What really matters...

So sorry for being away for so long...seems like I have been busy lately! This pretty weather has also made it difficult to sit inside behind a computer. Anyway, I know I still have the story of Cooper's birthday to tell, and I promise I will but I have something else on my mind right now. Those of you who are friends with me on Facebook have seen me post about this multiple times and the truth is, I can't stop thinking about it.
One of the ladies who works at the hospital in my department had a little granddaughter who was born 3 days after Cooper. He was born on a Thursday and little Chloe arrived the following Sunday, also premature and also weighing a little over 3lbs if I remember correctly. She was transferred to the NICU after being born at another hospital because of her prematurity, as well as something that was going on with her skin and a stomach blockage. After many doctors and tests it was determined that this little girl had a rare condition called Epidermolysis Bullosa. It is a genetic condition where among other things, the individual's skin is extremely fragile and even gentle friction can cause painful blisters. Because of this fragility, children with this condition are often referred to as 'butterfly children.' This past Saturday, March 24th, less than 2 weeks before her 4 month birthday Chloe passed away from complications from this illness. I saw photos from her funeral service and graveside service and the sorrow has still not let go of this momma's heart. She looked like a beautiful little porcelain doll. What has stayed with me the most though are the photos from the graveside. Her mother's hand resting on her tiny casket before it was placed in the ground...the grief in her face was tangible. Although I could never begin to know exactly how she feels, my heart ached. I sat on my couch last night and I sobbed just thinking about it all. I looked over at my precious boy sleeping in peacefully on his Boppy pillow, nearly the exact same age as little Chloe and I thought about how stupid I was. When we received Cooper's diagnosis early in my pregnancy I thought the world was crashing down around me. My world ceased to turn for a time, its rotation coming to a screeching halt. I mourned and cried and tried to make sense of it all and I felt like I didn't know the baby I was carrying anymore. They say hindsight is 20/20 and boy is that ever true. I know now that there was no cause for mourning. My baby is here and he is healthy and that is what matters. The past few weeks I have been stressing because Cooper is quickly nearing 4 months and still wasn't tracking objects with his eyes, won't hardly work to hold his head up, and try as I might I couldn't get him to smile for anything. Seeing the pictures of that mother burying her baby was like cold water being dumped over my head; like a big flashing neon sign screaming at me to forget about milestones and Ds and to just love and cherish my baby. Last night, I picked up my sweet boy and I hugged him. I nuzzled his soft downy head and listened to his sleepy rhythmic breathing, and I thanked God for him, and I came to a greater level of awareness and gratitude for him. Please friends, don't take life for granted. Hold not just your babies, but all loved ones close. We are not promised our next breath. To the Jones family who released their baby girl into the waiting arms of heaven--Thank you so much for sharing your beautiful girl with the world. God bless, and peace be with you all<3

PS---> Just when I thought it might never happen, as I was getting ready to feed Cooper yesterday morning and he was staring at my face intently and cooing, "I goo!" this is what I saw:

Not the best picture but I was scrambling for my phone!

And one more just because. He has recently decided he is a side sleeper:

Okay, that's all for now. I pinky promise friends, the birthday post will be the next one!

