"Forgiveness is letting go of trying to change what has happened".
Abby's death is a complete shock, not only to me and my family but to her entire medical team at Childrens Hospital. Even though the possibility of her death always lingered, we thought we escaped it! Each day we spent with Abby, her nurses and doctors would happily report that she was doing so well! They always had good things to say about her progress, despite her breathing spells. And they would comment on how feisty she was! (just like her Godmother, my sister, Joanie-Lynn). I believe that Abby used her feisty personality to live as long as she did. Abby's NICU team were simply amazing. Abby brought smiles to their faces each and every day and they commented frequently about this. Abby was such a little sweet baby. They told us how much Abby made them smile and how such a good baby she was. Sometimes I thought to myself, "yeah, you say that to all of your parents", but I do actually believe them!!
Roberto and I tried, we really did, to focus on the positive feedback given to us, even though we could see her struggles. We knew that her life was in jeopardy and we wanted to act fast. Babies with CD are pre-dispositioned to have tracheostomies and we even tried to get the surgery before the 22nd. However, the surgery was scheduled at the latest to be the 23rd, but thankfully they were able to get her in early. I was so relieved and happy because it hurt so much to see her suffer. We always feared that Abby's death potentially could have resulted from the trache istelf while at home. Never did it occur to us that it could happen during the actual procedure. The word shock is truly an understatement to describe how we feel, since tracheostomies are routine at CHB and are performed daily. Babies and children travel all across the world to CHB to receive this procedure. But the risks are there, and nothing is fool proof.
Two weeks ago, Roberto and I made another venture into Childrens' Hospital to speak with Abby's doctors and surgeons to discuss what actually happened to her the day she died. This was our second trip since her surgeons couldn't attend the first meeting.
We had strong, mixed emotions about going into CHB. The meeting was necessary and vital on so many levels. Roberto and I felt that this was essential toward our healing process. We needed to face our fears. We needed to face our fears of the medical persons who were responsible for Abby's life. AND we needed to face our fears of a hospital that in the future we may need to walk into their doors once again for our other three children.
Present at this meeting with Roberto and I were her social worker, Abby's two ORL doctors (they performed the tracheostomy, a Chief Surgeon and his Fellow), the NICU Director and her NICU doctor. (I'd rather not name her doctors, since I would like to respect their privacy).
I had butterflies as we entered the NICU floor. Those butterflies turned into sheer terror when we were greeted by the social worker when she told us that the team was waiting for us. I was surprised by having those terror feelings, but then again, it was the same exact feelings that I had on March 22nd, the day when her surgeons came into the consult room to tell us of Abby's response to the surgery. An un-welcomed instant flashback.
We took a few moments to gather ourselves, sipped on some water, and entered the room. Instantly Abby's NICU doctor and I embraced. It felt good to see her again. I don't know how to explain it, but I feel connected to her. She and her NICU staff knew Abby. Most of our family and friends didn't get to meet Abby but the staff were her peeps! They witnessed and experienced her life!! They are the only few who could describe her mannerisms, personality and temperament. Abby was such a sweet old soul and I enjoy reminiscing Abby with them.
We then shook hands with the rest of the team and sat down. Abby's NICU Doctor started the meeting. She expressed that she was glad that we were there to discuss and question the events that took place. She and the rest of the group acknowledged that this was very difficult for us, which in retrospect, the beginning of the meeting was the toughest. Once we sat down, my heart rate slowed back down and I could somewhat breathe again. She further exclaimed that this meeting was just as important for Roberto and I as it was for them. All of us needed closure. She asked if we had any specific questions and how did we want to proceed and go on with the meeting.
I replied that I didn't really have any specific questions and would just like to hear the events that took place. I also wanted to express my own thoughts and feelings before we got started. I expressed the following (probably not verbatim but close enough) "I just want to share my feelings about what has happened. I have peace over what has happened with Abby. I have peace because I believe in God. I believe that God has a plan which is one that we cannot control. We fought very hard for Abby but God had a different plan for her. And with that, I forgive you for what has happened. For the record, we felt forgiveness immediately the day she died, but we were in our own space and couldn't express it that day in the OR. I really wanted to, but just couldn't. But even though we have peace, do we hold you responsible for Abby's life? Yes, we do hold you responsible. But forgiveness follows immediately. We are here to find out what happened because we do have questions about her surgery. I forgive for me. Because I believe in God".
Abby's surgeons listened and then replied, that on behalf of himself and his Fellow, that that day was the worst day of their professional careers. He also acknowledged responsibility for Abby's life and acknowledged that not only did we trust them, but that their NICU staff trusted them. The day she died, they went up to the NICU to speak with her nurses and team to discuss the horrible news, since the NICU considered Abby their baby as much as our own.
