which began today.  Today's subject was "Sunrise" so I diligently set my alarm for 7am and actually got up the first time it went off for once (first time ever more than likely).  I have to admit that when I first looked at the subject list, I became discouraged and overwhelmed, but then remembered the spirit behind the project is healing.  When I looked at the sunrise this morning through the trees, I realized how special it was that I was actually taking the time to just look at the beauty of the sun.  It reminded me of the beauty of the sunset during our ceremony for my baby girl on her birthday and I know she smiled down this morning, even though my picture is by far not the most beautiful I have seen posted.  I did not rush as I got ready and I was not late for my doctor's appointment.  I was able to enjoy the beauty of the morning.  For that, I am truly thankful.

~T.

Prayer Flag

I know it is has been a good long while since I have had any blog posts. For that I am truly sorry, I can only say that I have been in a dark place for much of the summer. A week ago today was my sweet baby girl's due date and I will need a whole blog post to explain the beauty of that day for me and my husband. I feel we were able to honor her and allow her to see the joy and love we hold for her in our hearts. I do promise to come back to it in a future post. A few weeks ago J and I worked on creating a prayer flag for our Taylor to hang for October 15 at the Baby Remembrance ceremony that will be held on Christian's Beach in Australia.  Carly Marie's website has been such a blessing to me over the past few months and I was excited when she posted her upcoming project she wanted to do with Prayer Flags from all over the world.  J and I were thankful to have such a beautiful way to honor our daughter.

We used a fabric marker to write a message on the back to our daughter in Heaven.  I won't get the opportunity to sew blankets, play mats, curtains or dresses for my little girl, but she does have a prayer flag full of love.  It was also my first completed project with my sewing machine; I just received help with the embroidery of her name with my Memaw's fancy machine :)  It gives me a great amount of joy that the first thing I ever really sewed was for my baby girl.  I can't wait to see pictures of her flag on the beach.  I wanted to spend so much time in the water with her, but at least I know in a way we are experiencing the beauty of the ocean together now.

~T.

And so it begins...

I know this blog is for Turner Syndrome diagnosis, but I imagine that, like me, many TS women end up on the Assisted Reproduction route.  So I am including my IVF journey on this blog because a. it's good information and b. I really need an outlet!
After 3 weeks on the birth control pills (backward sounding, yes I know), I began my series of injections this past Saturday night.  Due to my AMH being so low, my RE has put me on the max dose for all of the stimulation drugs, which are in my case Lupron, Menopur, and Bravelle.  Here is what all my "equipment" looks like getting ready for my injections:

Luckily, the bottom 7 vials are combined into one injection, so although it looks like a lot it was only 2 injections in my abdomen.  Something I forgot about until I began my first injection for the first time... they had said "it will burn".  I didn't forget after that first time.  The Lupron burns slightly and causes a large rash over more than just the immediate area surrounding the injection and itched for quite awhile after.  The Menopur/Bravelle combo burns more than slightly and sometimes left an irritated place.  You would think it stops burning once you stop injecting, but no, it continues to burn somehow for about an hour post-injection.  I don't tell you all of this to complain, but to be honest and forthright about my experience.  The entire time I am dealing with the uncomfortable sides of IVF, I am reminding myself how blessed we are to even be able to have this chance. 
As the days go by, I find myself a little more emotional, a lot more bloated and having to go to the restroom more frequently.  Not to mention my poor tummy feels more and more sensitive.  Every other day I am going in for blood work and a vaginal ultrasound (as fun as it sounds!).  We are constantly praying for just the right amount of eggs and for those eggs to be healthy and TS free so that we have the best chance at a healthy baby before I run out of eggs.  I am learning more and more each day how little control I have over this entire process.  I have thought maybe that is what God is trying to teach me.
~T.

The Neurologist

  An appointment with a neurologist probably isn't on the typical list of doctors to see when diagnosed with TS, however I have already been seeing a neurologist for about a year now.  Since I was due for a follow-up with him, I decided to pose some questions.  I have found my neurologist to be one of the most intelligent people I have met and last year he was actually the one that discovered my Vitamin B-12 deficiency.  After initiating B-12 injections, I have found such a great relief to a lot of my joint pain (a random, unexpected, yet positive side effect to adding B-12).  Since he caught something, seemingly simple but apparently not since no other doctor did, I posed the question of testing for Celiac's disease and the MTHFR test, which will tell you if your body is able to break day folate/B vitamins appropriately.  This test is used for two reasons: 1) depression that has not been alleviated with anti-depressants because your body may not be synthesizing correctly and 2) recurrent miscarriages due to blood clotting issues.  Although he stated he appreciated my research and feels I will have to be an advocate for myself, he feels I need to go back to all the other doctors and provide this new diagnosis to them and allow them to run a full gamete of tests and not just pick and choose.  He said he is shocked to find out that I have TS because I am not the typical phenotype.  He looked at me in amazement and stated "I have never met anyone like you!"  Any other time that statement would have sounded seductive lol, but in this case I told him that was not necessarily a good thing.  He told me he had never met a mosaic TS before, but would definitely be doing some research for me.  At least I have him in my corner now. 
  My husband and I decided to call around to see if any of the pediatric TS clinics can recommend an endocrinologist that specializes in TS for adults. Apparently that is definitely a direction I need to head because some signs of pre-menopause can include.... joint pain!  So there may be a lot of my issues that can be fixed if we can see to get any hormonal issues straightened out.  I had never had a hormone check because... well I'm only 29, so who would have thought?
Just trying to navigate through all the craziness....

