You Are a Comma |
 You are open minded and extremely optimistic. You enjoy almost all facets of life. You can find the good in almost anything. You keep yourself busy with tons of friends, activities, and interests. You find it hard to turn down an opportunity, even if you are pressed for time. Your friends find you fascinating, charming, and easy to talk to. (But with so many competing interests, you friends do feel like you hardly have time for them.) You excel in: Inspiring people You get along best with: The Question Mark |
Saturday, May 31, 2008
a fun little quiz
Wednesday, May 28, 2008
more of me
Sunday, I spent the better part of the evening reading old posts here and I've come to a bit of a conclusion or two or three.
1. I don't respect the blog in the way I did in the past.
2. I should write more.
3. Maybe I'm not as out of my mind as I think I am.
Sunday was Michelle's birthday. She would have been 39. Alas, she ended her journey at 36 1/2. It is funny to me, in this very moment, that she would have cared to note the 'and a half'. She always noted the 'and a half' in her 5'2 1/2" height. I miss her. Church was amazing. I wish she had been there. I wished I could have talked to her. I wish I could share with her the inside of me right now. She'd tell me that she loves me. She'd tell me that sometimes life isn't always handed to us the way we wish it were.
She would have understood me. She would have loved me inspite of what's inside me right now and she would have been encouraging in the ways that are right. She would have laughed with me that maybe indeed, I am not depressed, but rather bi-freaking-polar just like Cinda-freakin'-rella.
I think it's quite possible that I'm not actually out of my mind, but rather a full understanding of my being is imperceivable inside the limitations that exist inside the understanding I'm currently aware of and will only be fully realized in the Heaven that awaits me.
Probably, part of why I'm still here and she's not is that they're not ready for me as yet. Also, maybe there's more for me to do here; for me to accomplish, to understand, to bless with all my being. HAHAHA! Mostly, that's doubtful. But apparently, embracing me and loving me is important for me to do. To build up myself with God's grace is my calling, perhaps.
I do find it strange, admist all this, that God is so clear and easy for me to understand and so terribly difficult to explain. Also strange. When I read through my "seriously? I am out of my mind" posts, it was so strange how many of those labeled posts relate in some way to God.
Also, I'm pretty sure my period is about to start. That would make SOO much sense.
How 'bout that?
1. I don't respect the blog in the way I did in the past.
2. I should write more.
3. Maybe I'm not as out of my mind as I think I am.
Sunday was Michelle's birthday. She would have been 39. Alas, she ended her journey at 36 1/2. It is funny to me, in this very moment, that she would have cared to note the 'and a half'. She always noted the 'and a half' in her 5'2 1/2" height. I miss her. Church was amazing. I wish she had been there. I wished I could have talked to her. I wish I could share with her the inside of me right now. She'd tell me that she loves me. She'd tell me that sometimes life isn't always handed to us the way we wish it were.
She would have understood me. She would have loved me inspite of what's inside me right now and she would have been encouraging in the ways that are right. She would have laughed with me that maybe indeed, I am not depressed, but rather bi-freaking-polar just like Cinda-freakin'-rella.
I think it's quite possible that I'm not actually out of my mind, but rather a full understanding of my being is imperceivable inside the limitations that exist inside the understanding I'm currently aware of and will only be fully realized in the Heaven that awaits me.
Probably, part of why I'm still here and she's not is that they're not ready for me as yet. Also, maybe there's more for me to do here; for me to accomplish, to understand, to bless with all my being. HAHAHA! Mostly, that's doubtful. But apparently, embracing me and loving me is important for me to do. To build up myself with God's grace is my calling, perhaps.
I do find it strange, admist all this, that God is so clear and easy for me to understand and so terribly difficult to explain. Also strange. When I read through my "seriously? I am out of my mind" posts, it was so strange how many of those labeled posts relate in some way to God.
Also, I'm pretty sure my period is about to start. That would make SOO much sense.
How 'bout that?
Saturday, May 3, 2008
A little self reveal
This is the post where I tell you about the crazy places I live in.
These places are all in my mind (thus the URL).
I really do live on a tenuous string of sanity. I manage pretty well from day to day with the ever present help of my chemical romance, Zoloft. I joke heartily of the need for meds each day, but the reality is that I require medication to function. This reality breaks me sometimes. I absolutely hate the meds. HATE...HATE. HATE!
