Dear Lily - Your Birth Story

November 07, 2011

Dear Lily -

I have been meaning to write this for a couple of weeks now, but when you have a little baby, time seems to get away from you.

Lily, this is the story of... you!  How you came to join our family.  Sometimes things are easy, but having you was not easy.  When mommy was only 6 weeks pregnant with you, she had an ultrasound.  I have never been so happy to see your little heart beating away.  The doctor thought your heart rate was a little slow though, so at 7 weeks we had another ultrasound, and it was beating away at 150 bpm... just perfect, were the words the ultrasound tech used.

Everything after that was uneventful until that horrible day in May when we found out something was wrong with you.  It was supposed to be a special day that we found out whether you were a boy or a girl, but it quickly turned into one of the worst days of my life.  I'll never forget turning to your daddy in the ultrasound room and saying "This can't be good!" when the tech left, and said she needed to go get the doctor.  And at that point in time, I was right, it wasn't good.  Dr. N explained to us that you had fluid in your heart and lungs, and a very large sac on the back of your head called a cystic hygroma.   At that point, I had never even heard of a cystic hygroma before that day.  He made an appointment for us with the specialist, and sent us away with an apology.  I remember sitting outside his office on a bench in the entryway sobbing.  It was supposed to be a happy day.  We were supposed to be finding out your gender, and hearing that you were "just perfect".  That didn't happen that day...  I remember, Lily, that is was raining.  Raining really, really hard!  I remember walking to my car, and not caring that I was getting soaked, because I felt soaked inside too. 

You see, my pregnancy with your brother was difficult.  I was really overweight, and it was uncomfortable and ended in him being born 5 weeks early in an emergency C-section, and needing to spend 27 days in the hospital.  You, Lily, were supposed to be my redemption pregnancy.  Everything was supposed to go perfectly.  You were supposed to be a big baby, and healthy, and not spend more than a couple of days in the hospital, and now we were being told something was wrong with you.

I remember the first time later that day that we entered Dr. P's office for our level 2 ultrasound.  The nurse explained that they would be very honest with us and tell us everything.  She explained that it might sometimes be hard to hear things, and that we would talk to a counselor afterwards.  I felt like I was walking into a death chamber that day, on my way to be executed.  I know that sounds dark, but I want you to know the truth someday when you are old enough to read this. 

Things after that were a blur, but I remember being told that the cystic hygroma on the back of your head/neck was very complicated and very large... as big as your head at that point.  I remember also that they were pretty concerned about your heart, as it had fluid around it.  After the scan, meeting with the counselor we were told it was probably a good chance that you had a chromosomal defect, but there were also chances of a rare genetic condition, or even that I had an infection.  We were not given the scenario where there was a chance that you were fine.  Something was wrong.  Our doctor strongly believed that you may have something called Turner syndrome, which is where part or all of one of your "X" chromosomes is missing.  We were offered an amniocentesis to have a definitive answer.  Your daddy and I decided we didn't want that, as in the end it wouldn't help you, it would only be for us... we did ask, just to make sure.  We were given handouts about in utero death, and we were walked through what would happen if/when  you didn't make it.  The statistics were grim.  We were told there was maybe a 2-7% chance you would survive.  We were told that everyone was really sorry, and we were sent home to grieve you, with a repeat appointment in 3 weeks.

Those next 3 weeks were complete hell for me!  I cried a lot, and walked around in a fog.  There were times I could pretend this wasn't happening... like at work, where I kept busy and could forget for a little while.  But most of the time I wasn't at work I was crying, and trying to sleep.  I wrote this post, a couple of days after our ultrasound, and I reached out to anyone and everyone that would possibly pray for you.  3 weeks finally passed, and we went back to Dr. P where we heard the news that surprisingly things were not any worse.  It was a small victory in a series of what was to be many small victories! 

Sometime after that the cystic hygroma on the back of your head/neck shrunk, but revealed another mass underneath that the doctors thought might possibly be part of your brain growing outside of your head.  We were told there was no way that they would know until you had an MRI after you were born.

Along the way.  I gave myself goals... get to 24 weeks, then 28 weeks.  Get to 30 weeks, get to 34 weeks.... get to 38-39 weeks were Dr. P said that she hoped we'd be doing a C-section.  I always wanted to talk about that, but she just said "Let's see if we get there."  As the weeks went on, I started meeting those goals, and the reality of your birth set in.

On September 15th I had an amnio to see if your lungs were ready.  You were a stinker and moved just as Dr. P inserted the needle, and you got poked in the butt.  Luckily, your lungs were ready, and we headed to the hospital very early the morning of September 16, 2011, so you could be born.  As 8:00 am rolled around I walked to the operating room with a team of amazing doctors, and everyone declared they were there for a C-section.  I declared I was there for a tummy tuck, but no such luck.  After about 20 minutes or so in the OR you were born, you cried pretty quickly.  I just remember that I kept asking how big you were, and I was told they hadn't weighed you yet.  Suddenly someone called out 5 lbs 9 oz!  I was shocked.  We were told you probably wouldn't be over 5.  As they whisked you away to the NICU, I got to see you, for a short minute, and you were amazing and perfect

Mommy and Lily meeting for the first time
It was the afternoon of the 17th of September when a somber doctor entered my hospital room.  She asked if I knew that you had a chromosomal screening.  I said that I did.  She asked if I was ready to talk about the results.  My heart skipped a beat for a moment, as I knew something must have showed up given the look on her face.  She even asked if your daddy was around - which he was not at the time.  I told her it was OK, we could still talk about it.  She then told me that you had Turner Syndrome.  She expected me to breakdown and cry.  I knew she did.  But honestly I was just so happy to have an answer, and honestly Lily, I could have cared less what you had at that point.  I was just so happy that you, the baby that was given barely a chance to live, was alive! 

Lily... you amazed us all. You spent 36 short hours in the NICU, which was the shortest we could have ever hoped for. You passed your cardiology tests, and an MRI showed that the growth on the back of your head was just skin and was not connected to your brain. Your kidneys were cleared as well. 

4 days after your birth, you and I went home together!  I didn't have to leave you at the hospital.  I was amazed and so blessed.
When we brought you home we were a bit shaken.  I have to admit that we were not prepared to bring a baby into our home.  We had been told you would never come home with us, so we quickly had to assemble our pack and play so you had somewhere to sleep.

Adding you into our family was an amazing journey... it was painful and tested our faith, but getting you at the end is the biggest blessing we could ever imagine.

Lily, someday you will find out you have Turner Syndrome.  You are missing an "X", but please know that, that does not limit who you are or what you can do in life.  You will probably be short, but that's OK, we'll get you a step stool and and Aunt Cathy will buy you some killer high heels.  And Lily, you will probably never be able to have a child of your own, but you know what?  You could certainly conceive and carry a baby through in-vitro fertilization or even adopt. 

Lily, know that hundreds if not thousands of people prayed for you before you were even born.  Understand and be amazed at your life and the power and awesomeness of the God that created you.  The God that was so wise to bless us with you and you with us.  He knew we needed each other.  Lily, now that my pregnancy is over and you are here, I would never ever change for a moment that path that brought us to you.  It has profoundly changed me.

Lily, shoot for the stars with whatever you do in life! You are a miracle.  Most of all, never, ever doubt that you were fearfully and wonderfully made.

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