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| Mason at 3 hrs old with transport team |
Hi. I am Casey Freitas. Mother to Mason Fluty, and this is his story.
WOW. So It's taken me 18 MONTHS to sit down and actually begin blogging. I first and foremost want to express my gratitude to everyone who has in some way helped out thus far with Mason. Whether it has been financially, fundraising, family, a simple text asking about him, or about the rest of the family, and the friends who have been absolutely amazing through this all. Thank you! My first post I mostly want to give just a back ground on Mason's story. I think a huge reason I have been procrastinating doing this is because of all of the emotions I get when thinking back to the day he was born. But here goes....
On Nov. 21, 2010, Michael and I found out that we were going to have a baby. We were so thrilled. At our 20 week appt., We learned that our baby would be a boy. Michael being 1 of 7 boys, was so excited that he was going to have a little man to carry on his last name. The doctor told us our baby looked great and was healthy. I questioned him about my little boys hands and how they looked as if they were in a fist in every picture. He said, "Babies do this in the womb. Don't worry. He looks great." I had an easy pregnancy, until at 36 weeks I began having contractions. They decided they were going to do a c section because my contractions were very close and I was far enough along, but before doing so they wanted to do a quick ultra sound. As they did some quick measurements, the doctor said, "His head is only measuring at 32 weeks." They gave me medicine to try and stop the contractions and decided against the c section because of the odd head measurement. I STILL thought everything was ok, and that my little man just had a small head (he he).
The following week my doctor did an amnio to check the lung maturity, because I was indeed 37 weeks and I was almost guaranteed a healthy baby. Tests came back positive, and we were good to go for a c section with in the hour!! I was so nervous, and excited. I couldn't wait to hold my little boy.
As I laid there in the operating room with a friend, we anxiously waited for them to pull Mason out and show him to us. But as I heard him start to cry, the doctor looked over the blue drape and said, "Your baby has a chromosome disorder." My reply, "What? That's not a funny joke." He then looked over again and told me that Mason fingers and toes were fused. I instantly burst into tears and was in a cloud of confusion. I began talking out loud like a crazy woman. "A syndrome? 50 year olds have babies with syndromes. Where is he? Let me see him. Did I drink too much coffee during my pregnancy? Did I do something to cause this? Let me see my baby. Why can't I see him?" Someone responded, "Your baby is having trouble breathing." I was in a sea of emotions. Finally they brought him over for barely a second and showed him to me. He was perfect. His fingers and toes were not visible, but I immediately fell in love with him. But I looked a bit closer and realized something was wrong with his head. "What's wrong with his head?" The nurse walking away with him said, "Nothing, sometimes this just happens when they are in the womb, it will start looking normal soon." I knew that something was not NORMAL about his head. They whisked me away to recovery. The NICU doctor told us that Mason's syndrome looked like what he thought was "apert". So in between throwing up in a tub from all of the anesthesia, I was googling this syndrome called apert. Pictures were scary. Very scary. I read what I could, and it didn't look good for Mason.
They finally took me to my room, and told me that an intensive care transport team from University California San Francisco (UCSF) hospital. They would be a better option for taking care of Mason. My nurses name was Tulip, and I can swear to you I almost laid this lady out in my hospital room. She first came up to my bed ( I am still vomiting to the point of barely being able to talk), and shows me Mason's newborn hand prints, and says in her extremely broken English, "I don't know what wrong with doctor they didn't get hand all way. It look like blob." I said, "His fingers are fused, that is why it looks this way". Then she told me (obviously not educated on my newborn infants syndrome), "Why you baby in NICU? Some times baby just born can't breathe from being in there too long. He come soon." I began telling her that my baby was being transported to UCSF and I hadn't seen him yet and I wanted to go to NICU to see him. She told me that I would see him later. THAT WAS ENOUGH FOR ME. I began getting out of my bed, 2 hours post op, throwing up and pretty much began crawling down the hall. Until TULIP realized that I was serious. She then told me I could go for 15 min and that was all. I finally got to hold my little boys hands. They were so cute and so fused. Michael had been with him since he was taken to NICU and he told me he was so happy and that he loved Mason so much, which was a huge relief, because I was still thinking that Mason's syndrome was my fault.
So recapping thus far. Mason's hand WERE weird in ultrasounds. His head measured smaller because of that shape and he was off to San Francisco.
Michael and his dad went to San Francisco the next day to stay with Mason until I could be there. My doctor let me go the following day. I finally got to hold my baby.
Mason stayed at UCSF for the following month. Michael spent the weekends there, but other than that I drove EVERY DAY 2 hours there, 2 hours back. Just to hold him and make sure Jeremy and Brodey, Mason's older brothers were able to hug and kiss on him. They adored him immediately. We had meetings with this team, and that team, and students and genetics, and so on and so on. I still look back at that entire time as a time of mass confusion. I remember getting the news that Mason had all 10 finger and toe bones. I was so excited, and just figured that was something that we could fix later on. There were lots of sick babies at UCSF. Sick babies went to that hospital because they were so good, but it was always so sad to be there.
Coming home. Mason was on oxygen for the first 4 months home. Because of his abnormal airways he couldn't breathe. So I lugged that thing back pack tank everywhere. Football practice, mall, store.
I could go into all of the details of every surgery and every little scare but there will be plenty more sooner rather than later I fear, but to sum it up Mason has had 2 cranial vault reconstructions, 2 finger/toe release surgeries, and tubes put in his ears. We are preparing for his next surgery, which will be a shunt. This will drain fluid from the brain to his stomach and hopefully stop his hydrocephalus. We should be having scans done in the next week or two, and will have a better idea of surgery date after that. He is also having a sedated hearing test on Thursday to adjust his new hearing aids perfectly to his hearing loss. We go to San Francisco almost weekly for appts., sometimes more. I arrange all of these appts while my older boys are in school, so they are never bothered by them, because after all of the appts., real life/or what I can my real life is still happening.
Mason continues to develop, behind most, but steadily trucking along. He has an early intervention re-evaluation this next week to measure exactly where he's at. I am so proud of how far he has come, and look forward to watching all of his progress.
I mainly wanted to start this blog for two reasons: Apert awareness, and venting my feelings. Some days are overwhelming and exhausting when it comes to Mason's care. I swear, like a friend told me today, fighting the insurance companies is a part time job on top of everything else that comes along. I have spent countless hours on the phone with ins.
I want to thank ya'll for taking the time to read my blog. Think I am cut out to write a novel? he he
