May 14, 2014

Happy 1st Birthday, Paisley Grace

     The day came and went all too fast. Months worth of daydreaming about what décor would do it justice, what venue would be worthy enough, what outfit would be cute enough and how could I ever make it perfect enough to measure up to it's significance? Nothing I imagined seemed to be special enough for her day. Paisley's Birthday is so much more to me than just another birthday, it marks the beginning of a new way of life for me. Up to the moment I had her, everything in my life had been taken for granted. It's like something within me woke up that day and I suddenly had this acute awareness of life and what it meant to be truly grateful. There were things I had been thankful for and I knew what being grateful meant, but I never truly FELT it until I had her. Knowing that my prayers were answered and God really did let me keep's still so amazing to me. I've always been a positive person but now I appreciate things more, I have more compassion, more sympathy, more love...I'm seeing life through a new lens and it's been so refreshing.

     Anyway, back to her birthday. After weeks of thinking about the theme, and knowing that I didn't want to do the average Disney character party or standard party store décor, I settled on butterflies. I thought about the life cycle of a butterfly and how they start out as fuzzy caterpillars... not cute, not pretty at all, and with no resemblance what so ever to the beauties they become once they emerge from the chrysalis as gorgeous, colorful winged creatures. It reminded me so much of Paisley. She emerged a beautiful baby girl, nothing at all like the images from the ultrasounds and nothing at all like they told me she would look. So I began making butterflies... lots and lots of pretty patterned cardstock butterflies. I traced a stencil on the stock paper and cut each one out individually (talk about some major hand cramps!) I began to buy random butterfly stuff online and while I was out shopping. My mother in law was picking up random butterfly décor here and there and my mom (who was just as excited about Paisley's party as I was) was also in full butterfly party mode calling me daily with ideas and thoughts.... and by the time we got everything together to decorate for the big day (which was the day before her party because it actually took us a whole day to decorate) we were drowning in butterflies!!!  It was every bit of the perfection I had dreamed of.  A butterfly garden party fit for my little angel!

    Originally.the party was planned at a venue with botanic gardens and a gorgeous lake, but as the date grew closer, I realized that I didn't want to go through it. I wanted the party to be at my mom's house. The one place that we have all of our family get-togethers, where our family has already made so many memories, I couldn't imagine celebrating this day anywhere else. Nor could I imagine celebrating this day without the family and friends who came. Talk about being blessed! We were surrounded by our families, friends and a few great people who I had become friends with through sharing Paisley's story. It was such a special day. Looking back, I can honestly say it was better than anything I ever imagined, one might even say it was perfect!


