Friday, December 23, 2011

Trip Re-Cap and The Answers…

Wow what a whirlwind three days! We were blessed beyond belief; we walked in peace and Joy! Even though we walked in peace things were hard; imagine taking a child in a wheelchair with four medical machines, liquid medicine and a feeding bag through modern day airport security that in and of itself is a feet to accomplish. The airport was very great at accommodating our needs. Once we arrived at our hotel in Boston we realized we left a very important cord in a bag on the airplane; we almost had to head to the hospital early. But thankfully in less than a half hour Dustin was on the phone with someone who went onto the airplane found the cord and brought it straight to us! We arrived at Children's the next day for Noel's appointment. I have to say there was a strange peace and familiarness about walking into a Children's Hospital. I felt in my "world", like I can do this; it's crazy I feel more comfortable in a hospital than an airport. We meet with the G.I doctor, Dr.R, he was amazing! He explained so much to us, more than I've ever heard before. He told us that the chances were high that there would be nothing physically wrong with her stomach and intestines but she could be getting the wrong sensations sent to her brain. He said the test he was going to preform would tell us exactly what was happening in her stomach and intestines. She was admitted to the ICU for the night and the procedure was scheduled for 1:00 the next day. Around 12:00 the next day everything was going as planned until the anesthesiologist wanted to see Noel's records from Denver; giving anesthesia to people with Muscular dystrophy is very risky and she is at risk for complications. I appreciated the cautiousness of the doctor, but in getting the records it delayed her going into the O.R. 4 hours to which we were told we wouldn't be able to make our flight out the next day. I wasn't surprised; in booking our flight home I never thought we'd actually be heading home on Wednesday-it was just wishful thinking! I was on the phone in minutes talking to a dear friend about helping change our flight. After her procedure the doctor assured us the testing would be complete in time to catch our flight. We had to trust the Lord that either way it went He would be in it.

In the O.R. Dr.R put two tubes into Noel: one into the hole in her stomach where her g-tube goes, the other went up the other end into her colon. At the ends on the tubes there were 8 sensors each for a total of 16. The sensors were then hooked up to a computer and each sensor was able to measure the pressure and electrical impulses of her intestines. Technology is so amazing! The next day, Wednesday, they began the testing. They gave Noel food and other medications to monitor what her stomach was doing. After a 6 hour test the doctor came back to tell us the preliminary results; it will be weeks before we have the actual results. Noel's stomach and intestines work! Mechanically everything is doing what it is supposed to. The problem is her brain. She is getting the wrong sensations sent to the brain which tells her that she's in pain. These are the best results we could have found. She does not need a transplant, she doesn't need surgery; what she does need is medicine. Up until now we've been treating her stomach with medicine to help it function correctly. But what we really need is to give her medicine to help her brain; I don't know yet what she'll be on but Dr.R talked about mild doses of antidepressants. She needs more serotonin in her stomach; ironic cause serotonin is happiness-joy! She needs more Joy!! (Don't we all?) This will be a long process of blocking the pain sensation from the brain and then re-teaching her that the sensations she feels when eating are normal and not painful. She can be healed!

This trip was amazing I could feel God's fingerprints over every aspect. I was beyond prepared for every possible what if; a friend put it this way: It's like I had to pack a separate bag for every possible what if, and since I didn't have to open all the "What if bags," now what do I do with those bags? In five years of this journey this is the only time things have ever gone according to plan. Even as we drove to the airport I still wouldn't let myself think we'd actually be home, ready to celebrate Christmas as a family. However, I do have to say that even if I would have had to use one, two or even all of those "what if Bags" I would have still felt God's fingerprints over everything. God is not just there when everything is going smooth, good, according to plan. He is there is the hard times, the unexpected, the worst case scenarios. God is good all the time. I am so blessed beyond belief; I went to Boston with Hope and came back with an answer-JOY!!

