Our precious angel Alexa Lee...

Yesterday our little baby girl Alexa grew her wings.  She has surrendered to God and is now watching over us from heaven.  She held on for 35 weeks and fought for her sister Sophia.   We are so sad that we will not be able to meet our precious girl but we have to take comfort in knowing she is in a safe place.  My Grandmother Teresa, my little sister Chloe, Bills Papa Bill and Nana Eleanor greeted her with open arms and they all are smiling down on us.  They will keep her safe and she will live out her life while watching us from above. 

My prayers may not have been answered for I will never be able to meet Alexa and she will never be able to take a breath of air on earth but that does not make her my daughter any less.   She will always be a part of our lives and I love her with all of my heart.   

I don’t think I will ever fully understand why God takes children away but I have to think that maybe Alexa was never mine to keep.  She was here to help Sophia survive and to teach us a lesson on how powerful love and prayer really is.  I could never have stayed strong if it was not for the support that I received from all of my family and friends.  I could never have stayed strong if it was not the faith that I put into God and I never would have learned how much of an impact one baby can have on ones heart.  She amazed me and against all odds she survived and carried her sister and me through to the end.

It was 15 weeks ago that we received confirmation that Alexa has Trisomy 18.   This was one of the worst days of our life.  This pregnancy has been so tough for us all and Bill and I just want to thank you all for being there for us.  The fight for Alexa is over and she is now happy and healthy up in heaven.

She will forever be a part of our lives and we will never forget our beautiful angel that touched our lives in so many ways.

 

Time is flying by...

~ August 26, 2011 ~    I cannot believe how fast this year has gone by.  I can remember January 26^th like it was yesterday.  Not only because it is my wonderful mother in laws Birthday but also because we received the best news of our lives.  We were PREGNANT!!!   Now we are 34 weeks and almost to the finish line.  The past couple of weeks or so have been a little rough.  From contracting for 15 hours every 3 minutes, losing my "plug", going to the triage two days in a row and getting hit with the “pregnancy hormones” from hell!!!  It has been an adjustment for me.  I feel like I have lost control over my body and my emotions.  As most of you know, I kinda like to be in control, maybe sometimes to much, but being 34 weeks pregnant and not having a say in when or where I will go into labor and not being able to control my emotions to get through a darn commercial or sitcom without crying my eyes out is driving me nuts.  Everyone says this is normal and it happens to everyone towards the end of the pregnancy so I will just have to deal with it. :)      

Being in the triage last Monday and the nurse telling me that I needed to be hooked up to an IV because they couldn't give me anything to eat or drink "just in case" we need to have a c-section today, freaked Bill and I out!  We did not have our game plan or our bags packed.  Needless to say we are more ready now seeing that these girls can pretty much come whenever they choose.  Our bags are packed and in the trunk, camera and video camera are charged and thanks to my dear friend Heather our bed is protected in case my water breaks! LOL At our doctor’s appointment this week we had a non-stress test and an ultrasound.   Sophia is 5.2lbs!!  YAH! She made it over the 5lb mark, which we are very happy about.  Alexa is still having a hard time gaining weight.  She is now 3lbs smaller than Sophia and is 2.2lbs.  She is so tiny.  Alexa is still breech and she has been this way since the beginning so we will be having a c-section.  We will schedule this at my appointment next Tuesday afternoon.  I have mixed feelings about a c-section but regardless it will be easier on the girls than a natural delivery so I am sure I will manage.    

The non-stress test went well.  The doctor’s order is to only monitor Sophia so I sit in a recliner while they hook up the monitor to hear Sophia’s heartbeat and another to monitor any contractions.  Anytime I feel Sophia move I push a button.  I feel like I am pushing that button every second.  Sophia is so active and is moving all the time.  Its amazing and also painful sometimes depending on where she is kicking and punching.  The test is very simple and takes about 20-30 minutes.  I now have to get this done twice a week until they are delivered.    

We did not get any pictures of the girls this week, so I thought I would share some pictures of my enormous belly instead!    

