Tuesday, June 28, 2005

Seize the Day

So, as I'm sure I've mentioned about a jillion times, Ethan has a seizure disorder. But what I don't think I've mentioned is that it's not just any run-of-the-mill seizure disorder. It is the MOTHER of all seizure disorders. Because in this family, when we do something? We go ALL THE WAY.

Ethan has Lennox-Gastaut syndrome, or LGS. It is hard to pronounce and I never spell it right, which is fitting for a syndrome that no one can figure out how to treat.

The first time we were told Ethan had LGS, we weren't really affected. We knew he was prone to seizures, we knew he had been having seizures for about a year, and we knew his brain damage was permanant and widespread. Our first reactions were something along the lines of, "Yeah, so?" We thought, give him some medicine, the seizures will go away. We'll go back to our lives.

Then, I started Googling.

I only linked to one site above, but if you are in the mood to be depressed, do a little reading on the sites Google finds for Lennox-Gastaut syndrome. Heavy duty. When you see the words "severe" and "devastating" in a description of something your child has, something in you snaps. I was at work when I started this research, not such a good idea for a hypochondriac with a panic disorder and mild depression. I was a wreck for days. I kept picturing Ethan becoming a shell of a person, wracked by seizures, his constant good mood disappearing, losing what little skills he had gained... smiling, laughing, babbling.

After a while, I snapped out of it. I looked at Ethan and didn't see the hollow face I imagined would one day appear. He was alive, and happy, and full of love. Yes, he might have more trouble down the road, but for now, he was here and he was laughing and I was a fool for missing out on every moment of it.

Ethan has dozens of seizures a day, which sounds a lot worse than it actually is. At least, we have learned to deal with it and things don't really seem so bad. On good days, he has 15 or 20 visible, obvious seizures. On a bad day, he could have 50, 60, 70 or more. The types he has last less than a minute, and usually only look like he is staring off into space, lost in his own world. He also has tonic "drop" seizures that are more obvious. With these, his arms go out and stiffen and his head drops down. These started when he was in daycare and were what led the doctors to his eventual diagnosis.

It has been about a year since we learned the name of his seizure disorder. For that year, we have been trying different medications. Topamax, a drug also used for migraines, seemed to be working for a while. His seizures would decrease down to 10 or less on the best days. But after a few of weeks of good control, his seizures would start to increase in number again. The dose would then be increased, and we'd go through the cycle again. In the past couple of months, between the hip surgery and all of its drama, we have reached the maximum dose for Ethan's weight. But still, the seizures keep breaking through.

I read enough about LGS to know that Ethan will probably never have full seizure control. I had accepted that he will always have some seizures. Once we got used to his daily routine, it became almost invisible to us. We can carry on a conversation while rubbing Ethan's arm after a seizure, and barely register that one has even occured. They are like a quick sneeze. Life goes on afterward.

Today I had to call Ethan's neurologist's office to straighten out the insurance mess for his seizure meds again. While I was on the phone with the nurse, I left a message for the doctor. I told the nurse to let him know we were on the max dose of the medication and he was still having between 15 and 30 seizures most days. No big deal, nothing worse than before, but I just wanted to let him know.

He called me back 7 minutes later. Seven. That is never a good sign.

Dr. J is a good doctor but a horrible comforter. He has the worst bedside manner of the dozens of doctors Ethan sees. He is as dry as burnt toast. I'm sure I will get into Dr. J stories with my Ethan history, but suffice it to say I have cried more than once after speaking with him. He is blunt and unemotional and never tries to cushion the possible negatives. On top of all that, I am afraid of him. I have been scolded for not contacting him sooner with different issues, even though I am new at the whole "kid with seizures" thing and don't really know what I'm doing. My only excuse for him is that doctors who deal with children's brains probably don't have much time to be friendly. They are too busy giving out horrible news to terrified parents and kids. For that, I guess I'll give him the benefit of the doubt.

So Dr. J called me back at work and my stomach flipped. Why-oh-why was he calling me back? We already have an appointment in a few weeks, can't this wait until THEN?

He asked me to repeat my story about Ethan's seizures and then said he didn't realize he was still having so many seizures. He wanted to know if we saw the neurologists in Boston when Ethan went for his hip surgery. I tried to explain that No, he didn't need the doctors there because he was doing fine with his seizures after the surgery. He had so many pain meds running through him that he was completely relaxed and calm and had less seizures than ever before. I swear he even had a day with NO seizures. (That would have been an exciting event, if it weren't for the ICU and the body cast and all.)

So Dr. J wants to see us this Friday, before he leaves for a two week vacation. He wants Ethan to have labs drawn, and we'll probably start him on a new medicine. Which, he was kind enough to point out, most likely won't work anyway. Yay.

Then he said the words I had been dreading. "I will probably send you to Boston to meet with the doctors there. I think we may have to start him on the ketogenic diet."


The ketogenic diet is a long practiced treatment for seizures, dating back to before the drugs had been developed. It is a diet of almost all fats, and almost no protein or carbohydrates. Everything I've read about it sounds like it's the Atkin's diet on steroids.

The diet is very effective at treating seizures, bringing about 2 out of 3 patients to much better or even complete control. For that reason, it is definitely worth a try. Even though something tells me that at the rate we're going, it isn't going to work either.

Of course, it has its down sides, too. The diet is very difficult to maintain. The child cannot have ANY carbohydrates or sugars, or he could spiral into even more seizures. This means Ethan's favorites, bananas, are completely off limits. The meal plans are very specific and structured and a nutritionist has to be closely involved. The inital phases of the diet mimic starvation. The child cannot have any food for a day or so. They must be hospitalized to ensure everything goes properly. Some things I've read say that the child must be in the hospital for up to a week or longer until the diet has reached its therapeutic level.

