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1st I want to say thanks for taking the time to read our story & follow our Journey.
My name is Cassandra and I started this Caring bridge for my Hero (My Son)
It all started in July of 2014. I found out I was going to be a new mommy again for the 6th time. This was a planned pregnancy and I was so excited! When I was 13 weeks pregnant with my boy Lealand I got a phone call from my Dr saying that the AFP levels were off. They called to let me know that my baby had a chance of being born with Spinabifida, If felt as if the whole world was out to get me, My heart stopped, I lost control, I was scared for myself and my unborn child. That next week I went to the Dr for a high risk ultrasound and they found something else. My son was going to be born with a birth defect that 1 in 2200 babies are born with. My son was going to be born with Gstroschisis. This is a birth defect in witch there is a hole in the abdominal wall and baby's organs & Intestines could protrude through the hole in his abdominal wall. In many cases baby will be born at or round 37 weeks. They will then put there organs & Intestines that were out in a silo type bag and let gravity do its job to work these back into the abdominal wall. In my boys case that didn't happen.
When I was 33 week's pregnant with Lealand I started having complications and had several trips to and from the ER. I started contracting and bleeding at 33 weeks and the dr's kept sending me home time, and time again. I finally went in on a Sunday afternoon when the bleeding kept getting worse and worse. They finally admitted me. While being monitored overnight, getting steroid shots, and trying everything possible to stop labor it just didn't work. The Dr came in to check me the following morning and said I was at a 4 and was going to send me home yet again until he accidentally broke my water. A few hours later Lealand made his way into this world, while in distress due to his umbilical cord being wrapped around his neck, and Gastroschisis. As soon as Lealand was born they took him away! They worked, and worked, and worked on him for what seemed like forever. When Lealand was born he was born with all of his small Intestines out and everything that was out was blue, purple, and black. They were all supposed to be pink & healthy...but that's not how things went for us. an hour after Lealand was born he was taken to the OR to have his first of what would be many surgeries. Lealand lost 80% of his small Intestines and had a Stoma placed for an Ostomy bag, & to remove all the dead Intestines. When Lealand was a week old they talked about sending us to a Childrens hospital where they specialized in Lealand's condition. When they were getting things set up for our big move to Children's 3 hours away from home I (Mom) got really sick and lucky I didn't loose my life. I was put in the hospital for Post partum Preeclampsia, I had swelling on my brain, and was extremely lucky not to suffer from long term complication's, I stayed in the same hospital as my baby boy but was unable to see him because I was so weak. I was out of it for almost 3 day's. Thankful for my son's father for being strong and getting us all through it. Soon after I was released we packed our bags and headed 3 hour's North to Ann & Robert H Lurie Children's hospital of Chicago for the next 3 month's. For the next 3 month's Lealand's Dad & I spent the next 3 month's learning to care for our baby boy. We had no idea at this time how long we would spend in the hospital. I had 3 other children at home whom I had to leave behind with family, We were 3 hour's from home.
On March 30th 2015 Lealand underwent his 2nd surgery. They would go in and find out how much small intestine's Lealand had left. They were able to reverse his Stoma & Reconnect his small intestine's They would also place a G-Tube in his belly so he would be able to eat. He was never able to take a bottle & the one time we tried he threw up and was never able to tolerate anything by mouth. So from then on we used his G-Tube. Lealand never tolerated his tube feeding's. His output was always more then his input and this was definitely not what we wanted. Being's Lealand couldn't eat or tolerate his tube feeding's he had to be on 24 hour's a day of TPN (IV nutrition) He was diagnosed with Short Gut Syndrome as we found out he was only left with 20cm's of Small intestine's. He didn't have enough left to digest or absorb eternal nutrition.