Miller Time: January 2009

Sunday, January 25, 2009

A Fellow Heart Friend

I just wanted to take a minute and see if everyone would vote for a fellow friend for a day of pampering. Emily has lost 2 children to heart defects. She is now attempting to adopt but this is well deserved. She has been through so much, as I am sure all of the women on the web page have, but I have a special place for those heart kids! Please go vote for her! Thanks!

seriouslysoblessed.blogspot.com

Saturday, January 17, 2009

New Adventures

Well I finally did it! I finally will start a new adventure! School here I come! That's right after years of talking about it I signed up. I am not taking it slow either! Full force, full time. I have a goal to be done a.s.a.p. and before all my kids are in school. Which means York will be starting collage! LOL! Not only did I decide to go back but decided what I was going to be when I grow up too! I know I am really turning the leaf here! Here it is... Drum Roll Please!... Nurse Practitioner. If I was young had no kids I would be a pediatrician in a heart beat. But I take things the long hard way, and got married and started my wonderful family first. So yes I am kind of settling but I still will be able to practice medicine which is really what I want to do. I obviously will go into pediatrics, I don't do adults, I would much rather the dirty snotty noses any day! I really hope to get on with the Cardiology department when I get done. I think for obvious reasons. The hart is an amazing thing, and I love it, and I love heart kids! the great thing is most of my schooling will be paid for through work. When I get done I will have next to nothing in student loans! YIPPY! I think that is the best thing I could do for my family. So my plate is full... full time work, full time school, and full time mom. I am sure there will be days I hate myself, hate work, hate school, and my family will drive me crazy, but I am excited for all that. I will accomplish something I have wanted for the longest time. I will have accomplished a life long goal. So bare with me if I am ornery, vent, or never post! And wish me luck because I am going to need it! One more added note... I am on day shift now so I will have a life again! Another YIPPY!

Wednesday, January 7, 2009

Christmas...Late

I am determined to get caught up on blogging! I am so far behind and I don't think I will ever be caught up! So Christmas comes first. I was very nervous about Christmas and how we would ever be able to pay for it. We pulled it off by some Christmas miracle though. We actually received a check from a medical bill we over paid! For those of you who have medical bills like we do...you never over pay...in fact you are lucky to pay! I don't know how this happened, but it did and it was just in the "nick" of time. Between that and Santa Grandma we had a pretty good Christmas.
Every Christmas eve I make a turkey dinner. I invite anyone who is willing to come. This year it was my Mom, Dad, and my brother and his family. I have to say I make a pretty MEAN Turkey. I love to cook when I have the time and it usually turns out pretty good. Although we didn't have York this Christmas he was with his egg doner... I mean mom. I think this is the first Christmas in about 8 years we have not had him. It was kind of sad. He missed all our traditions... dinner and of course there PJ's we open for Christmas eve.
Christmas was fun and exciting for the kids. I think they got pretty much everything they wanted. The highlights were...
Guitar Hero III for York, Geo Trax for Cache, Airhog for Mason, and Dylanns Little Pony's. Of course all the kids loved the WII we got them. We bought that so long ago and it was just sitting in our closet for Christmas. So many times Eric and I just wanted to open it and play it ourselves!
It was such a great Christmas and I am so thankful for all of our many blessings.

Dylann

Mason

Cache

And my turkey... yes I took a picture but it do not give it justice to the taste!

