its hard to believe...

Its hard to believe that it has been months since I last wrote. I started this blog back in August for a reason I was unsure of at the time. I guess I just felt compelled to write. After hours of setting up and designing the page I sat down and found myself lost for words...which if you knew me is shocking. After everything I have been through over the last year+ I have felt the need to share my story, help inspire others, raise money and do good deeds for a greater cause. It took me a while to figure it all out. After a huge and successful fundraiser in September, bi monthly care packages to Boston, online support groups, Mason's birthday bash and financial stress I realized that it was time to buckle down and start really working on the person who needed me the most...ME.
It has taken me some time to get to this place and honestly I have been kicking and screaming the whole way. I don't need help. I am strong enough. I need to be there for everyone else. I think it took a bit of a slap in the face by a good friend before I realized that it was time to throw in the towel. I was the first one to say "well...if I get to a point that I need to start taking something I have no problem with that". Oh really? It wasn't until my friend made me list exactly what that point of no return was when I realized I had been there for quite some time already. Being sad for days at a time, crying for no reason, constant issues with anxiety, trouble sleeping, irritability, weight loss...I could go on. All signs that maybe I can't do this on my own. I think from the day we found out about Mason's heart problems I went into "mother mode". I was pregnant and I knew that getting all worked up wouldn't be good for the baby and he needed all the good he could get at that point. I will never forget our first visit to Children's Hospital Boston. I was so terrified that I just shut down and went into survivor mode. I think if I let myself really think about what was happening I would have broken down and I knew I couldn't do that. We pulled into the parking garage and I began to sing along with the radio "don't worry about a thing, because every little thing, is gonna be alright" A sign from God I hoped. Walking through the front door and into the office was torture. I felt like I was wearing cinder block shoes. Every step was a struggle. I was so afraid of what they were going to say to us. We had already been told that he basically had no chance at life. That he would likely be brain dead at birth and at best would be confined to a wheel chair. We just didn't believe that. We knew in our hearts that there had to be another answer. Looking back I can't believe how much strength we had going forward that first couple months. We never even discussed termination. Its not something either of us believe in and its like we just both knew in our bones from the very beginning that they were wrong. Our son was going to be ok. Thank God we did. After a 3 hour ultrasound in Boston we were given an official diagnosis. Heterotaxy Syndrome, TAPVR, TGA, Common atrium and pulmonary stenosis. The first two were new to us and actually the most severe. Heterotaxy is a very case by case diagnosis but all in all it makes everything else and every surgery riskier. The TAPVR was the big shocker. Mason's pulmonary veins going from the lungs and delivering oxygenated blood to the heart were connected to his liver. Now at the time as they were telling me this I am thinking to myself "it can't be worse then only having 2 chambers in your heart" oh boy was I wrong. come to find out, Mason had 6 instead of the usual 4 and it was the worst case of TAPVR they have ever attempted to repair at CHB. He is the first known case ever with 6 pulmonary veins. The surgery for this was the issue. It was HUGELY risky. We were told that getting through that first surgery would be a big hurdle to overcome. It would take weeks of waiting before we knew if it was successful. If he didn't go into heart failure over the first few weeks then as time went on the chance would decrease. It wasn't until his 1st birthday that the surgery could truly be considered a success.
 I could go on and on about life during those first few weeks living in the hospital with my son. I honestly think that was the most difficult thing I have ever had to do. I watched children die with my own two eyes. I saw families leaving their child's bedside day after day crying and praying for answers. Aside from my own struggles with Mason just being in a place like that changes you very deeply. It hardened me. It cut a piece out of me so deep in my soul that there is no way I could ever fill it. I sat by Mason hour after hour just waiting for something to go wrong. I waited for the heart failure. The sounds of those machines and smells of the purell and medical tape will forever haunt me. My heart races just thinking about it. I studied the face of his Doctors trying to see if they would let me in . Is he doing well? Sometimes the news wasn't so good. His Sats were down or the blood levels were off. Was this the beginning of the end? Every second I worried that I would leave that place without him in my arms. He was doing seemingly well after going through such a risky surgery...how could this even be possible? Well, so far it has been possible and he has done amazing. At 4.5 weeks old we took him home for the first time. What a moment that was. I was filled with joy being able to be that mom I often admired walking out of CHB with a baby stroller. Life at home was much the same.constant worrying and constant Dr's appointments, 2-3 a week to be exact. At about 4 months old Mason's oxygen dropped and he was put on home oxygen. I "slept" with him on the couch for a week before he went back to CHB for surgery number 2. ( I say "slept" because he HATED the nasal cannula and ripped it out constantly sending all the monitors and me into panic mode) We went to CHB on a Tuesday for Pre op. Wednesday was his cardiac Cath. (surgery through the groin to test pressures and make sure they can handle the "real" surgery) and Thursday was the open heart surgery. Jeremy had gone back to the housing