A New Year and New Beginnings

Peace I leave you; My own peace I now give and bequeath to you. Not as the world gives do I give to you. Do not let your hearts be troubled, neither let them be afraid.

-John 14:27

 

As many of you will probably agree, the holiday season fills you with an array of emotions and mine has been full  of  anticipation, excitement, stress, worry, waiting and filled with many, many questions. That is one of the reasons why I haven't had the chance to post another blog entry. Over the past two weeks we have been anxiously waiting our little baby girl's arrival and are still filled with lots of questions and still, lots of waiting. Every day my phone vibrates with dozens and dozens of text messages and questions from friends and family asking if there is any baby update or any news. We are so thankful for being surrounded by so much love and support but at times it can be overwhelming when we ourselves do not know what is going on or have all the answers.   

I have had two doctor's appointments this past week and we know that as of Thursday, I am 4 cm dilated, 90 effaced, with a bishop score of 7. Although my water has not broken, this past week has been filled with lots of  serious back pain, mild contractions and a few late night phone calls to my Obstetrician. I have been trying everything from warm baths, walking, spicy food, a manicure and pedicure for my pressure points, bouncing on a medicine ball, even working, and nothing seems to work.  We have finally arrived at the answer that she will arrive and make her appearance into the world only when she is good and ready.    

Although I do not have all the answers and the Doctor's do not have all the answers, I know our powerful and almighty God is the only one who knows all the answers. What I do know is that we are exactly 6 days away from our original due date of January 7th.  We have been scheduled for an induction as last resort and the absolute latest date on Wednesday, January 4th. This also happens to be my husband Tim's birthday! Out of all the days that she could arrive, who would have thought that she would be full term, still growing at 39 weeks, and possibly born on the same day as her proud Daddy? Not myself, Tim, our families or any of our Doctor's would have ever predicted this amazing outcome and possibility. She is already defying the odds and surpassing the statistics that were given to us upon her first diagnosis of Trisomy 13 in August.  Even though we are still learning about her diagnosis, she is still teaching us patience and God is still proving to us that he is in control.

As we mark the first day of the New Year, many of you will make New Year's resolutions, and some may be hard to keep. Just before he was to go to the cross, Jesus told the disciples he was leaving them a gift- peace. Although I do not have a resolution for the new year, I do hope and pray for a new year with a new beginning. I pray that God gives us peace whenever obstacles and trials face us throughout the year.  Peace to calm our fears, worries, and anxieties that Tim and I will be great parents and do all things possible with his guidance for our daughter. So I pray in 2017 that God gives you, our loved ones, friends, parents, and fellow Trisomy 13 and 18 parents,  peace throughout the upcoming new year.

Update at 36 Weeks

Peace in the Midst of the Storm   

You will keep in perfect peace those whose minds are steadfast, because they trust in you. Trust in the Lord forever, for the Lord, the Lord himself, is the Rock eternal.

 

-Isaiah 26:3-4

I woke up out of my norm on Monday as I ended up skipping not only breakfast but also my morning routine and reading my daily devotional. I had been fasting and my first appointment of the day was blood work at my Doctor's office at Southpark. I knew that starting my day off in a rush and frazzled way would probably be what my Monday would ensue as the day continued, and I was right. 

This Monday was another day like so many others have been, full of scheduled Doctor's appointments and updates. What started out with lab work continued in the afternoon with a tour of the Neonatal Intensive Care Unit (NICU) at CMC, followed by another ultrasound, a consult with another Obstetrician, then topped off with a two hour maternity class on "Taking Care of Baby." Why I had scheduled that class on the same day, I don't know. But I know our days are becoming limited and time is precious.

Tim and I like so many times before, met by the fountain and waited for our Genetic Counselor in the Lobby of Levine Children's Hospital. We were able to tour the NICU where Baby Brown will most likely be following labor. We learned the protocol for families, toured the North, South, East and West wings and were able to see the nurseries. Just seeing the precious tiny little babies in the NICU and walking the halls lined with pictures of children that have defied the odds, was so inspiring. It was amazing to see these small miracles surrounded by so much love and support and I couldn't help but think that in just a few short weeks we might be sitting right where those Moms and Dads were.