~T.

Strength Found

Yesterday at church God spoke to me.  I mean spoke so clearly that I felt He could have been standing in front of me speaking out loud.  While singing the worship songs, I began praying and telling God that I just don't even know what I am supposed to be praying for.  I have tried and tried to pray and after losing Taylor Grace (1st blog), I learned that just because you pray and believe, sometimes God has a different plan.  This knowledge can make prayer a very difficult thing and so I have struggled with how to pray, knowing God's plan may not be what I am praying for.  Saturday was such a low, low day for me after overhearing a conversation about someone about to deliver their baby, her due date is this week.  I really was feeling like having a baby was not a possibility for me and that I was just not "getting it".  As I was praying I told God "I don't know how to pray, I am trying to understand [everything going on], I just don't."  Very quickly and very distinctly the words "You don't have to understand, I do" came into my head.  Then I prayed "But God I don't think I'm strong enough to handle this." Just as quickly as the first time, I heard "You don't have to be, I am strong enough."  I wish I could explain into words how I knew those words were from Him.  I had the same conversation with my husband the night before and he told me "you are strong enough", but I just knew I wasn't and that is why I have been struggling so much.  BUT, God knew the words I needed to hear, even if I never knew what those words were- God is strong enough.  So I share these verses with you:

The Lord is my strength and my song; he has become my salvation. -Psalm 118:14

He gives strength to the weary and increases the power of the weak. -Isaiah 40:29

The Lord is the strength of his people, a fortress of salvation for his anointed one. -Psalm 28:8

The Lord gives strength to his people; the Lord blesses his people with peace. -Psalm 29:11

I can't tell you the peace I felt after I heard those words.  I have allowed myself the opportunity to not spend every waking (and sleeping according to what my dreams have focused on) second on worrying about what is to come.  Worry only robs today of it's joy.  I have found the one thing in my life I truly and honestly cannot control, so I must give it to God.   

Cast all your anxiety on him because he will give you strength. -1Peter 5:7

Next week I follow up with my neurologist, whom I have been seeing for about a year.  I will update him on my diagnosis and see if he has any insight.  He is the one who introduced me to the joys of Vitamin B12 and its miraculous effects on me.  I plan on asking him about the comorbidity between TS and Celiac disease.  I'm wondering if that may be the answer to my long-standing very painful stomach issues.  Always more questions, right?

~T.

AMH

  AMH results are in... 0.69 ng/mL.  This officially puts me in the "low fertility" range.  We knew it would be low after my lower follicle counts, but I was hoping not quite that low.  I had to do a lot of deep breathing to keep from crying throughout our 2 hour appointment Tuesday.  We completed our loan process and later Tuesday paid the $3,000+ for our medications.  Both hubby and I began our specialized prenatal vitamins on Monday and now all the others are waiting for the first day of my cycle, when I will begin the birth control pills (I know sounds backward) and call the office to get my schedule.  On Wednesday, we had our PGS (pre-implantation genetic screening) counseling appointment over the phone for them to completely explain that process.  Thursday, hubby signed for the box-o-shots and now it is just wait time.  I go back and forth from hopeful to hopeless and after re-watching Soul Surfer I keep reminding myself of when Bethany said "I don't need easy, I just need possible."

Jesus looked at them and said, "With man this impossible, but with God all things are possible."

  Sometimes it is hard to see pregnant women and wonder "Will that ever be me?"  I just try to take it one slow day at a time and rely on my support system to carry me through.  I am so blessed with the family and friends that I have, but most especially with the amazing husband God has gifted me with.  Without him, I wouldn't have made it this far and I would have lost every last bit of hope.  And again I remind myself that with God all things are possible.

~T.