His Fellow further commented that he thinks about Abby at least twice a day.
We knew that they felt horrible. How could they not? And I knew that they were genuine when speaking of their thoughts and feelings. Looking back at those moments when they had to give us the terrible update of her surgery makes me shiver. Someday I will write about those moments, but for now, I will tell you that it felt like being in a nightmare, one that I am still waiting to wake up from.
I told the Fellow that knowing that he thinks of Abby daily made me happy. Because it is thru those memories that help me keep Abby's spirit alive.
Abby had her g-tube (feeding tube) put in place and that went smoothly. The ORL team was present since they had to intubate her for it. The g-tube doctors left the OR and then the ORL team took over and prepared her stoma. Then the horror started. It is my understanding that when her surgeons removed the intubation tube and inserted her trache tube, Abby de-sated. She clamped down on her airway and it became obstructed, due to her tracheomalacia (floppy windpipe). This is the very reason why she needed the tracheostomy in the first place!
What happened after that was chaos. But I do know that Abby's airway completely collapsed, due to what they believe, from lack of natural air pressure. They tried to provide artificial pressure from the bag, but this wasn't effective. They also gave multiple attempts of replacing the intubation tube and trache tube, giving her x-rays to confirm their location. As a result of these numerous attempts, she also ended up with pneumothorax and a collapsed lung. All awhile, her heart giving out because it was all too much for her to handle.
We were told that there were at least 20 doctors in the OR trying to save my baby's life. She died at 2:45pm.
Roberto and I assumed that they tried to save Abby, but after hearing the specific details of what happened made us believe that they fought for her. I picture boxers in a ring match!
And hearing all of this confirmed one thing. My faith.
As hard and as much as they tried to protect Abby with their special skills, medical interventions and sweat, Abby made up her mind and wasn't going to change it. God's plan was in action. No doctor could have prevented it. And they knew this. They told us that Abby's response to the surgery was not typical!! All of their efforts should have rendered a different outcome.
I wish that was the case....
I am able to sleep at night. I am able to do so because we did everything we humanly could to protect Abby's life.
People tell me that I am so strong. That I am amazing. Well, I don't feel strong nor do I feel amazing. But I will say this. What we did was amazing!! We chose life!! No matter what, choose life!!!
This experience cannot be lived alone and so daily I ask God to carry me through this. HE does.
Before we left the meeting with Abby's medical staff, I revealed to them that Roberto and I prayed for them. We prayed for them the day Abby met Jesus. And we continue to pray for them.
It is now two months today since Abby's passing and we are just as blown away that Abby never woke up from her surgery today as we were two months ago.
We still receive mail in Abby's name. We still make phone calls on her behalf. We make e-mails on her behalf. We are still in contact with administration folks at the hospital for various reasons. Roberto had been asked "how's the baby" from work acquaintances for a month following all of this. We received her death certificate recently. When asked how many children do you have, I reply four. I am considered an angel mom, because I have a baby in heaven.
As difficult as these constant reminders are, I wouldn't change it. Abby is my daughter, my baby, my little Saint. With all of my pain, tears and smiles, this is my life, these are my shoes and this is what God has asked of me.
We then shook hands with the rest of the team and sat down. Abby's NICU Doctor started the meeting. She expressed that she was glad that we were there to discuss and question the events that took place. She and the rest of the group acknowledged that this was very difficult for us, which in retrospect, the beginning of the meeting was the toughest. Once we sat down, my heart rate slowed back down and I could somewhat breathe again. She further exclaimed that this meeting was just as important for Roberto and I as it was for them. All of us needed closure. She asked if we had any specific questions and how did we want to proceed and go on with the meeting.
I replied that I didn't really have any specific questions and would just like to hear the events that took place. I also wanted to express my own thoughts and feelings before we got started. I expressed the following (probably not verbatim but close enough) "I just want to share my feelings about what has happened. I have peace over what has happened with Abby. I have peace because I believe in God. I believe that God has a plan which is one that we cannot control. We fought very hard for Abby but God had a different plan for her. And with that, I forgive you for what has happened. For the record, we felt forgiveness immediately the day she died, but we were in our own space and couldn't express it that day in the OR. I really wanted to, but just couldn't. But even though we have peace, do we hold you responsible for Abby's life? Yes, we do hold you responsible. But forgiveness follows immediately. We are here to find out what happened because we do have questions about her surgery. I forgive for me. Because I believe in God".
