January 28, 2014

Paisley's Story: Part I

   It was August 12, 2012, the day I found out I was pregnant again. Without even considering how we would tell our family and friends, I immediately took a picture of the test and sent it to everyone in one big group text message. Too thrilled to stop and think about taking another test to be certain or consider that it might mean more to tell our loved ones instead of sending them a text. (hey, at least I didn't take it to facebook  immediately. I did actually wait a 3-6 weeks before going "public")  I remember telling my husband, seemingly, over and over, "I hope it's a girl, it has to be a girl!"  The anxiety of not knowing the sex of the baby was killing me! So when my 17 week appt rolled around and my Dr. said that I had to wait until my next visit to find out.... I called and made an appt with one of those 3D Ultrasound places for that same week, November 15, 2012.  We paid $50 to find out the sex of the baby a couple weeks sooner than scheduled, simply because I thought my anxiety might put the baby in stress. Hahahaha not really, but I kept somehow finding excuses to find out sooner rather than later. I had poems picked out for either scenario, prepared to share the news in a cute way.  And as I'm sure you've already gathered, It was a Girl!!!! My heart skipped a beat, my belly fluttered, my eyes filled with tears as I sat there in awe, looking at the image on the screen. It was one of the most exciting days of my life! Rusty's first words, as soon as we got in the car and shared our own moment of happiness together, "Oh my gosh, we're having a girl and she's going to be a teenager one day!" And to this day, I can remember the look in his eyes and on his face when he said it, it was hilarious!  We then began making phone calls, me talking to my mom while he was trying to tell his mom, and him trying to talk to his grandma with me in the background, shrieking in excitement as I told my sister.  It was surely a day I'll never forget. 

     I was on cloud 9 for the next couple of weeks. Day dreaming about how to decorate the nursery, thinking of names, wondering if she'll end up with my red hair and her daddy's gorgeous green eyes. I was in love with her already.  On November  28th, I went back to my OB for my 20 week check up and standard 20 week scan. Already knowing it was a girl, I didn't make Rusty come along. The ultrasound was over an hour. I know the 20 week scan is when they check the heart and do measurements on all the bones and what not, but this was crazy. The tech finally told me that she found some soft markers for downsyndrome. To top it off, my doctor wasn't there that day and I wound up being the last patient in the office, waiting to see a doctor I'd never met. He had the nurse draw blood to test for downs. I was petrified .Howcould this be? I was only 29.  I didn't understand how everything could be so perfect and then all of a sudden, be so scary. They gave me her ultrasound pics and said they'd be in touch.  I came home that night and cried my eyes out.

      The next morning my doctor called me with the details of my appt with the specialist, December 6, 2012. Another day I won't soon forget. As Rusty and I sat through another hour long ultrasound scan, trying to be positive and enjoying the fact that we were getting to see our baby girl again, the tech's demeanor was a sharp reminder that this was not a light hearted situation. We were placed in a room and told the Dr. would be in soon.  I knew, I knew it the second we stepped in that little  room, with one table, 4 chairs and a box of  Kleenex, this was bad news. We sat in that room by ourselves, alone with our fears, questions and anxiety, for 3 hours.  When the doctor finally came in, he was followed by a geneticist. Very slowly, and cautiously, he began to tell us what was wrong with our baby.  He grabbed my hand and squeezed it as he said the  words, "Your baby has skeletal dysplasia and based on what I see right now it's lethal,  she's not likely going to live past birth and if she does, the quality of life won't be much." He drew a few images on a piece of paper and described each one as a lethal symptom of skeletal dysplasia; clover leaf skull, pierre robin syndrome, short and bent femur and humerus bones, club foot and a dumbbell shaped body. He paused as he gave it time to sink in a bit, by then I was holding on to Rusty for dear life with both hands, losing my breath, crying so hard I literally had snot pouring out of my nose. Rusty was trying so hard to be strong for me, but every time I looked at him, he had tears streaming down his face. "I believe your best option at this point is to terminate the pregnancy" he began again, "I can have you in Little Rock by Monday" (keep in mind I was 21 weeks and 3 or 4 days at that point) "Little Rock has an abortion facility that will take you until you're 21wks and 6 days and if you need more time, there are some places on the East coast that will do it even later than that." I was in complete shock.... how could this be my only option?  "Are you sure, is there any chance it could be non-lethal, or something else, are you sure it's not down syndrome?" is all I could think to ask. He told us that in his 30 years of experience, he had seen this numerous times and the outcome was always bad. He left us with the geneticist for a detailed family history and that was it.