The Reproductive Endocrinologist

  I have decided to skip over a few doctors, which I will come back to later, in order to share in my most recent experience.  Although, there has been a lot to come from my diagnosis, the issue that is effecting me most prominently right now is the issue of whether I will be able to get pregnant and carry a biological child, a healthy biological child.  While I have wanted to adopt since I was 12, I have also wanted the experience of being pregnant and sharing that with my husband and family.  I know in my heart that I will love a biological and an adopted child the same.  I just wanted the opportunity for my husband and I to have both experiences, two uniquely different and special experiences.

  Last week my husband and I met with a reproductive endocrinologist (RE), following the advice of the genetic counselor and the high-risk OB.  After sitting down and meeting with him, he did an extensive vaginal ultrasound to check the structure of my uterus, cervix, fallopian tubes, and ovaries.  He said structurally everything looks good: nice healthy cervix, no scarring in my uterus, no blockages in fallopian tubes and the sizing of my ovaries looked good.  The problem he noticed was with my follicle count.  One of the issues with TS is the risk of premature menopause and premature ovarian failure.  While most women my age would have 6-10 follicles per ovary, he only found 4 on one side and 5 on the other.  This led him to believe that I did in fact have a diminished ovarian reserve.  His recommendation was that we not wait to start the IVF (in-vitro fertilization) process because if we did, even a year, it may be too late.  He stated that even if we tried to get pregnant naturally, if we did not have a healthy pregnancy and had a miscarriage, we may not have enough of my eggs left to have a successful IVF cycle.  This news was shocking to me since I have always had regular cycles and never had any signs that I am "running out of time".  Additionally, they took some blood work to run an AMH (Anti-Mullerian Hormone) to obtain a more accurate count on approximately how many eggs I have left.  Here is a link I found with more info on the AMH: http://www.drmalpani.com/amh.htm.  We have an appointment today to go back and review the results of my AMH and to get information on our next step. I will update you with the results and our process soon.

  
  I am trying very hard to remember the Father's Day sermon from two days ago.  After crying through the first few minutes of the service, where they have all the dads stand up to be applauded and I had to watch my husband, father of my angel baby just sit there, I was able to take away an important message.  I have to remember that it is not about obedience to God, but dependence on Him in my life.  This situation that I am in is something that is completely out of my control.  I have to continue to roll with the punches as I receive more and more information.  I have to rely on God's plan for my life and know that His plan is greater than anything I could ever control.  It's not enough for me to just obey His words, but I must depend on Him to do what is right for me, whether I can figure that out now or not.  I will continue to pray for His love and almighty wisdom in the coming days, weeks and months.


~T.

The Cardiologist

  The first appointment after my diagnosis was with my cardiologist.  When my OB/GYN told me about the diagnosis over the phone, she stated it was very important for me to follow-up with a cardiologist due to the possible risk of aortic dissection.  It was explained to me that about a third of women with TS have cardiac issues.  I called a cardiologist that was a friend of the family (long-time friend of my uncle) and his office actually got me in that same day due to a cancellation.  He completed an echo-cardiogram, or sonogram on my heart.  This procedure was completely pain free and not uncomfortable at all.  He was able to provide me with the results right away and said that the echo came back perfectly normal.  He recommended me to go ahead and have an angiogram, like a CT scan for your heart.  That was scheduled for a week later. 

 The angiogram was a little more uncomfortable.  It involves having some dye injected into a vein in your arm, which then spreads down the length of your body.  For me, it felt like my chest was very heavy and tight and then a warmth spread down my body into my abdomen.  At one point it really made me feel like I was going to urinate on myself.  Luckily the tech had warned me about this sensation before I started so I knew I wasn't a grown woman having an unfortunate accident on their testing table.  I remember just feeling very anxious throughout the test.  The cardiolist's office called me the next week and said that those results too were normal. 

  The doctor told me that with good results on both those tests, he was not overly concerned about my heart and that it looked very normal.  He recommended that I follow-up every two years for the rest of my life, just to make sure nothing comes up.  He also recommended that if I get pregnant, I should see a high-risk OB, just to monitor issues that may arise due to increased stress on the body during pregnancy. 

  If you are newly diagnosed with any form of TS, your doctor will tell you that a cardiac check-up is a must.  For more information on possible issues involving your heart, the Turner Syndrome Society has great information and suggestions.  http://turnersyndrome.org/resources/healthcare-topics

~T.

The Diagnosis

    I was encouraged to begin this blog after my own search for women sharing their experiences in my situation turned up nothing.  I thought that maybe if I shared my path and the impact my diagnosis has had on my life, it could be beneficial for someone down the road.  I have longed so much to talk to someone who has walked this path before me to give me advice, encourage me, help me figure out the next step, and I have yet to connect.  I hope this blog will be an encouragement and a blessing to you, even though as I write this, I don't know how my story ends.

So how did it begin?...

