Monday, October 15, 2012

One year ago (part II)

I felt such a mix of emotions hearing that Jensen would have to fight for his life. Anger. Hope. Anger. Denial. Anger. Sadness. Anger. Did I mention how mad I was that this happened to MY baby. I was infuriated. I did everything right. I took vitamins, ate well, exercised, planned for this baby for months, and he has to suffer? How is that fair? 
Graduation @ 29 weeks
Between my moments of fury, I would have times when I felt totally calm. It was almost peaceful knowing that yes, our baby has this terrible diagnosis. Now, what are we going to do about it? I sometimes felt lost thinking of all the possibilities. Other times I felt total clarity and knew exactly what we had to do. 

Waiting on baby boy in Philly

After our appointment with the maternal-fetal specialist I really didn’t know what we were up against. I just knew something was wrong with his heart. I was so scared and anxious to learn more. 

Exploring the campus at 67,000 weeks pregnant (well, maybe not but it sure felt like it!!)

After a grueling wait, Monday finally arrived and I went to the fetal echo armed with a notebook full of questions. I am so grateful for Dr. Robinson. He not only gave us peace of mind about Jensen's prognosis, he answered every question we had and was so patient with us. I  learned so much at that appointment. I learned exactly what was wrong with his heart and that Jensen had a chance at life. He would have a rough road with many surgeries and hospitalizations, but he could LIVE. He would be able to play sports and be rough like a typical little boy. The information we received from Dr. Robinson was dramatically different than the grim diagnosis from the high-risk OB. 

Our hero finally arrived <3

Dr. Robinson assured us that although a difficult defect to deal with, it was manageable. Kids walk around all the time with half a heart. Wait...what?? Half a heart? It was about half-way through my long list of questions when I could finally picture Jensen’s heart. It was only half of what it was supposed to be. That thought was amazing to me because this little boy kung-fu kicked me all the time! He seemed so strong for only having half of a heart. 

Post-Norwood. One of the ECMO techs took this for us.
 For the remainder of my pregnancy I became obsessed with researching everything I could on HLHS. Although I bordered on the psychotic, I amassed some serious data about hospitals, survival rates, surgeons, surgical options, post-surgical care, long-term health risks...etc. I knew the numbers, I knew the risks, I (thought I) knew the heartache that would go along with this diagnosis. I just refused to accept this heart defect as a death sentence. My boy deserved to have parents that would give him the world. It didn’t matter if I was scared out of my mind at times, he needed me to be there and be strong. So until he arrived I was determined to be as positive as possible. Some days that plan didn’t work and I was consumed with guilt and anger. But most days I was able to put my boxing gloves on and fight for my kid. 
This perfectly sums up how wonderful Dr.Fuller is.
I knew that if we wanted to give our baby boy the best chance at life, we had to go to the best hospital in the country. CHOP. There was never a doubt about where we should go. We even interviewed at other hospitals just to make sure I was not missing any detail. No one could put my mind at ease more than the staff at CHOP. From the moment I called the Center for Fetal Diagnosis and Treatment, I knew it was the place. Stepping through those doors felt like a huge weight being lifted off my shoulders. I can’t even describe the confidence I had in Jensen’s team  in the weeks prior to his arrival. 
Leaving post-Glenn!
Although it has only been one year, it feels like an eternity. Jensen is now almost 8 months old. He is not just living, but thriving. He is making me realize every single day that the diagnosis does not matter. Half of a heart or not, this kid has more life and love than anyone I know. I still put my gloves on and fight for him every day. But now, I fight even harder because he gives me a reason to be better and stronger. I thought my world was shattered October 14, 2011, but it was just beginning. He’s opened my eyes to some of the most beautiful, resilient kids who also happen to have “defective” hearts. I’ve met many amazing heart moms with incredible strength. My world is now a heart world. That means that we spend a lot of time in hospitals and doctor’s appointments, that also means we cherish every moment. Jensen has taught me life is even more precious than I imagined. The life of a heart mom is far more rewarding than I ever hoped. 


Sunday, October 14, 2012

One year ago (part I)

One year ago today was the day that changed everything. The day that my world fell apart, upside down, inside out, and all kinds of broken. October 14, 2011 is the day I thought our baby boy was not going to live. Let me set the scene for you. 
Presenting my research...12 weeks preggo =)

I was in my last semester of college and had just finished up working on a research project that I absolutely loved. My pregnancy had been going great. I was healthy, happy, and excited about graduation! I already had big plans for the nursery and wanted to get a head start on it because I just knew we were having a boy. The most exciting day of my pregnancy was going to the gender scan. I had an appointment scheduled at my OB's office when I was almost 20 weeks. Everything was going fine and all I could think about what confirming that we were having a boy. Our ultrasound tech spent a long time going over all the organs, most of which I didn't pay attention to because well, they're not as cute as seeing hands, feet, and a profile. She went through every organ and finally got to the only part I cared about and told us "its probably a boy".
 Looking back, I wish I could slap myself for being so stupid and naive. 

