July 29th 2002 - Don't take a moment for granted
Our son Cameron was born and we were soon thrown into a whirlwind of emotions.
"Your son has a very serious heart condition and we need to take him to a hospital that can better care for him, he doesn't have much time and you need to get ready for transfer now". They handed me papers to fill out giving them permission to "keep him alive" a procedure full of tubes, needles and incubators.
I remember the feeling of my knees buckling in the hallway trying to frantically get ahold of somebody to get Eric . They gave me only 20 minutes to make a decision and said I could not wait for Eric to arrive or Cameron would not make it. They needed to prep him for transfer and insert the tube to keep open his PDA. He had already started to have seizures ( that is what prompted me to yell for help
At that time my sister was there and stayed with me the entire time until Eric finally got there.
They rushed Cameron down to UCSF and Cameron's fight for survival began.
I hadn't held Cameron because of all the tubes and wires in his little frail body. He had tubes coming out of mouth and needles out of his head.
Our families came down to SF and never left our sides. We were on the 15th floor at the PNICU and visitors were limited. BUT everyone camped in the little waiting room nearby. Our families got a very close B&B just across the street and all took turns making Kayli feel as normal as possible.
The first week was scary but the Dr's, Cardiologists and nurses made us feel so much better and always were so uplifting and answered all of our questions.
They explained to us what Cameron's heart defect was and what options we had.
1. Heart Transplant . Move to LA and hope for a heart ( most babies died waiting)
2. 3 stage palliative procedure ( 3 open heart surgeries )
3. Compassionate care ( take your baby home with no intervention and make them as comfortable as possible until they go to sleep and earn their wings)
We were SCARED and had no idea what to do. We couldn't just up and leave and have no idea if he would even get a heart, the chances were not in our favor.
3 open heart surgeries just seemed so invasive and the 20% chance of survival through the first surgery seemed so small and to not know what could happen in the OR or soon after. To cut open his little body, for him to be all alone and not know if we would ever see him again.
BUT to know we could take him home and give him UNCONDITIONAL LOVE as much possible make him comfortable and give him his last days with all of so close to him. The decision was unimaginable no matter what we chose.
Your mind is spinning every different direction. There are what if's and why.
There was tears that were uncontrollable and your heart just breaks not knowing what is the best decision. We had a baby boy we were ecstatic and Kayli had a baby brother. To know that all that will change with the decision we had first made. In my mind and heart I did not want to put my flawless beautiful baby boy through so much pain. Have his little chest cut wide open and somebody prodding at his tiny little heart. It just didn't seem right.
I felt like someone was choking me and I couldn't breath. What kind of mom would I be?. How on earth can I explain to people to my own little girl that her baby brother was gone. All based on a decision we made.
The Dr's took us on a tour of the PCICU to see some of the babies that had the surgeries. They gave us hope and introduced us to other parents. They told us they would take care of our baby and told us they would do everything in thier power to keep him alive.
We had to make a decision. 20% chance of survival seemed small BUT we had to give our baby a fighting chance. He was strong.
On July 29th our baby boy was put in my arms for the first time since his birth, I still had not been able to hear him cry. It was the most AMAZING feeling in the world. They let Kayli see her baby brother and all 4 of us were together for what could have been the last time. We talked to him and kissed him, we LOVED him.
It was time :
I stayed with him as long as I possibly could. They let me go into pre op with him until they gave him the sedative to fall asleep. I walked out and tried my hardest to imagine Cameron without any tubes, I etched his little chest into my mind because I knew it would never be the same. I walked out of that room praying to God as hard as I cold to stay with my baby. I needed to hold him again we needed to be a family. His sister needed him. We needed to play at the park and tuck our babies in at night. I could not go home without my baby.
The next few hours seemed like days. We knew it was all in the hands of God and the amazing surgeons.
The hours went by and all of our families waited close with us in the waiting room. The beeper went off and the nurses came in. Cameron MADE it through the surgery. They will be out in about an hour but there was some problems.