    I guess I will start with what is most important to me.  After more than 2 years of trying, including about 5 months of using an OPK (ovulation predictor kit), my husband and I found out we were pregnant for the first time on January 23, 2012.  I had taken a pregnancy test the week before and it came back negative.  After another week of waiting for the dreaded period to come, I went ahead and took another, the only reason being is so I could "let go" of the idea that pregnancy was a possibility.  After 2+ years of trying I have had more than my fair share of negative pregnancy tests and with this one there was not an inkling of belief in me that it would turn positive.  Boy was I wrong!  It turned positive in less than 30 seconds!  My hands shaking, I walked down the hall to share the most wonderful news I had ever received with my husband of 5+ years.  We were ecstatic and scared that it could all be too good to be true.  I did the usual blood tests to check my hCG levels over several days and they went up just like they were supposed to.  I was 5 weeks pregnant.  Finally!  Two weeks later we went in for our first exam, more bloodwork, and our first ultrasound.  I was so terrified that the pregnancy would not be real, that something would be wrong.  When we heard our baby's heartbeat for the first time and saw the little blueberry, I had tears in my eyes.  It was the purest, happiest moment of my entire life.  As my mom said, "best picture ever".  We were told it would be safe to share our good news since the heartbeat was so strong and all the labwork looked good.  Over the next few weeks we shared the news with parents, siblings, aunts and uncles, grandparents, cousins and a few select friends.  We made so many plans and were so incredibly happy, the happiest time of our lives.
    I wasn't prepared for that 11 1/2 week checkup.  We planned on sharing the amazing news with the rest of the world that next Monday, the 12 week "safe mark".  Five days shy of that mark my world collapsed.  The words I will never be able to get out of my head as the doctor looks at the ultrasound of my baby, "Guys, I am so sorry, I can't find a heartbeat."  Everything seemed to happen so fast then, she brought in another doctor to confirm and we were given our options.  We elected to have a second opinion at a perinatologist.  He confirmed what we already knew and said there was no chance that they could be wrong, not with a baby that far along and that size.  Our baby was only the size of a baby around 9 weeks, instead of 11.  My doctor strongly advised me to proceed with a D&C due to the size of the baby and the risk to me.  The procedure was scheduled for March 9.  I can't even begin to put into words what I felt and the thoughts that went through my head during that time.  I will leave those for another post.  Suffice it to say that I never have to question what the worst day of my life was or how the experience changed me.  I felt like I had lost my whole world, all my hopes and dreams for the future family I wanted my husband and I to have together, all my hopes and dreams and the planning for that little one growing inside.

    We found out several weeks after the procedure that my baby had something called Turner syndrome.  Turner syndrome is one of the biggest causes of miscarriage and 99% of babies with the syndrome either spontaneously miscarry or are stillborn.  Turner syndrome (TS) is a chromosomal condition where either all or part of the second x chromosome is missing.  We now also knew at this point that my baby is a little girl, since only females can have TS.  I have found records stating that anywhere from 10-20% of miscarriages are caused by TS.  It is not a genetic condition, meaning a woman cannot be a carrier of a TS gene and if you have one baby or miscarriage due to TS you are not more likely to have another with the condition.  Usually.

    The case is different for me for a very important reason.  When my husband and I went for our post-surgical followup appointment, the doctor's office took blood work in order to do our karyotype testing.  Even though they would usually only proceed with the karyotype test after 2+ miscarriages, they recommended we go ahead since we had been trying to get pregnant for so long.  After a few weeks, the doctor called and I received another shocker.  I was diagnosed with Mosaic Turner Syndrome.  Mosaicism just means that instead of me missing the second x chromosome in my entire DNA strand, I am missing it in some parts of my DNA, but not all.  I couldn't believe the diagnosis was true because everything I had read about TS after I was told my baby had it, did not match me. According to what a woman with TS looks like, I wouldn't fit into that phenotype, or the observable traits.  I am tall, do not have the extra neck skin, and have a normal hairline and eyes.  Also, I have had a regular period since the age of 12 and was able to conceive a child.  Typically someone with TS will either have an irregular cycle or never start their period at all.
    Due to the fact I have TS, I am more likely to conceive a child with TS because my eggs may not have the appropriate DNA coding to pass on.  This puts me at a higher risk for miscarriage.
How much higher? Not sure.  Possible to conceive and deliver a healthy, biological child? Not sure.  
Everything I knew about myself changed in that instant.  The phone call that once again flipped my world upside down was received on April 10, two months ago yesterday.

I would like to share throughout various posts all of the doctors I had to followup with and what my experience has been thus far.  Again, I hope this blog is a blessing to you on your own journey.  I am looking for meaning behind this diagnosis and hoping some greater good will come of it.

~T.