Shelby's Story

Posted by Michelle Finn on

Shelby's Story.  Written by her Mom Erin
Shelby was my second born child. She has an older brother Jaxsen . Jaxsen was born August 28, 2003 weighing 10lbs 13ozs. I got married June 19, 2004. Shelby was conceived on July 11. I will never forget this date. On November 16 my husband and I went for counselling to discuss our baby; my blood work came back with abnormalities
. I went for amniocentesis & ultrasound. The baby was thought to have Down's syndrome and spina bifida. We were asked if we wanted to abort, but decided against it. We loved each other and would continue with the pregnancy. The results came back and our baby was a GIRL!!. There was no promising until "Shelby" was born. I was booked for my c-section on March 30 .  I was all ready to meet our little girl. when the doctor came in and said it had to be postponed until the hospital could make sure everything was okay to deliver. I got a call later that night to come in the next day. We arrived,  and I was given my epidural and taken to the OR.
Shelby Alexis Beaudoin was delivered at 12:30 pm weighing 4lbs 15ozs. She was like a china doll. I never saw my little girl except for 5 seconds before Glenn needed to take her to the NICU. I was taken to recovery until I was able to be transported to my room. Glenn came in  and I asked him where was Shelby? She needed oxygen and to be fed due to the fact her blood sugar was very low. I finally got to see my Shelby girl about 12 hours later. She was wrapped in three blankets to keep her warm. Shelby lost weight because when she was exposed to cold. Jaxsen was so excited to meet "his baby" finally[ he visited us every day. I was told that my placenta had calcified and if she had stayed in my belly she would have passed away. Shelby came home after 5 days.  I tried to breastfeed but could only pump and finger feed her . I pumped and fed her every 3 hours. I was exhausted from taking care of a newborn, 19 month old and a sick husband. July 11th came and I thought Shelby was shivering, but it turned out she was having seizures. We took her to the hospital and was sent to a bigger hospital 45 minutes away. Shelby had another seizure in the ER. She was admitted to see what was happening. Shelby was diagnosed with epilepsy . Her seizures did not stop. Her pediatrician ordered testing and we were sent to The Hospital for Sick Children in Toronto. Shelby was poked, pronged. She was sent for every test possible to find out what was happening. They thought Shelby needed a shunt cause the fluid was on her brain. Infectious disease stepped away, neurosurgery stepped away, neurology & genetics were still involved. Shelby was sent for an MRI . We found out her brain was not developing. Shelby was sent home. She could not keep food down and was losing weight but I tried giving her extra calories in her formula because I could not give her what she needed to survive. Shelby was diagnosed with failure to thrive and later sent for a feeding tube. December 2005 Shelby was diagnosed with monosomy 1p36 chromosome deletion. In other words (in English) if a tractor ran into a bank there was no more money. Into a grocery store, we would starve. I was tested when Shelby was but I was negative. Glenn was tested and he was negative. How could this happen?? We lived every day as best as we could. We went on vacation to Disney world. Shelby took sick. Shelby had RSV that almost took her life. We were asked what we wanted to happen. She was born for a reason!

We decided to sell our house and move to where Shelby could get better services. Colds were not just colds but pneumonia for Shelby . Her lungs were not that great. Shelby was in & out of hospital her whole life. Medically induced comas. High frequency oscillators breathed for her. Blood work, heavy medications, breathing tubes were her only way tp breathe . Cardiac arrest . Every time Shelby was sick I had to leave Jaxsen with my parents after Glenn passed away in June 2008. It broke my heart leaving my son but knowing I had to be with Shelby. I lived at the hospital Monday to Friday came home on weekends to be with my Jaxsen. The guilt I had for being in two different places and not being there for my son. Shelby was always put into PICU where Jaxsen could not visit. I made videos every time I was with Shelby to show him and she heard his voice. Every time Shelby was sick I thought it was her last. Shelby was her own boss. She made the decision to come home when she wanted to[ not when the hospital sent her home.  Shelby was intubation & extubated so many times her airway was so severely damaged. Her airway closed every time the tube came out. The doctor approached me and found out her airway was severely damaged and needed surgery to remove the gradual tissue, her epiglottis was removed. Shelby then was given a Nasal pharyngeal tube to help her breathe. Shelby was given a GJ-tube to bypass her stomach and would never eat again by mouth. I was sent for CPR training because Shelby was getting more fragile. I would do anything to be with my daughter and help her live the life she was given. In 2012 Shelby took really sick and had 2 cardiac arrests. When putting in the breathing tube  she struggled to obtain her oxygen levels. The orange team came to get her and take her HSC. If she coded again they could only give her CPR for 5 minutes then pronounce her. Shelby made it to HSC and was very ill and was told she would not make it overnight. I sat every moment I could with her and talked to her. Everyday she grew a bit better. The first doctor we dealt with came in and said he knew where Shelby got her determination from, me. Shelby came home. Shelby was not the same Shelby as she had been every other time she came home. In November her port a cath was blocked and needed it changed. Shelby was at HSC and got it replaced. She was sent home on December 21 but not 100% .We went to see  Santa  and have their pictures done like every other year.

December 24th was a day I will never forget, Shelby had a rough night.  We were going to my brothers to celebrate Christmas as a family. Shelby's breathing was not right. I took a little video of her and got her ready. I packed her medication and machines. Shelby never liked our local hospital. She started to cough and choke when we got about half way there. I asked my dad to turn around and take her to the hospital. They rushed her there while I started to work on her. My dad & Jaxsen waited in the car; thinking it was going to be a quick visit. My mom sat with us but when things started to get worse she was asked to leave the room. I called  my dad to bring Jaxsen back. It did not look good. There were fourteen people in the resuscitation room working on my little girl. I stood and watched with a feeling of loss. Deep in my heart I knew that Shelby girl did not want to fight anymore. The doctors and nurses worked on her. There were two doctors trying to get the breathing tube in. There was nurses everywhere. The orange team came and were ready to transport her. I went to tell my family to go say goodbye. Jaxsen did not want to go.  I went back to the room and said - Shelby has made her decision and is at peace now. Thank you for everything you've done. One by one they left the room until it was just my Angel & me. I sat holding her looking at her beautiful glow. My girl was a real Angel now. I knew this day would come and was very thankful to be with her when she took her last breath. I held her like I did the day she was born. I never gave up on Shelby.
I could not bury Shelby, but put her into a teddybear that Jaxsen was given and now she is forever with us. Shelby's ashes are in an Angel pendant that I wear around my neck. Jaxsen has her ashes in a Bible made out of brass that he can take with him wherever he goes In his life.
I truly Believe Glenn gave Shelby life when he passed
I Truly Believe Shelby gave me my life back to be with her brother.
Shelby Alexis Beaudoin was born a fighter and passed away a Hero

We miss you
Mommy & Jaxsen
Don't forget our fundraiser for 1p36dsa. 25% of the profits from ALL the sales this month will be donated to Shop For an Amazing Cause.
Just click on the home or catalog button above to shop.

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