Reality Check - Week 31

Our appointment yesterday was another harsh reality check.  In between appointments, which is about 3 weeks, I push myself to have this positive outlook on Alexa’s health.  Even with a break down here and there, for the most part I try to just be happy that she is still with us and that we do have a healthy baby girl Sophia who is growing and healthy.  Then I get to the doctors appointment and they reassure me that things are not ok with Alexa and they are never going to be.  I pray everyday that she will make it through labor and that I will be able to meet her if only for a little while but Alexa is never going to call me mommy, she is never going to get in fights with Sophia over what color sippy cup she gets or which book they want me to read them at night.  Every appointment is a harsh reality of what we are really dealing with and it breaks me each and every time.  I love both of my girls more than words can say and  I can’t help but sometimes even be mad at myself for not being able to help Alexa.  I am helpless.

Since our last appointment, Alexa has only gained 6oz.  Now she weighs 1lb, 11oz.  This really caught me off guard because we were expecting at least a full pound like last time but I guess I have to remember that every little bit of growth is good and that she is still being a fighter.  I just fear that in a couple weeks when we go back, she may even gain less.  The only thing Bill and I ask is that we get a chance to meet Alexa, hear her cry, meet her eye to eye and even have her tiny fingers wrap around ours.  These are the only memories we are asking for and I feel with every appointment that we have, these chances are getting slimmer and slimmer.  If she does not continue to grow then it will be just that much harder for her to survive, even if it is for only an hour, a day or maybe even a few days which would be the best blessing we could hope for.  I just want Billy, Sophia, Alexa and I to be together as a family for the most amount of time that is possible. 

Sophia is my saving grace.. She is growing so beautiful and she is such an active baby.  She stretches and kicks all the time and my stomach now looks like the Indian Ocean with all the waves she creates. Yesterday she weighed in a 3.14lbs which is a complete 1lb growth since our last appointment.  The doctor said this is perfect and she is in the 54.1 percentile.  If it was not for Sophia I really don’t know how I could go on fighting.  We all talk about who she is going to look like and how her personality is going to be.  I can’t wait to snuggle her and to love her every minute of everyday! I will never take her for granted and I will always embrace the story of her sister Alexa.  I will share the story of how Alexa stayed so strong for her and the bond that I can already see forming just through a simple ultrasound.

A few weeks ago I had some maternity photo’s done by my cousin Amy and my favorite one is captured below.   If you notice to the left of me you see Sophia and Alexa’s pink elephants.  My parents got them these elephants on mothers day.  The day we find out Alexa was sick, I was having trouble sleeping and Bill brought me in the elephant so I can sleep with it.  This is Alexa’s elephant and I told Bill, that as long as Alexa is holding on, I will hold on.  I have slept with this elephant since day one and when the time comes to finally say our goodbyes to our angel Alexa, this elephant will go with her and keep her company while she is sleeping.  

I love both my baby girls!

  

 

Burlington Baby Shower...

Three words: Beautiful, Pink and Loved.   

These are the 3 words that come to mind when I think about our shower this past Sunday.   Pink decorated cupcakes centered each table with special baggies of Hersey kisses reading “Stephanie’s Baby Shower”, handmade white chocolate baby face pop’s wrapped in a cute little onsie with a photo frame and a bottle of lotion as favors.  So many games to play and beautiful balloons with precious ceramic baby booties as weights. So many people there to celebrate Sophia and Alexa.. Billy and I felt very special to be surrounded by everyone!

Down to every detail I have to thank my mother-in-law Kathy, my sister-in-law Chrissy and Carly for all their time spent and the details they put into this shower.  Bill and I were blown away by everything the minute we reached the doorway.  I think pink is everyone’s favorite color now!

The day was perfect, the breakfast buffet was delicious and the gifts overflowed.  We thank everyone for coming and sharing our special day with us.  We received so many amazing & unexpected presents for our girls including our stroller, red flyer wagon, Red Sox diaper cake, our bassinet, a portable DVD player for car rides, all the classic Disney DVD’s with matching story books, the most beautiful toy box that matches the nursery perfectly, a hand knit red sox sweater that is so adorable and so much more! I can’t list them all because we were definitely spoiled by everyone and words can not explain how thankful we are to have such an amazing family.  I for one feel like the luckiest girl in the world to be married into such a wonderful family.

Thank you all so much!

Love,
Stephanie

Cape Baby Shower...

I don‘t even know were to begin.  Our shower this past Sunday was absolutely perfect.   From the beautiful sweets table, to the homemade food made by our family and friends, tons of beautifully wrapped presents, onsie and bib station (which people amazed me with their creativity), special message cards to our baby girls and most importantly being surrounded by the best family and friends any girl could ask for.  I felt so loved and so spoiled! 

