Hailey and Logans Daddy
04-30-2007, 11:45 AM
Hello everyone,
I am new here so I thought I would introduce myself. My name is John Janes from Plano TX. I am the father of a wonderful little angel Hailey Nicole Janes. She was born on Feb 15th 2007. Right away we knew something was wrong as she did not cry and was immediately put on oxygen. Ill never forget not being able to cut her cord or even get within 5 feet of her for her first minutes. There were so many doctors there and wouldn’t let me near her. After 5 minutes they put her on moms chest for about 1 minute. At that point they told her they had to take her to the ICU. When they were halfway out the door the nurse who had helped deliver her told me to follow them. We went upstairs and they let me see her on her warmer but I still could not touch or kiss my baby girl. A few minutes later they told me to leave and come back later so they could put her on a vent. I went down to go tell mom what was going on. I stood outside her delivery room door for 5 minutes to get the courage to go in and tell her the news. When I walked in I didn’t have to say a word she could see in my eyes something was wrong. After an hour or so they allowed her to get up and out of bed so we wheeled her to the NICU where we both got to see her and hold her little hand. She had a feeding tube in her nose a vent in her mouth and two IV lines in her belly button. We had no clue at that time it was going to be a 2 month battle to live. We kept watching her grow for a month and she seemed to do better. After about a month she got off the vent for 3 or 4 days but was struggling so hard that she never slept. She also could not cry. She made faint little squeaks but never a cry. We would later find out her vocal cords were damaged by them intubating her over and over. They did test after test and could not find anything. About 3 days after they got her on a nasal canula the doctors told us something that tore my world apart. She had had a stroke. And the worst part is the doctors had missed it. It happened when she was about 2 weeks old while in the NICU. At this point we were transferred to Children’s hospital in Dallas. It was horrible. We couldn’t change her diapers there or touch her much nor could we hold her. It KILLED me to not be able to hold my daughter. They told us after about a week there that she had Campomelic Dysplaisia. They wanted to cut her rib cage out and put titanium ribs in her. They would have to re do this every few years as her chest would not grow on its own. She would need a trach done and be on a vent permanently just to stay alive. Also her brain would not grow or develop and if she knew anything other than mom or dad it would be a miracle. She would never walk, talk or do anything other than lay in bed and wait for another surgery. At this point we decided to go back to the more friendly hospital and make a decision on what we were going to do. It was gut wrenching and horrible to decide but we decided to pull her off the vent and let her be the angel she was. It was Monday the 9th we decided to do this. We made plans to pull her off on Saturday the 15th of april. We invited everyone in our family to come see her and hold her and kiss her. We were told by a NICU nurse about NILMDTS and while mom was on the fence I was all for it. My thoughts were if I didn’t want to see them I didn’t have too but if I did I had them and I’d never get another shot at this. That Saturday she was baptized and by 4 pm everyone had said goodbye. Mom and I waited until 8 to pull her off we wanted just a few more hours with her. We took turns holding her and kissing her and just being a family. The time came to pull her off and it went perfect for Hailey she didn’t suffer or gasp for air just went peacefully straight to heaven. It was our time to hurt and not hers. She had suffered enough and ask any parent and they will tell you they would take any pain in the world for their child not to suffer. Now mom and I try to heal and I don’t think I am doing a good job. Ill make another post about our amazing photographer and how well she did for us. Thanks for reading everyone I look forward to being an active part of this forum.
I miss her smile.
I miss her dark little hairs.
I miss the way she looked at me.
I miss the comfort in her eyes when mom and dad were near.
I miss her little hands and feet.
I miss her little nose.
I miss the innocence she brought to us.
I miss the feeling that I had when I looked into her eyes.
I miss the way she tried and tried when the doctors said she wouldn’t live.
I miss the courage that she had.
I miss the little mobile that she always wanted on.
I miss the little bears that kept her safe at night.
I miss the cries I never heard.
I miss the lessons never learned.