3/21--A day of celebration

*We interrupt the story in progress for a special occasion. Hope you don't mind ;)*
Today 3/21/12 is World Down Syndrome Day and I can say with complete honesty I am more than proud to celebrate it. If I think back to exactly one year ago today...wow! So much has happened since then. We were gearing up for our first IVF cycle, meeting with a contractor to start a room addition, and didn't have a thought in the world about Down syndrome. This year we have a baby as a result of that cycle (!), the room is done (thank God!), and Ds has rocked our world (but not so much in a bad way). In case you hadn't figured it out, the date 3/21 is significant because Ds most commonly occurs when there are 3 of the 21st chromosome. Anyway, if you had asked me a year ago what my feelings were on the subject, it would have been a short conversation. The truth is, I hadn't thought about it...like, not at all. Never dreamed it would become apart of my daily life, never dreamed I'd be the mother of a child with special needs. Heck, at that point, I wasn't even sure if I'd ever become the mother of any child. But a year later, here he is. When I look at Cooper, I see beauty and innocence. I see soft baby cheeks, big blue eyes, and perfect little lips. When I listen to Cooper, I hear soft regular breathing, the occasional, "I goo!", and often contented sighs while he takes his bottle. When I think about Cooper, I think about how he makes me grin like an idiot with just a look, how he manages to fill my heart so full it just might burst, but mostly how he is everything I could have ever wanted and everything I never even knew I wanted. I think about how already, in a matter of months, he has begun work to make me a better person. A more patient person, a more tolerant person, and a more appreciative person. I look at the world with a new appreciation and overall, a new view. When I see people with disabilities, I no longer pity them; I want to cheer them on! When things seem to be taking just a bit too long, I find patience I didn't have before. And when things aren't going my way, I'm starting to stand back and look at the big picture a little more. Today, I celebrate my beautiful boy and all the other gorgeous kids all over the world who have made me apart of the best club I never knew I wanted to be apart of. Another momma said it best, "I never knew I wanted a child with Ds until I got one!" I hope you will all celebrate with us! Let's work together to blow the lid off of this, to banish the stigma, and crush stereotypes. I certainly can't do it alone...will you help? Will you take the knowledge you gain from 'knowing' my Cooper and pass it along to others? Let them know that there is no room for pity or intolerance. Let them know that it is not just okay...that, in fact, it is beautiful!

Cooper is counting on us!

From Cooper, B, and I --have a wonderful day everyone, and CELEBRATE!!

A routine appointment...

Our diagnosis was confirmed via final results when I was about 15 weeks pregnant. Time began to pass quickly after that point and we soon found ourselves working to prepare Cooper's room and discussing a baby shower venue. Choosing furniture, crib bedding, and paint colors happily took the place of worry about our boy's diagnosis. In between the multitude of appointments to check his heart, bowels, and growth (thankfully no significant issues were found), I tried to immerse myself in the plans and just be happy. I admit though, I was still so scared. And you know what's funny...I wasn't scared so much about the Ds. I was just scared that after this very long journey that I still wouldn't get my baby. It was almost as if my mind couldn't fathom that this was really happening. Regardless, I threw my self into the planning (I am definitely a planner) and decorating. Two of my most favorite things. 

I was pretty much on a first name basis with the staff at the paint counter at Lowes =p

Those little sample jars of paint? Yeah, they pretty much rock!

Cooper's wonderful daddy, hard at work!

Finally done!!

That room was yet another turning point. I couldn't walk past it without stopping and staring. I'd stand in there for the longest time, sunlight streaming in the windows, hands cradling my ever expanding belly, and I would finally allow myself to believe it was real. Soon there would be a little boy in our home using all of those baby things. It turned out it was sooner than I had dreamed. At the time his room was coming together I thought I had nearly three months left until I was to meet my boy but little did I know that it would be less than 8 weeks until I would see the face that would change my entire being.

Shower day!

The guest favors

Maternity Pictures

On November 30th I went to my high risk doctor in Lexington for a routine growth ultrasound. As my pregnancy had progressed I had had several of them as there are often concerns with placenta issues and sometimes growth in Ds pregnancies. It had already been decided that if I made it to 39 weeks gestation, that was it. On this day I was exactly 35 weeks. The night before my appointment I had organized my hospital bag, shaved my legs, and with great difficulty due to my belly, even painted my toes a pretty shade of bright pink. I honestly don’t know exactly what made me do these things. I told myself nothing would come of the appointment and had big plans to do some Christmas shopping afterwards, but somewhere in my subconscious I must have known otherwise.
When I got to my appointment, the ultrasound tech was a new one but very friendly. I knew the drill at this point as I had already been having non-stress tests three times weekly and usually an ultrasound to follow.