The saneness you think you see in me, where you think I'm as normal as you, is 100% due to my medication.
My need for medication really pisses me off.
I've been consulted by people about the whole "should I take meds" thing and my response is always the same. "Taking medication to affect change in the chemical imbalances in the brain that cause functional changes is the same thing as a diabetic person who takes insulin. It's nothing to fight. It's just a necessary thing!"
Funny, that when the rubber met the road for me recently, I found myself complaining about how AWFUL it is that I have to take STUPID medication just so I can get up in the morning and even then barely think straight to someone. I confided my hatred for my meds with a new friend of mine. This friend has type I diabetes and has been on insulin since the age of 12. I was quickly informed by this friend that I was talking to the wrong person about not liking the reality that I require a chemical to sustain normalcy. The reality that I can even take meds, when someone like my Middle Mann has no choice but to endure life as it rolls toward him, should comfort me more than piss me off.
Lately, I'm not convinced that Zoloft will be my life long friend. Or least not the at dosage that I'm curently on.
My world has been rocked recently. The rocking action that knocked me down from my string of sanity is really just a little thing. Just a simple email, probably sent with the best of intentions, but an email that rocked me nonetheless.
I try to learn from everything. A situation. A circumstance. A relationship. A song. Right now, I'm learning not to hate the meds, and I'm learning how to better prepare for the unforeseen mental side swipe that can strike from nowhere.
These places are all in my mind (thus the URL).
I really do live on a tenuous string of sanity. I manage pretty well from day to day with the ever present help of my chemical romance, Zoloft. I joke heartily of the need for meds each day, but the reality is that I require medication to function. This reality breaks me sometimes. I absolutely hate the meds. HATE...HATE. HATE!
The saneness you think you see in me, where you think I'm as normal as you, is 100% due to my medication.
My need for medication really pisses me off.
I've been consulted by people about the whole "should I take meds" thing and my response is always the same. "Taking medication to affect change in the chemical imbalances in the brain that cause functional changes is the same thing as a diabetic person who takes insulin. It's nothing to fight. It's just a necessary thing!"
Funny, that when the rubber met the road for me recently, I found myself complaining about how AWFUL it is that I have to take STUPID medication just so I can get up in the morning and even then barely think straight to someone. I confided my hatred for my meds with a new friend of mine. This friend has type I diabetes and has been on insulin since the age of 12. I was quickly informed by this friend that I was talking to the wrong person about not liking the reality that I require a chemical to sustain normalcy. The reality that I can even take meds, when someone like my Middle Mann has no choice but to endure life as it rolls toward him, should comfort me more than piss me off.
Lately, I'm not convinced that Zoloft will be my life long friend. Or least not the at dosage that I'm curently on.
My world has been rocked recently. The rocking action that knocked me down from my string of sanity is really just a little thing. Just a simple email, probably sent with the best of intentions, but an email that rocked me nonetheless.
I try to learn from everything. A situation. A circumstance. A relationship. A song. Right now, I'm learning not to hate the meds, and I'm learning how to better prepare for the unforeseen mental side swipe that can strike from nowhere.
My Middle Mann - Part VI
From where I left off...
....His development was pretty boring for the next couple of years. Honestly, he didn't change much.
Until about 3 months before his 2nd birthday.
He got a little sick one day. A little more uncomfortable than usual. He never seemed completely comfortable, but this was definitely different. He couldn't keep anything down. Actually, it was so bad that I couldn't even wipe his face with a damp cloth without him throwing up.
I was completely at a loss for what to do.
So we went to the doctor.
He was diagnosed with extreme dehydration and admitted to the hospital for fluids and observation. It was the strangest thing to me. Strange, because when they admitted him, they ordered a CT scan of his head. I really didn't understand that, but the lack of clarity only lasted a short time.
His shunt had failed.
There was no reason for this. It just happened. I'd been warned that it may, though I had no idea what to look for. But in a few short hours, I learned what his symptoms may look like if it ever happened again.
He had a second brain surgery, though he didn't look nearly as alienesque as the first time. He didn't have any physically altering symptoms, specifically head swelling. He did have a complete shutdown of his systems. There was the obvious digestional shut down, accompanied by a loss of visual function. He was completely dehydrated. In fact, when they tried to use a catheter to get a urine specimen, his little bladder was completely empty.
