Blue light, white sheets
the white bear, the tan bear
a yellow duck, and white lamb
and one small loved one
Crackle, crackle
put, put, put, put, put, put
beeeeeeeeep, beep, beep, beep
silence, noises adjusted to
Sticky skin, clings to line
vaseline like coating to keep moist
hard form, bone and skull
warm air and material
A place devoid of normal smells
soap and alcohol, fresh washed
blankets and invisible oxygen
clean and devoid of normal smells
Dry mouth, sour with worry
bitter with anger and dread
joyful and sweet with the name of my child
no taste to compare to
More than just a sight of a baby in
a box of plastic
The NICU is expereinced in all ways
only if you pay attention
Friday, April 10, 2009
Is today the day?
Is today the day I will
lose you, I hope not
Is today, the day I will
gain you, keep you, hope so
The staccato crackling of the vent
surrounds you as you let it breathe
for you, keeping you here this
minute.
lose you, I hope not
Is today, the day I will
gain you, keep you, hope so
The staccato crackling of the vent
surrounds you as you let it breathe
for you, keeping you here this
minute.
Tell Me...
Tell me honestly
let me know
the plan, the
expectation
Tell me your
heart, what do
you believe?
Tell me please.
But don't crush
my hopes for the sake
of your numbers
and statistics
Babies die, of course
my child is real sick
naturally. Is she
dying? Only God
knows that.
You have the power to
help me cope and
accept, and you have
the ability to encourage
me to give up
Stop it, believe my
child will live, have
faith and hope for today
is a day
let me know
the plan, the
expectation
Tell me your
heart, what do
you believe?
Tell me please.
But don't crush
my hopes for the sake
of your numbers
and statistics
Babies die, of course
my child is real sick
naturally. Is she
dying? Only God
knows that.
You have the power to
help me cope and
accept, and you have
the ability to encourage
me to give up
Stop it, believe my
child will live, have
faith and hope for today
is a day
Baby Steps
Each hour we make almost invisible steps
the smallest bit of advance
baby steps, but measures on a premature foot
not even the foot, but the toe, the littlest toe
You have to watch to see the progress
you have to attend to know the advance
blink and you will miss it
so you sit and watch and worry
Progress, decline, stabilize, and repeat
day in and day out, constant
it is the constant of this world
the constancy of change, a paradox
Remain too long with no change and they worry
change too much and they fret
there is a rhythm to the worry and relief
like the rize and fall of the waves
crashing on the shore with regularity
the constancy of change
So today I will expect that things will
be different, new, unexpected
I will remember that it is like that
just for today for tomorrow
this too will change
the smallest bit of advance
baby steps, but measures on a premature foot
not even the foot, but the toe, the littlest toe
You have to watch to see the progress
you have to attend to know the advance
blink and you will miss it
so you sit and watch and worry
Progress, decline, stabilize, and repeat
day in and day out, constant
it is the constant of this world
the constancy of change, a paradox
Remain too long with no change and they worry
change too much and they fret
there is a rhythm to the worry and relief
like the rize and fall of the waves
crashing on the shore with regularity
the constancy of change
So today I will expect that things will
be different, new, unexpected
I will remember that it is like that
just for today for tomorrow
this too will change
Thursday, April 2, 2009
Heartbeat
There is a renewed sense of the need to record life. I used to be more active at recording life, but had stopped. When Sara was still in utero, I started a simple record of events and things related to her. I recorded the details of conversations I had with the doctor, and what readings I saw in the morning and at night. Details. You forget things, and writing can save them for you.
I found the journal again recently. As I reread it, I saw things with clearer eyes. One of the things was the classification system of bleeds in the brain. IHV classes. Starting at one which would be watched, to Class 4 which is not survivable. This was told to me by the doctor the first day in the NICU. I have always remembered that Sara had a class 4 bleed. I always knew it was bad. I had forgotten "NOT SURVIVABLE" Sara did not have a chance. Some of my guilt lifted this last week after all these years.