One of many non-stress tests during my pregnancy. Oh how he hated the monitor (as evidenced by his kicking at around 14 seconds and again around 1 minute)!

Something was different this time though. The technician was very quiet as she moved the transducer around on my stomach. I wasn't overly alarmed as I had already heard the reassuring swoosh of Cooper's heartbeat but I began to get impatient as the exam table grew more and more uncomfortable! I shifted my weight as my back and hips began to protest, and tried to find relief as I stared at the black/gray/white images on the screen. The silence seemed to grow more pronounced with each rhythmic tic of the clock.  Finally, she gave me an artificial smile as she said, "Excuse me just a moment, I'm going to go get Dr. Hansen." I was left alone in the dimly lit room to ponder what was going on. Only moments later the door opened again and the doctor blithely made small talk as she placed the transducer on my belly. In a matter of seconds she was done and was looking at me very seriously and very intently. "I'm seeing that the blood flow to the baby from the umbilical cord is nearly absent. I'm concerned about his lack of movement as well, so I want you to go to the hospital to be placed on the monitor," she said in a very matter of fact tone.
My eyes widened and my throat suddenly felt very dry as I asked, "Am I having a baby today?"
"You very well may be if he doesn't look any better on the monitor...I want you to go straight to the hospital as soon as you leave here."
As had became my custom with this pregnancy I somehow managed to remain calm. I did my best to wipe the ultrasound gel from my pregnant belly and then adjusted my scarf. I thanked them both and said my goodbyes and heading out into the cold November wind. It was then that the enormity of what I had been told hit me and fear set in. I didn't think about the diagnosis or any of the events of the past several months. I just wanted my baby to be okay. A hard lump clogged my throat and hot tears filled my eyes as I lumbered to my car. I called B but got no answer since he was still at work. I left a message on his voicemail telling him not to worry but that I was heading to the hospital, all the while trying my hardest not to cry. Next I called my grandmother who had offered time and again to come with me to my appointment. In a show of trademark stubborn independence (and a desire for unfettered shopping) I had came alone. As the words spilled out explaining what had occurred I began to cry. By this time I was on my way and the traffic around me was blurred by my tears. Her voice breaking with emotion, she did her best to reassure me from 80 some odd miles away, but not without a good scolding for coming by myself. I was at the University of Kentucky Chandler Medical Center within minutes. I lugged my hospital bag out of the back seat and made my way to the shuttle bus that ran from the parking garage to the entrance. I sat and nervously toyed with the zipper on my bag as I tried again to call B. I was triaged, taken to a bed, and hooked up to the monitor. My dad’s brother worked in Lexington at the time and was by my side in no time as the unofficial family phone chain went to work. I’d honestly never considered myself exceptionally close with my extended family, but he sure was a sight for sore eyes, and from then on I’ve tried to make it a point to express my love and appreciation for my wonderful aunts and uncles a bit more. Jerry has always been funny, a joker, and his jovial nature was just what I needed when I had felt so scared and alone.

After what seemed an eternity, I was able to speak to Brandon and he left work and probably broke several traffic laws to make it to the hospital.

Another ultrasound, an IV, and several doctors later it was decided that considering the growth issues, cord flow issues, and decreased movement, it would be best for all involved to go ahead and take the baby. That’s such a strange phrase, isn’t it? Anyway, just like that, a cesarian section was scheduled for 7am the next morning, Thursday December 1st. I breathed somewhat of a sigh of relief and you would think that was the end of the fear and dramatics, but if you'll recall from my very first post ever, Cooper was born at 4:51am...not 7am like it had been scheduled. We had one very scary night to go.

It's a boy, but....