He came through surgery flawlessly. Woke up and acted mostly like the little man I'd come to know, and life just went on.
Did I mention that I knew what it might look like if it happened again? Yeah, it did. 2 months later.
Apparently, the first time, it got plugged up because the pressure valve that was originally used enabled for significant decompression of the ventricles. So much so that the brain tissue was able to, over a period of two years, completely block the shunt's flow. It was gradual, but when the blockage was complete, the disintegration of function was hasty.
The second time it failed, I discovered it was because during the first replacement, he suffered an additional bleed in his brain. The shunt grabbed some of that blood and since it's not a native internal object, the body didn't do the work of cleaning up the blood inside the shunt.
The really great thing about the 2nd replacement is that when my dude woke up, he really woke up! The doctor - who walked out of every surgery completely free of wrinkles (something that makes him just delicious in my mind) - decided to use a different pressure valve in this shunt. It was a higher pressure valve, so there would be marginally more pressure inside the kiddo's head so that the brain tissue wouldn't be impacted and the possibility of another bleed caused by the shunt would be reduced.
BEST THING THAT HAPPENED TO MY BABY!! EVER!!!!
He tore the dressing off his head within 12 hours after surgery. He started sitting up. Scooting around on his butt. And within a year, he was walking! Granted, it was only when he was holding my hand, but the 2nd day he did the walking thing, we went to the mall, and he walked the WHOLE way around. He was ready to meet the world and the world needed to watch out! (check out that run on sentence...)
About the time he was upright and walking, he started going to school by way of the short bus. He was 3 little tiny years old and he started riding the bus the same day as Sweetie started Kindergarten.
We had IEP meetings and goals were set. He was suddenly so big and I learned things about him I hadn't known before. Things like he could put his shirt on all by himself. It's strange how when you have a special kid, other people can make them do more than they'll you'll let them do.
As a mommy of a special boy, I do everything I ever did for him. Once he went to school, there was an unknown about him there. The teacher and the assistants and the therapists didn't know that he couldn't do what I knew he couldn't do. So, they just expected that he could. And actually, they were right!
He has continued to blow my mind with his development. He can walk and talk and eat and grow and think and read and add and subtract. The reality hits me from time to time that when he was 4 months old, I was asked to sign a DNR.
I talked to his pediatrician, who left private practice to work exclusively with kids like mine, about 6 years later. He told me things I never knew. Those things have stayed with me in a special place that I go to when I need a little encouragement. At the times when I'm convinced I'll never be able to die because of my baby's need for me.
That doctor told me that when we were at his office nearly every day, he was as certain as the morning comes, that I would ask him to take my baby from me. He was certain that my baby wouldn't make it very long. He was certain that my baby would never really function.
His certainty was so significantly rocked as a result of my baby's life, that he had to re-write his conclusions about what could happen with babies like mine.
Now, my little baby is nearly 14 years old.
He loves NASCAR. He loves people. He loves music - singing and playing and listening. He adds 2 digit numbers and subtracts without borrowing. He reads at a high 1st grade level. He can't wait to cheer on anyone and everyone he can. He's competed in Special Olympics and taken the Gold!
He is an amazing creation. I can't take credit for his awesomeness anymore than I can for Sweetie's. God is so good and has blessed me through my kiddos.
....His development was pretty boring for the next couple of years. Honestly, he didn't change much.
Until about 3 months before his 2nd birthday.
He got a little sick one day. A little more uncomfortable than usual. He never seemed completely comfortable, but this was definitely different. He couldn't keep anything down. Actually, it was so bad that I couldn't even wipe his face with a damp cloth without him throwing up.
I was completely at a loss for what to do.
So we went to the doctor.
He was diagnosed with extreme dehydration and admitted to the hospital for fluids and observation. It was the strangest thing to me. Strange, because when they admitted him, they ordered a CT scan of his head. I really didn't understand that, but the lack of clarity only lasted a short time.
His shunt had failed.
There was no reason for this. It just happened. I'd been warned that it may, though I had no idea what to look for. But in a few short hours, I learned what his symptoms may look like if it ever happened again.
