Thought I would share the story of that incredible day, that Black Friday, six years ago...
My parents were in town in anticipation of our little lady's arrival, so of course my mom and I had to at least make an attempt at shopping on Black Friday because I hadn't gone into labor yet, so why not get in as much shopping as possible before the contractions start!? I actually had two due dates with Lyla, November 27th and November 29th. It was November 28th and I hadn't felt a single contraction yet. Our plan was to shop all morning, then I would run to my OB appointment at 10 while mom was at Gander Mountain, and I would come back to pick her up after my appointment was over. Little did she know, she'd be at Gander Mountain for a very long time! We shopped from 6 am until I had to go to the clinic. My doctor did her usual check and asked how I was feeling. I said fine, but no contractions yet. A few days earlier I had called in because I was a little concerned that I hadn't felt the baby moving as much. They had me drink a cold glass of water, lay on my side and do a kick count. She moved often enough to pass, but she was never much of a kicker anyway. On hindsight, this makes perfect sense because she always had low muscle tone due to the Trisomy 18, but we didn't know she had anything wrong with her at this point. So at my appointment, my doctor said, "Well, let's just hook you up to the monitor for a little while just to make sure that baby is moving and doing everything she should...just in case." I believe that this decision by my OB doctor may have saved Lyla's life. We hooked up to the monitor and she did not pass...she was not moving as much as she should. The next step was an ultrasound during which they observe different things and give the baby a score between 0 and 9. I think Lyla scored a three. They found that my placenta was not profusing well, among other things. That was when the specialist said, "You're going to have a baby today! She'll be better off outside your womb." Looking back we now realize that even her placenta and umbilical cord were affected by the Trisomy 18, making it less conducive with life. They sent us up to labor & delivery and put me on the monitor again. They found that I was having some pretty substantial contractions (though I didn't know it) and that she was not tolerating them well at all. That is when it was decided we should do an emergency c-section. I was so excited to meet her and scared at the same time. I didn't know if there was something wrong with her or not.
At her 20 week ultrasound everything was normal except two things...she was measuring a bit small, and she had something called a choroid plexus cyst on her brain. A choroid plexus cyst occurs in about 1 in 100 babies in the womb. My doctor told us that 99% of the time they resolve on their own before the baby is born and there are no further problems. She also told us that the other 1% of the time, it can be an indication of something called Trisomy 18, a rare chromosomal abnormality. But in all reality, she didn't think we had to worry, because this was so rare. Of course, as the parents, we were a little worried, but the practicality of the statistics calmed our fears. The chance was so slim that anything was wrong, and everything else on her ultrasound looked perfectly fine. So we only did a blood test to check for abnormalities, which didn't show anything abnormal. We weren't worried about it!
Well, now it was time for her to be born. The c-section went well. I heard her sweet little feeble cry as the doctor pulled her out. She was born on November 28th at 3:16 pm. She was 5 lbs 0 oz and was 18 inches long. Very small for a full-term baby! She wasn't breathing well so she was rushed to the NICU and hooked up to all kinds of things. They found that her platelet count was dangerously low so she had several platelet infusions. I never even got to see or touch her for 7 hours after she was born. Nobody seemed to know why she was having so many problems. In the back of my mind I knew there was a possibility that she had Trisomy 18, but I think that I kind of refused to acknowledge it. They did lots of bloodwork, and the pediatric specialties doctor and geneticist even did an exam on her and did not think that she had Trisomy 18. It took three days for the Trisomy 18 test results to come back. I will never forget the moment when Joel and I were sitting in our hospital guest room, and two doctors and a nurse came in and told us they had a diagnosis for our precious Lyla Jane...she has full Trisomy 18, a chromosomal abnormality not usually compatible with life. Only 50% of Trisomy 18 babies survive to birth, and of those that do survive, only 10% live to be one year old. They tried to break this news as gently and as positively as possible, and told us to cherish every moment we had with her. I was absolutely crushed. This was the most traumatic moment of my entire life. To this day I cannot think about that moment without crying. Our precious, beautiful baby girl was not going to be with us for much longer. But God had other plans...
She was in the NICU for 12 days, until she was stable enough for us to take her home.
This was the first time I met her.
Fast forward to SIX YEARS later, and here's our walking, talking, laughing, dancing, singing, funny, sometimes naughty, always fun, AMAZING, kindergarten-going, Trisomy 18 rule-breaking Lyla Jane. She's a big sister, daughter, granddaughter, niece, cousin, friend and an inspiration. God has been gracious to us, and has worked miracles in her life.
The birthday girl!
We are so blessed to have had so many praying for Lyla from day one, who continue to pray for her. We have always always had so much love and support from our family and friends. That has been invaluable throughout this amazing journey. Thank you! We love you!
HAPPY 6TH BIRTHDAY LYLA JANE!