We started what was our 8th ultrasound and could not wait to see our little angel's face again. We went through our usual marker check with her heart, eyes, face, and measurements to see her growth at this point in gestation. Unfortunately, she was not being cooperative again and wouldn't let the ultrasound technician get a good look at her brain. She was already in position with her head facing very low in my pelvis, resting her head once again on my bladder.  Although there was no change in development in her globes or lenses in her eyes or the size of the VSD in her heart, we were amazed and excited to hear she was growing at a normal weight!  She was weighing in at 5 lb. 8 oz already!  I was so proud that our little bean was far outgrowing and surpassing what everyone thought she would be! She measured at 34 weeks and 4 days, just one week behind her actual gestation and was already overcoming the odds and statistics against her. She was a fighter, just like her mama and daddy :)

Earlier that day, before I met Tim for our appointments,  I opened my daily devotional since I had not had a chance to that morning in hopes that it would ease my anxiety about our upcoming appointments.  It was titled, "Peace in the Midst of the Storm," and was about Jesus and his disciples amidst a storm in the Sea of Galilee. Although the disciples got upset, Jesus never let the storm affect him or get on the inside of him. He kept his heart peaceful, loving, and calm.

Oddly enough throughout all of our appointments I felt an overwhelming sense of peace and comfort. We were introduced on Monday to Dr. Brown. I truly believe she was sent to us at the perfect time when we needed her the most. She consulted us on Baby Brown's development and what she thought about our ultrasound and our plan to schedule an induction. Meeting her was the absolute best part of our day as we had yet to completely click with a Doctor and their opinion. She was warm, knowledgeable, and explained in great detail her opinions and why she was recommending us to not only not induce but to let nature take it's course.  Of course, we completely agreed and have decided to proceed as normal and check to see if I am dilated at week 39.  If I am dilated and my body is getting ready for  baby girl's arrival, then we will go ahead and induce. However, if I am not dilated then we have decided to let me proceed to full term at week 40 before we check again.

I have felt so anxious and unsettled since our last appointment when we talked of induction and a possible C-section. But after meeting Dr. Brown and hearing our new plan I felt much more at peace.  It is funny my daily devotional was about Jesus keeping his heart loving and calm amidst the storm and he said we are to be like him. Maybe that is why I felt calm and at peace this whole time during this process, because I know he would take care of us and guide us in all of our decisions. So no matter what you are going through today or each day, don't let the storms of life get inside you. Keep your heart peaceful, loving and calm and trust me he will take care of your worries.

Things I'm Thankful For

Being Thankful   

Do not be anxious about anything, but in everything, by prayer and petition, with Thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

-Philippians 4:6-7

Thanksgiving has always been one of my favorite holidays of the year. I love being surrounded by family and friends, stuffed full of foods that we wait all year long to eat, watching football, and of course celebrating what we are thankful for. These past few weeks it has been hard to focus on the what I am thankful for as I have been surrounded by so much loss. I recently lost a close colleague, friend and brother of mine to an unexpected accident and tragedy. It has been hard not to see his smiling face every morning like I have each and everyday for the past nine years. He was one of the first people I told that I was expecting baby girl and one who I shared our diagnosis with in tears. He called himself "Uncle" to our baby girl and could not wait for her arrival.  It breaks my heart that he will not be able to come by the house and meet our precious baby girl when she is born but I know he is in a better place, watching over us and heaven has gained yet another special angel.

It is always a struggle to stay positive and focus on what we are thankful for when we are surrounded by so much darkness and loss. I have several close friends that are struggling with infertility, inability to conceive, and unfortunately miscarriage. Although it is hard to cope with our diagnosis, it is even more difficult to understand why these unfair and horrible losses are happening to such strong and faithful women.  It makes you think why us? What have we done wrong?

The truth is I do not even come close to knowing the answer to these questions. It has been impossible to find the positive in all the negatives and the light when surrounded by the darkness. There are things that we will not understand in this life and I for one, will never have all of the answers. There will be times that we will be disappointed, let down, or even hurt. But what I do know is that you cannot let the darkness intercept your mind and instill fear, doubt, or worry. There is great joy and salvation in the shadows if you know where to look.  So look to Christ Jesus.  Guard your heart and minds in Christ, and he will show you the way.