He had a second brain surgery, though he didn't look nearly as alienesque as the first time. He didn't have any physically altering symptoms, specifically head swelling. He did have a complete shutdown of his systems. There was the obvious digestional shut down, accompanied by a loss of visual function. He was completely dehydrated. In fact, when they tried to use a catheter to get a urine specimen, his little bladder was completely empty.
He came through surgery flawlessly. Woke up and acted mostly like the little man I'd come to know, and life just went on.
Did I mention that I knew what it might look like if it happened again? Yeah, it did. 2 months later.
Apparently, the first time, it got plugged up because the pressure valve that was originally used enabled for significant decompression of the ventricles. So much so that the brain tissue was able to, over a period of two years, completely block the shunt's flow. It was gradual, but when the blockage was complete, the disintegration of function was hasty.
The second time it failed, I discovered it was because during the first replacement, he suffered an additional bleed in his brain. The shunt grabbed some of that blood and since it's not a native internal object, the body didn't do the work of cleaning up the blood inside the shunt.
The really great thing about the 2nd replacement is that when my dude woke up, he really woke up! The doctor - who walked out of every surgery completely free of wrinkles (something that makes him just delicious in my mind) - decided to use a different pressure valve in this shunt. It was a higher pressure valve, so there would be marginally more pressure inside the kiddo's head so that the brain tissue wouldn't be impacted and the possibility of another bleed caused by the shunt would be reduced.
BEST THING THAT HAPPENED TO MY BABY!! EVER!!!!
He tore the dressing off his head within 12 hours after surgery. He started sitting up. Scooting around on his butt. And within a year, he was walking! Granted, it was only when he was holding my hand, but the 2nd day he did the walking thing, we went to the mall, and he walked the WHOLE way around. He was ready to meet the world and the world needed to watch out! (check out that run on sentence...)
About the time he was upright and walking, he started going to school by way of the short bus. He was 3 little tiny years old and he started riding the bus the same day as Sweetie started Kindergarten.
We had IEP meetings and goals were set. He was suddenly so big and I learned things about him I hadn't known before. Things like he could put his shirt on all by himself. It's strange how when you have a special kid, other people can make them do more than they'll you'll let them do.
As a mommy of a special boy, I do everything I ever did for him. Once he went to school, there was an unknown about him there. The teacher and the assistants and the therapists didn't know that he couldn't do what I knew he couldn't do. So, they just expected that he could. And actually, they were right!
He has continued to blow my mind with his development. He can walk and talk and eat and grow and think and read and add and subtract. The reality hits me from time to time that when he was 4 months old, I was asked to sign a DNR.
I talked to his pediatrician, who left private practice to work exclusively with kids like mine, about 6 years later. He told me things I never knew. Those things have stayed with me in a special place that I go to when I need a little encouragement. At the times when I'm convinced I'll never be able to die because of my baby's need for me.
That doctor told me that when we were at his office nearly every day, he was as certain as the morning comes, that I would ask him to take my baby from me. He was certain that my baby wouldn't make it very long. He was certain that my baby would never really function.
His certainty was so significantly rocked as a result of my baby's life, that he had to re-write his conclusions about what could happen with babies like mine.
Now, my little baby is nearly 14 years old.
He loves NASCAR. He loves people. He loves music - singing and playing and listening. He adds 2 digit numbers and subtracts without borrowing. He reads at a high 1st grade level. He can't wait to cheer on anyone and everyone he can. He's competed in Special Olympics and taken the Gold!
He is an amazing creation. I can't take credit for his awesomeness anymore than I can for Sweetie's. God is so good and has blessed me through my kiddos.
Thursday, April 24, 2008
My Middle Mann - Part V
It's going to take me forever to get through the story of my dude this way, but with this post, I'll try and get pretty close to present day.
Buckle up. This could be a long post!
When he was about 4 months old, he started occupational therapy. His first goal was to be able to tolerate 10 minutes of handling (basically being held) without screaming and then crashing into sleep for the rest of his session. It took him about 6 months to reach that goal.
One day, while I was buying groceries, I noticed a baby, younger than my own, facing me in the shopping cart ahead of me in line. That baby looked at me. Right in the eyes. I didn't notice before, but my baby boy hadn't done that. Ever.
