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It’s the Little Things In Life

Sunday March 25, 2012 ~ 24 Weeks 5 Days

I can honestly say this past week was not easy.  I know this whole process is meant to shape us in some way, and God intends to use us for his own work.  I just wish this was not how it needed to happen.  Feeling our beautiful baby girl moving more and more every day, knowing the science behind the predicted outcome…really has been hitting me in the pit of my stomach.  I don’t want to grieve because she is just fine!  There is nothing to grieve!

Knowing I had a very emotional week, Danielle, a woman I work with, did her best to make it better.  I feel like she is “my person” at work.  On Friday, she had a day off unfortunately, and I was really bumming because of it.  At 3pm, Danielle showed up with a giant Tervis Tumbler, (because a few weeks ago someone magically took off with mine), decorated with a cherry blossom design, and filled with Vanilla ice and custard from Rita’s!  How did she know that this was exactly what I needed?!  I don’t think she really understands how much her kindness meant to me that day.  She reminds me that this is what friends do for each other.  It’s the little things in life that can really turn your day around.  I will cherish all of the small things in life…the morning rain, walks with my husband and dog, workouts at the gym, planting flowers in our garden, and friendships that are ever-lasting.

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Another Ultrasound with Unchanged Results

Wednesday, March 21, 2012 ~ 24 Weeks 1 Day

We went to Maternal Fetal Medicine for another ultrasound.  We were so excited to be able to see how Little Miss Sephora has grown, and I’m especially excited to see her precious face again!  We’ve been praying for our precious little miracle and big changes because nothing is impossible for God…but our high hopes were quickly thrown back under the bus.  The ventricles and fluid in her head have definitely gotten bigger, and they will continue to get bigger and fill with fluid as she grows.  Her eye development remains unchanged.  We did discover her heart defect is actually quite common in “typical” babies.  If she wasn’t affected with the Trisomy 13, her heart could be fixed surgically and she would more than likely survive.

After hearing this news, we came home and of course I was completely sad.  I really want to start buying things for her, but I can’t.  I can’t set up her room.  I can’t buy a crib.  As perfect as she is inside of me, I can’t do anything to prepare for her arrival.  All I can do is to love her.  She now weighs 1 pound 2 ounces and is currently in the 5th percentile as far as her growth.  We were told that she will continue to follow this slow growth until she is born.  This is very typical of babies with Trisomy 13.  She’ll be small and she’ll be adorable!

One thing we learned about her today…I think she may be a little camera shy!

You Are My Sunshine

Sunday, March 18, 2012 ~23 Weeks 6 Days

Most days I feel good.  I lay in bed for a few extra minutes to feel our baby girl bump and wiggle.  Sometimes it’s hard to think she is “sick” and has Trisomy 13, because she feels happy and “normal” to me.  I still sing to her nearly every day the song I’ve sung to her since before I felt her move…”You Are My Sunshine.”  I can’t wait for the day that I actually get to hold her and can sing “our song” to her as I rock her gently in my arms.  Another bitter sweet feeling I’m sure…as much as I wish I could stop time some days, I can’t wait for that day.

I feel like we know the facts of this diagnosis, and have resolved to “whatever happens, happens.”  But I’m really not exactly sure where I am today.  I had a meltdown with Chris almost 2 hours ago, but that was unrelated to the baby.  I’m sure I’m in denial.  Like I said, I feel like she’s ok…almost like she’ll be magically fixed.  The extra chromosome will just disappear.  We’ll go to our ultrasound tomorrow, and her ventricles will be smaller.  The hole in the bone in her head will have fused.  Her heart will have all of the proper connections.  Her eyes really are developing…I again imagine what it will possibly be like to say goodbye to her, as much as I can’t understand how anything could possibly be wrong.

The love that Chris and I have for each other, and for her, is perfection.  How can anything about her not be perfect?  How as a mother can I not see my first baby open her eyes, smile, laugh, call me MaMa?!  How can I possibly labor and give birth to her and not nourish her or stare into her big beautiful eyes and sing to her, and have her recognize that I am the one she’s waited all this time to see?  How does my husband sleep next to me and not fall apart like I feel like I am?  How is he strong enough to bond with our baby and know what we know?  Chris is completely in my corner.  He prays with and over me every morning.  He’s not afraid to be vulnerable with me.  He is my best friend.  At my worst and at my breaking point, he chooses to hold me up and love me more.  I’m thankful God brought him to me 6 1/2 years ago and groomed us and challenged us together, so that we would be strong enough and brave enough to withstand struggles and challenges that we are presented with.  I Love You With All Of My Heart.