Sunday, December 18, 2011

Feeling Blessed in "Beantown"

Blessed is the major feeling we have tonight. Thank you for the prayers, we are feeling them. So far the only slight complication is a very important cord, the one that runs Noel's oxygen machine, got left on the plane-it should be here shortly though. We had a smooth plan ride, tons of help from all the crew and airport staff. We are getting ready for bed to prepare for Noel's appointment tomorrow at 1:00. After her appointment she'll be admitted into the ICU at Boston Children's. I am very hopeful our trip will continue on this tone of peace and Hope. Thanks again for the prayers :)
Love,
Tina

Saturday, December 17, 2011

Leaving on the Wings of Hope

Our Bags are packed, the house is getting quite and I'm getting slightly nervous… I know all things work together for good for those who love the Lord, but I would be lying if I didn't say I'm a little scared. I have to live by the quote, "Do it afraid." This trip has been compared to getting out of the boat and walking on water. I know because God called me to get out of the boat and walk, I will no doubt walk on the water; I just don't know what it will feel like. It's been fun to see God show up big time in every area of this trip. We have been so blessed by our amazing friends and our church family with an overwhelming outpouring of love, prayers and financial help. Thank you to each and every one of you; without you we wouldn't be going! So tonight as I fall asleep, I give this trip to God; as we take Noel on a Journey 1,700 miles across the United States my heart is filled with HOPE. I will always have hope in the Lord. So for now good night and God Bless,

Love,

Tina

Thursday, December 1, 2011

Boston Bound

On December 18th in the wee hours of the morning Dustin and I will pack up Noel, her numerous supplies and medical equipment, headed to Denver to board a plan that is Boston bound. As you've heard me make reference to many times that having a child with special needs is like being in Holland when everyone else is an Italy; this trip will be like that. You see we're heading to Boston by way of Holland. Taking a trip to Boston from Italy doesn't sound like much; you go to the airport get your tickets, board the plan fly 4 and half ours then land in Boston; pretty straight forward. However when you're planning a trip leaving form Holland it's much, much different. There's about 15 more stops along the way and much more travel interruptions. We are heading to Boston so Noel can receive much needed intestinal testing that is not offered here in Colorado. When we leave Sunday morning we'll be leaving with our five year old little girl, her ventilator, oxygen, suction machine, feeding pump, emergency supplies, diaper bag, toys and all the normal luggage needed when taking a trip. We will then have to unload at the airport, make it through security, to the gate, to then load everything listed, except the luggage, onto the plane to have next to us incase anything is needed during the flight. We will then provide care to Noel for the next 4 and half hours not knowing how the altitude will affect her breathing or her muscles. Once our plan arrives in Boston we have to get through the airport with our entourage of medical equipment and find whatever form of transportation I figure out that can get us to our Hotel. Once at the Hotel after a full day traveling with our sweet girl, we must unload all her equipment and set up a mini hospital for the night. The next day, Monday, we will transport her to Boston Children's Hospital where she will be admitted to the ICU unit to prepare for her procedure. The next morning she will go into surgery where two sensors will be placed inside her intestines for monitoring. Theses sensors will stay in place for 24 hours, during that time they will give Noel different foods and medication and record how her stomach works. The plan is for her to then be discharged on Wednesday afternoon so we can fly back home. The results will help us know what the next step is for Noel, if there's some kind of surgery they can do, if they have a medication we haven't yet tried or worst of all that there's nothing they can do for her. This whole trip will take place the week before Christmas and our other two children will have to stay home without us. As you can tell we will need lots of prayers as we set out on this leg of the journey. We will be calling on God's strength every step we take. Our hope is we will be able to share the love of Jesus to all we meet as we travel during His season. Noel likes to be called, "I've got the Joy," so I like to say we're bringing Joy to Boston for Christmas. The other thing I can't help but wonder is why do we have to go now? I've been anticipating this trip for 3 years; and when I got the call saying it was the week before Christmas I couldn't help but think, well her name is Noel… Maybe this is her Season, her chance to get the best Christmas present ever… to be HEALED!! Thanks for loving us and supporting, this will surely be a time of big testing which will bring forth big testimony, and without a doubt there will be big blessing…