I mentioned this to the neurologist and the pediatrician. It was so hard to convince them that I meant it when I said that I didn't think my baby could see. They tried repeatedly to dissuade me from calling him blind, but can I just tell you this? A mother knows. No matter what. A Mother Really Knows her kid.
There is actually a test they can do when someone is asleep that can tell how much signal gets into the brain through the eyes. My baby failed that test.
When he was 4 months old, we had a follow up appointment with the neurologist. During that appointment, the doctor noted that he seemed to spit up quite a lot. He was a runny faced kid, no doubt, but I didn't think it was too much. He didn't drool ever, but he did give back a lot of his lunch no matter what meal it was.
The neurologist recommended seeing a gastroenterologist and the gastro's recommendation was to start my dude on some Zantac. For real. The same stuff they make for grown ups, only this was for babies.
After one day on the new medicine, his life changed. He didn't scream anymore. Even when he wasn't in his swing.
My baby's tummy was hurting all that time. Ugh! It broke my heart to realize that I didn't notice his reflux. I just thought he spit up a lot. I was able to get over the guilt of that when I realized that while he was on Zantac, he didn't poop. So, they started him on another medicine to help him poop. That was good, though it was a difficult drug to find. It had to be compounded every single refill. If you know me, you know I really stink at the pre-planning crap. So, he'd go a few days without pooping and I'd realize that I should probably get a refill on that magic drug. I would, and he would poop. Amazing!
He started to demonstrate a little bit of a personality during this time and we noted that he was happy. For the first time in his life!
A couple of months later, he started to be fussy again, so I worked with his OT to teach him a couple of signs. He learned 'more' and 'all done' and that met his needs for the next few months. Who would have thought that a developmentally delayed kid would want to communicate at 6 months?? But he did. He really did!
I learned during this time that doctors practice their job and I, as a mother, am expected to actually do mine. I learned that doctors would respect me if I told them 'what for' in a respectful manner. That if I presented my case effectively, they would listen. AND maybe they weren't right at first and that it was my JOB to make sure they kept investigating to find the real answer to my boy's realities.
From the time he was born, lots and lots of prayers were raised asking for healing. Honestly, I was kinda tired of asking God to heal my baby. I had begun to understand and accept that God has until Heaven to heal my baby fully. He will be whole in the end and that's really enough for me.
No matter, there was a healing service at my parents church when my middle (though not yet middle) mann was about a year old. My parents really wanted me to go. They wanted him to be prayed for again. Again. Seriously? I was okay with the fact that my baby wasn't whole here. Since that was very much my plan - to be fine with a baby that was broken - I went to the service. About 5 minutes before it was over, I really needed to get my little boy.
I brought him from the nursery into the service itself and before all was said and done, the pastor prayed with him.
I gotta tell you, I was skeptical at best.
But, my baby was happy the next day and he seriously rolled to a toy. He saw the toy and rolled over to it.
Life was never the same.
Also, the seizures stopped after he was about a month old. It took the better part of a year to get him off meds for it, but I did it. Also, I had the vision test re-done after he rolled to that toy and he passed the second time. That, apparently, isn't supposed to happen.
His development was slow at best. There were therapists that came to our house. There was therapies that we went to about 3 times a week. There was still a lot of fussing and he didn't eat solid food like normal babies. He only nursed. For one and a half years.
Thanksgiving always brought some gift to me from him. His first year, it was a friend we took to the hospital instead of him. The second year? He ate stuffing and drank egg nog! FIRST SOLID FOOD EVER!!!! YAAAY! Unfortunately, Thanksgiving food isn't available all year long. I made egg nog from scratch for a while, but then I just got tired of it and nursed him until he was about 3 years old.
Eventually, he figured out the cup and food. Although, the texture of stuffing remains his favorite.
His development was pretty boring for the next couple of years. Honestly, he didn't change much.
Alas, I did not get really close to his current age, but we're about the 3 years old. That's some progress comparatively! Hopefully, I'll be all caught up in Part VI!
Buckle up. This could be a long post!
When he was about 4 months old, he started occupational therapy. His first goal was to be able to tolerate 10 minutes of handling (basically being held) without screaming and then crashing into sleep for the rest of his session. It took him about 6 months to reach that goal.
One day, while I was buying groceries, I noticed a baby, younger than my own, facing me in the shopping cart ahead of me in line. That baby looked at me. Right in the eyes. I didn't notice before, but my baby boy hadn't done that. Ever.
