After months of trying to give Anthony a little brother, it finally happened. I was expecting another child! Things were going to change and I was ready for this next chapter of life . . . child #2. I was ready for the change for it would bring more smiles and laughter, a friendship for Anthony, a second car seat, double the toys, extra wet bath times, basically it would be parenthood on a different level. Never in my wildest dreams would I have been able to anticipate the level of parenthood soon to be experiences. Things were definitely going to change.
The first ultrasound
"you're going to need genetic counseling"
I type that statement with such abruptness because that's exactly how I remember hearing those words. I had barely made myself comfortable on the table, the wet goo on my belly, barely a movement from the ultrasound wand, not even a chance to hear the heartbeat when the ultrasound tech spoke those words that started a whirlwind of emotions . . . confusion, anger, worry, and ultimately fear.
Waiting in a separate room for the doctor to explain what was going on, I all the while just knew that I didn't need to hear it from her. Things had already been set into motion and I knew what any other mother would know, something was wrong with the baby. I just knew by the way the ultrasound tech looked and eventually through the sadness in the doctor's eyes, things definitely weren't well or routine. Something was most definitely wrong and emptiness filled the room, my head and my heart.
I left feeling so very helpless and confused. Complete silence on my way back to work except for the tear filled phone calls to parents. What started out as a day that was meant to be one of the most exciting days in a pregnancy . . . hearing the heart beat, seeing the little peanut size fetus, walking out of the office with baby's first picture, ended . . . well, it just ended.
Early January 2008
A person can only walk around in a fog for so long. Since that fateful ultrasound, I had been to a fetal specialist for a more thorough ultrasound.
"Your baby may have a chromosomal abnormality such as Turner's syndrome or Down syndrome."
"You can choose to have an amniocentesis to determine if an abnormality exists."
"It's possible your baby may have a chromosomal abnormality and a heart defect."
Like I said, a person can only walk around in a fog for so long. Going through daily routines, conversations, normal motions of life knowing the only thing you're truly capable of doing with ease is breathing. Everything else was done with such effort. So I decided to go to church in an attempt to process everything we were being told. I hadn't been to church in a while and went by myself. I just wanted to be alone to process what was going on and try and gain a little perspective on everything that was happening. Church was packed. So many people standing in the back of the church. But instead of just slinking behind someone or hiding in a corner, I saw one seat available and went to sit down. Chills came over me afterward as I thought about how so many people were looking for a seat and this one was just waiting for me. Chills because I spent the entire mass sitting directly behind the most adorable little girl who had Down syndrome. She stared at me, smiling.
Surprises are good if they come in colorful packages or consist of being blindfolded while walking into a fun party. A surprise like a tornado however isn't so much fun. So our thought process on surprises is the reason for the decision to move forward with the amnio. I just had to know. No more guessing, no more analyzing, no more imaginations wandering. Just find out what is in store so research and preparations can happen and most importantly, accept the fate once and for all. Termination was never an option. I just needed to know. And after being convinced by the doctor that there really was very little risk to the baby by doing this procedure, I decided to go for it. Watching a needle go into your pregnant belly is very overwhelming, but not as overwhelming as sitting still for the next 24 hours so as to not risk the pregnancy. Then there was waiting for the results . . . pure torture.
We were told it would be about 2 weeks for the results. Only six days had past since the amnio when I received the call at work. I'll never forget it.
"Julie, this is Jessica from Dr. Cantor's office. We have your results from your amnio and Dr. Cantor would like to schedule a time to see you in her office tomorrow."
Only 6 days and a call to talk in person! It doesn't take a genius to figure this one out, but the details were still a mystery and one I wasn't about to wait a whole day to unravel. So I told her I was on my way and would wait as long as it took until the doctor was available to see me.
I'll never forget the drive to the office. It was the rainiest, gloomiest, darkest day and I'm not talking metaphorically. It truly was a bad weather day which only made the emotions that much more intense. I just wanted to get there and I was concentrating very hard to drive in the rain. Racing to my fate. Racing to find out what most don't know until delivery.
Sitting in the waiting room, Jessica finally came out to get me. I've been seeing Dr. Cantor for about 15 years, she delivered my nephews and Anthony, but never have I been in her office. I wasn't feeling so blessed to be visiting this private spot at the moment.
