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.