My Story

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Nathan Lee Barnett...what a beautiful name that is.  It sounds like music to
my  ears!!!  I found out I was carrying Nathan on February 18, scared and excited I was.  Nathan was not a planned pregnancy but some of the best things  in life are not planned.  I had a very normal pregnancy with all the typical things that women go through.  I was at my happiest and I couldn't wait for the baby to get here.  On March 17th I heard the heartbeat for the first time and on March  18th I had my ultrasound done and found out it was a boy...I was so excited not only was I just having a baby but a boy!!!  My husband and I began to look at baby names and he came across the name Nathan and we knew it was perfect but little did we know how perfect it was.  The meaning of the name Nathan is "Gift of God"...and I knew he was a gift of God even before he was born.   At
this point I really didn't have to much longer to go since I didn't find out
I was  expecting until late in the pregnancy(I won't go into that reason).  My due date was July 24 but Nathan decided he wanted to make his appearance on July 17, and I was ready to meet the beautiful baby I had already come to know and love.

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 The First Few Months....

From the moment Nathan was born my life changed...I couldn't love
anything more dearly.  I wanted to spend every moment I could just looking at the miracle of him.  Nathan joined my husband Brian and his mommy Amy at 6:09 pm. by c-section.  He was a healthy boy...7 lbs. 13 oz. and 19 1/2" long.  He scored well on all his tests and was beautiful to look at.  I wanted him in my room all the time so the nurses would take him to the nursery and them bring him right back so I could just hold him..I don't think I slept more that a few hours at a time in the hospital...I didn't want to miss a thing.  Nathan seemed to be doing fine and we were released on Monday July 20...he was jaundiced but other than that things seemed to be fine. Things seemed to be going fine and Nathan and I began to adjust to
each  other.  Never was there a more loved baby, my parents thought the sun rose and set on Nathan.  It was certain he never lacked attention.  I held him as much as I could just marveling at the miracle of him.  Little did I realize what was just around the corner for us...and I thank God I didn't know and was able to enjoy him.  If I would think back I think I could see some signs that there was something wrong but it was my first baby and I just thought he was a little lazy.   Who wouldn't be lazy if they were held all the time?  I didn't really see the changes that began to happen over the course of a few weeks time but looking back I can see things now that I didn't realize then.  First it was the nursing, it always took Nathan a long time to nurse but I though since he was gaining weight things were going fine.  By the end of September he was almost exclusively on formula but he had thrush in his mouth so I attributed his lack of nursing to that.  He began  to pull away more and more and so I had to quit nursing.  I started off with
the bottles that mimic nursing but before to long he couldn't suck on those as well so I had to go with the easiest nipple I could find but once again I
attributed it to laziness...nothing was wrong with my baby.
At his checkups Nathan's doctor seemed to be concerned with his
ability to move and his floppiness so he ordered some blood tests to rule out various things.  They all came back negative so I wasn't concerned.  In October Nathan got a cold and he seemed to be fighting it ok but he couldn't seem to shake it.  I took  him to see the doctor again and he tried antibiotics but it just wouldn't knock it.  On October 19 I took him in again and the doctor and this time he was very concerned over over his lack of mobility so he wanted us to see a Neurologist.   He gave me the number and I set up an appointment for Wednesday October 21.  My mother, Nathan's Nonie, went with me and we were not really to concerned.  We thought we were going to hear something like Nathan is just a little slower than other children and that would be ok.  Little did we know what was just around the corner....

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The Diagnosis....