Choose to give thanks to God not just today, but in everything you do. Thanksgiving can be a time of praise to focus on all the joys in life. I am thankful for being surrounded today by family, friends, and loved ones. I am thankful that God has blessed me with a loving and patient husband and that he has given us a roof over our heads and provided food for us to enjoy today and everyday.  I am thankful for the miracle growing inside of me and for love which grows in my heart every time I feel our precious baby girl move.  I am thankful for the outpouring love and support Tim and I have received during this diagnosis and for the team of doctors God has placed in our lives.

Each day we are given is truly a blessing and for that I am thankful. So I ask, What are you thankful for today?

Jesus lifted up His eyes and said, Father, I thank you that you have heard me.

-John 11:41

Update on Baby Brown

Another Day of Doctor Appointments  

15 My frame was not hidden from you while I was being crafted in a hidden place, knit together in the depths of the earth. 16 In your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

-Psalm 139: 15-16

This afternoon I sat with all of our notes spread in front of me from our many doctor appointments and consultations. Tim and I were asked to read and review a basic birth plan before meeting with palliative care (or one of our many consults for the day).  Except our baby girl's birth plan is anything but basic.  It describes, lists, and goes into detail every possible scenario that could happen while in delivery or following delivery in the hospital.  It is official, I have been listed as a high risk pregnancy and we have been told we need to deliver at Carolinas Medical Center or where all of our many Doctors will be available and on hand. We had originally planned to deliver at CMC-Pineville and after taking a tour and going over a basic birth plan we thought we were prepared and ready to go. But we know just as well as anyone else, plans change. 

Tim and I both went into work on Thursday and worked until lunch until we met each other at CMC for our first appointment of the day.  We both knew it was going to be a long  day as we have like many days before, scheduled all of our consults in a row. It was going to be a day of three appointments in a row, meeting with a social worker, 3 Doctors, touring of the maternity floor, followed by an ultrasound and yet another consult. Although exhausting, this has become our new reality. And so it had begun. It was like a game of musical chairs except there were no chairs, just the next doctor to meet, and it wasn't a game.

We had scheduled to meet a social worker with Palliative Care in the lobby to then be taken to Levine Children's Hospital to meet and conference with the Director of Palliative care and our Neonatologist. It was there Tim and I sat in a conference room and discussed in length the birth plan and procedures for our baby girl. Tim and I had to discuss measures that may need to be taken for our baby girl to not only survive but to thrive.  We discussed an emergency C-section, fetal heart monitoring, chest compressions, feeding tubes, oxygen, intubation, and even tracheotomy and ventilators. We even discussed what we would do if she was stillborn and any keepsakes we would like to keep in her memory.  Although this is not easy and these are heart breaking things to discuss, these are occurrences that Tim and I have been asked to wrap our heads around. We have medically researched every possible scenario and case that we can think of when it comes to Trisomy 13 and our daughter.

After getting through our first difficult appointment, we waited in the NICU for a nurse who specialized in high risk births in labor and delivery.  There we said thank you and goodbye to our Palliative care team and rode the elevator to the 8th floor to tour a labor and delivery room and then a recovery room. Although we discovered I would be recovering on a different floor then the NICU (which is 7th floor, where our baby girl would be taken if needed after birth,) Tim and I felt a little more at ease. Finally we were able to understand and actually know what to expect, and that was where we were going to deliver.  At least this was one thing we could comprehend and know for sure, we knew where to go when the time comes to deliver our baby girl.

Our next stop was meeting our Genetic Counselor and heading to our ultrasound appointment at the Women's Institute.  By this time, two hours had passed since we arrived and we were anxious to learn any possible new developments and updates on our baby girl. Tim and I sat in the waiting room to wait on an experienced ultrasound technician that was going to conduct our 7th ultrasound on Baby Brown. We had become all too familiar with the process. Most new mother and fathers look for their babies cute little hands or feet, or even catch a glimpse of their face. Tim and I hold our breath and pray that each time we see her on the enlarged TV screen that her heart is still beating, her brain is still developing, and her little body is still growing. We pray that all of the prenatal vitamins, supplements, and "super foods" I have been eating are actually giving our daughter a stronger fighting chance.