She just blurted it out. I would like to say it was in slow motion or the room spinned or something crazy like you see in the movies, but nothing.
"You are having a boy and he has Down syndrome"
My first reaction was "boy?" We didn't want to know the gender, but then the last part of that statement finally sank in and for a second I felt all the usual emotions . . . fear, confusion, sadness, worry. Just wanting her to go away for a minute so I could cry and not have her say the words. Don't say the words . . . "I'm sorry" . . . just don't say it! I don't want to be pitied and I don't want someone to have to apologize for the baby in my belly. So I held back the tears as best I could while she cried. She told me various details about Down syndrome, support groups, things to expect, answered a few of my questions which were so generic looking back, but I felt I should say something. React in some way, any possible reaction when all I really wanted to do was just run out of there and just let myself accept and process what was happening.
On the way home, I called my husband at the time who was out of town unfortunatly for all of this ordeal. I told him the news. We both were a little numb. We were upset, but looking back we collected ourselves pretty quickly. Partly due to the fact that we had almost 2 months to digest this possibility and also because we knew Anthony didn't need to see us upset. Anthony . . . how was this going to effect him? We wanted so badly for him to have a friend, a buddy, a sibling that he could share all the things life has to offer. Sure they would still share their lives together, but would it be the same? A brother. Anthony was going to have a brother with special needs. As quickly as these thoughts invaded my head, I wiped them away. This would be the start of me stuffing my feelings deep down inside. There are bad feelings that you face and feel better doing so and then there are a completely different set of bad feelings that if faced, might send you down a path comparable to a raft speeding down an out of control river toward a water fall. I didn't want to fall. I had to be strong. I couldn't afford to sink into the emotional reality of the situation. I couldn't lose myself.
Once home, we called our parents as well as the rest of the family. Delivering this news was almost therapeutic as if saying it over and over again was somehow creating acceptance and making it ok. I wasn't convinced of this statement, but I knew if I allowed myself to succumb to the fear and sadness that inevitably was in my heart, that it might not be ok and we couldn't afford that risk. Not now. Maybe a little later. So I remained strong for the phone calls, for my family, for what I felt in my brain. But eventually that evening, I let myself give in to what my heart felt and I cried. One of the very few times along this journey that I allowed myself to give in to the feelings. I remember sitting on the floor of my closet, just crying for the loss of the baby we had envisioned. The baby that would be just like Anthony and would run and play just like Anthony. The baby that would have a bright future. I cried thinking about the delays this baby would have and the trying times we were beginning to face. How would we cope? How would the baby cope? Of course, after doing my research and soaking in this amazing baby, I realize that as warranted as my fears were, they were so very unrealistic. But I'm getting ahead of myself. That comes later . . . . So, I cried and cried and cried. Then cried even harder when I thought about that scary unknown statement the doctor said . . . "It could be Down syndrome and a heart defect". I couldn't bear that thought so I tried to accept what we knew and figured I would just deal with whatever else came our way when it happened. I couldn't handle the thoughts. It was literally going to kill me. So I went to bed thinking about what was happening right now and nothing more. But I did pray. I prayed hard every single night for the baby to at least be healthy. "Please Lord, don't let this baby have any major medical issues". I remember just thinking that if I prayed hard enough the baby would be perfectly healthy and the Down syndrome, we would just deal with. But medical issues. That just wasn't something I could handle. At least that's what I thought . . .
First visit with the cardiologist
I remember reading that less than half of the children born with Down syndrome will suffer from congential heart defects. Of those, about 80% have minor defects that are easily corrected or correct on their own. So that leaves only 20% of that half population that suffer from something major. These statistics made it easier to go into this appointment. Maybe we'll fall in the category that has no defects, but if we didn't at least the odds were good that it would be something minor. "We'll examine the baby after birth and go from there" was what I was expecting to hear. Positive attitude right?