I mentioned this to the neurologist and the pediatrician. It was so hard to convince them that I meant it when I said that I didn't think my baby could see. They tried repeatedly to dissuade me from calling him blind, but can I just tell you this? A mother knows. No matter what. A Mother Really Knows her kid.
There is actually a test they can do when someone is asleep that can tell how much signal gets into the brain through the eyes. My baby failed that test.
When he was 4 months old, we had a follow up appointment with the neurologist. During that appointment, the doctor noted that he seemed to spit up quite a lot. He was a runny faced kid, no doubt, but I didn't think it was too much. He didn't drool ever, but he did give back a lot of his lunch no matter what meal it was.
The neurologist recommended seeing a gastroenterologist and the gastro's recommendation was to start my dude on some Zantac. For real. The same stuff they make for grown ups, only this was for babies.
After one day on the new medicine, his life changed. He didn't scream anymore. Even when he wasn't in his swing.
My baby's tummy was hurting all that time. Ugh! It broke my heart to realize that I didn't notice his reflux. I just thought he spit up a lot. I was able to get over the guilt of that when I realized that while he was on Zantac, he didn't poop. So, they started him on another medicine to help him poop. That was good, though it was a difficult drug to find. It had to be compounded every single refill. If you know me, you know I really stink at the pre-planning crap. So, he'd go a few days without pooping and I'd realize that I should probably get a refill on that magic drug. I would, and he would poop. Amazing!
He started to demonstrate a little bit of a personality during this time and we noted that he was happy. For the first time in his life!
A couple of months later, he started to be fussy again, so I worked with his OT to teach him a couple of signs. He learned 'more' and 'all done' and that met his needs for the next few months. Who would have thought that a developmentally delayed kid would want to communicate at 6 months?? But he did. He really did!
I learned during this time that doctors practice their job and I, as a mother, am expected to actually do mine. I learned that doctors would respect me if I told them 'what for' in a respectful manner. That if I presented my case effectively, they would listen. AND maybe they weren't right at first and that it was my JOB to make sure they kept investigating to find the real answer to my boy's realities.
From the time he was born, lots and lots of prayers were raised asking for healing. Honestly, I was kinda tired of asking God to heal my baby. I had begun to understand and accept that God has until Heaven to heal my baby fully. He will be whole in the end and that's really enough for me.
No matter, there was a healing service at my parents church when my middle (though not yet middle) mann was about a year old. My parents really wanted me to go. They wanted him to be prayed for again. Again. Seriously? I was okay with the fact that my baby wasn't whole here. Since that was very much my plan - to be fine with a baby that was broken - I went to the service. About 5 minutes before it was over, I really needed to get my little boy.
I brought him from the nursery into the service itself and before all was said and done, the pastor prayed with him.
I gotta tell you, I was skeptical at best.
But, my baby was happy the next day and he seriously rolled to a toy. He saw the toy and rolled over to it.
Life was never the same.
Also, the seizures stopped after he was about a month old. It took the better part of a year to get him off meds for it, but I did it. Also, I had the vision test re-done after he rolled to that toy and he passed the second time. That, apparently, isn't supposed to happen.
His development was slow at best. There were therapists that came to our house. There was therapies that we went to about 3 times a week. There was still a lot of fussing and he didn't eat solid food like normal babies. He only nursed. For one and a half years.
Thanksgiving always brought some gift to me from him. His first year, it was a friend we took to the hospital instead of him. The second year? He ate stuffing and drank egg nog! FIRST SOLID FOOD EVER!!!! YAAAY! Unfortunately, Thanksgiving food isn't available all year long. I made egg nog from scratch for a while, but then I just got tired of it and nursed him until he was about 3 years old.
Eventually, he figured out the cup and food. Although, the texture of stuffing remains his favorite.
His development was pretty boring for the next couple of years. Honestly, he didn't change much.
Alas, I did not get really close to his current age, but we're about the 3 years old. That's some progress comparatively! Hopefully, I'll be all caught up in Part VI!
Wednesday, April 23, 2008
My Middle Mann - Part IV
I brought him home and began the arduous task of trying to understand what all was really going on with my baby. He had doctor's appointments just about every day to follow up with neurologists, developmental pediatricians, and neurosurgeons. When he didn't go to the doctor because of some preventative reason, he was at the doctor trying to figure out why he was so fussy.