At this point, at exactly 30 weeks gestation, we learned that her cerebellum in her brain was still underdeveloped. It appeared there was a key hole or space present at the base of the brain in the cerebellum which could effect her ability to breathe on her own at birth. At the ultrasound we also saw that her lenses were still foggy and her globes were underdeveloped. Or as the Doctor said, "There is nothing normal that I see when looking at her eyes." We also learned that she seemed to be sucking in her lip or sucking her thumb and it appeared there was a space inside her mouth. It was inconclusive but she may have an internal cleft palate or gap inside her mouth. From our previous fetal echocardiogram, we already knew she has a moderate to large size hole between her left and right ventricle in her heart. Although she does have this hole, her ventricles have returned to what seem to be normal size and her heart is functioning as it should at this point. So in other words, no new news.

It wasn't until we were finishing our consult with the Doctor that we heard the new news which shocked and surprised us both. Our Fetal Surgeon recommended that we discuss induction at 38 weeks at our next meeting.  Up until this point, we had never discussed induction or C-section as we had understood that they wanted me to deliver as natural as possible  so that baby could continue to grow to full term. No longer was this the case. We now would be scheduled to be induced and at a "high risk" for a possible C-section due to the fetal monitoring of her irregular heartbeat. To me, this meant I might not be able to have a quick recovery and hold our new born daughter and help Tim make the hardest decisions we will have to face in our lives and in hers. Of all the news, this was the hardest to swallow and understand as this was never part of our "plan."

Although this was not part of "our plan" we know that God's plan is not meant to be understood. Many things in life are not meant to be understood as we are simply not strong enough to bear them.  So for now all we do is wait and see and have faith that she will continue to grow, develop and defy the odds. We know she is now 4 pounds and growing on schedule at 30 weeks and 3 days. Our role now is to trust it into his keeping and so that will we do until our last and final ultrasound and Doctor's appointment on December 5th.

Showering Baby Brown

“Hope” is the thing with feathers that perches in the soul and sings the tune without words and never stops at all.

-Emily Dickinson

My sister and best friends threw me the most beautiful shower you have ever seen for our precious little angel. I could never have asked for something more perfect than my baby shower this past weekend. We had so many friends and loves ones come near and far to celebrate and shower our baby girl and we are beyond blessed to have the outpouring love and support of all of these strong women. As each person left they were asked to take home a favor with the message,

“A special candle just for you, to light when Baby makes her debut. As this candle flickers and glows, please send a wish or the prayer below, “Dear Lord, protect this precious child throughout each night and day, bless her as a Child of God, and guide her in your way.”

It is the small things, like this little message that continue to encourage me each and every day and give us hope. Without wishes and prayers we would have long ceased to have the power and energy to deal with this diagnosis and our day to day doubts. It is amazing how you start to cling to any stories of healing in hopes of peace. Tim and I continue to search for those stories but it is the small messages and moments like this weekend that help us find hope. We find hope in reading and sharing other stories of families that have gone through or are dealing with the same diagnosis, and we find hope in knowing that after all of the unknown we will still be surrounded by these strong friends and family Members that will be there to pick us back up no matter what happens.

A special thank you to all these amazing women below for your love, support and prayers and for helping shower a special baby girl and giving her mother HOPE.

Our Story

Before I formed you in the womb I knew you. Before you were born, I set you apart.

-Jeremiah 1:5

My husband Tim and I were ecstatic when we found out we were expecting. We had been married almost 3 years and trying to conceive for several months when we were blessed with a baby and our little miracle. So as all parents do, we anxiously began to share and spread the exciting news that we were expecting and due January 7, 2017.

Now I am the type of person that works well with a strategic plan, organized schedule and checklists. So of course, being the organized and strategic person that I am, I began to start planning and preparing for our new little arrival. Weeks into the pregnancy we had already printed out our baby check list, met with our financial planners, read 3 baby books and I was already mapping out my maternity leave and time I would need to take care of our bundle of joy. At the time our biggest decisions were where to take our child to day care, when should we start painting the nursery, or what maternity classes should we sign up for? Looking back now I wish those were the only big decisions my husband and I were faced to make.

When you are faced with hard times, it is funny how minuscule the day to day things become that you used to worry about. Although it is difficult to understand what each and every person goes through throughout their life, we all are faced with trying times. I think in these moments we learn how strong we are and what we are really capable of. Hard and trying times not only help you put your life into perspective but are not moments you necessarily jump to share with your friends or post on social media.

