Emmaswishtrip
Earning My Ears
- Joined
- Aug 23, 2012
We are so excited to be going on a Make a Wish trip to Disney World!! Emma is a 4 year old twin who everyday asks are we going to Disney today? 
A little background on Emma and our family! Emma and her twin brother Drew were born at 31 weeks unexpectedly. Drew weighed 3lbs 1 oz. and Emma 2lbs 6.5 oz. both we fighters! We learned the day after Emma was born that her esophagus was not attached to her stomach and would need to be repaired the next day. Emma did very well through surgery and we thought everything was going to go uphill! After many attempts Emma was unable to breathe on her own and the hospital we were at, were out of answers for us. Her brother was doing well growing, eating and gaining weight with talks of coming home! We decided to move Emma to Childrens Hospital Boston, it was the best decision we have made for her.
Once Emma transferred hospitals, her new doctors found that Emma had a laryngeal cleft and every time she would swallow she had a chance of aspirating into her lungs. The positive was they were able to get Emma to breathe on her own with the help of oxygen. It was decided Emma need a gj tube in her stomach in case she would reflux and aspirate as we were trying to keep her as healthy as possible and have her grow so we could repair her cleft. Emmas twin Drew came home at just over 4 lbs. and daily made trips to visit his sister to keep her strong. We had some glimmers of light thinking she was getting better and might come home but one night a few days before our first family Christmas we had gotten a call that Emma had gotten very sick very quickly and needed to be intubated again. We talked to her doctors and knew that Emma would need a tracheostomy. We say that Emmas 1st Christmas gift was her trach. This would help Emma get strong for the surgery she needs. After many days and nights we were able to take Emma home. Unfortunately Emma only stayed home for one night and was rushed back to Childrens Hospital Boston with aspirating pneumonia. A few weeks later she came home again and this time made it 2 nights before being rushed back with aspirating pneumonia. This went on a few more times until Emma turned blue at home and we decided with the doctors it was not safe to have our princess home with us. Emma spent a total of 265 days in the NICU to receive 1 of 3 laryngeal cleft repairs.
Throughout Emmas journey we have found an immunodeficiency and now is being treated monthly with an IV transfusion. Emma is a child we call a frequent flier at Childrens Hospital Boston. We are followed by many physicians with lists of diagnosis. The one thing we havent been able to find is a way to remove Emmas tracheostomy. We have tried twice now and while everything looks good there are unanswered reasons of why she is requiring oxygen daily and cannot breathe without her trach.
Emma is a typical little girl who loves to go to preschool and play with her brother! The one thing Emma does notice is how different she is then everyone else. When we told Emma that she was going to be able to make wish for anything she would want she looked down and said Disney, but then pointed to her trach and said I still have my trach. My husband and I said well lets go to Disney with a trach, her brother was so excited and Emma said call the doctor and ask in a whispering voice. We said Emma, we did and you can go, the smile on her face lit up the room like the fourth of July.
We are waiting to meet with our wish grantor next week to plan this amazing experience!
A little background on Emma and our family! Emma and her twin brother Drew were born at 31 weeks unexpectedly. Drew weighed 3lbs 1 oz. and Emma 2lbs 6.5 oz. both we fighters! We learned the day after Emma was born that her esophagus was not attached to her stomach and would need to be repaired the next day. Emma did very well through surgery and we thought everything was going to go uphill! After many attempts Emma was unable to breathe on her own and the hospital we were at, were out of answers for us. Her brother was doing well growing, eating and gaining weight with talks of coming home! We decided to move Emma to Childrens Hospital Boston, it was the best decision we have made for her.
Once Emma transferred hospitals, her new doctors found that Emma had a laryngeal cleft and every time she would swallow she had a chance of aspirating into her lungs. The positive was they were able to get Emma to breathe on her own with the help of oxygen. It was decided Emma need a gj tube in her stomach in case she would reflux and aspirate as we were trying to keep her as healthy as possible and have her grow so we could repair her cleft. Emmas twin Drew came home at just over 4 lbs. and daily made trips to visit his sister to keep her strong. We had some glimmers of light thinking she was getting better and might come home but one night a few days before our first family Christmas we had gotten a call that Emma had gotten very sick very quickly and needed to be intubated again. We talked to her doctors and knew that Emma would need a tracheostomy. We say that Emmas 1st Christmas gift was her trach. This would help Emma get strong for the surgery she needs. After many days and nights we were able to take Emma home. Unfortunately Emma only stayed home for one night and was rushed back to Childrens Hospital Boston with aspirating pneumonia. A few weeks later she came home again and this time made it 2 nights before being rushed back with aspirating pneumonia. This went on a few more times until Emma turned blue at home and we decided with the doctors it was not safe to have our princess home with us. Emma spent a total of 265 days in the NICU to receive 1 of 3 laryngeal cleft repairs.
Throughout Emmas journey we have found an immunodeficiency and now is being treated monthly with an IV transfusion. Emma is a child we call a frequent flier at Childrens Hospital Boston. We are followed by many physicians with lists of diagnosis. The one thing we havent been able to find is a way to remove Emmas tracheostomy. We have tried twice now and while everything looks good there are unanswered reasons of why she is requiring oxygen daily and cannot breathe without her trach.
Emma is a typical little girl who loves to go to preschool and play with her brother! The one thing Emma does notice is how different she is then everyone else. When we told Emma that she was going to be able to make wish for anything she would want she looked down and said Disney, but then pointed to her trach and said I still have my trach. My husband and I said well lets go to Disney with a trach, her brother was so excited and Emma said call the doctor and ask in a whispering voice. We said Emma, we did and you can go, the smile on her face lit up the room like the fourth of July.
We are waiting to meet with our wish grantor next week to plan this amazing experience!
Can't wait to read some more about your fighter - both of them! Hugs to all!