We heard the elevators open up and rushed to the door. There was our baby, he was ALIVE but barely hanging on.
After they got Cameron situated they said only Eric and I could go in.
I never even imagined what I was about to see.
Cameron laid there so lifelessly. They removed all his blankets and his little chest was cut wide open. I can see his little heart beating and his blood rushing around the very thin paper. I was SCARED. The alarms were beeping and people were scattered everywhere.
They explained to us that when they tried to close Cameron's chest in the OR it had swelled way to much. The extent of his defect was much worse than they expected. He literally had half a heart with nothing else. The left ventricle was completely gone the mitral valve and aortic valve were as well.
They said the next few hours were the most crucial. Our families filtered in just for a minute or two at a time.
We thought everything was going smooth UNTIL we were sitting in his room and alarms and beeping started going off like crazy. I heard Code Blue . Something wasn't right, it was our room, it was our son. They asked us to leave immediately. It was like a movie in slow motion. Crash carts , nurses and dr.'s were running everywhere yelling things but I couldn't hear , I felt helpless. They were escorting us out along with every other family in there ( nobody is allowed to stay when there is an emergency) I felt like getting sick. They literally had to push me out. I didn't want to leave my baby.
The nurse tried to talk to us but I still felt like I couldn't hear my mind was fuzzy and everything was blurry. I felt like I was outside my own body watching everything unfold. I was about to hear those words. I knew it was bad.
ABout an hour went by and we were finally allowed back in. The dr explained to us that Cameron was very sick and they said he only had a few hours to live. They told us that if we wanted any of our families to come and say goodbye we could.
I didn't believe this was happening. There was NO WAY I was saying goodbye to my son and there was NO WAY I was letting anyone else say goodbye to him either.
I felt betrayed. WHY are they telling me this. WHY us. WHY CAmeron. I did everything right when I was pregnant , he was perfect when he was born. This is NOT FAIR.
We asked our families to come in but not to give up . We did not want anyone to say goodbye we just wanted them to talk to Cameron , read to him and say prayers with him.
After everyone had came in and showed him as much possible love and tenderness they could Eric and I stayed by his side. Eevryone knew our wishes. DO NOT give up and don't say goodbye.
I did however go into shock at that time. I still couldn't here right, everything was blurry and I wouldn't speak a word to anyone. Not even Eric.
It was like a trance and I wasn't coming out of it apparently. Somehow my dad was able to get me to drink something ( I can remember bits and pieces ) and in that something the nurses dropped me a little help.
I woke up in a room alone but somehow found my way up to PCICU and was greeted by my family in the waiting room. Nobody EVER left.
They were all smiling and told me to go see Cameron and Eric.
I remember walking into the little room with Elmo painted on the outside. Everything seemed calm. The nurses were smiling and Eric was sitting there talking to Cam. He MADE it again. The Dr's and nurses were in total amazement. Only hours earlier they had given up hope. We NEVER did. He was out of the woods and his numbers went up and he was doing EXTREMELY well.
I believe I gave birth to the MOST AMAZING COURAGEOUS FIGHTER on this earth.
I believe our little boy made it through those moments because we never gave up, we never said goodbye, we read to him, sang to him and let him know we were there. It had been 7 days and we never left his side. From that moment on everything changed. He started to have color and they were able to go in and close his chest.
He sailed through the next few weeks with no setbacks. He thrived and everyone of our family members stayed in B&B's hotels and even slept in cars. We ll took turns from day1 until the moment we were told our baby boy was healthy enough to leave the hospital.
Over a month later. I finally got to hold my son with only 1 tube, it was in his little nose for nutrition.
Medications, NG tubes .. who cares we were bringing our baby home. We were going to get to tuck our children into their beds that night.
Our WARRIOR. Our MIRACLE. Our FIGHTER ...... He is amazing!!
Cameron Cale is coming home <3
