When you are prepping to deliver a baby that has any type of 'special needs' or 'abnormal issues' the delivery room gets really crowded with extra nurses, specialists, and NICU staff. I was amazed at how many people came to see me have a baby! It was exciting.
Lexi was delivered by C-Section- an amazing and crazy experience. Soon after she was born she became the STAR of the room. She was swept away from the doctor and placed on an examination table where 4-5 doctors looked her over. She was small, 4 pounds and 12 ounces. She had 10 fingers and 10 toes, 2 arms and 2 legs but as the doctors were examining her they realized she was missing something.
As I was in the recovery room, high as a kite, family came in to inform me that our new baby girl was missing a butt. I was very confused at these words. How can someone be missing a butt. Then it was explained to me that she was missing her 'bottom hole'. Yes, my child not only was born with a congenital heart defect, she was born with an imperforated anus. In my mind I thought how crazy that sounded but after it sunk in I asked if it was fixable and I was told that it was. Since it was fixable, I chose not to stress out about it.
Day 2 of Lexi's life she went in for an operation to have a colostomy so she could poop. This was a new experience for us that required much training and practice on the removal, cleaning and replacement of one. It was amazing, however, not to have to change a dirty diaper for around the first 8 months of her life.
Lexi had to stay in the PICU/NICU for two weeks. They kept her in the hospital in hopes that she would gain weight. Since her heart was not as strong as a normal heart, she got really tired when she would eat, therefore not getting as many calories as she needed to gain weight. Finally after hanging out at the hospital waiting for her 'feed times' each day, the doctors decided to let her go home to try and gain weight.
She was unsuccessful at gaining weight so they finally inserted a feeding tube through her nose. Our Lexi was determined to stay a skinny bird, so even this did not help.
Today, Lexi has had all the necessary surgeries to make her 'normal'. She had her bottom fixed (SN- to fix a bottom like this, it's a total of 3 surgeries- after Lexi's last bottom surgery, there was a 'mess up' that landed her in the hospital for 2 weeks- malrotation) and her heart fixed. She is still the most finicky eater I've ever met, except if she is eating sweets. When you look at her you would never know the challenges that she went through her first year of life and the challenges she still goes through today. She is an amazing and awesome kid!
Written by: Aimee Fauci