Happy 1st Birthday Baby Girl


May 3, 2014

Therapy and Doctors.... Updates

Well, we've followed up with a few of Paisley's doctors in the past couple of months and have some updates. In February, Paisley's neurosurgeon released her for tummy time! (Yay! Even though she HATES it!)  He said that we don't need to worry about the spinal surgery right now. He's thinking more like a few years or possibly six to seven years down the road is when we may need to take that step... it will all depend on how the bones (or lack there of) in her neck develop as she gets bigger. Basically our only issue now is just keeping her safe, making sure her neck is stable and no accidents occur. Even a simple fall can be a severe spinal injury for her. But surgery isn't today or tomorrow, and as far as I'm concerned, that's great news! However, he said that her neck can absolutely NOT be hyper-extended during her cleft palate surgery. He referred us to a wonderful plastic surgeon, to discuss our options for her cleft repair. I must say, the man knew what he was talking about, and clearly had credentials to back his work up... it was documented all over his office walls... plaque after plaque, award after award... quite the achiever. But, somewhere between his explanation of putting Paisley through several operations to get her cleft repaired and his boastful "I have over 30 years of experience" speech (if you've followed Paisley's story, I'm sure you know why that statement doesn't go over too well with me).... I decided he was not the right doctor for us.  I talked to Paisley's ENT about it all and she said the hyper extension was no problem. She felt confident that she could perform the operation in one shot rather than several. Although, doing it her way means that Paisley may be anywhere from 18 months to 2 years old before she has the surgery. As a baby/toddler gets bigger, the palate sides drop in... meaning the gap of her cleft would be narrowed quite a bit, making the operation much easier and less invasive. Sure, she may be 2 and she may be majorly delayed in her speech, but I'm confident that a couple years afterwards, I won't be able to get her quiet! Plus she's enrolled in the Early Intervention program, so she get's weekly occupational therapy and we've just begun weekly speech therapy. Her new speech therapist is going to get us started on sign language as Paisley's first learned language. At first I was scared and a bit overwhelmed by the thought of learning something new, but now I'm looking forward to it. I think Paisley will be happy to have a way to tell me what she wants without having to cry before I figure it out. Not to mention if she does lose any of her hearing, (as hearing loss is prevalent with clefts and various forms of dwarfism) she'll already be ahead by knowing sign language. Luckily, Paisley has no trouble in the feeding department these days so her ST won't need to work with her on feeding.  She is eating 2 to 3 jars of stage 3 baby food a day, baby cookies, puffs and anything she can manage to get off our plates! Funny thing is, she's hardly gained any weight. Her nutritionist even put her on a prescription formula with higher calories because they were concerned about her low weight gain. Hoping she gains a little weight, but not too much for her small, fragile bones. Speaking of her bones, we also visited her orthopedic doctor. Not much to report there.. just basically that she has bowed legs that may require clamps on her growth plates for a while to straighten them out a bit... again, time will tell. 

It's certainly a lot to think about and keep up with and sometimes I feel like I eat, breath and sleep therapy and doctor's appointments, but I'm getting better at juggling it all. (I think) Hahaha   Since my last post, we also celebrated her 1st birthday, I'll be posting a story about that soon.

February 7, 2014

Paisley's Story: Part II

     I was out of recovery and in a hospital room, surrounded by my family. Everyone was so overjoyed by the news that Paisley made it.  I was still in a fog from the pain meds and was in and out of awareness. It was sometime later on that night when I finally snapped out of it. I asked the nurse if I could see her, I was thinking they would be bringing her to me in my hospital room. Sadly, when your baby is in the NICU, it doesn't work like that. I was told that I had to wait until the next day to see her. But Rusty and my mom did get to see her for a short while after delivery and I was able to see a picture of her. But still, I felt so empty not being able to hold her.  I couldn't wait for that night to be over with.  Anxious doesn't even begin to describe how badly I wanted to see her.

    Sun rise... the day was breaking outside the window.  Oh, how excited I was. I was going to get to hold my baby, snuggle with her,  kiss her sweet cheeks, count her fingers and toes, tell her how much I loved her, breathe her in, and spend my well deserved moments of baby bliss with her. I was in a lot of pain, as I refused to take more pain meds the night before. I wanted to be coherent, I needed to be alert and aware so I could get up as early as possible to see her. When the nurse came in to check on me for the morning rounds, I was up, had already taken a shower, was dressed, had my hair and makeup done and was ready, ready to get to that NICU and get my baby! The nurse was in complete shock. Apparently that's not the norm. I guess the magnitude of knowing that she made it and not knowing how much time I had was weighing heavily on my heart. I needed to get to her, I wanted to see her alive. I had read so many stories about babies who lived for a day or two before they passed, given the health conditions she had. I felt like my time was running out. Rusty got a wheel chair for me and pushed me to the NICU. 