Love,

Tina

Wednesday, August 17, 2011

Blessed Are Those Who Mourn


I began a season of mourning for Noel in March of this year. I mean deep down gut wrenching mourning. It began after another sleepless night because of the severe pain Noel was experiencing. Her stomach was aching, she was nauseous and she couldn't sleep. So many of her nights are this way; simply put her stomach doesn't work and the doctors don't know why. I went to Google because that's where I have earned my "nursing license" to be able to care for Noel; when I don't know or understand something I Google it. Of course it was about one in the morning; isn't that the best time to learn? I started researching Myotubular Myopathy. Up until October of 2010 I had always been told that Noel's diagnosis was Congenital Muscular Dystrophy. At Noel's October muscle Clinic appointment a new Doctor saw her and said that she looked like she had the characteristics of Myotubular Myopathy. I stored that away in my brain but didn't think too much about it until that night in March. I thought maybe she does have Myotubular Myopathy and maybe that will explain why her stomach doesn't work. So I started researching; first I found a support group for kids with this condition, as I looked at pictures of two little boys I was convinced, they could have been brother and sister with how similar they looked. So I dug deeper and instead of finding a link between this disease and her stomach, I found that these kids with this disease don't live very long. Every story I could find or blog I went to ended very sadly; most the kiddos didn't live past 6 or 7. What? Could that really be? I always knew Noel's life might be shorter than most… but only to live until she's 6 or 7? My other daughter Lily would be turning 6 in April… That just wasn't enough time. At this point Noel's health wasn't very good; she was struggling to gain weight, to eat through her stomach, she wasn't constantly in discomfort and pain, she slept on a ventilator. I could imagine her being one of the kids who only made it to 6 or 7. I began to cry, to sob, to ach for my little girl. When I couldn't read anymore I crawled into the bed next to her and I mourned. I mourned the unknown, the possible, the "what if's." But that was only the beginning of the season. I didn't wake up in the morning feeling better, I woke up in the morning still mourning. I didn't know what to do with this feeling? I felt as though not many people would understand. I thought people would think I was supposed to believe in healing, that she will be restored, that she will BE HEALED. And I believe it to my core that Noel will be healed but what if it doesn't happen until she's with Jesus? It's something I understand but I was worried no one else would. I walked around heavy, full of emotion; I would cry and weep in the shower when I was alone. I would hold Noel so close, many nights I would go in her room crawl in her bed hold her and weep. Very slowly this new feeling brought me to a new place of vulnerability. Slowly I opened up to friends; I let them into what I was carrying. I invited them into the deepest places of my mother's heart; I allowed them to see what life was like for me. And slowly as I opened up during my season of mourning I began to receive comfort. I started to get help. Help with things as simple as help with laundry, as wonderful as a home cooked meal brought to us, and as deep as a prayer circle crying out for me, for Noel and for my family. And since then it's continued; the comfort has continued. During this last hospitalization with Noel I went to such a deep place with God. I was lying next to Noel in her hospital bed; she had looked horrible that day as sick as I've ever seen her. I awoke that night to the terrible sounds of her lungs. In those quite moments alone, when there was no nurse or doctor in the room, when it was just Noel, me and God I gave her to Him. I asked Him is this her time? Is she going to make it until the morning? Is this the day I leave the hospital without her? And in the depths of that place, in the midst of the deepest mourning I've ever experienced I was comforted. The presence of the Lord in that moment was so thick. I knew that He was there to comfort me, that no matter what the morning brought He would be there with me. That if I left the hospital without Noel I wouldn't leave alone, I would leave being carried in His arms. As you know that wasn't the morning I had to leave Noel, I know that the time may come but I know that no matter when that time is I will be comforted because the Bible says in Matthew 5:4 "Blessed are those who mourn, for they will be comforted." I also know because I walk every day carried by that comfort.


Tina


Here's a link to a great message preached on this verse: Blessed are those who Mourn


Wednesday, August 10, 2011

A Place to Call Home!


Earlier this year I heard an awesome sermon (click here to listen) about how we overcome by the blood of the Lamb and the Words of our testimony. The words of our testimony? Some may wonder why it's important to share what God's done in our lives. I knew it was important to share with you the words of my "big" testimony because I knew it was important to let people know how far God has brought me. That it wasn't myself that got me out of a hopeless life; but it was God's divine grace on my life that He brought me out and blessed my life abundantly beyond anything I could even ask, think, or imagine. But the more I think about it it's just as important to share everything God's doing in our lives, because it's all "BIG." So I wanted to share with you about the Blessing of our new Home! To start off I want to tell you how we found the house we are in now. We had been living in Fort Collins in a small three bedroom apartment. We came to a point and realized Noel needed a bigger place for her, all her equipment and her nurses. Since it's not easy to take Noel out-and-about we wanted a nice place for her to be Home. I looked day and night, craigslist, rental sites, anywhere I could think of to find a home. I got discouraged when I could never find the "right" place. Then one day I was picking up the kids from school, which also happens to be our church. I felt the Lord tell me to go inside and look at the bulletin board. It was one of those times when I wasn't sure if it was me or God so I kind of dismissed the thought. When I got to their school I had to go inside and get them, usually there is a pick up system but that day it was closed. So as I was walking by the bulletin board I remembered the thought I had to I look at the bulletin board and to my surprise I found the exact house I had been looking for! It was the price, number of bedrooms and the location we had been looking for! It was a true blessing and answer to prayer.


