My story

Hi! My name is Addison Grace Gautreau and I would like to share my journey with you. When mommy and daddy met in Destin, Florida in April 2006, it was love at first sight. Mommy moved 6 months later from Ocean Springs, Mississippi to live with daddy in Gonzales, Louisiana.  Daddy asked mommy to marry him in March and they were married on December 1, 2007. They immediately started planning for me. After trying for a year, mommy and daddy had some test done and the doctors gave them some sad news. The doctor said after 14 months of trying with no luck and the test results proved they would have to start fertility treatments. SURPRISE! Before ever starting treatment and just 2 weeks after the bad news mommy found out she was pregnant. It was the happiest moment of both of their lives; well of course until I was born.

 My due date was December 4, 2009, almost on my parent’s anniversary. Mommy read all the pregnancy books and ate very healthy so I could grow big and strong. During my 20 week ultrasound the technician could not get a good look at my heart so the doctor ordered another ultrasound in 4 weeks. That ultrasound showed mommy had lots of amniotic fluid so maybe she had gestational diabetes. Mommy passed the glucose test so nope, it was something else. The doctor ordered another ultrasound in 3 weeks. My 27 week ultrasound revealed I had a birth defect that is 1 in 10,000 births. It is called Duodenal Atresia. It is very common in Down Syndrome babies. Mommy saw a neonatal physician the next week and he confirmed my diagnosis. This meant since I was unable to swallow the amniotic fluid it would continue to grow and could cause mommy to be very uncomfortable and hard for her to breathe and I would arrive earlier than my due date.

My Maw Maw Vickie came to visit mommy to help her get all the nesting done. My daddy was out of town hours away at a fishing tournament. Mommy was having contractions and she went to the hospital on Friday night around 8 PM. The nurses did some test on mommy and then the doctor came to give us the news. Mommy’s water was leaking and had caused an infection, she was in labor. The doctor said it was not the best case scenario for me, he thought I was septic. I was born hours later at 3:41 AM on September 26, 2009. Don’t worry, daddy made it in time to the hospital. I was 10 weeks premature. I weighed 3 pounds and 12.2 ounces and was 17 ¼ inches long.

There was a team of neonatologists waiting for me and they placed me on a ventilator to help me breathe. I was born with 2 heart defects, a PDA and ASD. I had surgery the next morning to repair my stomach. After my surgery I weighed 3 pounds 6 ounces. I had jaundice and anemia. Mommy didn’t get to hold me until I was 5 days old and it was just for a few minutes. While I was in the NICU for 5 weeks I had many ups and downs. I came home on October 31st and I weighed 5 pounds. I even got to dress up like a pumpkin for Halloween. I had an apnea monitor and caffeine medication to remind me to breathe. I was only home for 5 days and I had to visit the ER because my monitor was going off so much. I was admitted for 4 days and came home on continuous oxygen. A home health nurse came to visit me 2 times a week and I had 8 doctors all of different specialties to follow up with.

I continued to grow big and strong but I had horrible reflux. Mommy couldn’t even lay me down to change my diapers or spit up would come out of my nose.  I saw many doctors, cardiologists, ophthalmologists, neurologists, pulmonologists, surgeons, orthopedics, and I have a therapist that visits me once a week.  I have so many scars from the NICU it takes fingers and toes to count them all. By January 2010 I had been taken off my continusous oxygen and the apnea monitor. Mommy was excited to not have to worry about wires while changing my diapers and giving me my baths or having to bring all the equipment to my appointments. I received 6 months of RSV vaccines. The dosage goes by weight and each vaccine was $3000-$5000. I was discharged from the cardiologist when I was 9 months old and both of my heart defects are heeled.  The cardiologist told mommy if she gets pregnant with a brother or sister for me she would have to visit him to check their hearts too. Mommy and daddy just want to spoil me but I keep asking for a baby brother. Because my reflux is so bad I wasn't able to do tummy time and  I started crawling when I was 9 months and 2 days old. I weighed 20 pounds 12 ounces and 28 ½ inches long on my 1^st Birthday!!!

I took my first steps when I was 13 1/2 months old. Because I am flat footed I have foot pronation, which means it looks like my ankles are going to touch the ground when I walk. My pediatrician said she didn't think I qualified to receive RSV vaccines this winter because I was gaining weight. I had RSV when I was 14 months old. I was able to stay out of the hospital because mommy and daddy took such good care of me. It took 3 rounds of antibiotics, steroids and 5 weeks before I felt better.  In April 2011, I had my adenoids removed and tubes placed in my ears. I was snoring, having sleep apnea and as much as I stayed sick I had lots of ear infections. By my second birthday I had many follow up appointments. My eye doctor said I don’t have to visit him for 2 more years! I was visiting him and my neurologist every 6 months. My neurodevelopment doctor said I tested as a 29 month old and I was only 24 months (21 ½ corrected age) so she discharged me a year earlier than expected. She even gave me a certificate for my baby book. Mommy is always asking me questions like, what color is this, what shape is that, count this, etc.

I was still snoring and having 5-8 second apneas so my ENT took my tonsils out on November 2^nd. I had to stay the night at the hospital but I wasn’t scared. I am still suffering from reflux and I vomit all the time. Mommy and daddy wanted some answers and changed pediatricians twice. The nice doctor mommy works for gave me a referral to see a gastroenterologists. I had an EGD done on November 18^th. I have hiatal hernia, esophageal ulcers, reflux, and a stricture. I even had old blood in my tummy. The nice doctor stretched open my stricture but he told us sometimes it doesn't work. After the EGD, I had to go straight to the hospital for an upper GI swallow test to check for other blockages. The radiologist noticed my stomach only empties when I lay on my left side. When I was laying on my back or right side the fluid barley drained. Because mommy and daddy are worried about me choking and I still don't sleep through the night, I have always slept in their bed. I sleep in a nap nanny because it is elevated and helps with my reflux.  I have vomited 42 times in 39 days. Little things make me vomit, like coughing, hiccups or if I cry hard but, sometimes I vomit for no reason at all.  I was referred to a pediatric surgeon to have surgery again on stomach. The scar tissue from surgery when I was 1 day old is closing the opening. This will be my 5^th surgery.  Next month I will see my orthopedic doctor about my feet and I will get to order my special shoes called orthotics.

My medications for reflux and ulcers are $210 a month not including if I get sick and have to get antibiotics filled. There is a generic for Prevacid but it has been on back order for several months and the pharmacist says there is no telling when they will get it in. Because I take it twice a day my insurance will only let me get it filled every 15 days and it is a $70 copay each time.  My mommy and daddy spend an average of $4,000 a year just on my medicine and copayments for my visits with all my doctors. They have applied for financial assistance with my medical bills from the hospital I stayed in for 5 weeks and from the state but were denied each time. When I was born mommy and daddy were told by the hospital's social worker I would qualify for Medicaid as a secondary insurance because being born premature is considered a disability. But when I applied I was denied because according to them I was 11 ounces to big to qualify for my gestational age. They make monthly payments to 2 surgery centers, 3 hospitals, and many doctors. It will take 27 years to pay off the bills I have from when I was born until 2011. I had 55 therapy sessions and 43 doctor appointments in 2011. Thank you for reading my story. I will keep you updated on my progress.