   We were there with our daughter. Our sweet baby girl was breathing on her own. She had been on oxygen for the first 5 hours of her life, but started breathing on her own. I couldn't believe my eyes... she was nothing like I expected, nothing like the doctors had described. She wasn't deformed at all. There was no sixth finger, no clubbed feet and her head was not misshaped. Her body was a bit odd shaped and her legs were extremely bowed and folded inward toward her body, basically like she was sitting with her legs crossed. She was hooked up to several monitors and had a tube going up her nose and one coming out of her belly button, which was very scary at first.  Rusty grabbed a chair for me and I began to grab her so I could sit down with her. "Ma'am, I'm sorry, but you can't hold her" came a voice from behind me. "Why not? She's my baby." I said. The nurse explained that the UV line (umbilical vein) was not easy to insert and handling her could make it fall out. My feelings were so hurt, I began to cry. I just had a baby, my hormones were out of whack, I was in so much pain, my body was beginning to swell and all I could do was stand there next to her and hold her little hands. This was not at all how I pictured my first moments with her, another dream crushed. But through the heartache, I thanked God for her, the opportunity to be able to see her alive, the fact that she was here was such a blessing.

     Over the next couple of days, I was in and out of the NICU and my own room, trying to follow doctors orders about keeping my feet elevated and getting plenty of rest. Easier said than done when you can't take your baby with you to your room. I only left the NICU to eat and sleep in my room. Two days later,  I just so happened to walk in the NICU after shift change and Paisley's night nurse was charting her vitals and weight. When she picked her up out of the scale, she turned to me with a big grin and said, "do me a favor, hold her while I go grab a camera."  Oh my gosh, I couldn't believe it, she handed me my baby, for the first time, I was able to hold my sweet baby girl  in my arms. Paisley had been crying and the second she handed her to me, she stopped... we both just looked at each other, and it's like she knew I was her momma and she was calm.  It was the most amazing feeling ever. The nurse came back with a camera, took a picture and even printed the pics out for me. I got to hold Paisley for a while. In that time, it was like the world around me stopped. I wasn't aware of anyone or anything around me, it was just me and my baby, and I was floating.  That was the moment I had been dreaming of.

    On day 4, I was released from the hospital. I opted to stay in the NICU housing unit that night. I just couldn't go home with out her. But that night was awful. There was no way I was going to get any rest with all the loud slamming doors, uncomfortable bed and having to pump every two hours. My husband convinced me to come home the next day. It was so hard to leave her, I cried all the way home, but I knew she was in good hands. That night I spent some much needed snuggle time with my little man, Carter and slept better than I had in months. The anxiety of whether or not she would make it was no longer a constant worry, I was actually able to rest my mind and body. I needed it too. I woke up feeling so refreshed and ready to face a new day. And what a great day it was... Paisley was moved to "step down" ICU.. still in the NICU but in another section and most importantly, she was by a window to the hallway... Carter could finally see his baby sister!

     Over the next few days I worked with the hospital's on staff therapist to help Paisley drink from a bottle. We had been informed somewhere in the span of the first few days that she had a cleft palette. I didn't understand what that meant, I'd only ever heard of or seen cleft lips. Several doctors tried to explain why it was preventing her from drinking and I just didn't get it... I kept thinking she would eventually get the hang of it. The therapist best described it... imagine drinking out of a straw with a hole in it, you'll get a little bit through the straw but you'll never achieve full suction. Aha... an explanation that I could relate to! We tried several special nipples made specifically for cleft lips and palettes but she wasn't taking to any of them. I even tried breastfeeding and that didn't work either.  She was in the Baptist East NICU for 7 days... 7 days of seeing my baby in a large open space with no privacy, pulling a curtain around me to pump every two hours and not being able to relax. It was day 7 when the physical therapist recommended that I push the doctors to get her transferred to Lebonheur Children's Hospital. Luckily, Lebonheur had room for her and we were transferred that day. At Lebonheur she had her own room with privacy and comfortable chairs, perfect for snuggle time, bonding and naps together. I was able to be somewhere quiet with my baby girl and just relax. It wasn't home but it was the next best thing.