I have learned so many new terms and concepts since all of this began. For instance, a year ago if you had asked me about FISH results, I'd have assumed it was something  related to a tournament down at the local lake.  In reality, FISH results (FISH is an acronym for something real fancy) are the preliminary results you receive after an amniocentesis or chorionic villus sampling (what we had). They look for just a few chromosomal abnormalities, namely Down syndrome, and some of the other trisomies. The full results come a little later. It felt like we waited an eternity. It was over the 4th of July holiday, which made the wait even longer. My test was done on a Friday and we received 'the call' on the following Wednesday. That time of uncertainty...it was agony. I kept telling myself that 1 in 8 wasn't really that bad, that it was a 7 in 8 chance that my baby didn't have any issues. I’m not sure that’s how statistics actually work, but it made me feel like I was being positive. I reminded myself of these things often and tried, very unsuccessfully, not to think about it all. You know those things in your life where you'll always remember where you were and how you felt when they happened? Well, this pregnancy was chock full of those and this day was one of them for sure. I was sitting on our couch talking to B when my phone rang. I saw the area code and my heart sped up. With a shaky hand and probably a shaky voice, I answered. It was Natasha, the genetic counselor that we had previously met on the day my test was done. She had news. Oddly, I don't recall her exact words but of course I do remember that she said the preliminary results had shown that the baby did have trisomy 21/Down syndrome. Through some miracle I remained calm and agreed as she scheduled us for an appointment with a geneticist the next week. Before we hung up, voice shaking, I asked,

"Is it true that this test is able to tell the gender?"
Natasha: "It does, would you like to know?"
Me: "Yes please."
Natasha: "It is a boy."

At the time this felt so ironic...when B and I had discussed (who am I kidding, when we had dreamed, hoped, planned, imagined, etc.!) our baby...we had always hoped for a little boy. I pictured him looking a lot like B's baby pictures with chubby cheeks and white blonde hair but maybe with my blue eyes. I thought of how his eyes would crinkle up like B's when he smiled. How he would be a momma's boy and I'd teach him to love to read like I do. So how ironic that we were getting what we'd always wanted, a little boy, but unlike the little boy of my hopes and dreams, he had Down syndrome. I hung up the phone and looked at B's expectant face. My voice cracking and sounding high pitched and unnatural even to my own ears I said, "Well, it's a boy..." with my voice failing me and trailing off. Somehow I found it again and finished, "...and he has Down syndrome." And with that, once again for the second time in as many weeks we were in our living room sobbing. The sorrow that enveloped us was deep and consuming. We cried and we agonized and we talked about how unfair it was. How unfair that we had waited so long for this baby, that we had undergone treatments, that we tried to work hard and do things right, and this had happened to us. I hope you can find it in yourself not to judge us. I wish I could explain it better. Of course looking back now, it seems borderline silly...at the time it was incredibly real though. We were acting like someone had died...and in a way, they had. The dream, the idea of the baby we thought we were having had died and we weren't sure about this baby we had just found out about. That grief...it is very real. Of course hindsight is 20/20 and I realize now that it was Cooper all along. The only thing that died was our idea of him. At the time I couldn't see that though. For days I cried at the drop of a hat. When I went to work I tried to put on a brave face but I thought about it constantly. The only way I can describe it is darkness...it engulfed me and it was sucking the life out of me. I felt physical pain. I felt disconnected with my baby, like there was a stranger in my womb. I forgot to take my prenatal vitamins when prior to the diagnosis I had never missed one. I wondered if this was a punishment of sorts, although for what I didn’t know. Crazy, irrational thoughts flitted through my mind. It never stopped. This lasted for nearly a week and then one day...an epiphany! I had to go into 'Me' mode and start reading. That's what I do, what I've always done. When things go awry I try to learn as much as I can about anything and everything. It's like a survival mechanism. And so, I sat down on the couch with my laptop and I started digging. One of the first things I found was Kelle Hampton's blog which was filled with beautiful, ethereal pictures of her daughters (one of whom has Down syndrome). I found the 'Down syndrome' and 'Down syndrome pregnancy' boards on Babycenter.com and they were filled with stories and discussion from moms of kids with Ds as well as many adorable pictures. Seeing all of those gorgeous kids did something. It began to chip away at the darkness that had surrounded me. The smiling faces were like a salve on my wounded spirit. Prior to this, my notions about Ds were few and it certainly wasn't a club I wanted to be apart of. These brave mommas with their beautiful kids were doing all they could to change those types of opinions. It was the beginning of a turning point.

