Tuesday, April 26, 2011

Part Two:

March of 2009 began a year of miracles, blessings and favor in both our lives; in spite of all the medical complications. For me personally I found forgiveness for the mistakes I'd made, the Lord healed my spirit from a very broken relationship, He restored my Faith in Him and He gave me new Hope that the life He had planned for me was a life of abundance. Even though I was still walking the same journey of caring for a daughter with special needs I had a renewed perspective that somehow there was a reason in everything. Noel spent the month of March in the Hospital because her stomach was not working. After a few weeks of no progress in getting her stomach to take food, the decision was made to put her on TPN (I.V. Nutrition), she went into surgery to get central line, it's a catheter that runs through a major artery and goes into the heart. I sat in a waiting room as the minutes turned to hours, knowing that it should have only taken 45 min to put the catheter in, I knew something was wrong. This type of central line is commonly placed through the chest into the subclavian veins; the problem was Noel's subclavian veins weren't in the right place. So in the process the surgeon accidently punctured her lung, they had to place chest tubes immediately to fix the problem. He ended up placing the central line into her leg, which wasn't ideal but it was usable. Noel had to have the chest tubes, which are excruciatingly painful, in for the next two weeks until her lungs healed.

Noel was discharged from the hospital still using the ventilator 24 hours a day and now being hooked to a continuous IV that ran 22 hours a day. We went to our new Home; my parents' house in Black Hawk. This started life as a single mom of an extremely complex medically fragile daughter. Just to get her TPN ready would take 45 min each day; I had to use needles, viles, syringes, I even had to learn how to draw Noel's blood; all things a medical professional with years of training should be doing and not just a regular Mom. My life was consumed with caring for Noel; I had very little time for anything else. Noel was making great progress physically and was even able to take a few steps with her walker. I did somehow find the time to check into the website Christian Café, which is an online dating website for Christian singles. I had first heard of Christian Café from a very dear neighbor in Grand Junction, she found her husband on this site, so I thought I would give it a shot and see what might happen. I knew in my heart what I desired and made my requests known to God; His plan not mine. I looked at two profiles and the second one happened to be an amazing man who had full custody of his two children, he was also a certified EMT. He checked off two major boxes on my list: someone who loves kids and someone who could handle all of Noel's complex medical care. Over the next few months I got to know Dustin Beauvais; he is the man God always intended for me to be with. We wrote messages back and forth and would chat from time to time. It was something for me to look forward to amidst the endless Hospital admissions and constant medical care. It made me so happy just to know that God had a plan for my life one way or another. Noel continued to struggle with her eating difficulties and because she was severely anemic (low iron) she had to have two blood transfusions to try and build up the iron in her blood.
On June 6th 2009 Dustin and I planned to meet for the first time for a dinner date. We met at a restaurant in down town Denver. I was so nervous and so insecure about how things might go, all that changed when he walked in and saw me for the first time. As we sat down at the table he said, "Wow you're a really gorgeous women." All my insecurities melted right away. We proceeded to have the best first date ever; a walk under the lights in down town allowed us plenty of talking time to really get to know each other. With laughter, lite hearts, and sincere spirits the peace and certainty I felt was from God no doubt. That night we both went home knowing that we had just met "The One;" God's chosen one. I was as honest as I could be with Dustin about Noel and what life involved with her; he wasn't scared a bit. Dustin meet Noel about a week later, we met for lunch. I pulled up, he proceeded to watch me pile on Noel's ventilator, her suction bag, her oxygen bottle, her bag of TPN, her feeding pump and then pick her up to walk 10 feet into the restaurant; I remember I kept apologize for how dramatic it was just to get my little girl out of the car to eat lunch. If I thought anything would scare him off this would be the point. But again Dustin wasn't scared, he told me later the first time he saw Noel that God told him not to worry that He had her in His hands. Noel and I met Lily and Landen, Dustin's kids, the next weekend. It was love at first sight; I knew right away God had given me what it would take to be there Mom too. The rest of the summer was spent hanging out as a new forming family. Noel had a few more Hospital visits and she continued to struggle with eating; Dustin was learning very quickly what life was like with a "special" little girl.
In August of 2009 we went to Resurrection Christian Fellowship for the first time. I told Dustin right away that this church felt like Home. At one point during the service I leaned over to him and said, "I feel like this is the kind of Church that would actually pray for Noel." I had taken her to a few different churches and people would look at her with a sad kind of look but no one ever offered to pray for her. Towards the end of the service I had to take Noel out early so we went and sat in the visitor's center of the church, we were immediately approached by a pastor who asked if she could pray for us! That's when I knew we had found our church Home. A few weeks later I was approached again by a woman in the hall who asked if she could pray for Noel, again I rejoiced in what God was doing. I didn't think too much of the prayer until later that night. Noel was still on TPN 12 hours a day at the time, that night we went home and Noel's central line broke. This wasn't the first time it happened, since the line was in her leg we had to make many emergency room visits to get her line repaired. That night I had had enough I didn't want to drive an hour and a half to sit in the emergency room for another 8 hours to get her line fixed. So instead I called her Doctor. At this point she was taking enough food into her stomach to survive, her stomach wasn't ideal but it was working enough to get by. After talking with the doctor he decided that we could stop Noel's TPN and take the central line out and see how she did. I was rejoicing in the Miracle God had done, I hadn't even prayed for her to be healed of the line and yet God did it. Sometimes in our lives God wants to heal things that we don't even realize can be healed!