The ultrasound begins and the doctor, Dr. James Boone, is quiet. It's taking forever. Another piece of this elaborate puzzle was getting ready to be revealed and my nerves were through the roof. I had to be patient. After all, this wasn't the typical ultrasound. No, "oh here's his little foot" or "there's the head". This was a close examination of the heart only. A heart that is only 16 weeks along and is being examined through the wall of my belly and then through the baby's body. I have the utmost respect for a doctor so gifted with an ability to diagnose a fetus at this young age. To not only see, but understand the blood flow in a heart so miniscule. One of the many talented miracle makers that we would meet along our journey. But that's to come later.
With the ultrasound complete, we followed the doctor to his office. He pulls out a diagram of a normal heart, some white out, a red pen, and a blue pen. He begins whiting out, and whiting out, and whiting out. I swear a part of me was willing him to stop . . . "ok, that's enough!". Then he draws parts of the heart back together again, but much different than the normal heart picture. With the blue and red pen, he begins to make the blood flow; red blood and blue blood. This too is very different. After the agonizing process of watching the doctor draw this unidentifiable, totally foreign, bizarre looking heart that belonged to our baby, we sat on edge as the explanation was given. First of how a normal heart functions then he moves on to explain the congenital heart defects that exists in our unborn baby. The two major arteries of the heart were switched, flip flopped, completely transposed. The drawing looked like part of a pretzel. Then there were two large holes in each chamber. One so large that the doctor used white out to make just one big area instead of two. Then the aorta was severely narrowed and was coming from the opposite ventricle from which it was suppose to arise.
I swear I had no idea how this baby was even alive. "Keep breathing Julie. Just keep breathing". Then the questions started flowing . . . Can this be fixed? Can he survive? What kind of life will he have? How many surgeries is he going to need? What will the quality of life be for him? Some questions were answered, but others were too early to answer. Unfortunately the unanswered questions were the ones we so needed, but they could not be given because it was just too early. So there we were. Left to ponder the "what if's?" again. I felt like this nightmare was never going to end. Then he added to our worries. When asked what the chances are that he's mistaken, his response was that if anything he wasn't mistaken but there may be more that we'll catch as the baby grows.
So let's just take a breath shall we? Take a minute to look at some pictures. Do you see the genuine smiles, bright eyes, and incredibly happy children? Go ahead and take a break and look through these great photographs. Just soak in these pictures from top to bottom . . . . . . . Anthony and Brady are so in love with each other. They have the bond we were craving. The bond we thought we would miss out on because of Brady's diagnosis. We were so wrong for their bond is stronger. And look at Brady's smile. He has been through so much yet that smile . . . he only knows the joy.
I thought a little break from the depression and drama would do some good. Unfortunately if I'm going to finish this story, we have to go back. Back two years ago to that first heart diagnosis. If only we knew what we know today, things may have been a little easier to digest. But then again, I've learned that ignorance truly is bliss. After all, this was just the beginning and if there was a crystal ball to see what was a head, I don't think I would have had the strength. What was yet to come was something no one could prepare for.
Emotional Roller Coaster
The baby in my belly had turned into a specimen for doctor's to analyze. No longer did we feel like our son was this "bundle of joy", but rather a patient to be examined. I was very resentful toward other women who were pregnant. "I hope you realize and appreciate what you have", I remember thinking. Total resentment, anger and jealousy toward women who surely deserved the joy that was about to come there way, yet I couldn't help myself. They were shopping for cute clothes, having baby showers, complaining about swollen feet and heartburn while I was holding my breath that at each weekly ultrasound they wouldn't find anything else wrong with the baby. Which they did. We were told at one ultrasound appointment that the baby suffered from duodenal atresia, where the upper part of the bowel doesn't develop properly, therefore isn't open and can't allow passage of stomach contents. Another surgery. Another worry. I no longer felt like the wind was knocked out of me. This time I just felt numb. I got so used to being worried and scared. So used to walking on pins and needles that this emotional blow was almost lost in a sea of other worries. "Just put it over there", like I was telling movers bringing in a couch to a new home. Just stick that worry over there. I didn't have it in me anymore. I'll deal with it later.
