Wednesday, March 31, 2010

It Feels Like the Flue, So They Gave Me a Balloon

My name is Marriah, I'm two days old and I feel like I have the worst flue ever. The doctors blew up a tiny balloon inside my heart and I've been assimilated into the Borg collective.

Mommy and daddy got to visit me a bunch today. They helped me feel a little better from all these people poking at me, and a case of flue-like feelings that made me feel terrible. The medicine, called PGE, that kept me alive was given to me all day long. But the side effect of PGE is it makes me run a feaver, and feel like I'm really sick. Thankfully they were able to give me much less of it by bedtime.

One of the doctors sat with mommy and daddy for a long time and told them everything he knew about my condition. The plan was to use a tiny balloon and thread it into my heart, where they would inflate it and get my misbehaving valve to open up. The doctor was very dour about his expectations. Given the state of my heart he wasn't very confident in how much of a difference it would make.

Dr "Dour", that was my nickname for him that day, took me to one of the operating rooms of Children's. Mommy and daddy were so upset, they didn't know what to do, so they kissed me good luck and went to the chapel to pray. While they were off praying, I was being placed in a deep sleep where "Dr. Dour" could do his work. He was very skilled, and very confident in his abilities. He didn't get discouraged when the first two balloons weren't strong enough. On the third try, he got it to work!

Immediately, the busted valve started doing it's job. The valve is still a problem and will have to be replaced. But, I might be three years old before we need to worry about that; that's 500 lifetimes compared to a two-day old. Mommy and daddy think my second day of life was the longest day, ever.

After the procedure was finished, I started waking up. They had reduced the PGE, which made me feel not so terrible, but still pretty bad. "Dr. Dour" was much more optomistic about things after the procedure. He had a well earned and satisfied smile from a job well done. He talked with mommy and daddy for a long time about what to expect for the next couple of days.

They planned to stop PGE, all-together, in the morning and observe me in the ICU to see how well I did on my own. They watched how well my heart did at getting blood to my lungs and, as the evening wore on, I was doing better. I was doing good enough to use the smallest dose of PGE before bed. The only real problem now was my racing lungs!

The procedure went so well that, with the duct still open from PGE, my lungs were getting too much blood! It made me breathe really fast all night long. Even so, with the lower medicine dose, my eyes became less puffy, and I finally got another chance to look at the world.

I was pretty groggy, but I looked on to a very content mommy and daddy. Everyone left with smiles and hope on their faces. We weren't out of the woods, but at least we found a trail that might lead somewhere.

Next time, I'll tell you about spending lots of time cuddling, looking at the world, and failing my first test.

Tuesday, March 30, 2010

I am the Wind, and I have a Broken Heart

My name is Marriah and I was born with a broken heart. I'm only one day old and I've already become daddy's lil' girl, and I got to fly in an airplane!

(Stay tuned to a picture of me)

Mommy gave birth to me after an uneventful, term pregnancy. I was born at about 8:00pm on a windy day and after daddy cut the umbilical chord I got to cuddle with mommy for a while. That night, I cuddled and cried with mommy and daddy, but mostly, I slept - like a new baby should. The next day, my first full day of life, it turns out, could have been my last.

(Stay tuned to another picture of me)

The next day seemed like any other first full day, but as the day wore into the afternoon, my condition had been worsening. Neither mommy, daddy, nor any of the other nurses knew I had been born with a broken heart. In a moment of serendipity, the pediatric doctor happened to be visiting the hospital.

The pediatrician stopped by, and noticed that I didn't look as flush as a new baby should. She examined my fingers and lips and toes and saw that they were slowly turning blue; a worrying sign that I wasn't getting enough oxygen into my blood stream. My family later learned I had life threatening defects in my heart. We later learned that I had these congenital heart defects:

The pediatrician was very smart and used a medicine they call "PGE," which saved my life. Had she not intervened, I may have only lived for a few more hours, which would have made mommy and daddy very sad. PGE makes the heart work much like it did when I was in the womb. I was stable, but critical; most importantly, I was ready to travel.

Mommy and daddy were beside themselves with worry. The medicine was keeping me stable, but it would only be useful for a couple of weeks; we needed to get some expert help, quickly! Even with all their fears, mommy and daddy were amazing. Mommy and I got into an ambulance with nothing more than the clothes we put on that morning. The ambulance took us to the airport where a medical flight was waiting to take us to Seattle. The flight was bumpy, but the pilots made the landing feel soft and smooth. Lastly, we rode another ambulance to Children's Hospital.

Back at home, Daddy could not contain his tears for my well being. But, even through teary vision and fits of worry, he packed bags for mommy and himself. He made arrangements for my home, and my doggy, both of which I haven't seen yet! Daddy didn't know what to expect, and bravely drove on towards uncertainty, doubt, fear, and worry. Daddy even gave up all of his poker winnings, from that month, so he could have cash for necessities while visiting Children's Hospital, in Seattle.

Grandma and grandpa, mommy's parents, came over too. I was placed in the Neonatal Intensive Care Unit where they gave me an ecochardiogram, which is a fancy word for an ultrasound of the heart. The doctors and nurses connected me up to all sorts of tubes and wires. With all the lights, wires and tubes, I looked like how I imagine a baby Borg would! Since I'm a newborn baby, and everyone else were adults, I found that resistance was futile, and that I was going to be assimilated, dispite my most vocal refusals. Eventually, I settled into my new bed at Children's where mommy and daddy met with the doctor, a neonatal cardiologist, who was able to explain what went wrong.

Thanks to a little luck, a lot of medical talent, and a seemingly never-ending amount of faith, I made it through the night alright. Although, the PGE makes me feel like I have the worst flue and I'm still very cranky, at almost everyone, for assimilating me into the Borg.

Coming up, I'll tell you about my second day. A day of pokes, prods, exams, and baloons (but not the kind you think); all while feeling miserable all the time...