A couple of months ago I was not even going to have a shower.  There is not an hour that goes by that I am not thinking about Sophia and Alexa, so how could I manage my emotions enough to get through a shower in their honor?   I must say that I was happy that I did because being around family and friends is exactly what I needed at that point.  I will never forget the pain that we are dealing with but it was a day were I could just enjoy being pregnant with our twin girls.  I have not had that feeling in quite sometime. Thank you  to everyone for just being there to celebrate our girls and not to be sad or talk about the “what if”.. It was a perfect afternoon with family and friends preparing us for our girls to enter into this world and I can’t thank you all enough for making us feel so comfortable and for understanding what Bill and I are going through.

Special thank you to

*Niki for her delicious veggie lasagna and to my aunts for their yummy side dishes!

*Mary, Katie, Casey and my Aunt Laura for their delicious fancy deserts which complimented the sweets table perfectly

*Heather R for her homemade princess onsie cookies that were not only adorable but also so delicious!

*Mama W and Chrissy for making the trip down and making her famous Chicken Salad.

*Special thank you to my little sisters Gabrielle and Madison for their hand written letters to me that I couldn’t read at the shower because I knew I would get upset.  They were the sweetest letters I have ever read and I will keep them forever.

*My Dad and brother for moving all the heavy furniture around the house and setting up the tent outside.. Good thing you were still able to fit in 18 holes that day or I would have really felt bad!

 *And of course to my mom and my sister Heather for taking days to set up for this shower… Being covered in white chocolate and cup cake mix, elbows deep in lasagna to making lime lemonade by scratch until 12am just because I wanted pink and green special drinks… This list would never end if I had to list all that you two put into our special day and I can not thank you enough for making this a shower I will never forget.

Billy and I are so very grateful for you all!

Can’t wait for our Burlington shower hosted by my amazing mother-in-law in just 2 weeks! I am sure I will love it just as much!

27 Weeks and growing....

 Hey everyone!

God answered our prayers this week and our appointment yesterday went so well.  Alexa amazes me already.  She has gained a full pound since our last appointment and she is now 1 lb 5 oz.  During the u/s she was dancing all around, kicking and holding her hands over her head.   She inspires me every-time I see her on the monitor.

Her sister Sophia was being difficult and we left the office with no good picture of her.  She is doing extremely well and is in the 92nd percentile for weight.  She is 2 lb 14oz!! Almost 3 pounds already.  At first I was concerned that she is growing to big but the doctor assured me that everything is ok and that it is normal.  I don’t think that I will fully believe that there is nothing wrong with Sophia until I hold her in my arms and the doctors confirm that she is healthy. A part of me is so scared to loose both of my girls.

We did not get any good pictures of Sophia but the tech did capture a great picture of both the girls face to face.. Looks like they already have a strong bond.

At our appointment yesterday not only did we meet with our doctor and have an ultrasound but we had an appointment to meet with a doctor from the NICU and was able to get a tour.  The doctor’s appointment went well.  I had to have a glucose test and drink that nasty drink! It got worse with every sip but I PASSED!!  Meeting the NICU doctor was pretty rough on both Bill and I.  We were faced with some tough questions.  Questions that I never thought we would ever have to answer.  We have to make decisions on breathing tubes, feeding tubes, surgeries, etc..  we need to make the right decision for Alexa and try to put our feelings and wants aside.  Of course we would want to do everything we can to try to save our daughter but we need to think of her quality of life and what is the best thing for her.  We just want her to be comfortable.  We are hoping and praying for a miracle every day.

Overall our day in Providence yesterday went well.  Alexa is still with us and Sophia is doing great.  Thank you to my mom and sister Heather who was with us for the day and purchased us these adorable pink teddy bears for the girls.  One was a little smaller than the other and it was just the cutest thing.   When we came back from the NICU they had them on the table facing each other just like the girls were in the u/s picture above.

Our next appointment is in a few weeks.. Within this time, I will have received our maternity photos and will have my Mom’s shower and my mother-in-laws shower so I will post pictures soon after each event!

Thank you again for listening to our story and for being so supportive.  Each prayer counts so we thank you for praying for our girls!