Now fast forward a year and a half; we found ourselves in the position of needing to move to provide a better Home for Noel. Again this time we needed a bigger house, (it's crazy the amount of "stuff" one 4 year old medically complex kiddo has; our house is a small hospital.) We also needed to be closer to city convenience; stores, pharmacy's, better schools and closer to therapy. So the search began, again. We knew our lease would be up in March so I started looking mid-December. In the beginning we were looking for a house that had a shop attached so the Dustin could work from home. We found a few options, all with house that weren't ideal but I was willing to settle. None of the houses ended up working out so again I got to a place of discouragement and I decided I had to give the House to God. At the end of May Dustin got a job that he had to have a shop to be able to complete it. He went out one day looked at a few places, came home looked on Craigslist and found two amazing options. To say I was a little discouraged would be an understatement. He found two options in one day; he got to pick which one he wanted? I was very happy for him but I was sad to think I'd been looking for months for a home and hadn't even come close to getting two options to pick from. I sat in my pity-party for a while and then decided to give it back to God. July came around and as you all know Noel was in the hospital and really sick. A house was the last thing on my mind; but in the little time I had I checked Craigslist out of habit, you know how that is: check emails, Facebook, craigslist. And again to my surprise I found an awesome house. I emailed the lady and was surprised when she emailed me back and asked me to friend her on Facebook so I could see more pictures of the house. At first I was a little weary to "friend" her but I thought hey I can always delete her if it didn't work out. Well God had bigger plans and He used Facebook. The first message I received from her was that she was praying for our family, she is a nurse and understands what we're going through and her family just wanted their house to be a blessing to another family. Wow, I was so encouraged and surprised when I read those words. At the same time another friend was renting their house and said we could go look at it. We got to take a short break from the Hospital and go look at two houses. I felt the Lord Say, "Tina you get two options and you can pick whichever one you want!" What a kind and loving Daddy to be so gracious to me even after I was selfish. We looked at both houses and realized the one in Greeley would be perfect! There was no settling; it had everything we wanted and more! So it's not just that we're moving to a new house; it's that our Heavenly Father blessed us with a wonderful Home! I hope this encourages you in whatever you're going through. Sometimes the "Weight of the Wait" makes us heavy, discouraged and frustrated; it's when we give the burden back to the Lord and let Him carry it that we can wait in His Peace.


Friday, July 15, 2011

A few Reflections...


Wow what a whirlwind of emotion these past 8 days have been. I have a moment to write while Noel is sleeping soundly in her bed in the Pediatric Intensive Care Unit. It will take awhile to fully write about all the things the Lord has put on my heart during this admission; I still haven't fully processed through everything our family has been through. For me writing is very therapeutic; it helps me put words to all the emotions I've been going through. First and foremost I have to say THANK YOU; thank you to every single one of you. My heart is so grateful for each and everyone of you. I am overwhelmed by the out-poor of support and love that has blanketed us through this rough time. Thank you for taking to the time and prayer for my sweet children, all of them; Noel, Lilly and Landen. Thank you for praying for Dustin and I to keep walking through this together. Thank you for the visits, the phone calls, the cards, the care packages, the encouraging words; we've needed every single one of these things in order to get through and to keep making it through. I'm now almost five years into this journey of raising a medically fragile girl and believe me, it doesn't get any easier. I know the routine I know the "language" to be able to communicate with the doctors; but seeing your child in pain and upset never gets any easier. Not knowing when you're going to leave the hospital and if you'll be leaving with your daughter is a constant test of Faith. Being able to continue with little sleep, sometimes no shower and no privacy is a testament of God's Grace. And to have wonderful people to help bless and care for us is proof of God's Love. The biggest thing I want to say to all of you is; "Don't sweat the small stuff," I know that's so cliche and I'm even trying to hold true to that, but it's so true. Don't let little things steal your perspective or your thoughts. Enjoy life, Christ died so that we could have life to the fullest! Not so we could complain, be frustrated, feel overwhelmed, be discouraged. His Grace is in all things, please let my family and our situation speak that to you. His Grace is sufficient for all of us, NO MATTER WHAT! I love you all so much and I have much more to say but just had to start somewhere. Have a blessed weekend,