     I was sick, I couldn't stop crying, I couldn't shake the feeling I had, like a hole in my heart, like someone very close to me had just died.  And that's exactly what happened, that man killed every bit of joy I felt for my unborn child, every dream I had for a healthy baby girl and the image I had of a picture perfect family.  It was all gone, he took it all... he robbed me of any glimpse of hope and every ounce of faith I had.  I called my OB that afternoon, I told her I needed a second opinion, I needed to hear it again, and again, if necessary, but there was no way I settling for what I just heard. I spent the weekend in tears. Basically grieving the loss of my daughter. Then it hit me, "I'm not actually going to terminate my pregnancy, this isn't my decision at all, this is up to God. If it's his will to take her when she's born, then so be it, but in the mean time, I can give her life." So, I promised her a life of love, no matter how short lived, I would see this pregnancy through to the end, loving her all the way.

     December 11, 2012, the day we got our 2nd opinion. After looking over the images and actually coming into the room while the scan was taking place and showing us the things he was looking at and why, the Doctor told us that our baby did have a form of skeletal dysplasia, however, he did not think it was lethal at that point. There were concerns about her short & bent bones and small rib cage, all soft markers for osteogenesis imperfectaII (OI) a lethal form of skeletal dysplasia, but he did not  think she had cloverleaf skull (which is almost always lethal) He reminded us that there are over 400 types of skeletal dysplasia's known to man, only time would tell what type she had. We went back every two weeks throughout the rest of my pregnancy. Each time discovering new things to worry about. We were told all sorts of scary things. There was a good chance that I wouldn't carry her full term, babies with these sorts of issues are commonly born premature. There was great concern that her rib cage wasn't going to come around her body far enough to support her lungs and heart. They said that upon her first breath, her lungs may not have room to expand. Her heart was also scaling too large for her lungs, taking up more than 60% of her chest cavity. The measurements on her long bones (femur and humerus), were still measuring short... 7-10 weeks behind growth rate. She was missing one side of a vertebrae in her lower spine and was already showing signs of scoliosis. One of the last scans revealed a skin tag on her left hand, they said it was like an extra finger but it had no bones in it. Her legs and feet were curled in on every single ultrasound, it was unclear whether or not she had clubbed feet. The doctors pushed me to do amniocentesis at every visit, but knowing that it ran a risk of miscarriage, I opted not to do it. Besides, I promised her life, and risking her life would be breaking that promise. Amniocentesis never really made sense to me anyhow. They tell you up front that there are no guarantees that they can make a diagnosis, it runs a risk of miscarriage and they have to stick a needle the length of your forearm into your belly... ummmm... no thanks!

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 7 Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
Phillipians 4: 6-7

     In the meantime, between all the appointments, we managed to get a crib, bedding set and paint the nursery lavender. Those were the only indications in our home that a baby was on the way.  My friends wanted to throw me a baby shower, but I declined it. All I could think about was how sad it would be if I came home and had to face all the baby stuff, with no baby. We were prepared for the worst. Nothing we were being told was giving us much hope. I was still going to work everyday, trying my best to keep it together while I was completely unraveling inside. I was coming home and being a mommy to my 3 year old, while trying to hold back tears every time he asked me about his baby sister. Life got real hard, real fast. I was over being pregnant because my body was in physical pain, but I wasn't ready to have her. I wished I could invent the 4th trimester to give me more time to prepare for the outcome.
     My due date was April 17, 2013 but because I had to have a C-section, my Dr. planned it for a week sooner. April 10, 2013, Paisley's birthday, the most unforgettable day of our lives. We reported to the hospital at 12pm. I was prepped and ready for surgery by 2pm. We had an entourage in the waiting room. Both of our families  were there, waiting to hear the news, ready to shower us with love and support. Paisley Grace was born at 2:37pm. I kept asking "Is she ok, is she ok?" No one answered me. Rusty saw her through the group of neonatologists that were working on her, she was blue. We never heard her cry, there was no sound, only looks from nurse to nurse.  Rusty held my hand tight and we locked eyes, blocking out the chaos around us and cried. I think there was part of both of us that thought she didn't make it.  Finally, from the other side of the curtain, my Dr. answered me, "Stacy, they can't make her cry like other babies because of the risks, the neonatologists are going to take her to the NICU and work on her." An answer, finally, but it didn't do much to ease my fears. A nurse did bring her over to us just long enough for us to kiss her cheek, and we watched as they took her away. I was in recovery when a nurse came to tell me that Paisley was doing good but it would be a while before I could see her. I was sad that I couldn't see her, kiss her sweet face and spend those sweet moments of baby bliss with her, but I was overjoyed that she was alive. They did let Rusty in the NICU to see her while I was in recovery. But it would be another day before I could see her.
Stay tuned for Part II


January 17, 2014

How it all began....

After much thought about how to put Paisley's story into words, I decided that I would first tell you a little bit about me, so that you can appreciate the just how much of a miracle she really is. 

