I go on vacation for the week. I leave my home because I must. I don't want to be sad and for some reason staying at home makes me sad. It's when I celebrate that the twins ever existed. I always have the two polar bears with me and I take pictures of them wherever I am.
We always release two b-day balloons. I write there names and ages on the balloons. I take pictures and watch the balloons till they get swallowed up by the clouds.
Every manager I work for I tell them during the interview that every year I must be off that week no matter what. I usually explain and it's never been a problem, people have been very understanding.
Early on one year, we went o Glacier National Park. My husband is late for everything so we got a late start on there b-day. We were hiking to hidden lake. The park was still open in late Oct. because the first snow had not fallen. At the bottom of the mountain it was sunny but chilly. Coming from a warmer part of the country we had lots of layers on. For some reason I chose to add some non-helium balloons. As we walked higher it started getting hot and we started removing layers. When he got to Hidden Lake it was sunny and beautiful. We were all alone (everyone else had enough sense to be at the bottom already). Very quickly it got dark and windy, then it started snowing. This all happened in 5 min. I quickly released the balloons so we could get back down the mountain before total darkness. This was the time when bears are looking for food before they go into hibernation . Well those extra balloons brought down the entire bunch and they fell into the lake. We watched as they drifted to the side with no shore, just a cliff. I was upset because the balloons would not go into the clouds. I was more worried about being eaten by a bear and said, we had to go. My husband keeps watching, not wanting to leave. The wind changed and started pushing the balloons back the other way. He ran to the other end and got the balloons, it's a small lake. We quickly tore off the extra balloons and release the b-day ones. With the wind they quickly made it to the clouds and we left. It's still snowing and even darker as we try to follow that path down. That was hopeless so we followed the river. My husband had bought the biggest can of bear spray he could find and they told us to make noise because the bears did not really want to see us anymore than we wanted to see them. Well the only song we knew that we could sing loud and for a long time was "Old McDonald had a Farm" and we sand it at the top of our lungs all the way down. When we got back around 6 PM it was nice and sunny at the bottom. :-) It was a fabulous b-day for all.
Monday, February 3, 2014
The Polar Bears
In the NICU a nurse gave my son a polar bear. The toy was so appropriate, he was so white, with black looking eyes, and he was huge. Then there was the snow blanket. That started a collection. For x-mas and beyond I have received gifts of polar bears. We have far too many polar bears now. What would have been his room is full of them and it's called the polar bear room. Of course it's painted snow white also! But back then I just had the one bear.
When you are depressed different things upset you. One day I was thinking about the twin we also lost during this pregnancy. The actual miscarriage was at 13 - 14 weeks. I focused on him (we decided he would have been a boy also) and I was distressed that no one ever seem to remember the other baby that never was. I was alone, at home. It was about 6 weeks after baby boy was born. I had been upstairs in his room, as I often was. I came down and walked into my bedroom, there on the floor was a very small white polar bear. I looked around and to this day we have no idea where that bear came from but I knew it was the twin's bear. They have never been apart since that day.
When you are depressed different things upset you. One day I was thinking about the twin we also lost during this pregnancy. The actual miscarriage was at 13 - 14 weeks. I focused on him (we decided he would have been a boy also) and I was distressed that no one ever seem to remember the other baby that never was. I was alone, at home. It was about 6 weeks after baby boy was born. I had been upstairs in his room, as I often was. I came down and walked into my bedroom, there on the floor was a very small white polar bear. I looked around and to this day we have no idea where that bear came from but I knew it was the twin's bear. They have never been apart since that day.
Sunday, February 2, 2014
Grieving
When you are on the maternity ward and you don't have a baby they put something on your door so everyone knows. This is to prevent insensitive questions, like someone coming in to ask where your baby is. Everyone stays away for the most part and your door stays closed (I guess so you don't hear the babies). An older lady came to see me. She was a volunteer and she had lost a child 40 - 60 yrs ago. I could feel her pain, still. I wish I could thank her because what she told me was so simple and yet so profound. I had to let myself grieve. As she puts it, back in the old days people would say, "time to move on". Well I have news for her, people still say that. They are well meaning, they are hoping to bring you out of the fog. The problem is, it does not work. It's like putting a 2" bandage over a 12" knife wound.
I had to be very understanding with my family and very uncompromising. I took that lady's advice and let myself grieve. I refused to participate in gatherings I felt would upset me. Once we went to someone's b-day dinner at the same place we had went while I was pregnant and they were seated at the same table, I ran out crying and we left. By then my husband understood and did not say I need to move on or get over it. He just drove me home.