    The next day we met the speech therapy team at Lebonheur and began working with them every day. Paisley was finally drinking from the Pigeon nipple... a specialty nipple for clefts. But she wasn't drinking much.  Some feedings she would drink 1ml, others only 5cc's. It was very inconsistent. In the meantime, we started getting results in from all her blood work, MRI's, CT scans and X-rays.  We were seeing all sorts of different doctors. She had her therapy team, which consisted of speech, occupational and physical, a geneticists, an orthopedic, a neurologist, a neurosurgeon, an ENT, an ophthalmologist and a dentist.  There was a lot going on and it was very hard to keep up with it all. Her geneticist was telling me that she suspected Paisley had a rare form of dwarfism called Kniest Dysplasia, but the blood work came back inconclusive. It was clear that something wasn't right with her bones and shape, so I gave consent for all of Paisley's images to be sent to Cedar Sinai in CA, The National Skeletal Dysplasia Registry. They have top notch researchers and her geneticist was confident that they would be able to diagnose her. While I wanted answers, mostly I just wanted to bring my baby home. The pediatric doctors made their rounds every morning and I would ask them all the time "When can I take her home?" The answer was always the same, "When she can drink her feedings consistently with out using the pump." At the rate she was going, I felt like that could take forever.  Already, nearly a month had gone by and there was still no improvement in the amount she was drinking. The speech therapists started talking about g-tubes. At first I wasn't open to the idea of my baby having to be fed via a tube in her belly. It seemed so scary and I was still holding on to hope that she would miraculously start drinking her bottles. A nurse put it in prospective for me one day when she explained that she had seen babies in the NICU up to 5 months before for the same issues Paisley was having. She flat out told me that the longer I put off the g-tube, the longer we would be there. That was all I needed to hear to get on board the g-tube train! Not to mention, I was exhausted. I was spending 8 to 10 hours a day at the hospital, coming home and still keeping up with my mommy duties. I was on maternity leave, a time when you're supposed to relax, let your body heal, spend quality time with your newborn and enjoy the break from work. But this was far from any of that.... since the day I had her, I never got a chance to relax. There was no down time, only go time. Work would have been less stressful than the life I was living.

    I began telling the doctors that I was open to the idea of a g-tube. They were happy to know that I was no longer in denial about Paisley's progress, but in a last ditch effort to avoid the g-tube, they decided to try to have her fitted for an obturator. (a mouth piece that would fit inside her cleft palette to close the hole so she could get suction to drink from a bottle) Unfortunately, she aspirated on a piece of the molding they used to cast her mouth and the process had to be redone. And even though the second time around, it worked and the mouth piece fit, she still couldn't drink anymore than she had been. It was disappointing. I had high hopes but alas it was time to get the g-tube ball in motion. That day came on May 23rd. Aside from seeing her hooked up to a ventilator and being intubated after surgery, the sight of a foreign object sticking out of her belly was overwhelming. I felt so guilty. I knew it meant we'd go home sooner, but the reality of having to feed my baby through a tube really hit hard. I was heartbroken and scared. I was not cut out to deal with these sorts of things... or so I thought. A few days later, I was being taught how to hook up her feeds over the pump and how to bolus feed her. It was a lot to learn in a short span of time, but you'd be amazed how quickly you catch on when your baby's livelihood depends on it. Then, like no time had passed at all, Day 49 arrived, May 29, 2013..... a day that felt like a thousand Christmas mornings wrapped up in a big pretty bow, we got to bring our sweet Paisley Grace home with us.  Oh, how I cried, but for the first time, it was tears of joy! Nothing in the world can compare to the feeling that was in my heart that day. It was purely seventh heaven.

