Cyndy with her two children.
My husband and I have two girls with BPES. Our oldest, Amelia had her first eye surgery (canthoplasty) in August 2015, when she was three and her second surgery (external levator resection) when she was four.
Prior to her surgery, my husband and I were very nervous as any parents would be. We kept ourselves together in front of Amelia, but had to take turns breaking down to make sure she did not see us upset. We did not want her to think there was anything to worry about. I knew we needed to discuss the surgery with Amelia, but I wasn’t sure of the correct timing or even how to do it.
The day before her surgery, we sat down and explained to her that tomorrow we were going to go on an adventure and have surgery where the doctor she had met was going to paint her eyes. We told her that daddy also had surgery on his eyes when he was about her age. I told her that her eyes may be a little sore after, but she could put fun icepacks on them. I had purchased fun shaped gel icepacks at the dollar store and they worked wonders! We explained things on the level a three year old could understand and asked if she had any questions. Her only question was “what color will he paint them?”
The morning of her surgery, we reminded her that she couldn’t eat or drink and she honestly didn’t have an issue with it. Her surgery was unfortunately one of the later surgeries at the local children’s hospital. When we arrived at the hospital, she was very excited to play with all the neat toys that were available in the waiting rooms.
As with many surgeries later in the day, her surgery time was bumped back several times; which, of course, only made mommy and daddy’s nerves worse. Amelia, on the other hand, was completely happy to have extra time to play. When it was almost time for surgery, we went back with a nurse and she got to pick out what she would like to smell (laughing gas); she chose strawberry. When it was time for her to go back, the nurse she met earlier and the anesthesiologist met us and she walked with them down the hall to get ready for surgery. We hugged and kissed her and told her we would see her soon. Of course, this was one of the hardest parts of the day. My husband and I completely lost it after she could no longer see us.
Her surgery took longer than planned, but given the nature of the surgery we would prefer the surgeon take his time to ensure everything is perfect. When her surgery was finished, the doctor came out and explained that everything went well and they would be taking Amelia to the recovery area.
Within ten minutes of Amelia being in the recovery room, we were able to be in there with her. This was a very hard part of our day as I don’t think it is possible to be prepared to see your child with stitches in their eyelids. In the recovery room when she cried it looked as if she was crying blood, and we weren’t prepared for this. It was rough, but only temporary. She was very disoriented and nauseated after surgery. My husband and I exchanged many glances that communicated “why on earth did we do this?” This was the hardest part of the entire surgery, and thankfully, Amelia has very little memory of it. She remembers that she threw up, but that’s it. She was in the recovery room for about an hour and a half as they had to get her nausea under control before we could take her home.
She slept the car ride home and stayed asleep the entire night. The hospital sent us home with arm restraints because they did not want her rubbing her eyelids while she still wasn’t’ completely aware of what was going on. The surgeon said that the first night was his only concern as once she was fully awake if she rubbed her eyes it wouldn’t feel the best and she would stop. I could not handle putting arm restraints on her so she slept in our bed and I pretty much stayed awake and if she moved I made sure she did not touch her eyes.
The morning after surgery was completely different than we expected. We honestly thought she would need a day to rest and recover; this was not the case. She woke up and was ready to play as usual! At the time her little sister was almost one and did not quite understand that she could not hit her sister’s face. We had to apply ointment to Amelia’s incisions 3 times a day and make sure she kept ice packs on her eyes periodically; she was a trooper through it all.
Later this day Amelia wanted to look at her eyes in her princess vanity mirror. My stomach was in knots in this moment thinking “what will she think about the stitches, blood, etc.?” When she looked in the mirror she said excitedly, “Mom, the doctor painted my eyes! They are so pretty!”
After surgery was very simple and Amelia was excited to get extra visitors that brought her favorite lunch, Chick-fil-A. I was a little hesitant about taking her out in public as I was afraid of comments from strangers, etc. A friend took us out for snowballs and this was exactly what we needed. She enjoyed having a snowball and playing outside. Very few people made any comments and if they did, Amelia told them the doctor painted her eyes. As parents, I think it is easy to overthink and worry about all the what-ifs as we want to protect our children. When in reality, our kids keep it simple and keep going. She healed very quickly and had great results with her canthoplasty surgery. It opened her field of vision quite a bit.