Our Long QT Syndrome Story

My teenage years were full of sports and exercise. There was not a day that went by I didn’t have some sort of game or practice. My days consisted school, track, soccer, a jog, and finished up with some strength training. Never would you have guessed my heart was broken. I was older, married and about to have my second child, Cache. I was off to my usual 32 week check-up at my obstetrician office. That was the day our lives changed forever. It was that exciting moment when you get to hear that slushing heart beat and know that the big bump in your belly is this living being in your body. That slushing sound turned out to be my nightmare. My doctor explained to me that the baby’s heart rate was far too low and that my son had something wrong with him. This is something you never expect to hear when you are having a baby. Babies don’t come out sick? At least that was my naive way of thinking. My doctor told me to walk over to labor and delivery and he would meet me there as soon as he was finished with patients he had in his office. When I got to Labor and Delivery, they strapped me up to all these machines, and I had instant panic around me. Nurses were rushing around and almost screaming. All I could do was sit there and wonder what was going on. Next thing you know I was being prepped for an emergency C-section. That was until my doctor walked in the door and told them all to calm down. It was a sigh of relief. My doctor performed an ultra sound along with what felt like another 30 doctors. They all agreed with one thing, my baby was fine for now and needed to stay right where he was. He stated that there was something defiantly wrong with his heart, but until he was born they would not know what. After 36 weeks and lots of daily monitoring and doctor visits, I was induced and my beautiful little boy Cache came into the world fighting like a champ. The next few hours were about to change our lives forever. Cache was diagnosed with Long QT syndrome a few hours after birth and was immediately transferred to Sunrise Children’s Hospital. I was discharged and headed there to figure out just exactly what was to happen next. There we were greeted by the pediatric cardiologist who had done an ultrasound on Cache’s heart in utero. He began to explain the details of Long QT syndrome and how they treat it. He then told us they could not treat Cache because his heart rate was already dangerously low. To fix this, our son was to have open heart surgery and have a pacemaker placed. A pacemaker, isn’t that for old people? We were numb and just in a really bad dream. Three days after our perfect son’s birth he was placed with a pacemaker in his little tiny tummy. I remember that day clearly and as I held him waiting for the surgeons, Landslide by Fleetwood Mac was playing on the radio. It was a Saturday morning and we meet the surgical team. They answered all are questions and we walked my infant son down a long hall. We gave him a kiss and we said good-by. The hospital waiting room was a ghost town. We waited, and waited, and waited, and then did a little more waiting. I clearly remember seeing the whole surgical team walk into the deserted waiting room. My heart sank and I think my knees nearly hit the floor. Why were all of them coming in? Why did they all need to talk to us? As we approached them the head surgeon said “Everything went great.” The best words we had heard our whole lives. I am not the “reach out and give a hug to a stranger” kind of girl but I did just that. The next few weeks, after Cache’s pacemaker placement, had its up and downs. His heart rejected the pacemaker and fluid began to build around his heart. They eventually had to go in and put a drain in to his heart to relieve the fluid. We had trouble with feeding and jaundice. It was three weeks to the day that my son was able to come home and have his two older brothers hold him for the first time. Life with Cache has proven to be a challenging one. Cache never passed a newborn hearing screen and while most parents would be freaking out about this, we had much bigger fish to fry. We were told at the time of his birth that Cache could have a very rare form of Lonq QT Syndrome called Jervell and Lange-Nielsen syndrome. This rare form of Long QT Syndrome causes sever to profound hearing loss. At about the age of three, this was confirmed through genetic testing but Cache also carries another genetic strain as well, Long QT Syndrome type 1. No one, as of then, had ever carried these two genes on the national registry. He had a double dose. It was also confirmed that I too had Long QT Syndrome type 1 and so did my other two biological children. Through the years Cache has had many obstacles he overcame. At the age of 2 ½ he had a deadly arrhythmia and was lucky to be alive. After that arrhythmia, it was then decided Cache needed his pacemaker replaced with an Implantable Cardiac Defibrillator (ICD) and have a left cardiac sympathetic denervation. It was a little over a year after the ICD placement in his stomach that it became infected. The ICD was removed and he was placed in the Pediatric Intensive Care Unit for a week until it was decided that he was big enough to have an ICD implanted in his chest. A few weeks later he had to go back in and have pieces removed that had been left in him on accident. Cache is a thriving child and plays like any other child. We have been very blessed and we all consider him our life saver. He not only saved his Mom, brother, and sister, but his Uncle and three cousins. I am the luckiest Mom in the world to be Cache’s Mom. He has given me far more then I could ever give him. Cache inspires people with his amazing smile, big blue eyes, and love of life. Cache has taught us and everyone surrounded by him that life is far too short and life is more than just the daily grind. It is about living life to the fullest and making sure those who you love, know you love them. It is about today, and living in today, not about what can happen in the future. We have today and that is all we need to get to tomorrow.

Miller Time

ERIC-MELISSA-YORK-MASON-CACHE-DYLANN

Sunday, January 25, 2009

A Fellow Heart Friend

Saturday, January 17, 2009

New Adventures

Wednesday, January 7, 2009

Christmas...Late

Come What May and Love It

How Two Made Six

Our Long QT Syndrome Story

Cache...Living with Long Qt

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