Our first Christmas came just 2 months after baby boy died and I refused to do anything for x-mas. Everyone whined but I told them, to go without me and have fun for all of us. I knew I would ruin the day for everyone by trying to go out and pretend nothing was wrong. I convinced them all I would just fine, it was what I wanted. It all worked out fine they had a good time. I went up to the room that would have been his bedroom and looked through his things and cried a lot, it was what I wanted to do. I thought that might be the day I look at his ashes but it wasn't and after 12 yrs I figure that day will never come. But that's OK, there is no rule about looking at ashes.
I saw a counselor for 3 yrs and was on and off different meds for 3 yrs. Then one day I stopped taking them, I told the counselor I was done and that was that. if I had not done all these things until I was ready to move on, I can't imagine where I would be today. I'm not sure I would have survived intact. The woman who came to see me was trying to say if I did not let myself grieve till I was ready I would grieve in the worst way, forever, like she still does.
Everyone is different, some will take longer and some will be shorter. It took me 3 years of grieving to move on. :-) "Move on" is a good phrase and "get over it" is a bad one. You never get over losing a child, never. You grieve daily until you can find a way to cope and this allows you to move on, to grieve less. I also took great pleasure in the small things I did get to enjoy with him, all that kicking up to the very end. The warm showers, the waves, and we made it to the end, he was born alive. It's the most you can ask for when birth, means death.
I had to be very understanding with my family and very uncompromising. I took that lady's advice and let myself grieve. I refused to participate in gatherings I felt would upset me. Once we went to someone's b-day dinner at the same place we had went while I was pregnant and they were seated at the same table, I ran out crying and we left. By then my husband understood and did not say I need to move on or get over it. He just drove me home.
Our first Christmas came just 2 months after baby boy died and I refused to do anything for x-mas. Everyone whined but I told them, to go without me and have fun for all of us. I knew I would ruin the day for everyone by trying to go out and pretend nothing was wrong. I convinced them all I would just fine, it was what I wanted. It all worked out fine they had a good time. I went up to the room that would have been his bedroom and looked through his things and cried a lot, it was what I wanted to do. I thought that might be the day I look at his ashes but it wasn't and after 12 yrs I figure that day will never come. But that's OK, there is no rule about looking at ashes.
I saw a counselor for 3 yrs and was on and off different meds for 3 yrs. Then one day I stopped taking them, I told the counselor I was done and that was that. if I had not done all these things until I was ready to move on, I can't imagine where I would be today. I'm not sure I would have survived intact. The woman who came to see me was trying to say if I did not let myself grieve till I was ready I would grieve in the worst way, forever, like she still does.
Everyone is different, some will take longer and some will be shorter. It took me 3 years of grieving to move on. :-) "Move on" is a good phrase and "get over it" is a bad one. You never get over losing a child, never. You grieve daily until you can find a way to cope and this allows you to move on, to grieve less. I also took great pleasure in the small things I did get to enjoy with him, all that kicking up to the very end. The warm showers, the waves, and we made it to the end, he was born alive. It's the most you can ask for when birth, means death.
Regrets
After we had been in that room for some time, someone came in and asked if we would consent to an autopsy. I was too distraught at that moment and said, no.
All that planning and I never considered an autopsy. I wished the Drs had asked me while I was pregnant but I know it was just too much for them. I would have said, yes and then I would not have had any regrets.
I have no regrets about my pregnancy and the choices I made with the exception of the autopsy.
My son would have been 12 this past Oct (2013). Medicine has come a long way in these 12 years and it would not have happened without autopsy's. If you are facing something similar, please consider an autopsy.
All that planning and I never considered an autopsy. I wished the Drs had asked me while I was pregnant but I know it was just too much for them. I would have said, yes and then I would not have had any regrets.
I have no regrets about my pregnancy and the choices I made with the exception of the autopsy.
My son would have been 12 this past Oct (2013). Medicine has come a long way in these 12 years and it would not have happened without autopsy's. If you are facing something similar, please consider an autopsy.
He's gone
I worried for nothing, my husband moved his arm slightly and the tube came out, we freaked out. Not knowing what to do we just looked stricken and they asked if we wanted him resuscitated.
We had said all along we did not want him resuscitated. It was over, he was gone.