My doctor came in and her exact words were, "Everything is fine, we just can't see the heart well." She said she was referring us to a high-risk OB because they have better ultrasound machines. I asked her if we should be worried. She told me, "There's nothing to worry about." Ok, so I just thought he was positioned in a way that they were unable to get good enough images. No big deal. Our doctor seemed ok with it, so I would be too. 

My level II ultrasound was scheduled for the following week at UNC. I was surprised they got us in so quickly but I was happy that the appointment was during my fall break so I wouldn't miss any classes. Jeremy and I had already planned to make a day of it. We were going to go to Raleigh, eat lunch somewhere new, and go baby shopping. 

As we got closer to the day of the appointment I was getting more nervous. I didn't understand why but I couldn't shake the feeling. I just assumed it was some kind of pregnancy paranoia. 

The ultrasound took about 2 hours. They went over every single detail of the baby's organs. Of course we were anxious to confirm (for sure this time) that he was a boy and the tech got us a clear view of boy parts...we were ecstatic! Jeremy called that moment the happiest of his life thus far. That was the end of the marathon ultrasound. The tech then told us that the doctor would be in soon to talk to us. At that moment, I got scared. I realized that while we were gushing over our baby boy, the tech spent a long time looking at his heart. I told Jeremy I thought something was wrong. I felt like I couldn't breathe. I'm pretty sure this was the first time I used my "mom-intuition". 

The maternal-fetal specialist came in with the ultrasound tech, who was carrying a box of tissues. Every emotion that I felt from that point on was so physical, so raw, so painful. I knew what was coming. My ears started ringing as soon as the doctor started talking and I only heard bits of what she was saying. 

"....the baby's heart..." "....left ventricle..." "...congenital defect..." "...termination...." 

At that I let out a loud, uncontrollable sob. I hadn't even noticed the tears streaming down my face until then. Did she actually suggest that I terminate my CHILD? I had to leave. I'm not sure if I even said anything or if I just got up. I ran to the nearest room I could find, which was a bathroom. Jeremy came in with me and we just held each other for a minute...right there in the bathroom. Although a lot of details from that day are foggy, I clearly remember asking Jeremy why this happened to us. We were good people, our baby did not deserve this. 

We stayed at the office talking to counselors, geneticists and OBs for hours. They all showed us outdated diagrams of a hypoplastic heart and despite my basic knowledge of anatomy from college, I had no idea what they were saying. I couldn't think of anything other than my baby not surviving. The most excruciating part was when we were about to leave, they told us that if we wanted to "end things" we needed to make a decision quickly because they were running out of time based on how far along I was. Without even consulting my husband like we would normally do, I quickly told them not to mention that again. Jeremy and I sometimes have telepathic powers and I knew he was thinking the exact same thing. I was too disgusted to stay at that doctor's office any longer. 

I remember dreading having to call everyone and tell them the news. I knew my family would all be waiting anxiously to hear how the ultrasound went. I called my mom first. I know I didn't make any sense at all, I was crying so much I could barely get a sentence out. I told her that I couldn't bear to talk to anyone else and hung up after a very short conversation. 

Jeremy and I drove home in silence and didn't have much to say when we got home either. All I could think about were the million questions I had about my baby boy's quality of life. We would have to wait through the weekend until we could see the pediatric cardiologist, Dr. Robinson the following Monday. 

The rest is in part II...

The day after Jensen was diagnosed 

Looking at this picture brings back so many memories. This smile is totally fake. I wanted to skip taking my weekly picture that weekend but I'm glad I didn't. 

Wednesday, October 3, 2012

On the mend

Our whole family had the plague over the weekend. Some might have called it a sinus infection but it felt much worse! Jensen and I both ended up on antibiotics but we are doing much better now. We were so concerned about him being sick for the first time and constantly watching his sats that I didn't realize how sick Jeremy and I were. Jensen still has congestion and a cough but he is definitely improving. 

We had to reschedule our cardiology appointment for next week which means we go to Raleigh on Monday, Chapel Hill on Wednesday to see the hematologist, and PT on Friday. Being sick really messes up our schedule! I try my best to make sure we limit the doctor's appointments/week, because they are so exhausting for Jensen...and us. The poor guy has been all turned around on his sleep pattern and eating schedule for the past several days. Hopefully things will get back on track soon because its 11 pm and he's happy as a clam playing with his toys!  

By the way, he sat up like that for several minutes before getting tired and toppling over. I'm so proud of him! He is getting so strong! 

Hope you all have a great rest of the week =)