4 Months Old

Today is a week since her surgery. She had a rough start to the week. They were trying to keep her sedated enough to keep her still so the trach can heal and settle but not sedated to the point where she was a zombie. It took them a few days to figure out the perfect medication combination but they got it right and she had a better week.

Today was her first trach change and she did great! Now that she's had that done they can start to ween her off the sedation so that she's awake more and they can start to do more activities with her and have her a little more mobile. I got to hold her again today for the first time in almost two weeks and she was just beautiful! As soon as they put her in my arms she fell right asleep and just stayed that way until I had to leave. It just breaks my heart leaving her but she'll be back in Jersey soon! Next Friday she'll have her G-Tube surgery and then a week or two after that she'll be transferred to Children's Specialized Hospital in New Brunswick. While we're there Arthur and I will have to go through a lot of training to learn how to take care of the trach and be her primary care givers. Once they're (and we're) comfortable enough with the training they can release her. We're hoping by mid-September she'll be home. We'll have to have nursing for her when she gets home, especially at night, but at this point we're taking this process one step at a time. We just got through her first trach change and now we're focusing on her G-Tube surgery.

Miss Kennedy turned 4 months old yesterday! It's amazing what my little girl has been through in just 4 months. She's so strong and such a fighter, just like her sister! It has touched Arthur and I how many people have reached out to us to offer support during this time. People I went to high school with who I haven't talked to in years. Ladies I met on a chat board 10 years ago when I got engaged. She has love and prayers coming from Arizona, Florida, Tennessee and even all the way from beautiful Ireland! This whole situation has opened our eyes to many things but most importantly it has shown us that people are kind and good and selfless. It's truly a beautiful thing to see especially when so many bad things could be going on around you. We're truly blessed and so is our family to have such amazing people praying and thinking of Kennedy. With all of you on her side it's no wonder she has such strength.

We love you all,

The Crist Family

Arthur, Katie, Makenzie & Kennedy

 

Arthur picking Kennedy up for the first time. She was just days old.

Kennedy 4 month old!