Wednesday, June 25, 2008
This was one of our last days in the Hospital she's blowing kisses and saying "Bye Bye!" To all the wonderful people she met there!
Here's Noel and her cousin Kristen, She's so glad she has friends so play with now!!
Noel, asleep in her high chair... eating is tough work!Noel and her daddy, she loves him so much!!
Here is Noel and her very special friend Faith. These two were neighbors at the Hospital and now the two of them share a very unique bond! ...Tubes!!!
We were first blessed with our little angel on November 17, 2006. Noel Marie Way came into this world without a sound, just an undeniable peace and willful soul. She was delivered through C-section at St. Mary’s Hospital in Grand Junction to say the least this was not how we had planed nor how the books said things were going to happen, everything changed in an instant. Noel was born with an almost complete lack of muscle strength, her doctors told us she was “floppy” that was all they knew. Due to her almost complete lack of muscle strength she was barley able to breath on her own. After two days in the Neonatal Intensive Care Unit or NICU of St. Mary’s and a multitude of tests it was decided that the best thing to do was to fly her to Denver to the Children’s Hospital so that hopefully there they would have some answers for us. That was the beginning of a very hard journey for the three of us.
Noel then spent the next two weeks in the NICU of Children’s and after an array of genetic, metabolic, and every other kind of test that I couldn’t even try to pronounce we were still no closer to any answer than we were when we had first sauntered down the long uncertain halls of the hospital. After that two weeks Noel was finally sent home back to Grand Junction on oxygen and a temporary feeding tube, however it was advised to Scott and I that she may need a more permanent feeding tube and a muscle biopsy one day. Since both of those involved surgery and deep down in our hearts we thought nothing was really wrong, that it was just a rough delivery, those two things were the last two things we wanted to ever have to think of. Within a week of her being at home she was off of the temporary feeding tube and needed minimal oxygen, things we starting to look the way we had always thought they would go in the first place. However, having a mother’s intuition I always knew there was something else inevitably wrong.
Days passed then weeks and soon a few months had gone by and my intuition proved me right; Noel ended up enduring both of the surgeries we had dreaded her having. So during April of 2007 she received a Gastric feeding tube, G-tube, and underwent a muscle biopsy. Then in May of that same year my intuition came creeping upon me again and again I was proven right. Her biopsy results came back with the diagnosis of Congenital Muscular Dystrophy. Muscular Dystrophy is the degenerative wasting away of the body’s muscle tissue; the diagnosis of a five month old baby to have this condition is almost unheard of. With that diagnosis our hopes of everything one day becoming “normal” were shattered. That day our life changed…again, this time it was forever. Suddenly, new words came into our vocabulary, words like wheelchair, “special needs”, and more surgeries.
In time we came to terms with the reality that our lives were going to be different than we had planned. After months of assorted therapies, doctor’s visits, and hospitalizations we had finally gotten to the point where we had become accustomed to our version of normal. Little did we know things were about to change yet again…again. We had planned to attend the annual Muscular Dystrophy walk in Denver so we were staying with family when I realized that Noel was in respiratory distress due to the high altitude and I knew she needed oxygen. As we left for the hospital I started making an overnight bag of shampoo, toothbrushes, and a change of clothes my mom asked me “ what are you doing” I responded with “ trust me mom, I have done this a time or two” when you have a special needs child it is never just a short trip at the hospital. On January 16 2008 we drove down to the Children’s Hospital emergency room with the thought that we may have to stay a night, little did I know this would be the longest hospital stay we had endured. Noel turned out to have RSV, which is a respiratory virus common in many newborns and young babies. It is a virus hard to fight for “normal” kids but can be life threatening for kids with weakened immune systems, like Noel.
This trip to the emergency room resulted in six weeks in the Pediatric Intensive Care Unit where Noel spent five of those weeks intubated, which meant she had a tube down her throat to help her breath. Before they first intubated her the doctors had made it very clear to us that once she was intubated it would be extremely hard to ever take the tube out. Because of her weak muscles her body had always worked so hard to get oxygen in the first place that once her body was reliant on the machine it was almost impossible for her to breathe without it. That was when we heard another new word added in to our ever growing vocabulary of medical terms, tracheotomy. So after five weeks and several attempts to take her off of the breathing machine the word we had learned became not just a word but another decision we were going to have to make. Her surgery was scheduled only hours after we had made the decision to go ahead with the tracheotomy and our life with a trach-vented baby began. The following two months in the hospital was spent in learning the ins and outs of trach care, how to operate a ventilator, and even how to resuscitate our own daughter. The three months we spent in the hospital seemed like three years at times but along the way our family grew and we were blessed to meet new families struggling with the same obstacles as us.
On April 7 2008 Noel was released from the hospital to finally come home. However, we are not able to go home to our home in Grand Junction. Due to the 24 hour care required for Noel and the lack of available home nursing our only option was to stay in Denver with family that could help in the everyday routines of trach-vented life. As things stand now we still do not know when we will be able to come home or how we would even manage to get there as Noel and her equipment just won’t fit into my two door Honda Civic. Scott and I are forced to live apart, his job is in Grand Junction and Noel requires more care than is currently available there. Pieces of our hearts are still left, and will always be, in Grand Junction and the hope we have to be able to finally return home some day.