My husband Tim and I are not always open or always share what is going on in our personal lives. The hardest part of this journey for us not only has been the doubt in confidence in ourselves to make the right decisions but also how to handle the questions of those that ask about our baby girl. So that is the sole reason I started writing this blog. I thought it might be easier to process our journey, in hopes that it will help us open up and share our little story to those who have similar experiences or those who will experience what we are going through.

The Day Our Lives Changed Forever

Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own insight or understanding. In all your ways know, recognize, and acknowledge Him, and he will direct and make your paths straight. 

-Proverbs 3:5-6

Our second ultrasound for Baby Brown was at 20 weeks on August 15th and we both had decided to keep the gender reveal a surprise. We planned to have the ultrasound technician to write the gender and conceal it in an envelope for the big reveal the following weekend with our families. We were so excited to finally find out the gender, but really all we cared about was that our child was safe and growing healthy.  As we looked at the first real pictures of our baby, the technician mentioned that she saw possible fluid in baby's brain and it looked as though she could have a dual filtration system or two ureters in one of her kidneys.

   

I immediately had the strongest gut feeling that something was terribly wrong. There was something that she was not telling us as she mentioned she would be referring us to the Women's Institute of Charlotte to receive a more detailed ultrasound. Tim and I discussed it and decided to proceed with our gender reveal party as planned that following weekend. Our family was planning on coming over to find out the big reveal and of course we wanted to find out whether it was a boy or girl, even though in the back of our minds we were worried. The only thing we cared about at this point was that our baby was safe and healthy. After 20 weeks of anticipation, we found out we were having a little baby girl! We were officially becoming a family of 3 and blessed to find out we were going to have a daughter!

I became so overwhelmed and excited about planning for our baby girl's arrival. We started to design her nursery, brainstorm possible names and think of all the great memories we would share that I almost forgot we were set to schedule another ultrasound. After 2 weeks of waiting and agonizing over what could possibly be wrong, I received a call at work at 4:00 p.m. from the Women's Institute to schedule our appointment. They had just received the paperwork from the Doctor and were so gracious to fit us in the following morning at 10:00 a.m.

We never knew that on that day our lives would forever be changed. What was planned as a routine ultrasound turned into a four hour appointment with multiple ultrasounds, consult by a fetal surgeon and genetic counselor, and an unplanned amniocentesis. On August 25th, my gut feeling was confirmed and our biggest fear was realized. We sat in a room with our ultrasound technician, genetic counselor and fetal surgeon and learned that our baby girl had several development anomalies.

As we sat in this hospital consult room, nervous and waiting to hear the news, they first started by asking us what we thought was wrong. Tim and I explained that although we were not given much insight or information from our first ultrasound, we thought she had possible fluid in her brain and maybe a dual filtration system in one of her kidneys. The Doctor and Fetal Surgeon looked back at us both and said unfortunately I am sorry to tell you that there is a lot more to it than that. I remember Tim and I looking at each other and thinking this could not be happening! I can still remember the pit in my stomach, the look in his eyes and the expressions on everyone’s face in the room. It wasn’t difficult for me to tell by everyone’s sad demeanor that this news was not going to be positive, but I turned to her and said okay let's start from the top.

The Doctor began to start from head to toe of all the markers on the ultrasound that stood out to her as concerns. First, our baby girl's brain was not as developed as it should be for a 23 week old baby. Her brain detailed more of a 15-16 week old brain with partial development of nerves in her corpus collasum and cerebellum. They also were unable to detect the optic nerves in her eyes and her lenses appeared to be foggy and unclear. Then they proceeded to tell us that she had a small hole or septal defect in her little heart. Also, looking at her kidneys, she did have a dual filtration system or 2 ureters in one of her kidneys which you can live with and can be perfectly okay. As for physical features, her chin showed to be underdeveloped and there was a possible abnormality in her hands as her thumbs looked to be lower than they should on either hand.