the night before to hopefully get a little sleep. Mason cried ALL night long. he has a terrible time with the sedation from the cath and he was miserable. I rocked and cried along with him for hours until a nurse practically forced me to let her take over so I could get some sleep. After about 2 hours they called for us to get ready to go down to surgery. Jeremy was no where to be found. I called him and called him and nothing. At this point I broke down. How could I possibly go through this alone? How could he miss such an important moment? Well...It was like a scene from a movie because the second my elevator door closed his opened. His phone had died in the middle of the night and so he had no alarm to wake him. He woke up in hysterics and ran the 1 mile it was from the housing to the hospital to get there in time. I got to the surgical floor and walked in holding Mason in my arms. Within 10 seconds in walked Jeremy. I was so happy to see him and so angry at the same time. A few minutes later it was time. They had me put on scrubs and as I held him they gave him his first dose of medicine. He began to fall asleep in my arms as I walked him down the hallway and into the operating room. I kissed his forehead and laid him on the operating table. In went the second dose of medicine and out he went. I am so greatful that I was able to comfort him but at the same time it was so hard to leave him there knowing full well what was about to happen. The surgery went amazing and in no time he was back to normal. Within 2 days he was smiling and playing again and on Monday only 6 days after admission and 4 days post op we went home.
He truly does have an amazing story. Kids like him just don't do very well. Statistically speaking, 85% of Heterotaxy kids die before their first birthday. Every case is different but Mason's heart disease is on the more extreme end and still he has done so well. Most Heterotaxy kids don't eat and have feeling tubes, not Mason, most (92%) have malrotated stomachs and need surgery to repair it, not Mason, most (95%) have no spleen, not Mason (ok so he has one but its on the wrong side of his body so it doesn't work...but its there). There are so many issues that he statistically should have yet he seems to be sailing through all of this as if nothing much was wrong. He certainly looks like a normal kid. He run's around and talks like a normal kid. Sometimes I wonder..."are they sure it's really that screwed up inside him?" Its kinda hard to believe.
We are now coming up on surgery number 3 and it is scaring the shit out of me to be honest. I know that statistically the odds for success are not great but he has proved them wrong every other time so why would this be different, right? The truth is, everything about this surgery is going to be different. Success rate aside, Mason is older now and he understands everything that is happening to him. He fights me during echo's and EKG's, he is a nightmare to get a blood draw from so I am forced to hold him down (NOT fun), he feels scared now, he clings to me, he cries for me when I can't be with him and it breaks my heart. We will probably be in the hospital for at least 2-3 weeks likely more like 4-5 and it is going to be SO hard. I am still not over the first 2 admissions. I am still healing from the damage they caused me. How am I going to get through it? Being at CHB is getting harder for me every time I go. Its like I am only now starting to go through all the emotions built up in me over the last year or so and now I have to go back and add more to the pile. Mason is growing and developing wonderfully and I think I was just starting to let down my guard ever so slightly and not I have to throw it back up. The Fontan (surgery #3) has a lot of risks and I worry all the time about it. I know that the Heterotaxy Syndrome complicates everything and the fact that he has a non functioning spleen opens him of to high risks with infection. I am afraid that something is going to go wrong. I am afraid that he will go into heart failure and need a transplant. I am afraid that if he does go into heart failure that his other organs will shut down before the transplant comes. I am afraid that Mason might die. How could I possibly go on? How could I ever feel complete without him in my life. The thought is almost unfathomable. I know his future is unknown and what may or may not happen with his health in 5 or 10 years is under debate. What I do know is that this Fontan surgery is coming soon and its so hard for me to focus on anything but. I know I should try to live in the moment and enjoy the time we have right now. Easier said then done.
So here I am back where I started. Struggling to work through the last year and move forward. Sometimes  feel very sad for myself and the journey that was chosen for me. More often I look at Mason and my heart breaks for him knowing what he has going through and that it is only the beginning. These surgeries will never "fix" his heart. They are only giving us time for research to develop and come up with more options. He will need a heart transplant someday. It could be in months or years. The future is very unknown. I will try and try to love him with everything I have and promise to cherish every second we share together.
So, months have gone by and still I sit here struggling with every breath I have to put on a smile and try not to think too much,. I have an appointment with a Dr. next week to talk about maybe going on something to help me get through the days when things just seem harder then they should be. I know that the next few months are going to be a roller coaster with hospital admissions, testing and the impending surgery and I HAVE to be able to hold it together for Mason..
And so after months of nothing I have spilled my guts. I think I have discovered the reason for this blog. Sometimes I need to get out all the emotions I have locked up inside. Maybe you are reading this going through a similar story or maybe I have inspired you to hug your baby a little tighter. Be greatful for every moment because you never know when it may be your last. Have no regrets and love with everything you have.