Love,

Stephanie

Beginning of our Story of IVF, Twins and Trisomy 18

I wanted to start this blog to keep our family and friends involved with everything going on with our pregnancy.   I will update this blog with my thoughts and updates of doctor's appointments so everyone will know at once how everything is progressing.  This story is easier for me to write than it is to speak so I hope everyone understands. 

I am not a blogger, a writer, heck I don't even have a diary so I will apologize in advance for the many grammar errors you will find and for the lack of writing skills. These words are just flowing out as I type our story and my emotions are all over the place.

For some, you do not know that Bill and I had a hard time even getting pregnant.  After almost a year of trying on our own, we turned to our OBGYN to help us find out what could be the cause of us not getting pregnant.  After several blood tests and about 6 procedures (1 HSG test and 5 IUI’s), the results always came back inconclusive or yet another another single lined pregnancy test.  This all meaning that we have unexplained infertility.  Our next stop on our "Infertility Roller-coaster" was to Tufts Medical in Boston for our first attempt in IVF - (I will blog soon about my personal experience with infertility).  The process it took us to get pregnant was unbelievable.  We learn as we grow up that it only takes one time, well for Bill and I it took about what felt like a million negative pregnancy tests, tons of hormone medication and giving myself shots everyday to figure out that it is not as easy as one may think.

We were so pleased to find out on January 26th that our first round of IVF was successful. We were even more pleased to find out that both of the eggs that we implanted took and we were pregnant with TWINS!  This was such an unreal feeling. I couldn't believe we were not only blessed with one baby, but two!!  This whole last year and a half was well worth all the pain, needles, hot flashes and sleepless nights.  We were finally going to be parents!  Our dream was coming true.

My first trimester was full of throw up, headaches, tiredness and trips up to Boston for ultrasounds.  It really was not that bad.  I would say that I was lucky.  I have heard how bad morning sickness can get with twins.  We were released back to our local OBGYN for our 12-week appointment so the trips to Boston in rush hour traffic were over. We were excited about that.

At 18 weeks along with my parents, Bills mom, my two younger sisters and my best friend Heather we traveled to the Stork Connection in North Dartmouth to find out the babies genders.   I would definitely recommend the stork connection for everyone.  It is expensive but to have your family and friends in the room with you is an experience I will never forget.  We found out we were having 2 girls!  We were all a little shocked because we were all set on 1 boy and 1 girl but I must say that deep down I didn't care of the gender, I loved both of these babies so much already.  It is strange as an expecting mom, the bond that you have with your unborn child at such an early age.  I don’t think anyone truly understand this feeling until you are pregnant. 

The following week, Bill and I had the day off and we went to our normal doctor check up and ultrasound at my OBGYN’s office and then we planned on going to register for our baby shower with my mom.  This day turned out nothing as I had planned for my whole world turned upside down when the doctor spoke the words "there is something wrong”.  No expecting parent wants to hear this news.  She continued to tell us that one of our babies was developing more than 2 weeks smaller than the other and that she had a club foot.  She went on to say that these are both symptoms of either Down syndrome or a genetic disorder like Trisomy 13 or 18.  I am pretty sure as soon as she said something was wrong, I was in a daze.  I was crying and I could see her speaking but I wasn’t listening.  It took all my power not to jump up from the bed and run out of the office.  She could not give us a clear answer so she said we have to wait a week to get into Providence for a level 2 ultrasound.   We tried to stay busy as for Bill went back to work and I went onto California for a work conference.  Not a day went by were I was not frightened and nauseous at the fact that there may be something wrong with our baby or even worse both of our babies.  The babies that we wanted so very badly and went through so much to have.  We decided that it would be best to name our girls before we found out any further news.  So across the country from one another we decided on two names; Alexa Lee and Sophia Rose.  No more Baby A and Baby B.  Our girls now have an identity.  We decided that whichever baby was located in the first position would be Alexa and the 2nd baby would be Sophia.  They change spots every ultrasound so we really didn't know who would be who. 