Trisomy 13 and Our Palliative Care Team

Tuesday, March 5, 2012 ~ 21 Weeks 6 Days

Even though we don’t understand why God chose us to carry this precious baby, why she has this awful Trisomy 13 abnormality, and why we may or may not have time to spend with her while she’s living, we love her more than words can express.  We love to feel her move and wiggle.  I just noticed today, you can see my belly actually bump on the outside when she bumps too sometimes!

My husband and I were on our way to meet the Palliative Care Team at the hospital where we will deliver, when I received a phone call from a woman from our church, Lisa, who lost her baby at 39 weeks to Trisomy 18.  She asked us if we’d be willing to meet with her Life Group who all connected through the loss of their infant babies, for an evening of love, devotional stories, and connection.  When I hung up the phone, we were just pulling into the parking lot of the hospital.  I looked at my husband in amazement.  God understands this journey is not going to be easy, and he is placing people in our lives, who have first hand experience with this type of loss, that will help to walk with us.

Our Birthing Team (Palliative Care) is made up of a group of wonderful people.  Carolanne (chaplain), Sharon (labor and delivery nurse), Dana & Barb (midwives), and Dr. Lorah (NICU specialist).  We also learned through our church friend Lisa, that the NICU doctor (Dr. Lorah) was wonderful during her labor and delivery and thereafter.  What makes this even more unbelievable…This incredible NICU doctor, Dr. Lorah, also attends our church, will be with us as we deliver, and will be the first one on hand to assess her overall health and keep her comfortable when she is born.  God works in unbelievable ways by once again placing more people in our lives to hold our hands as we travel through to the end of our pregnancy.  He chose and entrusted us to carry, nurture, and protect this precious angel for him.  I ask myself, “What credentials must my husband and I possess to grow an angel for God?”  As the unknown approaches, I am comforted knowing His plan is much bigger than my own.  At least this precious angel will know what it’s like to be rubbed, spoken to, kissed, hugged, and enjoy the voices and singing of both of her Earthly parents before she is carried and welcomed into Heaven.  What a story she’ll get to share with all of her new angel friends when she gets there!

Isaiah 41:13 – For I hold you by your right hand-I the Lord your God.  And I say to you, ‘Don’t be afraid.  I am here to help you.

48 Hour Amnio Results ~ 21 Weeks 3 Days

Friday, March 3, 2012

We received the phone call at 9am from Dr. Bayliss.  He confirmed that we are definitely having a baby girl.  At this point, I know I stopped breathing because I knew what was coming next was something I didn’t want to hear.  He confirmed she does have an extremely rare and extremely severe chromosomal abnormality that occurs in 1:5000 babies.  She has Trisomy 13.  Every single cell in her body has an extra 13th chromosome.  This diagnosis explains the brain, the heart, and the eye issues.  He explained most Trisomy 13 babies are very small at birth…if we even make it that far.  Some make it to term and can live up to one year.  Some die in utero.  Some pass during the labor process.  We won’t know what the outcome of our baby will be until we know, essentially.  We will carry her for as long as we are able.  I’ll labor and give birth to her, and maybe we’ll be able to spend a few minutes, hours, or days with her before she passes.  We’ll still wake up and put hands on my belly and feel her move every morning.  We’ll watch my belly grow as she grows, and maybe still God will offer us a miracle.

I mentioned to Chris last night, I don’t know how we emotionally are going to handle the information that we know about our baby girl for the next 4 months.  I sometimes wish I didn’t know.  I know not knowing wouldn’t make the outcome change, nor would our emotions be any different.  In spite of what we know, I really do want to enjoy this pregnancy and the amount of time we get to spend with her from now until…  I still want to have a maternity photo shoot at 32 weeks.  I still want our friends and family to rub and kiss and sing to my belly.  I just want this pregnancy to be normal.