Another passage brought me to a stop. I had written about the end and the decision to withdraw the artificial respiration. I wrote that I had placed my hand on her chest and could feel her heartbeat. I moved my had to feel her feet, which were cold, and when I placed my hand back on her chest, I could no longer feel her heartbeat. Grief took that memory. I did not recall that independent of the book. Had I not written, I would have lost that memory forever. I am comforted now knowing that I felt her heartbeat. I will choose that memory to hold now.
I found the journal again recently. As I reread it, I saw things with clearer eyes. One of the things was the classification system of bleeds in the brain. IHV classes. Starting at one which would be watched, to Class 4 which is not survivable. This was told to me by the doctor the first day in the NICU. I have always remembered that Sara had a class 4 bleed. I always knew it was bad. I had forgotten "NOT SURVIVABLE" Sara did not have a chance. Some of my guilt lifted this last week after all these years.
Another passage brought me to a stop. I had written about the end and the decision to withdraw the artificial respiration. I wrote that I had placed my hand on her chest and could feel her heartbeat. I moved my had to feel her feet, which were cold, and when I placed my hand back on her chest, I could no longer feel her heartbeat. Grief took that memory. I did not recall that independent of the book. Had I not written, I would have lost that memory forever. I am comforted now knowing that I felt her heartbeat. I will choose that memory to hold now.
Monday, March 9, 2009
A father's responsibility
There is a point in life when you are called to make decisions you never wish to have to make. The last morning was my time.
I awoke after a short nap and was called to the NICU. Sara was not doing well. The morning exam had shown that Sara had several problems that did not bode well. I was told it was just a matter of time. Sara's o2 sats had dropped back into the 40s. He had a class 4 bleed in her brain (a major stroke), and she had a pulmonary embolism (her lungs were to fragle and were breaking down). My Sara was dying.
The nurses asked if I wanted to hold her, and of course I said yes. They moved her outof the isolette and placed her in my arms. She was so tiny and so warm. I was holding my little girl. My living little Girl. I was so proud.
The nurses were providing artificial respiration with a small ambu bag. There is a certain understanding that you know without speaking. Sara was fading fast being out of the isolette. She was still connected to the monitor and the numbers were falling. It was clear that she was going to die. I was faced with the choice that only I can fully appreciate. I knew in that moment my decision would mean the life of my daughter. I wanted her to live and that was not going to happen.
I asked to nurse to stop the breathing for her, and disconnect the monitor.
Sara died in my arms.
My first thought was "this is what it means to be a father" I had put the desires I had for those extra few minutes aside to allow my daughter to rest. I let her go.
Even today writing this, tears are surfacing. I miss her terribly. I wish I had not had to make the choice. The doctors and nurses tried to reassure me that she was so close to death that I did not ... In a way it made me angry. As horrible as it is to stop care, and let a loved one pass, I felt like I had none what a father would have done for his suffering child. That does not stop the what ifs. What if I had waited a minute or five or 30? I can't answer that. Sara was very ill. Her problems were multiplying quickly.
I held Sara close and talked softly to her. She never moved after the nurse stopped the ambu bag. I can't even be sure when she died. She was alive when I started to hold her, and she wasn't when I handed her back to the nurse. Time and the world, everything lost it's meaning in those moments. I died inside. The World Stopped.
I awoke after a short nap and was called to the NICU. Sara was not doing well. The morning exam had shown that Sara had several problems that did not bode well. I was told it was just a matter of time. Sara's o2 sats had dropped back into the 40s. He had a class 4 bleed in her brain (a major stroke), and she had a pulmonary embolism (her lungs were to fragle and were breaking down). My Sara was dying.
The nurses asked if I wanted to hold her, and of course I said yes. They moved her outof the isolette and placed her in my arms. She was so tiny and so warm. I was holding my little girl. My living little Girl. I was so proud.