Read part 2 of Cyndy's story of her daughters external levator resection here.
Written by Cyndy Somerset, whose husband and two children have BPES.
Prior to her surgery, my husband and I were very nervous as any parents would be. We kept ourselves together in front of Amelia, but had to take turns breaking down to make sure she did not see us upset. We did not want her to think there was anything to worry about. I knew we needed to discuss the surgery with Amelia, but I wasn’t sure of the correct timing or even how to do it.
The day before her surgery, we sat down and explained to her that tomorrow we were going to go on an adventure and have surgery where the doctor she had met was going to paint her eyes. We told her that daddy also had surgery on his eyes when he was about her age. I told her that her eyes may be a little sore after, but she could put fun icepacks on them. I had purchased fun shaped gel icepacks at the dollar store and they worked wonders! We explained things on the level a three year old could understand and asked if she had any questions. Her only question was “what color will he paint them?”
The morning of her surgery, we reminded her that she couldn’t eat or drink and she honestly didn’t have an issue with it. Her surgery was unfortunately one of the later surgeries at the local children’s hospital. When we arrived at the hospital, she was very excited to play with all the neat toys that were available in the waiting rooms.
As with many surgeries later in the day, her surgery time was bumped back several times; which, of course, only made mommy and daddy’s nerves worse. Amelia, on the other hand, was completely happy to have extra time to play. When it was almost time for surgery, we went back with a nurse and she got to pick out what she would like to smell (laughing gas); she chose strawberry. When it was time for her to go back, the nurse she met earlier and the anesthesiologist met us and she walked with them down the hall to get ready for surgery. We hugged and kissed her and told her we would see her soon. Of course, this was one of the hardest parts of the day. My husband and I completely lost it after she could no longer see us.
Her surgery took longer than planned, but given the nature of the surgery we would prefer the surgeon take his time to ensure everything is perfect. When her surgery was finished, the doctor came out and explained that everything went well and they would be taking Amelia to the recovery area.
Within ten minutes of Amelia being in the recovery room, we were able to be in there with her. This was a very hard part of our day as I don’t think it is possible to be prepared to see your child with stitches in their eyelids. In the recovery room when she cried it looked as if she was crying blood, and we weren’t prepared for this. It was rough, but only temporary. She was very disoriented and nauseated after surgery. My husband and I exchanged many glances that communicated “why on earth did we do this?” This was the hardest part of the entire surgery, and thankfully, Amelia has very little memory of it. She remembers that she threw up, but that’s it. She was in the recovery room for about an hour and a half as they had to get her nausea under control before we could take her home.
She slept the car ride home and stayed asleep the entire night. The hospital sent us home with arm restraints because they did not want her rubbing her eyelids while she still wasn’t’ completely aware of what was going on. The surgeon said that the first night was his only concern as once she was fully awake if she rubbed her eyes it wouldn’t feel the best and she would stop. I could not handle putting arm restraints on her so she slept in our bed and I pretty much stayed awake and if she moved I made sure she did not touch her eyes.
The morning after surgery was completely different than we expected. We honestly thought she would need a day to rest and recover; this was not the case. She woke up and was ready to play as usual! At the time her little sister was almost one and did not quite understand that she could not hit her sister’s face. We had to apply ointment to Amelia’s incisions 3 times a day and make sure she kept ice packs on her eyes periodically; she was a trooper through it all.
Later this day Amelia wanted to look at her eyes in her princess vanity mirror. My stomach was in knots in this moment thinking “what will she think about the stitches, blood, etc.?” When she looked in the mirror she said excitedly, “Mom, the doctor painted my eyes! They are so pretty!”
After surgery was very simple and Amelia was excited to get extra visitors that brought her favorite lunch, Chick-fil-A. I was a little hesitant about taking her out in public as I was afraid of comments from strangers, etc. A friend took us out for snowballs and this was exactly what we needed. She enjoyed having a snowball and playing outside. Very few people made any comments and if they did, Amelia told them the doctor painted her eyes. As parents, I think it is easy to overthink and worry about all the what-ifs as we want to protect our children. When in reality, our kids keep it simple and keep going. She healed very quickly and had great results with her canthoplasty surgery. It opened her field of vision quite a bit.
Read part 2 of Cyndy's story of her daughters external levator resection here.
Written by Cyndy Somerset, whose husband and two children have BPES.
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