The Amniocentesis ~ 21 Weeks

Tuesday, February 28, 2012

Today is the day we are scheduled to undergo the amnio.  Our appointment is scheduled for 3:15pm at Maternal Fetal Medicine.  My emotions were all over the place this morning.  I couldn’t convince my body to stay on the treadmill for more than 5 minutes at the gym, because it gave me too much time to think and focus on the severity of the procedure I was about to undergo, and the health of our Little Sephora…Yes.  That’s her name.  Sephora Angeline.  My husband chose this name for her nearly 1 month ago when he saw the name of a makeup store while we were walking around our local mall.  As soon as we passed the store, I knew what the look on his face meant.  He looked right at me, eyes bright and glittery with excitement.  I looked right at him and exclaimed, “NO!”  “REALLY?”  “NO!”  A week later, while getting ready to head to church, he screamed from the bathroom, “Sephora Angeline!  Get down here!”  I saw his head peak around the corner with the biggest smile on his face.  I hadn’t laughed so hard in such a long time.  At 19 weeks, we knew her name would indeed be Sephora Angeline.  After learning that something was wrong with our precious Sephora, we looked up the meaning of her name.  Little did we know Sephora Angeline literally means, “Beautiful Angel.”

The amnio wasn’t nearly as awful as I thought it was going to be.  We had a very brief ultrasound to determine a good area away from the baby to insert the long but thin needle to grab some fluid.  As the needle entered through my belly and into my uterus, I was really focusing on remembering to breathe as I watched the reaction of our Little Sephora through the ultrasound on the TV screen in front of me.  She usually is very calm and curled up in a little ball with her feet directly in front of her face.  As soon as the needle went in, she freaked out! She kept stretching her legs and moving frantically while this “foreign invader” was in her space.  As soon as the needle was removed, she calmed down.  Dr. Bayliss informed us that we’d have some answers within 48 hours as to why our baby has such severe abnormalities.  Until then, we wait and enjoy our pregnancy and our baby girl’s movements.

The Level 2 Ultrasound ~ 20 Weeks 3 Days

Yesterday, we received a phone call from the perinatologist at Maternal Fetal Medicine who scheduled us to come in for our Level 2 Ultrasound today at 3:15pm.  I knew if we were scheduled for a visit with the specialist 2 days after our first ultrasound, something was seriously wrong with our beautiful baby girl.  We checked in at the front desk and were escorted back to our exam room.  We saw everything during this ultrasound that we’d seen 2 days prior.  We even got another picture of her profile, another of the bottoms of her feet and a great 3D shot of her face!  I love that she was so curled up in this shot.  She even had her left foot and right hand in this picture!

After scanning my belly for over an hour, the tech stepped out to go get the doctor who scanned my belly for another hour and a half!  He finally put the transducer down and spoke to us very assertively as he explained to us what he saw.  Her ventricles are extremely enlarged, and he doesn’t know at this point what caused it whether it be an infection, a chromosome, etc.  He also discovered she has a hole in the bone that separates her left brain from her right brain.  Currently, there is free flowing fluid passing between both sides of the brain, which could be the cause of the enlarged ventricles.  As far as her heart….she’s got a very severe heart defect.  Though her heart is audible and physically beating, he’s not convinced that her heart is making the right connections to the proper veins and arteries to ensure her body will be receiving the proper blood flow that her body will need after delivery.  Something else he noticed while looking at the top of her head, is the lack of a developed set of eyes.  Not only does she have a severe brain issue AND a severe heart defect, but now our precious baby girl hasn’t developed eyes and will be blind?!  What did we do wrong to create such a perfect baby with so many horrible abnormalities?!

What is our next course of action supposed to be?  He believes with the number of abnormalities she has, she will not have much of a chance to survive.  Therefore, he suggested we perform an amniocentisis to determine if she does in fact have a chromosomal abnormality.  If it is chromosomal, we are to assume that every cell in her body is affected and is abnormal.  If she does not have a chromosomal issue, we will be sent to Children’s Hospital of Philadelphia (CHOP) for more testing.  So…now we wait.  We came straight home after our appointment and cried together.  Thankfully, my husband Chris somehow managed to sleep.  I woke up a few times to reflect and cry and talk to some of my friends on Facebook.  Needless to say, this is not going to be a very good weekend.