Thursday, April 24, 2008
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
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
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.
My dad took me and the doctor took me back promptly. He confirmed that (SHOCKING) my water had actually broken and I was going to have a baby. Then he directed me to a different room in his office where he had an ultrasound machine. He wanted to make sure the baby was in a good position for delivery and so he started to perform an ultrasound.
He confirmed that the baby was head down and rear facing which was very good. Then he said two words you never really think doctors say. Uh-Oh.
To be clear, doctors shouldn't ever say that. Ever.
He started spouting off a bunch of words I had never heard before and said the whole plan needed to change. I would be going to a different hospital because they were more equipped to handle the baby with the issues that were present and I needed to get there now. It was about 11:30 in the morning.
I didn't even know where that other hospital was or what was really going on. I was scared and unnervingly calm at the same time. I went out into the waiting room and explained to my dad what little I understood. Luckily he knew where the other hospital was and brought both me and Sweetie there.
Having babies involves a lot of hurry up and wait. About 2 hours after we got there, my mom and the rest of my family got there and I was wheeled up for another, official ultrasound where more diagnostics could be assertained.
We learned it was a boy and I told my dad a secret that I had been keeping only from him. I wanted to name my boy after his dad. It was a much better option than Zeek which I'd been toying with outloud and he was very proud.
We also learned that his head was huge and filled with fluid. The doctor promised me that if he had one reason to take the baby cesarean, he would. I met some of the staff from the NICU and was informed that as soon as the baby was born, he would be taken away to the NICU and depending on his state, might be returned to me. This was not a part of the plan in my mind ever, but alas, I did not ultimately have much control over the plan. (a lesson I wish I could remember more often)
They pushed Pitocin through an IV so quickly that my whole arm got super cold and finally at about 7:00 it was time to push and the doctor was out for dinner. Nice. It always works like that, right?
I was moved into a delivery room and encouraged to do my best to wait. Thankfully, I did not have to wait very long. My sister and my mom were in the room with me helping me out. The doctor arrived and I pushed 6 times. On the 6th push, they helped out with a little suction, and then the doctor gave me my baby. My quiet, heavy baby. I held him for about 2 minutes before the nurses scooped him up and I was wheeled back into my room. The hospital staff kept me busy with all sorts of questions and I sent my dad to Taco Bell for dinner.
Eventually, they brought my little guy back to me and said he could stay with me through the night. He was stable and looked pretty healthy. I'd meet with the neurosurgeon in the morning and we'd go from there.
I learned so many words during the next 24 hours and I found out that I knew a bunch of stuff already. Namely, that this little baby was the most stubborn feeder I'd ever met. I tried nursing him for about 3 hours before I started crying in earnest and asked my mom for help. She took the little guy and gave me a break for about an hour. I tried nursing him again and it finally worked a little. Nothing like Sweetie, but he was trying. In hindsight, his struggle to figure it out is quite clear.
The rest of my time in the hospital was very uneventful. In fact, he was discharged with me less than 24 hours after delivery. I was able to bring him home right away. He had an MRI on day 3 and brain surgery was scheduled for day 4. He had hydrocephalous and would need to have an appliance surgically implanted in order to address the significant amount of fluid up there.
There is a preamble to getting to know my now big-ish dude. I'll spare most of the narsty details and just say that there was a genetic donor who shall remain free of any credit for the awesomeness that is my boy. This procreative participant was in the Army and served in Kuwait following the Desert Storm conflict participating primarily in the clean up following the conflict itself. It is of note, though not scientifically proven, that the kids of those vets have a significantly higher chance of having some sort of impact during the maternal cooking time. (vague enough?)
The whole being pregnant thing sucked just as much the second time as the first less all the morning (who am I kidding? it was all freaking day) sickness. I had other stuff to deal with while I was pregnant, namely finding a new church, moving out of an apartment I couldn't afford, separating my belongings from the jerk donor, obtaining a restraining order to ensure I would not continue to be physically hurt, paying down the $600 phone bill that was racked up during a 60 day deployment to Somalia, and admitting to my family that everything I'd been telling them for the preceeding nearly 2 years was a lie and that I needed help and love and safety.
My family was shocked by all this revelation, but amazingly stepped right back into my life; the life I had completely shut them out of, and they loved all over me without fail or question.
The last six months of my pregnancy proceeded with me living in my parents' house with my 2 1/2 year old Sweetie. I worked hard in my parents house and paid some rent and bought our food. I was on public assistance for the time being, but I only planned on taking about 6 weeks off after I delivered.
Labor eluded me. I learned how it feels to have an irritable uterus. Dehydration was the order of the day. Dehydration which led to cramps and contractions that did little more than tire me out. The weekend before I delivered him, I spent 2 nights at the hospital trying to convince them that my water had broken. To no avail.
Saturday, April 19, 2008
Sunday, April 13, 2008
I learned so much about many things this week. I was introduced to the concept of the GUT in the midst of a debate about evolution. I am very interested that theories like this don't actually separate me from the evolutionists of the world but rather offer a scientific possibility for unification of thought when one considers the reality that there is only one possible ultimate Truth. It was awesome to me to consider this.
While my Friday ended with a little disappointment when I was told that I am not what one would consider an encyclopedia; I am still friend material since I have not demonstrated an unwillingness to learn nor to consider positions opposite from what I believe or have known previously.
I never would have imagined a random introduction to false cognates or begun the bewildering task of being of the internet instead of just on the internet.
It may seem that my life is just beginning.
I've been thinking about conversations I've had, decisions I've made, things I've done. The fabulous internet has left me with little sanity as I try to uncover more content and the truth inside all that is available.
Meanwhile, I've also thought of many, many things to post about and as I sit here contemplative of what the heck those things were, I am left empty headed.
I freaking hate it when that happens!
Wednesday, April 2, 2008
The morning routine responsibilities are split up between Softie and I. He certainly bears a heavier load each day with making the three lunches, finding the boys clothes, and taking two of the three kids to school. My job each morning is basically to make sure that Middle Mann gets on the bus with his backpack - lunch inside.
This morning, I found the backpack, grabbed the sack lunch off the counter, put it inside the backpack and sent him on his way. Whew! That was no harder than any other day.
I received an IM from Softie this afternoon.
S: You forgot to pack his lunch today
Me: Um, no.
Me: I'd swear I put his lunch in his backpack this morning.
S: Nope. The sack you packed had ROCKS in it.
Me: NO WAY! That oughta teach someone to put ROCKS in brown paper bags.
Yes, for real. Basically? I rock like that!