As I said previously, there are many things I will never forget. Another is the reaction of my closest friend. Her knowledge of Ds was pretty limited as well, but she accepted Cooper from day one. When I explained to her that Cooper would probably do some things later such as hold up his head, sit up, and walk, she said, "That's okay, so our baby will be a baby longer?" On our first outing after the diagnosis, she was the same enthusiastic person she had been before. No pity, no 'sorry'...in fact, she was the opposite entirely. She said, "We have to go shopping! I'm dying to buy some cute clothes for this baby!" That was one more step toward me being okay with everything. As we 'oohed and ahhhed' over adorable baby boy clothes I began to get excited about my pregnancy again.

The first outfits bought for Cooper courtesy of my BFF

 Indeed she does!

I'm pretty sure she had no idea that her 'non-reaction' to our news was exactly what I needed. I am and always will be forever grateful for that. So, the fog lifted and I started buying things; we window shopped for furniture for his room, and we picked out a middle name for our Cooper. We resolved to be positive from there on out. We shared the news with more friends and family saying, "We have news about the baby. First of all, it's a boy and his name is Cooper! He has Down syndrome, but we are fine and we are very excited to meet him." I've found in life that how people react to things you tell them is often colored by your tone and outlook on the subject. With this in mind, we set out to show people that it really was okay, we weren't sad anymore. And just like a storm that rolled in, tossed us about and roughed us up and then moved out of town...the darkness was gone and the sunshine that followed was beautiful. I basked in it. About 3 weeks later I felt the first flutters of movement in my tummy and I didn't look back. That's not to say that we weren't still scared. There were the prospects of heart problems, bowel problems, and a myriad of other health concerns associated with Ds but the fact that I was focused on: We were having a baby!!

This is what we were so afraid of?!?

Oooh, another ultrasound!!

Sorry, I've been slacking a bit with the whole blogging thing. I'm going to try to do better though. I feel compelled to tell our story. To tell Cooper's story. I remember how I felt all those months ago and if I can help one person going through the same thing, or help one person to be enlightened about t21 as a whole...it's worth it.

Anyway, on with the story! So, we finally got our big fat positive on a pregnancy test and even saw our little bean on ultrasound. Soon I was released from our fertility specialist and had my first appointment with a regular ol' obstetrician. We got another ultrasound since it was our first appointment. I couldn't believe how much the baby had grown! He looked like a real baby!

Cooper at 10 weeks 6 days pregnant (first OB appt.)

We were over the moon watching him move and seeing that gorgeous little life! Oh and the swoosh of the heartbeat- bliss! 

After our ultrasound, the doctor talked to us about everything and gave us our due date of January 4, 2012. He also mentioned that there was an area behind baby's neck called the Nuchal Fold that looked to be a bit increased which could signal a condition like Down syndrome. He said it was probably nothing but recommended that we undergo First Trimester Screening just to double check. It was a bit ironic as I’d recently attended a maternity fair at our local hospital and sat in on a class detailing that very screening. First Trimester Screening is an ultrasound to check that space behind the neck among other things and some simple blood work. Please let me say very loudly:

THIS TEST IS SIMPLY A SCREEN. IT CANNOT TELL YOU WHETHER OR NOT YOUR BABY HAS DOWN SYNDROME. IF YOUR SCREEN IS 'POSITIVE', IT SIMPLY MEANS YOU ARE AT INCREASED RISK FOR A CHROMOSOMAL ISSUE SUCH AS DOWN SYNDROME. IN ORDER TO FIND OUT WITH CERTAINTY IF YOUR BABY HAS DOWN SYNDROME (OR OTHER CHROMOSOMAL ABNORMALITY) YOU MUST HAVE A DIAGNOSTIC TEST (SUCH AS AN AMNIOCENTESIS OR CHORIONIC VILLUS SAMPLING). 

