The following were posts I made online in 1996 and 2002 about my nephew, Brandon.
1/4/96 12:30AM
Over the past couple of months I've posted several times about the situation with my brother and his girlfriend. I recently started a thread about bedrest, c sections, and omphaloceles. On November 30, Anna (brother's girlfriend) had her first prenatal exam. She was 27-28 weeks pregnant, 16 1/2 years old, and still mostly in denial about the whole pregnancy, swearing she didn't want a baby. The doctor informed her she was 2 cm dilated and 50% effaced.
On December 7, there was an ultra-sound performed which showed the baby had a large omphalocele (his intestines, liver, stomach, and spleen had grown outside his body) and Anna was referred to the University of Iowa Hospitals. She was put on bedrest. The next day the doctors looked at the ultrasound and announced the baby had a big heart defect on top of everything and Anna was given a cordoscentisis (like an amnio, only riskier but results come quicker). Three days later, we found out the baby's chromosomes were fine, and he was a boy "Brandon". The next day, a heart specialist looked at the ultrasound and announced that there was no heart defect, but that the heart had tilted from the weight of all his intestines outside his body (pulling on the heart and stretching it). So, we went from "no hope" and the baby being a "no go for" baby to the baby being salvageable. Anna was told to stay on bedrest and that she would have to have a C section in order for Brandon to be born alive.
On December 20, the doctors said they might be able to let her leave the hospital, but discovered she was now 2-3 cm dilated and she should stay. Once again, on Saturday Dec. 23 the doctor said they might release her from the hospital. Two hours later, her cervix was checked and she was over 4 cm dilated. Anna was moved to labor and delivery immediately...and six hours later she was having contractions every 6 1/2 minutes (she didn't FEEL any of them, though) and she was dilating more so the doctors told her to decide- a c-section for a baby born at 30 weeks (with no steroid treatment for his lungs) or a vaginal birth which would give him no chance. The drugs to stop labor weren't working, and she went in for a c-section. Brandon was born at 7:24 PM weighing 3 lbs. 10 1/2 oz. and 17 1/2 inches long. He had hyaline membrane disease. His sac around the omphalocele was torn. He was taken to surgery two hours after birth. The doctors tried to put some of his organs back inside him but he has no abdominal cavity. Instead they repaired the sac (which protects the omphalocele) and said hopefully in 5-7 weeks they could start surgeries to repair the omphalocele.
But on Monday, Jan 1 the doctors came in saying that Brandon hasn't been urinating and his blood pressure was lowering and that they didn't think he could be saved. His liver was backing up with feces, his kidneys had shut down. he's having a reaction to mercury, which is in the substance they cover his omphalocele's sac with daily (to protect it) and unless he has dialysis soon his chances are gone. however, he may not live through dialysis and the doctors say his chances of even making it to his first surgery are very very little. Which means letting him go. Yesterday his blood pressure was SO low (>23-26 if that means anything) but now it's up a little. But it seems like prolonging this for him would only be more painful for him because his chances are so low! The doctors didn't honestly think he'd live two days, let alone 12, but here he is. And he's very sick. And we are all just emotional wrecks. Of course Anna wants to go and try for the 1 % chance but he's in SO much pain. They had to take him off morphine for several days for his blood pressure and he didn't have tylenol.
Where does it stop, when is someone supposed to realize that a baby needs to be let go or fought for?
-Sarah
Follow-Up (written in 2002)
I was there when Brandon was born. My brother was out of town for college and didn't make it back in time, so I went in for the delivery. It was the most surreal (sp) situation. I was there the first moment he was born and to this day I think I heard the only "cries" (murmurs) he ever made before he was put on a ventilator. The first few days Brandon was alive his color was normal but as time passed his head started swelling and he was a purple color by the time he passed away. There were times after he was taken off morphine that he would look like he was crying (opening his mouth) but of course he couldn't as he was on the respirator. The poor baby suffered so much. I can't really stop thinking about pain being the only thing he felt in his life. Because of this, for me there is no peace and I don't expect that there ever will be.