I miss the tea parties Ill never have.
I miss my little girl.
I am new here so I thought I would introduce myself. My name is John Janes from Plano TX. I am the father of a wonderful little angel Hailey Nicole Janes. She was born on Feb 15th 2007. Right away we knew something was wrong as she did not cry and was immediately put on oxygen. Ill never forget not being able to cut her cord or even get within 5 feet of her for her first minutes. There were so many doctors there and wouldn’t let me near her. After 5 minutes they put her on moms chest for about 1 minute. At that point they told her they had to take her to the ICU. When they were halfway out the door the nurse who had helped deliver her told me to follow them. We went upstairs and they let me see her on her warmer but I still could not touch or kiss my baby girl. A few minutes later they told me to leave and come back later so they could put her on a vent. I went down to go tell mom what was going on. I stood outside her delivery room door for 5 minutes to get the courage to go in and tell her the news. When I walked in I didn’t have to say a word she could see in my eyes something was wrong. After an hour or so they allowed her to get up and out of bed so we wheeled her to the NICU where we both got to see her and hold her little hand. She had a feeding tube in her nose a vent in her mouth and two IV lines in her belly button. We had no clue at that time it was going to be a 2 month battle to live. We kept watching her grow for a month and she seemed to do better. After about a month she got off the vent for 3 or 4 days but was struggling so hard that she never slept. She also could not cry. She made faint little squeaks but never a cry. We would later find out her vocal cords were damaged by them intubating her over and over. They did test after test and could not find anything. About 3 days after they got her on a nasal canula the doctors told us something that tore my world apart. She had had a stroke. And the worst part is the doctors had missed it. It happened when she was about 2 weeks old while in the NICU. At this point we were transferred to Children’s hospital in Dallas. It was horrible. We couldn’t change her diapers there or touch her much nor could we hold her. It KILLED me to not be able to hold my daughter. They told us after about a week there that she had Campomelic Dysplaisia. They wanted to cut her rib cage out and put titanium ribs in her. They would have to re do this every few years as her chest would not grow on its own. She would need a trach done and be on a vent permanently just to stay alive. Also her brain would not grow or develop and if she knew anything other than mom or dad it would be a miracle. She would never walk, talk or do anything other than lay in bed and wait for another surgery. At this point we decided to go back to the more friendly hospital and make a decision on what we were going to do. It was gut wrenching and horrible to decide but we decided to pull her off the vent and let her be the angel she was. It was Monday the 9th we decided to do this. We made plans to pull her off on Saturday the 15th of april. We invited everyone in our family to come see her and hold her and kiss her. We were told by a NICU nurse about NILMDTS and while mom was on the fence I was all for it. My thoughts were if I didn’t want to see them I didn’t have too but if I did I had them and I’d never get another shot at this. That Saturday she was baptized and by 4 pm everyone had said goodbye. Mom and I waited until 8 to pull her off we wanted just a few more hours with her. We took turns holding her and kissing her and just being a family. The time came to pull her off and it went perfect for Hailey she didn’t suffer or gasp for air just went peacefully straight to heaven. It was our time to hurt and not hers. She had suffered enough and ask any parent and they will tell you they would take any pain in the world for their child not to suffer. Now mom and I try to heal and I don’t think I am doing a good job. Ill make another post about our amazing photographer and how well she did for us. Thanks for reading everyone I look forward to being an active part of this forum.
I miss her smile.
I miss her dark little hairs.
I miss the way she looked at me.
I miss the comfort in her eyes when mom and dad were near.
I miss her little hands and feet.
I miss her little nose.
I miss the innocence she brought to us.
I miss the feeling that I had when I looked into her eyes.
I miss the way she tried and tried when the doctors said she wouldn’t live.
I miss the courage that she had.
I miss the little mobile that she always wanted on.
I miss the little bears that kept her safe at night.
I miss the cries I never heard.
I miss the lessons never learned.
I miss the tea parties Ill never have.
I miss my little girl.