     So I'll start by briefly telling you about some female issues that began when I was a teenager. Since about age 14, I've had female troubles. I always had heavy cycles and severe cramps. At age 15, I was diagnosed with endometriosis and had cysts on my ovaries. I had laparoscopy surgery at 16 or 17. I was told then that getting pregnant may cause problems for me in the future because of all the scarred tissue. Of course, at that time, I didn't care... I was NOT thinking about babies! I was having too much fun being a teenager and living it up with my friends.
    Imagine my surprise 8 years later, when I found out I was pregnant with my son, Carter.  I always just assumed that I would need "help" getting pregnant and I sort of threw the idea out of my head. But here I was, 24 years old, pregnant with a healthy baby, in a relationship with the man who I now call my husband, just loving life. It wasn't until 6 months after I had Carter that I noticed something was wrong. I hadn't started my period yet and I finally went to the doctor.  After checking my thyroid levels, I was diagnosed with Hashimotos, (an autoimmune thyroid disease) as well as,  wait for it.... menopause. Yes, I said menopause... at 25 years old!  I was put on thyroid medication and hormones to help ease me through the menopausal symptoms. (hot flashes and night sweats were awful for me)  I was told then that I would never be able to conceive again with out the use of fertility drugs or in vitro fertilization. Even with insurance, both options are incredibly expensive, and at the time, we were so blessed with our son, another baby wasn't on our minds.

     It wasn't until Carter was 2 years old (2011) that I started wanting another baby. Not just a baby, but a baby girl. I just knew in my heart that a baby girl would complete our family. Although I would likely never get pregnant again, Rusty (my husband) and I, had discussed adoption. We figured at least through adoption we could get a girl and not have to go through all the testing and procedures that may or may not work. However, adoption is a also an incredibly expensive option that just wasn't in our budget. So, once again, I put the idea out of my head. (more like out of my mouth....I quit talking about it, but I never stopped thinking and praying about it)

     Fast forward a year later.....Rusty and I got married in May 2012. Carter was getting so big, so fast and we loved everything about being his mommy and daddy. And we were in a happy state of newly wedded bliss! Life as we knew it, couldn't get any better. Unless, of course, we were too miraculously become pregnant with a baby girl. But miracles are only for special people, with beautiful lives that seem to good to be true... right?  I mean, that's what it seems like when you read stories about miracles. You just always think, "Oh, that would never happen to me", or "I'd never be so lucky." Well, take it from me, Miracles, do happen, and they can happen to anyone, even people with ordinary lives, like me. It was the second week of August, I wasn't feeling myself and I was late. I really didn't think much of it since I was notoriously irregular anyhow. I remember joking with my friend Valerie, on our way to a baby shower, "I either have the worst case of pms ever or I am pregnant." Followed by "hahahaha, yea right, I cant get pregnant." The next day, (August 12, 2012 to be exact ) just to clear my conscious and rule out the prego theory, I took a test.....and it was negat.....no wait, that's another blue line.....WHAT, I'm pregnant, for real???  HOW? Oh forget it, I didn't even care...I was pregnant....and soooo incredibly happy!!!
And this is where Paisley's story begins. I will post her story on a separate post,

January 12, 2014

Introduction and Summary

Hello.  First off, I'd like to thank you for visiting my blog. I have been contemplating whether or not to share my personal life with the world, but ultimately I believe the pros will out weigh the cons. I  must tell you all from the get go, that I am a positive person. I don't do drama and I don't care for negativity. I understand that by opening myself up to the world on such a platform leaves me vulnerable for any and all walks of life to share their thoughts on my page, I only ask that you please keep it friendly.

      This page will tell the story of my daughter, Paisley Grace, who has a rare form of dwarfism called Kniest Dysplasia. My husband and I first found out that something was wrong in November 2012, when I was 20 weeks pregnant. The ultrasound tech found some "soft markers" for downs and we were sent to a specialist the following week. After a very thorough 1 hour ultrasound scan and a 3 hour wait, we were told to terminate the pregnancy. They said "this baby won't live after birth", "babies with these conditions don't have any quality of life." Termination was never an option for us, but I still grieved.  Oh how I grieved... the loss of my precious baby girl, who I'd prayed and prayed for, the loss of the "picture perfect" family I'd dreamed of, the loss of a little sister for my son, the loss of the piece of me that I knew would be gone forever if I lost her. That's when I made her the promise.... the promise of life... if only for a second, a minute, an hour, a day, I promised her life. I will never forget praying to God and asking him to please let me keep her.  I knew that if she passed at birth, then it was God's will, but I wasn't going to break my promise, I promised her life, and that's exactly what I gave her! 

      I will post the full story in the near future. There's a lot of details, events and inspiring stories that took place between Nov 2012 and now. Once I get the blog caught up to date, I will continue to post current events and updates. Hope you join us and follow along on our journey.