The entire family was able to hold Brandon the night he died. I remember being surprised at how strong I was, that I wasn't even crying. I had thought I would be more emotional. Later when I watched the tape from the camcorder of me holding Brandon that I had actually been crying. Looking back I still don't remember it. We left the hospital at 5 AM and went to eat at this restaurant and I remember how quiet it was outside and looking at the people at the restaurant thinking about how they had no idea what had just happened. Just thinking things like that. We had taken a sack of the books, blankets, and stuffed animals of Brandon's home and when I woke up the next morning I was face-to-face with his stuffed elephant and boy do I remember crying then. It was the worst thing that has ever happened to me.
We later learned that the symptoms that led to Brandon's death were caused by mercury poisoning and that he had 10 times the "safe" amount of mercury in his blood when he died.
Present Day
October is National Pregnancy and Infant Loss Awareness Month. I heard the story of David from the Bible who lost an infant and who, while the child was alive, fasted and took part in rituals in hopes that his son would survive. But once his baby son passed away, he immediately stopped fasting. When asked why, his response:
But now he is dead; why should I fast? Can I bring him back again? I shall go to him, but he shall not return to me.
Thia response being from 2 Samuel 12:23. 12/23 being Brandon's birthday.
I will never forget my baby nephew or stop remembering him during those 12 days he spent with us. I like to think he's with my grandma in Heaven watching over us and waiting, and I'm going to spend my life - like David - working to go to him. It's all I can really hope for.
10/3/11
7/31/11
Heaven and earth shall pass away: but my words shall not pass away. -Mark 13:31
My grandma passed away 26 years ago August 19th. She left behind a Bible that remains as it was when she used it, from the bookmark that proclaims "Alleluia!" to the scratch paper with Bible verses written in green marker. Nothing is out of place.
Inside, numerous verses are circled or underlined. They tell a lot about who my grandma was and what she was going through. She was one of the gentlest spirits I've ever known, who was lost after a long battle with cancer.
So this blog is dedicated to some of the passages she found important.
1. It is of the Lord's mercies that we are not consumed, because his compassions fail not. They are new every morning; great is thy faithfulness... Let us search and try our ways, and turn again to the Lord. -Lamentations 3:22-23;40
My grandma was a faithful woman who suffered a lot but found comfort in God.
2. Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost. -Romans 15:13
Grandma had hope she could get better, and lived a thankful life regardless of her prognosis.
3. For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. -2 Timothy 1:7
Though she was facing an uncertain future, my grandma did not allow herself to bee overcome by fear.
4. But he knoweth the way that I take: when he hath tried me, I shall come forth as gold. -Job 23:10
She was a brave fighter who, when facing the fight of her life, came forth as gold. She never waivered in her beliefs.
5. And be ye kind one to another, tenderhearted, forgiving one another, even as God for Christ's sake hath forgiven you. -Ephesians 4:32
This describes my grandma so well. It's who she was. Kind. Tenderhearted. Forgiving. She truly lived by the word.
6. Not that I speak to respect of want: for I have learned, in whatsoever state I am, therewith to be content. -Philippians 4:11
She knew she was dying but my grandma found a way to be content: have faith.
Nancy Lou Poisel, I will always love and remember you.
The last verse circled, Revelation 21:4
"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away."
My grandma passed away 26 years ago August 19th. She left behind a Bible that remains as it was when she used it, from the bookmark that proclaims "Alleluia!" to the scratch paper with Bible verses written in green marker. Nothing is out of place.
Inside, numerous verses are circled or underlined. They tell a lot about who my grandma was and what she was going through. She was one of the gentlest spirits I've ever known, who was lost after a long battle with cancer.
So this blog is dedicated to some of the passages she found important.
1. It is of the Lord's mercies that we are not consumed, because his compassions fail not. They are new every morning; great is thy faithfulness... Let us search and try our ways, and turn again to the Lord. -Lamentations 3:22-23;40
My grandma was a faithful woman who suffered a lot but found comfort in God.
2. Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost. -Romans 15:13
Grandma had hope she could get better, and lived a thankful life regardless of her prognosis.
3. For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. -2 Timothy 1:7
Though she was facing an uncertain future, my grandma did not allow herself to bee overcome by fear.
4. But he knoweth the way that I take: when he hath tried me, I shall come forth as gold. -Job 23:10
She was a brave fighter who, when facing the fight of her life, came forth as gold. She never waivered in her beliefs.
5. And be ye kind one to another, tenderhearted, forgiving one another, even as God for Christ's sake hath forgiven you. -Ephesians 4:32
This describes my grandma so well. It's who she was. Kind. Tenderhearted. Forgiving. She truly lived by the word.
6. Not that I speak to respect of want: for I have learned, in whatsoever state I am, therewith to be content. -Philippians 4:11
She knew she was dying but my grandma found a way to be content: have faith.
Nancy Lou Poisel, I will always love and remember you.
The last verse circled, Revelation 21:4
"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away."
7/29/11
Push and Look After You
My relationship with my sister Miya is the closest one I've had to anyone in my life. She is almost my daughter, legalities and labels aside. I co-parented with my mom, as the "lesser" parent admittedly, starting when Miya was 20 months old.
I would have been considered the "fun parent" those first 12 years. When Miya was 8 the song "Push" by Matchbox 20 came out. We used to giggle with excitement everytime it came on the radio. At the chorus, we'd gently push at each other.
Little did I know how much this song would come to define our relationship.
I stopped being the fun parent when Miya was 13 and she and I went to live on our own together. And things never were the same. We were extremely close but the change in my role was jarring for both of us. I didn't know what to do with a teenager. And the teenager knew that.
She ended up in an abusive relationship that produced my darling nephew. I fought her tooth and nail for three years to get out of that relationship. One time I was making a video to The Fray song "Look After You" and Miya came in saying that song reminded her of me.
2010 brought an end to something; I still can't define what. Miya had started physically attacking me, and hurting herself, and I did what I thought would get her help. But it didnt work out that way.
There are two songs that define our relationship: Push and Look After You. Push fits Miya to a t.
"i wanna push you around, well i will, well i will, i wanna push you down, well i will, i wanna take you for granted."
I don't say that to blame. The song is about anger and trust and "i don't know if i've ever been really loved by a hand that's touched me "
Miya is in a relationship where she feels belittled and less than human. She turned that around and took itt out on me; i made it easy for her by desperately trying to control the situation.
"if i dont say this now, i will surely break, as im leaving the one i want to take. forgive the urgency but hurry up and wait, my heart has started to separate."
I couldn't get this out of my head one of the last times I saw Miya and my nephew in October. It was the end and I knew it. I visited where they were staying because Miya had left her medicine behind.
I forced myself not to stay long. I was struggling with my own problems and my energy was fading. But leaving was one of the hardest things I"ve ever done. I wanted to know how to fix things. But I knew I couldn't.
I don't know where things will go from here but I do know those two songs will always hold a special and bittersweet feeling for me. You can't control how much you love someone, especially a child youve raised. But it doesn't have to be destructive.
And it's nor anymore.
"oh oh be my baby
i'll look after you..."
I would have been considered the "fun parent" those first 12 years. When Miya was 8 the song "Push" by Matchbox 20 came out. We used to giggle with excitement everytime it came on the radio. At the chorus, we'd gently push at each other.
Little did I know how much this song would come to define our relationship.
I stopped being the fun parent when Miya was 13 and she and I went to live on our own together. And things never were the same. We were extremely close but the change in my role was jarring for both of us. I didn't know what to do with a teenager. And the teenager knew that.
She ended up in an abusive relationship that produced my darling nephew. I fought her tooth and nail for three years to get out of that relationship. One time I was making a video to The Fray song "Look After You" and Miya came in saying that song reminded her of me.
2010 brought an end to something; I still can't define what. Miya had started physically attacking me, and hurting herself, and I did what I thought would get her help. But it didnt work out that way.