     You'd think my stresses would be over, I could be home and relax now, right? Wrong! Upon her release, we were given a book. The book had all the info pertaining to her health, care instructions for her g-tube, numbers to call for her medical supplies, names and address of her team of Dr.'s and a calendar of all her follow up appts with all 12 of her Dr's. Yes, you read that right.....12. And it began the very next day, May 30, first Dr. appt with her new pediatrician. I was barely home with her for 12 hours and had to get up and go... with all of her tube feeding supplies. It's one thing to feed a baby in a Dr.'s office, it's quite another to feed a baby through a tube in a Dr.'s office. Not that I cared what people thought, but the stares, the questions and even the disgusted looks on some people's faces... I realized then that my new reality was not going to be easy. And it wasn't. Soon after coming home, she began to get sick after every tube feeding. Her ability to feed orally had improved a bit but she was still getting sick. I was constantly cleaning up messes. I'm sure many of you can relate to the reflux and projectile vomiting issues.... no fun and extremely tiring.
      The month of June flew by. My employer had been kind enough to grant me an extra 4 weeks of leave so I could be home with Paisley. But the time had come to go back to work. I started back on July 1st. I was happy to get back to a sense of normalcy and routine. The preschool Carter attended so graciously accepted Paisley with her g-tube. I had to teach them how to feed her but they were willing to learn and happy to do it. Trying to work while managing all of Paisley's appt's soon became more than I could handle. I was lucky to get 20 hours most weeks. Then we finally had the follow up appointment with her neurosurgeon, the game changer. We were informed of Paisley's congenital cervical spinal stenosis and told that she would one day need spinal surgery. They explained that her neck needed to be handled very carefully because any sudden movement could cause permanent paralysis. WHAT? Why was I just now hearing about this? We had her home for nearly 3 months and had no clue about this. Granted, she was still a baby, so naturally we were already supporting her neck and head, but still, I was outraged that we were not informed. Immediately I knew that I couldn't risk her staying at daycare. In the nursery there are some babies who are learning to crawl and pulling up on things, all it would take is a simple fall and Paisley could have suffered serious damage. Another devastating blow, another change in my life, my routine.... and how would we  manage financially? Every detail of our lives was up in the air. But we took a leap of Faith. I felt that this was God's gift to me, he was creating the perfect storm for me to be able to stay home with my babies. And so, on Sept 20th, I put in my last shift as a Business Systems Specialist, the very thing I'd prided myself on for 8 years, my identity up to that point, the job that I shared with my second family, my coworkers, and the place where I grew from a young carefree lady into a woman with a family and values. It was hard but it was necessary and ultimately Paisley's health was my main focus.

   Fast forward 5 months... here we are, February 2014.  The results from Cedar Sinai came back and confirmed our geneticist findings, Paisley has officially been diagnosed with Kniest Dysplasia. A rare form of dwarfism caused by a mutation in the COL2A1 Gene. This form of dwarfism affects the collagen of the eyes and joints. Some children with this disorder experience severe arthritis by the age of 3, some lose a little to all vision and hearing and most have cleft palettes. There are several other symptoms of the syndrome, of which Paisley has.
You can learn more about Kniest Dysplasia at
In other updates,we don't use her g-tube anymore, although she still has it. Her nutritionist switched her to a lactose free formula back in September and she started drinking her bottles with no problem. However, she can not get rid of the tube until after her cleft palette repair surgery. We're hoping that will be in 2014 to avoid major speech delays and eating/chewing issues, but her neurosurgeon must give the ok. We may need to undergo the spinal surgery first, then do the cleft repair. Only time will tell. In the meantime, we are going to enjoy every minute of her... she's such a blessing and such a joy to be around, always has a smile and giggle to share. I can't wait to continue sharing her story and milestones. Thanks to all who have read this and prayed for my sweet angel.

I've learned a lot in the past year. I've been humbled beyond belief and blessed beyond measure. My heart has been broken and my world has been shattered, but through it, I learned the true meaning of Faith, Letting go and letting God. I've learned to grateful for the troubles I have. No matter how bad a situation seems, it could always be worse. I share all of this with you because I hope that Paisley's Story will be a blessing for someone else one day. Maybe you're that mother that was just told to terminate your pregnancy, or maybe you're that mother who has just been told that your baby has a form of skeletal dysplasia, or maybe you're the friend or family member trying desperately to find that glimmer of hope your friend or loved one needs to hear.....either way, I hope you find inspiration and hope here in my blog. God Bless!


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 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.