After hearing the diagnosis, our Genetic Counselor began to speak about all of these small defects being caused by something greater. Now, Tim and I both knew when the Genetic Counselor walked in the door that something must be really wrong. She began to ask if we had ever heard of Trisomy 13 or 18. Of course we had heard of Genetic Chromosomal Anomalies such as Trisomy 21 or Down syndrome but had both never heard of Trisomy 13 or 18. They proceeded to explain that our baby girl had several development anomalies that resembled one of these trisomy conditions. So just to make sure they asked if we would be up for having an amniocentesis done sometime soon. I simply blurted out, let's do it right now! I could not wait another week to see what was going on with our baby girl! So we proceeded with the amniocentesis and left the office knowing that in 2 days we would finally know the results and understand what we were taking on.

Love Doesn't Count Chromosomes

May the God of hope fill you with all joy and peace in believing that by the power of the Holy Spirit you may abound and be overflowing with hope.

-Romans 15:13

Of course as we left the doctor, Tim and I were experiencing a whirlwind of emotions. It was too much to comprehend so we decided to both take the rest of the day off from work and go home to process what we had just heard. We had turned our phones back on and had a number of messages from our worried families wondering why they had not heard from us yet. We both decided to invite our family over to the house to talk with them face to face and tell them exactly what we learned from the doctor.

For two days we waited to hear the diagnosis and were hopeful and praying for a rare chance of good news. On Saturday, August 27th we received a call from our Genetic Counselor, Jean, that our baby girl did indeed have full Trisomy 13. The term "trisomy" refers to having the presence of 3 chromosomes instead of the usual 2 in that particular designated pair. Our baby girl had 3 full copies of her 13th chromosome known as Trisomy 13 or "Pateau syndrome." So instead of the usual 46 chromosome genetic makeup she had a total of 47 chromosomes. To us that just means that she is extra special but, based on the published data, a baby with Trisomy 13 is sometimes referred to as “incompatible with life.”

Trisomy 13 is a genetic condition which occurs in 1 in 20,000 births. A lot of times these conditions cause miscarriages and parents do not even know the reason why. The major complications of Trisomy 13 involve a predisposition to congenital malformation or birth defects, an increased mortality rate, and developmental and motor disabilities in older children. Although most children die in utero, there is also a 10% chance that infants born with Trisomy 13 will live to be age 1, with approximately 80% passing away within the first month of life. Infants born with Trisomy 13 have a recognizable pattern of physical features that often allow health professionals to make the diagnosis. Of course there are hundreds of children out there that have defied the odds and statistics and are living full lives! 

God Has a Plan

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.

2 Corinthians 4:8-9

Following our baby girl’s diagnosis we were asked the question how do you want to proceed from here? Do we want to continue with this pregnancy? I could not believe that we were being asked this or that it was an actual question. Without hesitation, both Tim and I responded absolutely! Looking back now, I understand this is a question that medically has to be asked but at the time I was completely taken off guard. How was this decision one that we were supposed to make? Tim and I both firmly believe in every way that this was not our decision to make. We believe we should let nature take its course and that our baby girl was created exactly in the form and way God saw fit. Nothing could be a greater gift from God than being blessed with a child. Tim and I both know she was created for a specific purpose and reason, that she is already a blessing, and more importantly that He has a plan for us all.

Taking it Day by Day

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Jesus Christ.

-Phillipians 4:7

I believe the struggles in life are just part of the journey that helps you realize just how strong you are when pressed on every side. Each and every day continues to be a learning experience as we continue to piece together some of the puzzle pieces of our journey. Our day to day lives continue to be filled with doubt, questions, weekly doctor’s appointments, meetings with palliative teams, cardiologists, neonatologists and any specialists that you can think of. The norm has turned into conference calls with doctors or financial advisors on the way home from work or coming home from work to research Trisomy 13 and the birth plan that is best for our baby girl.

Another reason I created this blog was not only to share a piece of our little story, but also to say thank you to all of those who have reached out to us during this difficult diagnosis and those that continue to help us through this trying time. We are so blessed with a strong support group of colleagues, doctors, friends, and family. It is your encouraging words and strength that continue to help us stay strong and know that we can get through this.

Tim and I both know that God would never give us more than He thinks we are capable of. We both know and understand that life as we know will be different. We have not only accepted that but know our lives are about to change for the better. We continue to strive and learn a little more each and every day about our daughter and about Trisomy 13. We are looking forward to nothing more than meeting our baby girl and the day we can hold her in our arms. This is what keeps us going, this is what helps us persevere, knowing that she is going to defy those odds and statistics and be our precious little miracle.