The nurses were providing artificial respiration with a small ambu bag. There is a certain understanding that you know without speaking. Sara was fading fast being out of the isolette. She was still connected to the monitor and the numbers were falling. It was clear that she was going to die. I was faced with the choice that only I can fully appreciate. I knew in that moment my decision would mean the life of my daughter. I wanted her to live and that was not going to happen.
I asked to nurse to stop the breathing for her, and disconnect the monitor.
Sara died in my arms.
My first thought was "this is what it means to be a father" I had put the desires I had for those extra few minutes aside to allow my daughter to rest. I let her go.
Even today writing this, tears are surfacing. I miss her terribly. I wish I had not had to make the choice. The doctors and nurses tried to reassure me that she was so close to death that I did not ... In a way it made me angry. As horrible as it is to stop care, and let a loved one pass, I felt like I had none what a father would have done for his suffering child. That does not stop the what ifs. What if I had waited a minute or five or 30? I can't answer that. Sara was very ill. Her problems were multiplying quickly.
I held Sara close and talked softly to her. She never moved after the nurse stopped the ambu bag. I can't even be sure when she died. She was alive when I started to hold her, and she wasn't when I handed her back to the nurse. Time and the world, everything lost it's meaning in those moments. I died inside. The World Stopped.
Communication
Let me say that some of these blogs are out of order. I am writing what comes to the surfaces and letting more rise as it will. This event took place the night before Sara died.
The nurses and doctors told me that Sara needed to have a high oxygen saturation rate to survive. Her sats were in the 40s and 50s She needed to be in the 80s and 90s. I had this on my mind as I settled into the rocking chair beside Sara. I could look up and see the monitor. I am a realistic person, but this was my daughter. I had always heard that some one can hear you if you talk to them while they are unconscious. So sitting there, I started to talk to Sara. I told her about the need to improve her o2 sats. I told her what it was right at that moment, and asked her to work on increasing that number. To my surprise the figure changed. Maybe, just Maybe! I kept talking to her encouraging her and asking her to raise the value. One digit at a time the values grew and grew. I felt like a cheerleader. I did not care what it looked like, or who watched. Sara's o2 sats were improving. The whole night I sat there and talked to her, and kept at it. By the time the first shift arrived, her sats were at 69, just under the basic needed level. I was exhausted but hopeful. Maybe we had turned the corner.
There are those who have heard this account, and became naysayers. She was not old enough to even understand English or she could not have controlled her o2 sats. I know what I saw, and what I did. I can't explain it other than there is a bond between parent and child that transcends the physical world. A soul connection of it were. Sara and I worked together for a night. One precious 8 hours spent with my daughter. I will never forget that night.
The nurses and doctors told me that Sara needed to have a high oxygen saturation rate to survive. Her sats were in the 40s and 50s She needed to be in the 80s and 90s. I had this on my mind as I settled into the rocking chair beside Sara. I could look up and see the monitor. I am a realistic person, but this was my daughter. I had always heard that some one can hear you if you talk to them while they are unconscious. So sitting there, I started to talk to Sara. I told her about the need to improve her o2 sats. I told her what it was right at that moment, and asked her to work on increasing that number. To my surprise the figure changed. Maybe, just Maybe! I kept talking to her encouraging her and asking her to raise the value. One digit at a time the values grew and grew. I felt like a cheerleader. I did not care what it looked like, or who watched. Sara's o2 sats were improving. The whole night I sat there and talked to her, and kept at it. By the time the first shift arrived, her sats were at 69, just under the basic needed level. I was exhausted but hopeful. Maybe we had turned the corner.
There are those who have heard this account, and became naysayers. She was not old enough to even understand English or she could not have controlled her o2 sats. I know what I saw, and what I did. I can't explain it other than there is a bond between parent and child that transcends the physical world. A soul connection of it were. Sara and I worked together for a night. One precious 8 hours spent with my daughter. I will never forget that night.
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