So "later" was my thought process. Nothing was going to change. It is what it is and if I didn't accept it, didn't stop analyzing it, didn't just live life for a little while, I was going to collapse. So spring came and I did my best to enjoy it. There were parties, birthdays, shopping, grill outs. Sure, I had my moments like when I cried in church Easter Sunday not knowing how to stop, reading books about Down syndrome in bed at night until I couldn't keep my eyes open anymore, researching heart defects online. But then there were moments when I found myself laughing. Moments where I actually did things without thinking about ultrasounds, Down syndrome, hearts, bowels, and our future. Those moments I think is what kept me going. I gained strength by just stopping for a while . . . putting it over there.
Spring 2008 Continued
A Whole Other World
I couldn't keep putting things over there forever. I had to continue to learn and with that came touring hospitals, meeting more doctors and many other daunting tasks that made my world feel so very small. A world that consisted of our inner circle of friends filled with routines, tasks, stresses, accomplishments, . . . the usual things that felt quit large because we had so much going on. Things that made it very easy to overlook the rest of the world that is right outside the door. A whole, great, big world that consisted of doctors and hospitals and organizations just minutes from home. This world was so different and it was all getting ready to collide with our very familiar, comfortable, "normal" world. Take the local Down syndrome organization for example. We decided to venture out to this new and different world right down the street in an effort to prepare in some way. So that's what we did, but once faced with these amazing families, with these beautiful children who have Down syndrome, we went numb. Maybe there's such a thing as preparing too much. Or unneccesary preparing that can hurt as opposed to help. This isn't because something was out of the ordinary or things were very wrong or sad. It was because the babies were all so small for their age and I was the only one there that was pregnant. They all had their babies. And to make matters worse, everyone had the same response when asked that burning inquiry regarding medical issues . . . "No, we were very lucky that we had no medical problems." So not only were we seeing what dinner and a regular event was like for these families, meeting individuals with Down syndrome (first time for both of us), not knowing how our baby would compare because we haven't met him yet, we were enormously overwhelmed with the fact that we were in this dark, unknown area of the room because no one had medical experience to share with us. Don't get me wrong. This is an amazing organization, but I was so naive and left feeling a little mixed about our attending this dinner. Was that a good idea? Did it make me feel better? Do I have a thousand more questions? Was that too overwhelming for what we already have to deal with? I guess the one thing it did do, was add another level of strength to our ever climbing barometer, which as you'll find out, we will need every bit of that strength in the upcoming months.
Then there was another part of the world that we embarked on which would be the hospitals downtown. Wow. All these people got up every day, drove downtown and saved lives for a living. Again, things happen outside your comfort zone, your routine, that are so foreign. So we toured the hospital where our baby would be born as well as Kosair Children's Hospital, the hospital that would treat Brady. Both hospitals were connected and seemed so large. It was like going to High School for the first time and getting lost in the halls only to know every inch of that building after being there for a little while. Which we certainly got to know every corner and turn in that hospital throughout our journey. But I'm getting ahead of myself again. So we toured the NICU (neonatal intensive care unit), which was scary, but much better than what I had in my mind. And it was run so well, that many of my fears were put to ease . . . wow, did these people know what they were doing. I would trust my newborn to be here. The neonatologist and another doctor took the time to sit in a private room and talk to us, answer our questions, and just overall try to make us comfortable with where our baby would be living for a while. It was going to be his home away from home for quite some time and these people not only had the expertise to care for him, but were already in love with him as they were with all the children. Such a commitment to helping these children. It was refreshing as opposed to scary. Of course I say that because we had already expected our child to be there so knowing it was top notch made it easier. If we hadn't known any of this until birth, I guarantee my first passing through this area would have overwhelmed me beyond my imagination. And for that, I give those parents in that position a great deal of credit.