Okay, off my soapbox on that one. There is a ton of confusion surrounding that. No one should ever think that their child without a doubt has Down syndrome based on this screening. 

Back to the story-- all I heard out of that recommendation was another chance to see baby on ultrasound! I didn't even hesitate. My best friend went with me and I was super excited for her to see the baby. When we got to the exam room the doctor's tone (a specialist from Lexington) was very ominous. She kept asking me if I understood what this meant and even went so far to say that if things came back not so good that I'd have some decisions to make. I was shaken to say the least but still somewhat naively excited about seeing the baby. It turns out, the nuchal fold was increased. The average is around 1.7mm and my baby's was 2.5mm. I was still not overly concerned as I had read that 3mm or more is what is considered 'worrisome.' I next had the bloodwork. 

Fastforward one week and I had still not received the results of my screening. I called the doctor's office expecting reassurance that everything was fine. The OB coordinator at the office still didn't have my results but promised to contact the lab and call me right back. 

I'll never forget that day and that feeling. It was June and gorgeous outside. We had decided to build on to our tiny starter house to make room for baby, and construction was in full swing with workers hammering away outside. B had went out to speak with the workers and I was in the living room. My phone rang and it was the doctor's office. 

OB coordinator: Tara, I have your results. The screening came back positive.

Me: What does that mean?

OB coordinator: Well, it means you are at increased risk for a chromosomal disorder. The actual breakdown was a 1 in 8 chance for Down syndrome and 1 in 29 for Trisomy 18. Please don't freak out though. I know one mom who has had a positive screening with all 3 of her children and they are all fine! Dr. Frank wants you to come in this afternoon if possible to talk about all of this. 

Me: Okay...we will be there. 

I hung up the phone and felt as though the room was spinning around me. I looked helplessly out the window at the streaming sunshine and vivid green of the trees in our yard. I willed B to come back in the house. I felt like my heart was in my throat. After what seemed like an eternity he came through the front door. The minute he saw my face he stopped. I tried to get the words out but was having difficulty. I finally told him what the doctor's office had said between sobs. We both cried...stood there in our living room and held each other and just cried. There might be something wrong with this baby that we had waited so long for...it was almost more than either of us could bear. When standing outside of a situation, it is easy to say what you'd do, how you'd feel...but when faced with it, it is suddenly much harder. We met with my doctor that afternoon and decided that we had to know for sure. Not because we were going to take any particular action...just so that we would be prepared for whatever we were facing. One choice was a Chorionic Villus Sampling which is where they go in guided by ultrasound either through the belly with a needle or vaginally and take a sample of the placenta. They then look at the DNA makeup of the cells to see if there are any abnormalities. The other option was to wait until I was further along and have an amniocentesis where they stick a needle through the belly and get a sample of the fluid around the baby and look at the DNA that way. We wanted to find out sooner rather than later (we were so scared) and chose a CVS. The procedure was uncomfortable...a little worse than a PAP smear and then we waited for our results. 

Another disclaimer please: the choice the undergo diagnostic testing is a very personal one. There is a small chance of miscarriage (generally 1 in 200 or so). Many people with a positive screening feel like this is too much of a risk and choose to wait it out and just find out at birth. It was our choice to go ahead with the testing and I will talk more later about why this was the correct choice for us but everyone has to come to this decision on their own. 

Okay, baby is awake so I must go for now. The next post will detail our actual diagnosis and the period of time immediately after. Bear with me, please. It is a long story but I feel it is worth telling.