In August Dustin proposed to me and Noel, he asked me to be His wife and Noel to be his daughter. We were married on October 18th 2009. We had such a blessed wedding; better than I could have imagined. Our marriage didn't start out like most, ours started out like we had a daughter with special needs; first thing the next morning we got a call from Noel's nurse that she was in the ambulance and they were about to take her to the Hospital; without me. We drove as fast as we could to get there before they took her, she had never been in an ambulance alone, let alone in the hospital without me and I wasn't ready for this to be the day. She had been at home with her nurse when her trach clogged; which means she couldn't breathe, her nurse did what she could but knew immediately she needed some back up help. I can't even count the number of times Noel has turned blue and I have had to resuscitate her and change out her trach, I can usually get her stabilized myself but there have been a handful of times I've had to call 911 for help. Noel was scared when I got to the ambulance but after changing her trach and having her mommy there she looked better quickly. She was able to come home from the hospital that same day.

We learned early on the only way we could make it thorough was together; with answered prayers Dustin and I became a full fledge team. Through the learning of medical care and the balance of life, Dustin and I became and continue to become closer than I ever knew was possible. Noel now has a family and another daddy that loves her like his own; he treats her like a princess and loves her with all his heart. And I have a family; I am the mother of three wonderfully amazing children. I hope in reading Noel's history and my Testimony that you can see God is a God of second chances, that we are never too far gone for Him to forgive us and change our lives. I also hope you see that no matter how dark the situation, how overwhelming the trial seems; there is a reason. Noel is fearfully and wonderfully made, she has a purpose and God has a plan for her life, she is an amazing blessing and I pray that through this blog you will all get the opportunity to get to know this Special, Special gift and this very Special Girl.

Wednesday, April 20, 2011

Noel’s History…

I know we have some new readers to our blog so 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, Scott 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.

Wednesday, April 13, 2011

A Plan...

Our appointment went well today. I could feel the presence of the Lord there, especially since we only had to wait for 10 minutes to see the doctor! The plan as of now is to get Noel to the Nationwide Children's Hospital in Columbus, Ohio. Unfortunately, the G.I. Clinic there is booked for three months out, so we will start the process of getting her appointment there. The reason she will be going to this hospital is that they specialize in motility disorders, specifically Noel's diagnosis: Chronic Intestinal Pseudo-obstruction (FYI if you click on the blue words it will take you to a link that defines them). Once she's there she will undergo lots of tests and procedures, we will see if she is a candidate for an gastric pacemaker (much like a heart pacemaker, but it stimulates the intestines). Worst case scenario is that she's not a candidate and we have to start to consider even tougher decisions like a possible bowel transplant. That will be a very hard decision and we would cross that bridge when we came to it. The doctor gave us some medicine to help Noel's nausea and to help with the pain associated with her stomach. Sometime next week Noel will undergo a scan of her gallbladder, we need to rule it out having any involvement in her stomach problems. Dr. K said today best case scenario we find out her gallbladder is the problem then she would undergo surgery to have it removed and her problems would be solved. The doctor is not very hopeful that her gallbladder is the problem; we just need to rule it out. However, her underlying condition, Myotubular Myopathy (her form of muscular dystrophy) usually has an effect on the gallbladder so there is chance that it's the problem. We should have those answers next week. Other than the "normal" (completely not normal, extremely hard, overwhelming job of taking care of Noel) we will prepare to somehow get a medically fragile child 1,116 miles, with all of her machines and equipment to be seen by specialists in Ohio. The thought of just taking her to church some nights is daunting so we'll need God's provision and strength, I believe though that God will go beyond, beyond what I could ever imagine is possible. Thank you so much for all your prayers and for all the wonderful friends who've been such a blessing! I know many people want to know how they can help and I'm trying to get a list together of things that would be helpful so anyone who wants to help can. I'm so blessed by an amazing church family who has really shown their love to us! I love you all so much! Thank you too to our wonderful families who support and love is amazing and thank you to so many special friends who make this hard journey more bearable. Tina
Today is the day, it's time for a plan! We can not settle for anything less! We have an appointment this morning at Children's Hospital with Noel's G.I. doctor and it's time they do more for Noel. She's been on TPN (IV nutrition) for two weeks, the first week or so was great, she felt great and looked amazing. She was getting very small amounts of food through her stomach (Less than an ounce an hour) and she was tolerating it well. Unfortunately things changed on Sunday and by Monday morning she looked just as bad as she always does. On Monday she hadn't had any food in her stomach for a least 24 hours and she was still nauseous, dry heaving and in so much pain. It's moments like that when I realize that nothings changed; that in four and a half years we are no closer to fixing the problem with her stomach than when we started; we've run out of "Band Aid's" and it's time for some real solutions. Please pray with me today for peace in Noel's body, pray for a Plan to keep that peace in her body, pray that the Lord would go before us this morning and prepare the way at the doctor's office, pray for Dr. K that he would make appropriate decisions and please pray for strength for our family to get through another day. I don't know what today will bring but I'm ready! I have an overnight bag packed for what may lie ahead and I'm prepared to fight to get Noel anything and everything that she needs!