Abby's surgeons listened and then replied, that on behalf of himself and his Fellow, that that day was the worst day of their professional careers. He also acknowledged responsibility for Abby's life and acknowledged that not only did we trust them, but that their NICU staff trusted them. The day she died, they went up to the NICU to speak with her nurses and team to discuss the horrible news, since the NICU considered Abby their baby as much as our own.
His Fellow further commented that he thinks about Abby at least twice a day.
We knew that they felt horrible. How could they not? And I knew that they were genuine when speaking of their thoughts and feelings. Looking back at those moments when they had to give us the terrible update of her surgery makes me shiver. Someday I will write about those moments, but for now, I will tell you that it felt like being in a nightmare, one that I am still waiting to wake up from.
I told the Fellow that knowing that he thinks of Abby daily made me happy. Because it is thru those memories that help me keep Abby's spirit alive.
We then learned of the details of her surgery.
Abby had her g-tube (feeding tube) put in place and that went smoothly. The ORL team was present since they had to intubate her for it. The g-tube doctors left the OR and then the ORL team took over and prepared her stoma. Then the horror started. It is my understanding that when her surgeons removed the intubation tube and inserted her trache tube, Abby de-sated. She clamped down on her airway and it became obstructed, due to her tracheomalacia (floppy windpipe). This is the very reason why she needed the tracheostomy in the first place!
What happened after that was chaos. But I do know that Abby's airway completely collapsed, due to what they believe, from lack of natural air pressure. They tried to provide artificial pressure from the bag, but this wasn't effective. They also gave multiple attempts of replacing the intubation tube and trache tube, giving her x-rays to confirm their location. As a result of these numerous attempts, she also ended up with pneumothorax and a collapsed lung. All awhile, her heart giving out because it was all too much for her to handle.
We were told that there were at least 20 doctors in the OR trying to save my baby's life. She died at 2:45pm.
Roberto and I assumed that they tried to save Abby, but after hearing the specific details of what happened made us believe that they fought for her. I picture boxers in a ring match!
And hearing all of this confirmed one thing. My faith.
As hard and as much as they tried to protect Abby with their special skills, medical interventions and sweat, Abby made up her mind and wasn't going to change it. God's plan was in action. No doctor could have prevented it. And they knew this. They told us that Abby's response to the surgery was not typical!! All of their efforts should have rendered a different outcome.
I wish that was the case....
I am able to sleep at night. I am able to do so because we did everything we humanly could to protect Abby's life.
People tell me that I am so strong. That I am amazing. Well, I don't feel strong nor do I feel amazing. But I will say this. What we did was amazing!! We chose life!! No matter what, choose life!!!
This experience cannot be lived alone and so daily I ask God to carry me through this. HE does.
Before we left the meeting with Abby's medical staff, I revealed to them that Roberto and I prayed for them. We prayed for them the day Abby met Jesus. And we continue to pray for them.
"Forgiveness is letting go of trying to change what has happened".
It is now two months today since Abby's passing and we are just as blown away that Abby never woke up from her surgery today as we were two months ago.
We still receive mail in Abby's name. We still make phone calls on her behalf. We make e-mails on her behalf. We are still in contact with administration folks at the hospital for various reasons. Roberto had been asked "how's the baby" from work acquaintances for a month following all of this. We received her death certificate recently. When asked how many children do you have, I reply four. I am considered an angel mom, because I have a baby in heaven.
The intensity has lessened, but the reality of it is just as raw as the day it happened.
As difficult as these constant reminders are, I wouldn't change it. Abby is my daughter, my baby, my little Saint. With all of my pain, tears and smiles, this is my life, these are my shoes and this is what God has asked of me.
Aimee,
ReplyDeleteyour words are truly amazing and beautiful. You are amazing. "As difficult as these constant reminders are, I wouldn't change it. Abby is my daughter, my baby, my little Saint. With all of my pain, tears and smiles, this is my life, these are my shoes and this is what God has asked of me." this is NOTHING but the truth. God chose for us to have CD babies and even though there is so much pain, tears and smiles there is nothing i would change from having brayden and spending the days of his lives that i did with him. I cried when i read this about Abby. Im proud of you, you are strong.
Aimee, I love your beautiful spirit. You gave Abby so much, starting with "life" and then you fought so hard for her, as did the medical team. Surely there must have been another plan in place, and that's so hard to accept at times, but we are promised that one day we will have no more questions! I'm sitting here crying, my family is looking at me... I told them that one of Nicolas' family, our family, whom we've never met, went to heaven...my ten year old got super sad for a minute then said we CANNOT forget to find her once we get there! Praying for you guys as always...
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