Noel's Story Part One

Welcome to our new blog! As a special needs mama I know I have always found hope in knowing that I'm not alone on this hard medical complex journey I have been on with Noel. I am writing these blog posts in the hopes that someone else can say me too; I know what she's feeling because I've felt that. Or even I'm not there yet but I hope to be there one day. Mama if you're reading this I want you to know I see you and I acknowledge this bittersweet journey that you are on, and I want you to know you are not alone. If we're not friends yet on IG come and tell me your story @TinaB_DisabilityInclusionEd.

I wanted to give you a brief (as brief as I can) History of Noel. I found out I was pregnant with Noel in March of 2006 her dad, and I were dating and marriage was talked about but never happened. The relationship was very hard and I lived in constant shame and guilt; I was a Christian girl and had many plans for my life… having a baby and being unmarried was not one of them:

Part One:

I was first blessed with my 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, everything changed in an instant. Noel was born with an almost complete lack of muscle strength, her doctors said she was "floppy" that was all they knew. Due to lack of muscle strength she was barely able to breathe on her own. After two days in the NICU of St. Mary's and a multitude of tests it was decided that the best thing to do was to fly her flight-for-life to Denver to the Children's Hospital so that hopefully there they would have some answers. That was the beginning of a very hard journey.
Noel then spent the next two weeks in the NICU of Children's Hospital and after an array of genetic, metabolic, and every other kind of test that I couldn't even try to pronounce they were still no closer to any answers. After that two weeks Noel was finally sent home back to Grand Junction on oxygen and a temporary feeding tube. Having a mother's intuition I always knew there was something else inevitably wrong.

 

In April of 2007, at four months old Noel received a Gastric feeding tube (G-tube) and underwent a muscle biopsy. In May of 2007 her muscle 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 my hope of everything one day becoming "normal" shattered. That day my life changed forever. Suddenly, new words came into my vocabulary, words like wheelchair, "special needs", and medically fragile.
The month of May also brought other changes, now that Noel had a feeding tube she was finally receiving more food into her stomach than she'd had in the past; this is when her stomach problems started. It was within weeks of getting home that the projectile vomiting started, almost every time she ate (through her g-tube, she stopped eating by mouth at this time) she would throw up at least half of her food. This lasted for 6 months until she underwent another surgery called a nissen; basically they wrapped the top of her stomach making what is usually a two-way value into a one way valve where food can go down but it can't come back up. So Noel stopped throwing up, but she didn't stop having the urge to. So really the surgery didn't fix the problem it's just put a band aid over it. For months Noel would wretch and dry heave with almost every feed. We tried many formulas and medicines without much help.

 

In January of 2008 a normal trip to Denver brought us into the Children's Hospital emergency room; I 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 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 I heard another new word, tracheotomy. So after five weeks and several attempts to take her off of the breathing machine the word I had learned became not just a word but another reality. Her surgery was scheduled only hours after the decision was made; life with a trach-vented baby began. The following months in the hospital were spent learning the ins and outs of trach care, how to operate a ventilator (Life Support), and even how to resuscitate my own daughter.

 

On April 7 2008 Noel was released from the hospital to finally come home. However, we were 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. At this point Noel used the ventilator 24 hours a day, every breath was given to her by the machine. Life was hard. Thanks to the help of my mom and family I was able to come to terms with this new way of life.

 

In October of 2008 Noel and I returned "home" to Grand Junction. The situation between Scott and I was already unhealthy and with all the added stress of Noel's new medical condition, and the realization on my part of the sinful life I was living, things started to fall apart even more. By the Grace of God in December of 2008 the condemnation, shame and guilt I had been carry from the whole situation finally turned into conviction. Conviction from the Lord is so amazing; it's wrapped with Grace, Truth, Love and Hope. I had no idea what the future held for Noel and I, all I knew was that God must have something more in store than this life I had been living. All I could do was trust God fully; I had to constantly listen to worship music, especially when I slept, if I didn't I would try to figure out all the answers, all the how's of how my life could ever change and ever be different.

 

The first part of 2009 God brought Noel and I back to Children's Hospital, she was sick again. We were there on the exact same day and in the exact same room as we were a year before. God asked me, "Tina is this where you want to be next year?" My answer was NO! And that's when things ended between Scott and I. I went "Home" to Grand Junction and with my dad's help I packed all my stuff form my "Home," I've never been back since. At the same time Scott decided to move to Alaska he needed a fresh start and there were better employment opportunities for him there. Noel remained in the Hospital for the next month. This started a new Chapter of my life, the Chapter tilted: Forgiveness, Healing, Restoration and Hope.