From the moment we walked into the examination room I was
uncomfortable.  The Neurologist had me undress Nathan and lay him on the
table.  She began to  check his reflexes, talk to him, look into his eyes, and look at his tongue.  It was only a few minutes and she handed him back to me and told me he would never be able to crawl, walk, eventually he would be on a machine that would breath for him, and chances are he would not live to see his second birthday.  By this  time I was crying and looking at this baby in my arms smiling at me looking so very healthy and happy with only a cold.  She told me he would be prone to respiratory illness and would need to see a whole round of doctors.  The disease she was telling me was Spinal Muscular Atrophy type 1, a form of muscular dystrophy.  What was this I had never even heard of this before..and by this time I couldn't even think straight all I knew is I had to get out of there.  My mom took Nathan out to the waiting room and the doctor left me in the room while she went to get me a list of things I needed to do such as get an MRI and a blood
test.  I sat in that room tears streaming from my eyes and wondering what
was happening to me...why me God? 
We took Nathan to Kosair Children's Hospital that afternoon to have
the  blood test done and then left to go home.  I was greeted by my husband who just held me and Nathan and cried with us.  From that afternoon my life had been turned upside down but I wasn't going to let this happen.  My son didn't have this...I would prove the Neurologist wrong.  Brian and I decided we were not going to get any more tests done until we got the blood test results back, we didn't want to put Nathan through anything more at that time.  Brian and I began to look for the miracles...if Nathan would move his arms a little more we would get excited and praise him like he was doing a headstand.  It was God who kept us sane in that trying time.  The first week of November Nathan's cold seemed to get worse and he began having trouble breathing and I was trying everything I could to make it
easier for him.  We still had no results from the test but we just kept praying they would be negative.  Wednesday November 4th Nathan was having a really hard time breathing so I tried to make him as comfortable as I could and we all went to bed.  Nathan was sleeping on my pillow with me and I could hear how hard it was for him to breath...then he seemed to stop breathing.  I jumped up and ran into the bathroom with him and tried to help him with steam from the shower but it wasn't helping he began to turn blue.  I ran out and woke Brian up and we rushed him to the hospital.  There we were in looking at our baby in the Emergency Room with nurses running all around him trying to find a vein for an IV and with the little oxygen tube sticking out from his nose and thought how sad this was and how scary for a little baby.  All I could do was just keep rubbing his hands and kissing his feet and telling him I loved him so much.  Nathan seemed to be more comfortable and he had lost that grayish look and had more color.  The x-ray showed he had pneumonia and so they showed us to our room.  Nathan had never slept apart from me but here he was sleeping in a crib with an oxygen tent over him.  My mom came and stayed with me for the rest of
the week we were in the hospital.  Nathan seemed to be getting better and he
could get out of the oxygen tent more and more so finally his x-ray showed his lungs had cleared up and we were released from the hospital on Saturday.  Nathan was so excited to get back home to all his comfortable things but it didn't last long.  Before to long his breath became labored again and it was getting hard for him to breath.  Finally after watching this we decided to get him to the hospital once again.  We took him to Kosair Children's Hospital, they took him immediately into the ER and began to work on him.  They wouldn't let me go back with him so we sat out in the waiting room.  The doctor informed us that his lungs were so full of secretions that it was pushing his heart out of place.  They got him stable and let me go back to see him before they took him upstairs.  I looked at all the wires and things in him.  He had a tube down his throat and one down his nose and an IV in his head...I just kissed him anywhere I could.  They took him up to the CCU and let me and my mom go in and that is were we lived for the next few days.  They began to bring him off the ventilator little by little and were getting his lungs cleared out.  The Neurologist would come each day to check on him but still we had not gotten the test results back.  On that Wednesday November 11 they decided it was time to get him off the ventilator.
 We began to pray for strength for Nathan....they took him off that afternoon
and right after they took him off we got the results from the blood
test...positive for SMA.  I couldn't stand it...I had to run but I couldn't leave Nathan now....Brian could only hold me.  Nathan didn't seem to be doing very well off of it so it was time to make some we didn't want to have to make.  How can you make that decision?  I looked at Brian and we knew what we had to do.  I couldn't believe this was happening but it was and it was the hardest thing we have ever done.  We called all the family so they could hold Nathan for the last time on this earth.  A lot of tears were shed but Nathan just took it all in, he was getting tired.  The doctors told us it would only be a few hours but Nathan just kept on fighting and I think God was giving him the strength to fight so we could have one more night together, one more night for Nathan to sleep peacefully in my arms.  He went from mommy's arms to daddy's arms, then back to mommy's arms again.  I sat and looked at Nathan as if trying to absorb everything I could, his smile, his smell, his features, and just his beauty.  The doctor would give him morphine to make him comfortable but we gave him plenty of love that night. 
Brian and I told him how much we loved him and would miss him but that we understood he needed to go.  On Thursday morning the sun was shining
brightly, and at about 8:20 Nathan looked up at him mommy and daddy, smiled faintly, and breathed his last.  He went from his mommy's arms straight into the arms of  Jesus.  He is pain free, laughing, crawling, running, and doing all the things he wouldn't have had the chance to do here on this earth and one sweet day I will join him.......
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I will not tell you things have been wonderful, there have been many
tears shed and my heart has been broken a thousand times over but I know where he is right now...singing with the angels.  His face is just as sweet and I carry Nathan in my heart...not a day goes by that I don't think of him, or smile at the memory of him and how much he means to me.  I love him just as much now as I did....he is my sweet baby boy.  My life will never be the same but I do find joy in things that I never did before...the smell of the flowers in the spring.   A simple sunset, and I thank God each and every day for the miracle of life, the ability to get up and be able to do what I want.  Life is a gift...just like Nathan.  

I love you Nathan....

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