giving back...

I have found myself on a quest to give back. Right now I am only able to give in small ways but I'd like to think every little bit helps. Back in February I started donating care packages through a program I call MasonsFight4Life. I would love to some day become a non-profit but I have yet to figure out how to do that. I deliver the care packages every other month. They are usually themed to try to narrow down what will be included that month. The first one was snacks and things to keep you busy, 2nd was toiletries, 3rd was arts and crafts things etc. I bring everything to the Cardiac floor and allow the families to help themselves. In June 2011 I put together a Spa Day. Myself and 4 other friends volunteered our time to provide haircuts and manicure to anyone who wanted one (we are all licensed for the record). It was a HUGE hit! We plan on going back every 4 months. The big one I am working on right now is a Cut-A-Thon at the salon I work at. We will be offering haircut and mini spa services for a minimum donation of $20. We also are providing refreshments, entertainment and raffles. We are hoping to raise $5,000 but I have a feeling it will be more like $10,000. I have had an unbelievable amount of support from the community and even local newspapers and radio stations are talking about it. I know its going to be much bigger then we originally thought.

http://www.thereminder.com/features/page2feature/cutathontobenefitc/

http://www.belchertownsentinelonline.com/

Mason's Story: The first year

Mason's Diagnosis

I wish I didn't feel the need to write an entire seperate post about Mason's diagnosis but unfortunately there is a lot to write about...

When I was 20 weeks pregnant Mason was diagnosed with Severe heart disease. Our local hospital admitted they didn't even know what they were looking at because his heart was SO abstract looking. We were told Mason would likely not survive and if he did he would have brain damage and be severly disabled because of lack of oxygen. It was recommended to terminate. A few days and a lot of praying later we saw Dr. Tsirka at Batstate Cardio and she gave us our first ray of hope. Mason's heart was complex but she felt confident that Boston could try to repair it and that he would indeed grow fine and thrive until the umbilical cord was cut and he was left to do it on his own. At 27 weeks we went to Boston and after 8 hours of testing and ultrasounds we got the diagnosis...

• Heterotaxy Syndrome ( a rare disease that causes your major organs to grow abstractly, in the wrong place, or not at all)
• Infracardiac Total Anomalous Pulmonary Venus Return ( Mason was born with 6 pulmonary viens: 4 going to his liver and two going to his head. They were all tangled up and we were told it was the worst case of TAPVR they have ever attempted to repair.)
• Double Outlet Right Ventricle ( there is question about which ventricle is actually missing. It is very abstract looking but they think he has the right although it is tilted the wrong direction),
• Transposition of the great atreries (The blood in the Aorta and Pulmonary arteries are flowing in the wrong directions) 
• Atrial Septal Defect ( So, Mason kinda has a common atrium. They think he might have a very small right atruim with a large ASD. They could never repair it to make 2 atrium so it doesn't really matter in the end),
• Pulmonary Stenosis ( this was actually a GOOD thing at birth because it slowed down the blood flowing to the lungs and he was able to avoid a Norwood or banding)
• Mason is also considered asplenic although after further testing we found that he does have a spleen it just doesn't work. His liver and his spleen decided the trade places. The blood is flowing through it but not cleaning it...we will be going to CHB on 8-22 to learn more about that.