Tina

Saturday, May 28, 2011

Noel’s Home


Just a quick update to let you know that Noel's home! She still not back to 100% but she's on her way to being back to herself. The update on our trip to Ohio is that we're still waiting; waiting for the two Hospital's (Children's here in Denver and Nationwide in Ohio) to exchange information and to then fit Noel into their overbooked schedule. I still have no idea as to a time line; I guess it could be anytime between now and August. We are trying to patiently wait on the Lord and what His plan for our summer will be. Other than Noel's recent "cold" she has been doing great on TPN; she gained 3lbs in two months after not gaining any weight in almost two years! It so bittersweet, it's great to see her thriving and doing great on TPN; But I also know that she CAN'T live on TPN the rest of her life. -TPN increases the risk of having liver disease and damage. Infants and young children on TPN are more at risk for liver disease than older children and adults. The organs of infants and younger children are still developing. They are not as capable of handling the burden and strain that TPN puts on them. Children who are on TPN for a long time are also more at risk than those who are on TPN temporarily or for a short time. Some children who require an intestinal transplant may also receive a liver transplant at the same time due to liver disease associated with their use of TPN. Noel gets blood test once a week to monitor how her livers is doing and it's starting to show some elevated numbers which means that the TPN is starting to affect her liver. So while I see her feeling and looking good, I know the same medicine that's helping her thrive right now is also damaging a vital organ in her body. That's why we need so many prayers and so much support right now; it's not if Noel's in the hospital than she sick and when she's not in the hospital she's healthy; Unfortunately she is a very sick little girl who needs something big to change in her body so she can live life to the fullest. I know God can do it and that's where I'm putting my Faith.


Tina

Monday, May 23, 2011

Hospital Update

Noel's in the Hospital; sadly we knew this was coming. Since Noel isn't eating through her stomach and she's getting all of her nutrition through an I.V. (Central Line) in her arm ANYTIME she has a fever…she has to be admitted to the hospital for a minimum of two days. The reason for this is that she could have a blood infection, the central line in her arm is a hot spot for bacteria to grow and if the bacteria gets into her blood stream she could get really sick really fast. This is one of the MAJOR down falls of her living on TPN (I.V. nutrition) and having a central line; 2 years ago when she had a central line we were in and out of the hospital more times than I can count. This is also why we need to get to Ohio sooner than later, so please pray we get there soon. So right now it just looks like Noel has a cold, she's growing a bacteria in her trach called pseudomonas which gives her cold like symptoms: fever, running nose, cough. So far she has been fever free today which is good news! If she remains fever free we could be heading home on Wednesday. Thank you so much to everyone who is helping out with our other two kiddos and thanks to everyone who is praying for us; you all bless us more than you could know.

Tina

Tuesday, May 17, 2011

WELCOME TO HOLLAND




by
Emily Perl Kingsley.




I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......




When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.




After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."




"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."




But there's been a change in the flight plan. They've landed in Holland and there you must stay.




The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.




So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.




It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.




But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."




And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.




But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.












I saw this Uhaul today; it reminded me that yes we're in Holland and that yes Holland is the city of Tulips!

Monday, May 2, 2011

Get Your Head in the Game

I know why God brought sports into my life; He was preparing me. All through High School I played sports, I love playing sports. My favorite part of playing is being a part of a team. I love the amazing unity that takes place on a basketball court when you're down by 4 in the fourth quarter, when everyone digs down a little further and gives a little more in order to win the game together. When you're in the fourth quarter it's hard to remember what the first three quarters were like; all you can see is the end. However, your head can easily be taken out of the game when the opposing Coach calls a last minute time out. Everything stops, your momentum, your focus and your adrenaline. In the few moments of the timeout you have time to think; you may start to think about how far you have to go to win, you may start to think, "If only I'd played better the first quarter we wouldn't be behind by four." You may even start to feel your body and realize how tired you are. This was the plan of the opposing Coach, to get you out of the game, even if it's only for 30 seconds; if you can lose focus for that short of time the game and the Victory can surly be theirs. I feel as though sometimes I'm in the timeout of the fourth quarter. That I'm not "in the game" in the survival mode of living in the hospital; the adrenaline of living minute to minute not knowing what's going to happen next has worn off. I feel like I've been looking around and thinking how far we have to go, wondering how we can make it to the end of the "game." Thinking how hard it's going to be to get to Ohio, how hard it's going to be to find out news of what's wrong with Noel, or the most dreaded news that there's nothing they can do for her. I feel like I've had time to realize how tired I am; I've been playing this game with all I've got for years. I'm worn out. I just want to sit on the bench and have someone else go in for me. Today however God reminded me that I'm not a mediocre athlete I'm a great athlete, even if my focus is lost for a moment, a great athlete knows that the game is not over until the timer buzzes. In a game it's the opposing coach who wants to take the victory from you; in life it's the devil. When you're at a time in your life and you feel like giving up satan's the one who wants you to lose; he wants you to stop, lose focus and momentum, to believe that you can't go on anymore. But God's the one who wants us to keep our focus, to keep going, to win. This morning I heard it this way. "It's not over until God says it's over." I needed to be reminded of that; that a 30 second time out doesn't have to lose the whole game. A great athlete also realizes they can't win the game without the help and support of their teammates. They need each other to make it through to win the game, no game is every won by a single person on the court it's always because the work of team. I feel renewed, refreshed, energized; ready to get back in the game; Blessed by the amazing teammates God has given me and ready to give my all through this quarter until the game is won!