The neonatologist came to us and told us she had resuscitated him before so he would be alive when we got there. It seems she was confessing. We thanked her. With grieving parents you never know how something like that would go. Months later I wrote her a letter telling her how very grateful we were that she had gone against our wishes so we could hold him while he was alive. We could tell it meant a lot to her that we said that.
They very quickly took us to a room so we could be alone with him, away from everyone.
We had said all along we did not want him resuscitated. It was over, he was gone.
The neonatologist came to us and told us she had resuscitated him before so he would be alive when we got there. It seems she was confessing. We thanked her. With grieving parents you never know how something like that would go. Months later I wrote her a letter telling her how very grateful we were that she had gone against our wishes so we could hold him while he was alive. We could tell it meant a lot to her that we said that.
They very quickly took us to a room so we could be alone with him, away from everyone.
Baby boy
We went to the NICU. There were a lot of babies, they were so small and frail looking. Then there was my son, he was huge, he looked like a very short line backer. His shoulders were very wide and his chest was big. He did not look abnormal, he looked like a body builder.
I brought 3 outfits to the hospital and the only one that would fit him was the light grey one with the silly beret. I dressed him and wrapped him in his snow white blanket. I noticed a small Polar bear, like a beanie baby. One of the nurses had chose it for him. It was fitting, he was very white with black looking eyes and black looking hair. His hair was long and as I touched it I saw something, I looked at his hair closer and saw that while the first .5 inch was black the other .5 inch was red, like mine. He got his hair from both of us. We took many pictures and we laughed at the dumb beret.
I did not realize he would be drugged and it made me sad. But they told me he would have been in pain because he could not breath. While I wanted him to open his eyes and look at me again I never wanted him to feel any pain. We took turns holding him. I then realized I was going to have to decide when to turn off the machine or whatever they do. I was horrified, it never occurred to me I would have to do that and I did not think I could.
I brought 3 outfits to the hospital and the only one that would fit him was the light grey one with the silly beret. I dressed him and wrapped him in his snow white blanket. I noticed a small Polar bear, like a beanie baby. One of the nurses had chose it for him. It was fitting, he was very white with black looking eyes and black looking hair. His hair was long and as I touched it I saw something, I looked at his hair closer and saw that while the first .5 inch was black the other .5 inch was red, like mine. He got his hair from both of us. We took many pictures and we laughed at the dumb beret.
I did not realize he would be drugged and it made me sad. But they told me he would have been in pain because he could not breath. While I wanted him to open his eyes and look at me again I never wanted him to feel any pain. We took turns holding him. I then realized I was going to have to decide when to turn off the machine or whatever they do. I was horrified, it never occurred to me I would have to do that and I did not think I could.
Saturday, February 1, 2014
Two hours till verdict
Baby boy was 8 lbs 10.5 oz. That was an enormous baby for me to deliver and it took them exactly 2 hrs to sew me back together. I was just getting into the shower when the neonatologist and some other specialist came in to tell me it was even worse than they thought. He had everything (CDH and TOF) they saw plus complete atresia of the pulmonary valve.
"TOF/PA is relatively rare, with a reported incidence of 0.7 per 10,000 live births in the Baltimore-Washington Infant Study [1]. While TOF is the most common cyanotic congenital heart lesion, TOF/PA/MAPCAs is considered to be the most extreme form of TOF and accounts for approximately one-fifth of all cases of TOF [2].
So that was it, no chance and no hope. It was what I had spent my pregnancy preparing for so the while news distressed me it did not shock me.
"TOF/PA is relatively rare, with a reported incidence of 0.7 per 10,000 live births in the Baltimore-Washington Infant Study [1]. While TOF is the most common cyanotic congenital heart lesion, TOF/PA/MAPCAs is considered to be the most extreme form of TOF and accounts for approximately one-fifth of all cases of TOF [2].
ANATOMY
Tetralogy of Fallot with pulmonary valve atresia (TOF/PA) is a complex lesion that includes characteristic features of TOF (anterior malaligned ventricular septal defect and overriding aorta) with pulmonary valve atresia. Pulmonary valve atresia may be limited to the valve itself (membranous pulmonary valve atresia) or involve the subpulmonary infundibulum (muscular pulmonary valve atresia), and results in no antegrade flow from the right ventricle to the pulmonary artery"So that was it, no chance and no hope. It was what I had spent my pregnancy preparing for so the while news distressed me it did not shock me.
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