So on the same day as our tour of the NICU, we also had the opportunity to meet with Dr. Erle Austin, the heart surgeon that would be operating on our baby. Can you imagine meeting the man that will operate on your newborn baby's heart? Most of us spend large amounts of time researching the person that will maintain our car, cut our hair, or do our dry cleaning. Everytime I go shopping it amazes me how long I spend in the aisle comparing different brands and prices when we're talking about some small item that will be forgotten by the time I leave the store. This is our baby's heart! So for that reason and that reason alone, you will understand why we looked at this man like a God before we even stepped into his office. He is one of the best heart surgeons in the country. We were convinced of his greatness before we even met, as if we had a choice. We had our questions printed, which consisted of at least 2 pages. We sat in his office with another surgeon and felt relieved to hear a tone in his voice as if he's done this a million times and it would be second nature to him. Of course that was until he started talking about how rare our baby's heart defects were. Rare in that each one individually was seen, but all of them together, in one chid, was just not seen that often. He then went on to say how if our baby was premature "all bets were off" meaning the survival rate and any surgeries he was anticipating would change drastically. As you may remember from my introduction of Brady, he was almost 2 months premature. So you can see where this story is going. Never once did I think to pray for him to not come early. I would pray for him to survive or to recover quickly. Pray for him to have a full life once all this was behind him. I never thought to pray for him to just sit tight in Mommy's belly for the entire pregnancy. I wonder how things would have turned out if he had been full term? This is one of the many questions I asked myself and tortured myself over for many months to come. But over time I decided that God had a plan for Brady and that Brady himself had a plan. Nothing was going to stop the path that Brady was getting ready to start traveling. No one.
Waiting for your table to be called at a restaurant when you haven't eaten much all day. Waiting for the bell to ring at school while sitting in the most boring class ever. Waiting for 5:00pm to roll around on a Friday afternoon so you can finally leave work for a couple days. These waits can be so frustrating and down right unbearable. They don't even compare to the wait that we had to endure for our Down syndrome child to arrive. The child that had a long list of medical issues and a whole team of doctors ready to meet him before he even takes his first breath. This nerve racking wait is what made regular life so difficult. People would try and treat us like they always did, but I felt like the elephant in the room. Maybe it was in my head, but I don't think so. I just know that the whole situation made everyone on edge. I'm not talking about close family & friends of course. They were fantastic. They did everything right. They would tell jokes, have parties make massive attempts to not question, analyze, ask or bring up anything related to "the situation". And as much as their efforts were extremely appreciated, they really didn't work. The thoughts were always there . . analyzing. Still moving through life thinking and breathing everything that was yet to come. It was exhausting.
So part of keeping with our regular routine was going to the Kentucky Derby. We were lucky to be given tickets and thought about not going. I was pregnant after all. On top of the tiring task of dealing with the knowledge of the baby, I was getting quite large and uncomfortable. But we decided that with what was getting ready to come, we should take advantage and have a nice day out and away from it all. I talked to my doctor about it and she assured me I was fine to go as long as I took breaks and didn't overdo it. I was told a few weeks prior that I didn't warrant bed rest, but I definitely needed to be resting. Off my feet and relaxing at the end of the day. No heavy lifting, no working my fingers to the bone at work and at home, no burning the candle at both ends. Tell a full time working Mom of one very active boy to sit after a full days of work and I can guarantee most don't do it. No matter how hard a mother tries, it just doesn't happen. I worried about this and told myself I should probably be listening, and I did take it easy, but not as much as I should have. But I did feel good considering and I wanted this time out before the baby arrived and he wasn't due for almost 2 more months so why not. So I went shopping for a Derby outfit. Actually got myself a new pair of shoes that were completely the opposite of flat, but I was going to be dropped off at the door and I couldn't resits these beauties. The week of and I was ready. I felt good. That changed in an instant as I started having labor pains just 2 days before Derby while sitting in my office at work. I convinced myself it was just Braxton Hicks and went about my day. By lunchtime I was really feeling bad and a co-worker convinced me to take it seriously. So off we went to the hospital.
I'm going to stop there because what comes next is a whole other chapter. A chapter not just in this blog but in our lives and I really have no idea how I'm going to put into words. Holding Brady for the first time and actually hearing him cry! Wasn't expecting that. Being wheeled through the hospital in a wheelchair to see Brady for the first time in the NICU. Walking through the doors once toured, but now as a mother visiting her child. His first surgery at just 1 day old. Leaving the hospital without my baby . . . . . that one needs a moment to digest. Wow. How did I do it? So once again, I'm getting ahead of myself. I have a lot of work cut out for me. Putting these events, but more importantly these emotions into words is hard on so many levels. But, it has to be told. So it will . . . . . . . Birth