He cried all the time. Not a normal, baby needs to cry, kind of cry but the kind of cry that makes even the least affected person want to throw whatever is closest in an effort to make it stop. If he wasn't nursing, he was screaming. Sleep didn't seem to happen for this little guy. Just screaming and eating. Eating and screaming. Hour after hour after hour. Week upon week upon week.
The doctors didn't have any idea why, except that he had such significant brain damage from the bleed in his brain he'd suffered about 4 weeks before he was born.
His massive brain injury occurred while I was pregnant.
I'd been garage sale-ing one warm Saturday afternoon in May in the neighborhood next to my parents. I was walking along with my mom and my Sweetie when suddenly, I dropped to the ground in pain. It took a couple minutes for me to catch my breath. When I was able to stand and then walk again, the baby had dropped and I suddenly had more room to breathe. Something wasn't quite right the rest of the pregnancy. It was terribly uncomfortable. It actually felt like the baby was crooked in there. And the hiccups? Oh how I wished they would stop, but they were pretty constant for the whole last 4 weeks.
I talked to the nurse and the doctor about it and they both told me not to worry. That everything was different with every pregnancy and just because it didn't happen last time doesn't mean it's not perfectly normal this time.
After about 6 weeks of the constant screaming and the daily trips to the pediatrician, I was given a new medication for my little guy. It was to help him sleep. So that he could rest and grow and so that I could a little too. I found out about 7 years later that it was a terribly outdated form of sedation and also that there is no reversal agent for it. Good thing he kept waking up screaming!
I gave him the meds about 3 times a day so he could sleep about 12 hours. It worked that well for about 3 days. Then the number of sleeping hours decreased slowly until he was only sleeping about 4 hours a day. I took him in for some developmental testing when he was about 10 weeks old and they suggested I get a swing for him. One of the sweet battery operated ones.
We went through 3 sets of 4D cell, 100 hour batteries a week for a few months. I know. It's a lot...But! He was able to spend some time awake and not scream during the day and that hadn't happened at all before then. It was a MAJOR improvement. He swung day and night. He would sleep there during the night for a couple of hours at a time. I slept on the couch right next to the swing so I could grab him and try and soothe him as soon as he would wake.
It was a nice change to have the start of a schedule. I was so glad to be living with my family during this time. They helped me so much with my Sweetie and she came with me to all of her brother's appointments, everyday, and was always perfectly behaved. I honestly thought that was normal behavior for a 2 1/2 year old. Little did I know, she was already going on 30 even at that young age.
He cried all the time. Not a normal, baby needs to cry, kind of cry but the kind of cry that makes even the least affected person want to throw whatever is closest in an effort to make it stop. If he wasn't nursing, he was screaming. Sleep didn't seem to happen for this little guy. Just screaming and eating. Eating and screaming. Hour after hour after hour. Week upon week upon week.
The doctors didn't have any idea why, except that he had such significant brain damage from the bleed in his brain he'd suffered about 4 weeks before he was born.
His massive brain injury occurred while I was pregnant.
I'd been garage sale-ing one warm Saturday afternoon in May in the neighborhood next to my parents. I was walking along with my mom and my Sweetie when suddenly, I dropped to the ground in pain. It took a couple minutes for me to catch my breath. When I was able to stand and then walk again, the baby had dropped and I suddenly had more room to breathe. Something wasn't quite right the rest of the pregnancy. It was terribly uncomfortable. It actually felt like the baby was crooked in there. And the hiccups? Oh how I wished they would stop, but they were pretty constant for the whole last 4 weeks.
I talked to the nurse and the doctor about it and they both told me not to worry. That everything was different with every pregnancy and just because it didn't happen last time doesn't mean it's not perfectly normal this time.
After about 6 weeks of the constant screaming and the daily trips to the pediatrician, I was given a new medication for my little guy. It was to help him sleep. So that he could rest and grow and so that I could a little too. I found out about 7 years later that it was a terribly outdated form of sedation and also that there is no reversal agent for it. Good thing he kept waking up screaming!