The day after I returned back from California, Bill, my mother and myself made the trip up to the PDC at Women & Infants Hospital in Rhode Island.   Here we had a level II ultrasound and the doctor and a genetic counselor came in to talk about the results.  They did confirm the same results as our OBGYN.  "Baby A", Alexa Lee is growing smaller, has a club foot and has 2 choroid plexus cysts in her brain.  All symptoms of Trisomy 18 or another genetic syndrome.  After breaking down and feeling the same way that I did back at my OBYGN a week earlier, I caught my breathe and we met with the genetic counselor to explain what our options were.  Continue the pregnancy with no testing and take the "just see what happens" approach or we could have an amnio done on just one or both babies to determine what exactly is wrong.  That day we decided to have an amnio done just on Alexa for there are no symptoms at all that would cause us to think that Sophia was in any danger and I didn't want to double the risk of a miscarriage.  The amnio was down that same day, it was painful but I just remember staring into that little black and white monitor at Alexa moving all around and knowing that she is not in pain.  After the appointment, I think we were all wishing that it would be Down syndrome or better yet a mistake.  We had to wait about 24 hours for the results.  At home, I researched Trisomy 18, otherwise none as T18 or Edwards Syndrome and it was the scariest thing I have ever read.  T18 is a condition that is caused by a chromosomal defect in about 1 out of every 3000 live births.  The effects of this syndrome are fatal.  This syndrome is known to the world as being "Not compatible with life".   It is frightening and made me nauseous to think my daughter may not survive.  If you are interested in learning more about this syndrome you can go to www.Trisomy18.org

The next mourning I answered the phone to hear the worse news confirmed.  Alexa has full Trisomy 18.  I dropped the phone and started crying into Billy's arms.  Thankfully my mother was there to pick it up and finish the discussion with the counselor.  After receiving the results; Billy, my parents and myself sit in my living room quiet.  Not knowing what to say or what to do.  My mind just racing with thoughts on why this is happening, will Alexa be in pain, will I ever get to meet her alive, how can I deal with burying my daughter.  My thoughts were endless and it kept me up every night for the first couple of weeks. I felt lost, depressed and even though we have a great family that was there for us 100% and I have a supportive husband, I felt alone.  The worst part is the helpless feeling that you have.  Not being able to do anything to save my daughter from this awful disease. 

Day by day I am getting stronger and realize that Alexa is still with us.  She is fighting to get stronger and stronger each day too.  She is being a fighter for her sister Sophia.  Now we pray that we just get to meet her, even for a few moments.  I am 25 weeks so we still have a long journey to get to that point and I hope that she sticks with us.

I want to say thank you to my husband, both of our families and our close friends who have been there for us through all of this.  The text messages, cards, kind words, dinners, etc. do not go unnoticed.   I would be lost without all of you.  Special thank you to my Mom who is there for me for long commutes to the doctors, getting me out of the house even know I feel like crawling up in a ball and crying, her good advice and for always being there to listen to me when I need to talk.  I love you.

Thank you to my Aunt Debbie who sent me some books which one is entitled "I will carry you" by Angie Smith.  This book was read in less than 2 days, I couldn't put it down.  Finding out this horrible news, it was hard to not be mad at God.  I felt like I needed someone to blame.  This book helped me to believe again and to have the faith that I need to take it day by day and be strong for both of my girls.

A thank you to Lee, a member of the Trisomy 18 Foundation that has been in contact with me throughout the last couple of weeks sharing her experience 5 years ago with her 2 daughters, April and Carlee.  Your inspiring words have given me faith and assurance that everything is going to be ok.  I appreciate you taking the time and sharing your story. 

Here is an excerpt from one of Lee’s last emails to me that I would like to share: “Trisomy 18 is the killer of dreams-no doubt-but our babies give us dreams and hope by fighting against all odds--and even the tiniest improvement, is HUGE.  Alexa is saving Sophie's life by fighting so very hard-and you, the keeper of her legacy, even as it breaks your heart, cheers her on. It is a beautiful, painful dance we do as moms of twins. And that beautiful painful dance is one we do forever more. As we celebrate and are joyful for one of our daughters entering the world, and/or reaching every milestone--our hearts rip open because there should be TWO--we constantly say goodbye-we are always reminded. There always should be two. It is a harsh fact we live with daily.”

I have attached 3D images of both our girls from our appointment a week ago.  My next appointment is in 2 weeks and I will write again then…

Thank you for listening.

With love,

Stephanie

Sophia Rose - 24 Weeks - 1 lb. 9 oz.

Our fighter Alexa Lee smiling at us.. 24 Weeks - 12 oz.