There are two songs that define our relationship: Push and Look After You. Push fits Miya to a t.
"i wanna push you around, well i will, well i will, i wanna push you down, well i will, i wanna take you for granted."
I don't say that to blame. The song is about anger and trust and "i don't know if i've ever been really loved by a hand that's touched me "
Miya is in a relationship where she feels belittled and less than human. She turned that around and took itt out on me; i made it easy for her by desperately trying to control the situation.
"if i dont say this now, i will surely break, as im leaving the one i want to take. forgive the urgency but hurry up and wait, my heart has started to separate."
I couldn't get this out of my head one of the last times I saw Miya and my nephew in October. It was the end and I knew it. I visited where they were staying because Miya had left her medicine behind.
I forced myself not to stay long. I was struggling with my own problems and my energy was fading. But leaving was one of the hardest things I"ve ever done. I wanted to know how to fix things. But I knew I couldn't.
I don't know where things will go from here but I do know those two songs will always hold a special and bittersweet feeling for me. You can't control how much you love someone, especially a child youve raised. But it doesn't have to be destructive.
And it's nor anymore.
"oh oh be my baby
i'll look after you..."
I forgot all about this blog and barely remember making the last two entries.
It's been a long nine months.
I'm a significantly different person than I was nine months ago. Things are far from perfect but the violent range of emotions from despair to impossible hope, is gone. I have anxiety. A lot of it. But it's bearable.
It seems I'm ready to start working on a real blog that doesnt revolve around the chaos in my life. The chaos doesn't exist. (I'm smiling right now).
So if you can live with my errors in punctuation and capitalization due to blogging from my phone, I'm gonna start blogging like a normal human being :)
It's been a long nine months.
I'm a significantly different person than I was nine months ago. Things are far from perfect but the violent range of emotions from despair to impossible hope, is gone. I have anxiety. A lot of it. But it's bearable.
It seems I'm ready to start working on a real blog that doesnt revolve around the chaos in my life. The chaos doesn't exist. (I'm smiling right now).
So if you can live with my errors in punctuation and capitalization due to blogging from my phone, I'm gonna start blogging like a normal human being :)
10/20/10
It`s all a lot of oysters but no pearls
If it wasnt so devastating i might be able to see the humor and irony in the current state of my life. However i spend my time alternating from state to state to state... Denial... Panic... Grief... Hopelessness... Survival mode...
I feel like ive lost not one but two children in a matter of days, along with part of my sanity and maybe my health. I dont see life as anything except alternate degrees of suffering. Its like that string of smilies they hold up for you at the hospital to measure your rate of pain. Rate 1 is a bright big smile, rate 10 a crumpled up tear-filled face. Thats how we live from day to day then we die.
It hardly seems worth it.
I experienced what is clinically referred to as a `mixed episode` but i prefer to call it a `major f-ing freak out`. An influx of a million thoughts and emotions at once, like being buried alive in my own head. Cant breathe, want to jump out of your body and just STOP hurting. So theres a knife that looks sharp and thats when things changed for me forever.
I could have hurt myself, ive only got some nasty bruises as evidence of the struggle against my mind. And i feel like im a broken and useless person. I shouldnt be here and yet i am. I can take pills to numb my mind and to be someone im not naturally meant to be. Im this way because i dont belong in this world. I believe that.
But i dont want to cease to exist so i will take the pills and i will be someone other than me so that i dont have to die yet. It just seems futile considering we all die anyway. I just cant be ME and survive anymore so i have to adjust. It sucks a little.
People just dont understand this hell when your mind is at war with itself. Ive been judged and rejected because i wanted to survive as myself but it was all for nothing. The pills will kill me in a different way but i dont want to leave just yet. There may be something good in this haystack. One never knows...
I feel like ive lost not one but two children in a matter of days, along with part of my sanity and maybe my health. I dont see life as anything except alternate degrees of suffering. Its like that string of smilies they hold up for you at the hospital to measure your rate of pain. Rate 1 is a bright big smile, rate 10 a crumpled up tear-filled face. Thats how we live from day to day then we die.