So...half a heart, sideways, with a right ventricle and left atrium.
Mason was born on 9-8-10 at B/W. He was rushed over to CHB and intubated that night after SATing in the 30's and 40's.  At 2 days old he had a sutureless repair for the TAPVR. They told us it was the worst case of TAPVR they have ever attempted to repair. VERY RISKY! He did have a hard time the first couple weeks with getting off the vent. His lungs collaped twice and he stayed on CPAP then high flow O2 for another week. But...after only 30 days we were on our way home. He came home not eating well (maybe 7-10cc)  and was tube fed...after only 24 hours at home Mason decided to rip out the tube and downed a 2oz bottle. Over the next few weeks he was eating normally and gaining weight well. Over the next few months he did very well. As expected, his O2 dropped and ended up on home oxygen. When he was 4.5 months old he went in for his Glenn. He was home in 4 days!!! He had a bad "Glenn head" and didn't sleep well but after about 6 weeks he had settled down and has been doing amazing ever since. Mason's O2 is about 92 right now (11months old) and has pretty much no complications or setbacks from surgery. He is learning to walk, talk, he's waving and playing like any other 11 month old would. He is a miracle!
The plan is a Fontan late summer/early fall of 2012. We are terrified and excited about it all at the same time. I think we will be glad to put it past us. We have been told by Dr's that he will likly need a heart transplant within the next 10 years. I don't think about that too much because so far he has done remarkably better then expected so I am betting on it staying that way. When he does need a transplant we are hoping he is older and technology has advanced to a point that they can use his cord blood stem cells (that we banked at birth) to create a new heart or repair the one he has.
I love to meet other families touched by CHB. We KNOW without CHB, Dr. Bergersen and Dr. Emani Mason would not be with us today.

MRI picture of pulmonary viens before repair

Where to begin...

Mason is turning 1 soon. I think back on the last year and sometimes it seems as though I am recalling someone else's life...did this all happen to ME? Its weird how when you are going through something traumatic in life you seem to function on auto pilot. You roll with the punches and keep your eye on that light at the end of the tunnel. For some of us we never get there but luckily for us we did and that light is shining bright. In the end we took our son home. We wake up every morning and kiss his sweet forehead, read him books and listen to the sweet sound of his giggle as we tickle he little feet. Our life might be totally different then we ever pictured it to be but as a whole we have everything we ever wanted. We have 3 beautiful children, an amazing marriage, wonderful friends and most importantly, we have each other.
It is only now that most of the chaos is over that I sit and really think about the last year. I only allow myself to relive bits and pieces. I think If I really took it all in it would be just too much to bare. The day we found Mason had a broken heart we were told to "go home and grieve". At the time I thought we were being told to say goodbye to him. Now I realize what they really were telling me. I have lost something. I have lost what I always thought was "a normal life". I have to say goodbye not to my son but to the life I once had. I have to come to terms with the fact that Mason will never be "normal". He will always have to worry about his health and he will spend way too many days of his life in a hospital. I AM grieving and that process is slow.
I find myself getting caught up in it every once in a while. I think about the fact that at any moment God could take him back. Let me tell you...If you don't have a sick child you will never understand that feeling and I hope you never do. It is TERRIBLE! Every cough, runny nose, sneeze or cut could be the beginning of the end. It makes me CRAZY! I know that in time his immune system will get stronger and once he gets his next (3rd) open heart surgery his heart will be less vulnerable. Time hopefully WILL heal. But for now he is fragile. He has a non-functioning spleen so any cut or scratch could turn into a Staph infection very quickly. His heart and lungs are weak so any cold could easily turn into phenomena. If his heart struggles his lungs will struggle and visa verse. We were told he WILL need a heart transplant at some point in his life but we need to keep his lungs safe to avoid the possibility of a heart and double lung transplant. If it ever got to that it would NOT be good! I worry about sickness and germs everyday but I also remind myself that I can't keep him in a bubble. That is not living. I do what I can to keep him safe but I also let him be a kid. I take him to the park, let him swing on the swings, ride in the grocery cart (after I purell it) and crawl on the floor. A little bit of germs is a good thing...or so I've been told. We don't know what the future will bring but what we do know is that the now is wonderful.