I gave him the meds about 3 times a day so he could sleep about 12 hours. It worked that well for about 3 days. Then the number of sleeping hours decreased slowly until he was only sleeping about 4 hours a day. I took him in for some developmental testing when he was about 10 weeks old and they suggested I get a swing for him. One of the sweet battery operated ones.
We went through 3 sets of 4D cell, 100 hour batteries a week for a few months. I know. It's a lot...But! He was able to spend some time awake and not scream during the day and that hadn't happened at all before then. It was a MAJOR improvement. He swung day and night. He would sleep there during the night for a couple of hours at a time. I slept on the couch right next to the swing so I could grab him and try and soothe him as soon as he would wake.
It was a nice change to have the start of a schedule. I was so glad to be living with my family during this time. They helped me so much with my Sweetie and she came with me to all of her brother's appointments, everyday, and was always perfectly behaved. I honestly thought that was normal behavior for a 2 1/2 year old. Little did I know, she was already going on 30 even at that young age.
Tuesday, April 22, 2008
My Middle Mann - Part III
In those 4 days, his head size increased nearly a full inch and all of it was fluid. It was already huge to start with. During the MRI, the tech let me sit and watch the screen as the images were taken. There was so much about the pictures I was seeing that didn't make sense. Large areas of black. The expected midline was virtually non-existent. I asked tons of questions, but the tech wasn't able to tell me anything. I hadn't seen an MRI before, but I'd read plenty of A&P books in my days to know that much wasn't right.
He was admitted into the NICU and prepped for surgery. All the risks were explained (so I thought) and I signed all the consent forms.
It took about an hour once they took him back.
The creature that was wheeled out of the operating room looked nothing like the baby I gave them. His head was terribly deformed and he looked more like a looney toon than a baby. His forehead was small, but from about the middle of his head back was HUGE! and his cheeks were equally fat. I knew he was mine since the same people brought him out as took him and his arm band said it was him, but oh my, I was physically nauseated at the sight of him. I had bad dreams all that night about how he looked. Even now, I can remember that feeling.
Fear came screaming at me and there was no way to hold it back.
He was plugged in to just about every monitor I knew about and in the NICU, I had to scrub in like a surgeon just to be allowed into his area. Since I've always wanted to be a doctor, the scrubbing in was sorta cool. My hands were terribly dry after a day or so. All in all, his recovery was splendid and on his 7th day, most everything had been disconnected. He was breathing on his own and was nursing. He didn't even have an IV and was discharged to the Special Care nursery in anticipation of discharge from the hospital the following day.
Once in the Special Care nursery, I was responsible to provide him with all of his primary care needs. It was a nice transitional place where skilled support was available if I needed help, but for the most part the job was mine.He started with some hiccups. I'd had a baby before and I thought maybe feeding him would help the hiccups to stop. It didn't help. He had the hiccups for about 30 minutes before I mentioned it to the nurse. She listened, but really didn't think much of it. She told me to keep an eye on it and let her know if it continued.
Well, it continued for about 4 hours. I reported back to her about every 15 minutes and once she finally stood still long enough to confirm the behavior, she called down to the NICU and let them know about it. I honestly had so little idea about what would become the life of my little boy and was seriously taking in information faster than I knew how to handle. Clarity would elude me for months.
After a couple more confirmed episodes the nurse and I took my baby back to the NICU so they could confirm or deny the existence of the strange hiccups.
There was a new flurry of activity and people wanted me to settle him down and try to get him to sleep and stop moving so much. I tried to convey to them that newborns don't work like that and I was doing my best, but if the arguing directly next to me would move away, it might be easier for me to do what they wanted.
At that point, the neonatologist stepped over to try and break up the argument when I spotted the hiccups again. He took my dude and worked him through that episode of hiccups and said that it was impressive. He ordered up a bunch of meds and looked at me and told me that we wouldn't be going home the next day.
Middle Mann needed to get a new IV placed so they could give him a loading dose of seizure medicine. Getting a new IV in him would prove to be the first of many many procedures where he was simply too strong for 4 adults to hold down. Once they'd tried more than 10 times, I had to leave. They ended up putting a tube down his throat and gave him the meds that way. And he promptly threw most of it up.
And then he slept. For a few days.
About a day after he woke up, they checked his oxygen saturation and hooked him up in the carseat so that he'd have good sats all the way home and we left on day 10 of his life.
Subscribe to:
Posts (Atom)