It hardly seems worth it.
I experienced what is clinically referred to as a `mixed episode` but i prefer to call it a `major f-ing freak out`. An influx of a million thoughts and emotions at once, like being buried alive in my own head. Cant breathe, want to jump out of your body and just STOP hurting. So theres a knife that looks sharp and thats when things changed for me forever.
I could have hurt myself, ive only got some nasty bruises as evidence of the struggle against my mind. And i feel like im a broken and useless person. I shouldnt be here and yet i am. I can take pills to numb my mind and to be someone im not naturally meant to be. Im this way because i dont belong in this world. I believe that.
But i dont want to cease to exist so i will take the pills and i will be someone other than me so that i dont have to die yet. It just seems futile considering we all die anyway. I just cant be ME and survive anymore so i have to adjust. It sucks a little.
People just dont understand this hell when your mind is at war with itself. Ive been judged and rejected because i wanted to survive as myself but it was all for nothing. The pills will kill me in a different way but i dont want to leave just yet. There may be something good in this haystack. One never knows...
8/2/10
6 months later
it's been almost 6 months since my last blog entry and i don't know how but it seems i've gone from one hell into an entirely different one. at the start of the year i feared my own state of mind, having spent 3 years frantically doing my best to avoid the chaos going on around me. what i found was that you can only shut things out for so long before they break down the door and completely bury you. and that's how i was feeling back then.
and so i had to start sifting through the mess, actually put forth the effort to make changes and do what i could to try and make things better. where i'm at now is the realization that probably sent me into seclusion a few years ago- it seems no matter what i do, things just get worse. & i was seeing that then, and i couldn't handle being the cause of anymore pain. i carry so much guilt for so many things, and there is nobody in my life to consistently remind me that we do our best in unfortunate situations and that most everyone has good intentions especially when it comes to family.
that's why i don't understand how trying to help someone i love has led to that person physically harming themselves and putting themselves at risk for actual institutionalization-- which puts me at risk of losing the child who i have spent the last year parenting. things would have been better off if i'd nailed a few extra boards to that door and continued to close my eyes and ears. or better yet, if i'd have given in any of those times when i felt like it would be best for everyone to remove myself from this world.
i know that i don't control how anyone responds to decisions i make but when the choices i make lead to something so severe, i can't help but question my purpose in the equation and why it is that i'm always the one who seems to hurt the people i try to help. and that's really fucked up.
and so i had to start sifting through the mess, actually put forth the effort to make changes and do what i could to try and make things better. where i'm at now is the realization that probably sent me into seclusion a few years ago- it seems no matter what i do, things just get worse. & i was seeing that then, and i couldn't handle being the cause of anymore pain. i carry so much guilt for so many things, and there is nobody in my life to consistently remind me that we do our best in unfortunate situations and that most everyone has good intentions especially when it comes to family.
that's why i don't understand how trying to help someone i love has led to that person physically harming themselves and putting themselves at risk for actual institutionalization-- which puts me at risk of losing the child who i have spent the last year parenting. things would have been better off if i'd nailed a few extra boards to that door and continued to close my eyes and ears. or better yet, if i'd have given in any of those times when i felt like it would be best for everyone to remove myself from this world.
i know that i don't control how anyone responds to decisions i make but when the choices i make lead to something so severe, i can't help but question my purpose in the equation and why it is that i'm always the one who seems to hurt the people i try to help. and that's really fucked up.
2/10/10
tardy tuesday
(or... "it's still tuesday in oregon")
song.of.the.day
---)))how you remind me (((---
these five words in my head scream
"are we having fun yet?"
quote.of.the.day
"those who try to lead the people can only do so by following the mob" ~oscar wilde
song.of.the.day
---)))how you remind me (((---
these five words in my head scream
"are we having fun yet?"
quote.of.the.day
"those who try to lead the people can only do so by following the mob" ~oscar wilde
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