Karlie was on CPAP for about a month and she was making no progress. She wasn’t getting better or worse, everything was just staying the same. Her doctors thought it was time to begin weaning her off of morphine. Karlie had been on a morphine drip for at least a month at this point so we knew the weaning process was going to be rough. Her body started going through withdrawals and she was absolutely miserable. She was given methadone to help with the withdrawal symptoms. Karlie was extremely agitated and there were some days where it was nearly impossible to console her. She began vomiting multiple times a day. She started to really decline and it turned out she had gotten pneumonia again. We believe she had aspirated from vomiting and some vomit got into her airway and caused pneumonia. The CPAP was blowing some pretty strong pressure into her so unfortunately aspirating was a possibility. She was put on antibiotics again and her little body was working so hard and she was exhausted. They put her back on morphine and it became apparent that she needed a breathing tube and ventilator again. I remember the nurse holding up her arm and letting go and it just flopped down. She had no fight left in her. Once they got the breathing tube in and she got the support from the ventilator she was instantly better. She was smiling and wiggling around and having a great time.

One of Karlie’s main doctors sat down with us and told us he thought it was time for Karlie to get a tracheostomy. We really hoped she wouldn’t need a trach but we knew it was going to be the best thing for her so we didn’t hesitate. We heard from other parents that getting a trach was the best decision they could have made for their child. Karlie’s breathing was just going in circles and we were getting nowhere. Getting a trach would mean she could come home sooner.

A tracheostomy is scary and intimidating but it was definitely the best option for Karlie. She was clearly going to need breathing support for a long time and a trach is so much better than a breathing tube. When a baby has a breathing tube they are very confined to their bed and can only do so much movement. Any time she was moved while she had a breathing tube someone had to hold the tube in place until she was still again. This was not a sustainable option and we could not let our fears of a trach hold her back.

I knew the trach was going to be the best thing for her but I was so scared. Seeing it for the first time when they brought her back from surgery was honestly terrifying and overwhelming for me. I just stared at my unconscious baby with this tube in her throat. I thought to myself, “How are we going to do this?” We began classes with the respiratory therapists to learn all about the trach and how to care for Karlie. We started with the basics and focused on just a couple of things in each class so it wouldn’t become overwhelming. We learned how to do Karlie’s trach cares and I began doing the cares daily with the help of the respiratory therapist and nurse. What started out so scary and intimidating slowly became easier as my confidence grew.