 

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.



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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.



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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!

Tina

Wednesday, March 30, 2011

Overwhelmed

We're home from the Hospital, which is great news but now it's all starting to hit me. I'm pretty overwhelmed today from all that's happened. This morning while taking care of Noel I counted 10 machines in her room all used to keep her alive; everything from a ventilator to I.V. pumps, to suction machines, oxygen and on and on it's a lot to do. In the hospital she had many doctors, nurses, CNA's and respiratory therapist to help care for her, now it's just me while Dustin's at work. I also still have to take care of two other kiddos. Noel's feeling great and it so happy to be home. But I could really use extra pray today just to make it through. God never gives more than we can handle right? Some days are harder than others though. Thanks for checking in and again thanks for the prayers, Tina

Friday, March 25, 2011

Friday

Thank you for all the prayers they are so appreciated! All your prayers helped make today a good day. The doctors made a quick decision (which I didn't think was possible) and decided the best "Plan" is to put Noel on TPN for an extened amount of time. This is good and bad. Good because Noel will finally get full nutrition, Total Parenteral Nutrition (TPN) is a way to feed someone through their veins when they can't get feed through their stomach. This is why she had to get a PICC line today; a PICC line is a semi-permanent I.V. She can come home with the PICC line and it can stay in her arm for up to two months. This means she will be getting TPN at home. She had to go under anesthesia this afternoon while they put the PICC line in. She did awesome and everything went great. So now the bad part; Noel will now be more at risk for getting an infection because of the PICC line. This means that she could get a blood infection very easily, if the PICC line isn't cleaned right or if some bacteria gets into the line she can get really sick really fast. So we still need lot's of continued prayers. She's had a similar PICC line in the past, at one point she was on TPN for 9 months; so none of this will be new to me but it does make an already hard job of taking care of her harder. I'm convinced that her Muscle disease effects her stomach and we'll just have to make progress little by little with trying to get it to work properly. But now at least she'll be gaining weight and getting the nutrition she so desperately needs.

Thursday, March 24, 2011

This Stinks!!

Noel is back in the hospital; she's lost 3 pounds. She has been having a hard time eating, just like always. It's the story of her life. I'm so ready for answers.
Can I just vent for a moment? I know many people see the side of me that's positive and "handles it so well" but for a moment I need to be human, I need to not have it all together. This really sucks! This life is so hard. Every plan I've made in the past four years has been changed. Tonight is just one example, I was suppose to have a Grand Opening for Pampered Chef, something I've been so excited about, so looking forward to, and yes once again plans changed. It use to be easier when the only life that had to be affected by Noel's hospitalization was mine; now so many lives are, we have to find out how to continue to care for our other two kiddos when they're not allowed in the hospital room with Noel. It sucks that her stomach doesn't work, it sucks that she's in and has been in so much pain just to eat! Eating, something we all take for granted... as I'm typing this I'm eating a snack and I don't have to worry about if my body will or won't digest it, Urrgghh!! Don't get me wrong I know that God has a plan and I know His ways are better than mine; I know that somehow this all fit's into His plan. But I also know that He is a big God and it's ok that sometimes I get frustrated and sometimes I don't understand it all and sometimes I don't have it all together. I know it's ok for me to feel these things because He never gets frustrated, He knows it all and He always has it together. I know I'll get through because of Him, not because of me. I know that His grace is sufficient for today for me and I know that it's sufficient for you too. Please continue to pray for us through this time: Pray for answers, SOLUTIONS, grace, healing, strength and quickness for all of us. I'll update more about Noel when I know what the "plan" is. Thanks for letting me vent,
Tina