Hospitalization. For up to a week. Or longer.


After hanging up with Dr. J and Googling myself silly, I just sat at my desk and stared at the screen. I felt so goddamn sorry for myself, and for Ethan. I should have known this was coming. Every time things start looking up in one area of his health, we get slammed with a problem in another.

Last Friday, we headed into Boston for our follow-up visit with the surgeon. Ethan has been tolerating a sitting position and is 99% back to himself. The cast is gone, and he only needs his hip brace when sleeping. They don't need to see us again for three whole months. We got a reprieve, a season's pass to enjoy the summer and relax. Breathe again. It felt wonderful.

Then only 72 hours later, the pass was revoked and we were back into the endless doctor's appointments, time away from work, away from CG, hospital stays, being far from home....

It was too much to take. I went into the bathroom and cried. I was physically, emotionally, mentally exhausted. Drained. I felt like I had nothing left to give. We just got our lives back together, and now we have to start all over again. It just doesn't seem fair.

One of the hallmarks of LGS is a "spike and wave pattern" on the child's EEG's. I feel like that is the symbol of our lives the past few years. We go through a spike of stress and worry and hectic appointments, then a slow wave as the problems recede. But every time, just as we think things are calming down we get hit again with another spike. It's neverending.

I'm over the initial spike and feeling a little better. Getting home and talking to Jete helped. There's always a release after I unload some of the worry onto him. We can share the burden together and somehow it isn't so daunting.

I'm trying not to go crazy with worry and anticipation of what might happen. Maybe we can wait a few months before trying him on the diet. Maybe the Boston doctors can consult but he can do the hospitalization locally this time. Who knows.

All I know right now is I'm tired. And his doctor gets to go off and have a vacation. But this? Is IT for me. There are no vacations. I will never have a break from this life. EVER. Sometimes, that is really depressing.

But then I start to snap out of it a little. Ethan smiles and laughs, and I remember that there is a chance we could lose that some day. So I better buck up and start enjoying him while he is still himself. Truth is, I could probably learn a thing or two from him if I stopped being so damn mopey. Life is about right now. Live it while you've got it.

Carpe diem, Ethan. Damn right.

Monday, June 27, 2005

Oh, Boy

The boys got haircuts yesterday - Jete included. My cousin DJ is a hairdresser, and even though she is on maternity leave, she was kind enough to make a housecall. (Of course, I was babysitting her son DC, so she had to come by anyway.)

Jete and Ethan got their usual summer buzz-cuts. Ethan has thick hair like his father, and it grows fast. The shorter we cut it, the less often we have to bother him with the clippers.

This was a bigger deal for CG. He only had one other haircut so far. Nothing major... just a little trim of the bangs and removal of the mullet that had begun creeping onto his collar. But this time, it was serious. It's summer, and hot, and his hair had become a tangled mess. It had grown to mullet-length again. Plus, he loves to run his hands through it, regardless of whatever food or drink he is consuming at that moment.

Jete was all for giving CG the buzz-cut treatment too. But I just couldn't do it. He is only a year old! I wanted him to have a baby haircut a little longer before graduating him to "big kid buzz-cut". We compromised with a short haircut. Not quite buzzed, but not very long. Styled, but cropped. I could live with that.

DJ went to work on his curls. When she was finished, he hopped out of my arms where I had been holding him. We took off the cape, and there he stood. I hardly recognized him. My baby was gone. There in his place stood... a...


That's right. CG is all grown up. What a transformation.

It seems like he feels it too. Since yesterday, he has been acting differently. More daring. More adventurous. I can't stand the stereotypes, but I have to say it... He has been acting like a "typical boy."

You might not have noticed, but I'm a bit of a feminist. I hate traditional gender roles. Girls can be physical and boys can be gentle. Boys can be nurturing and girls can be mean. It all depends on the child. Everyone is different, and I can't stand defining children or adults by an image of what genders are "supposed" to be like.

When I was in high school, I worked nights with an office full of young mothers. They constantly tried to scare the crap out of me about pregnancy, birth, and babies. Of course, everything I knew about childbirth I had learned from soap operas; I had never even heard of a placenta until I started working there. They loved that I was a blank slate; I never tired of their stories.

But one thing that annoyed me was their talk about sons and daughters. They all insisted that having boys was so much easier than having girls. According to their opinion, daughters grew up to be so bitchy, hormonal, snotty and rude, they talked back all the time, and were whiny. Sons, on the other hand, were kind and loving and even tempered. They got mad from time to time, but weren't as up and down with their mood swings like girls were.

I've heard this argument over and over through the years. And I always dispute it. I am a girl, and I happen to think I was much easier to raise than my male cousins were. I had my moments, but every kid does. Growing up is hard work.

Before I had children, I never wished for a boy or a girl like some people do. During my pregnancies, I wanted to know what gender the baby was, but I didn't hope either way. When I was pregnant with Ethan and had an ultrasound, I was glad to hear he was developing normally. I wasn't relieved - or disappointed - to hear he was a boy. That was just helpful in choosing a name.

I have to admit though... I was a little worried. What I knew of the "typical boy" from personal experience scared me. I have babysat for boys, and I have male cousins. All of these boys have the same thing in common. They are fearless.

The boys I knew would stand at the top of a flight of stairs and jump down to the bottom step. Climb the highest tree in the yard and hang on with one hand while trying to grab the ball they had lost. Do flips and jumps on their bikes, without a helmet. They never thought twice about it. My heart would be in my throat watching them, but they'd just laugh.


You might have also noticed that I'm a bit of a worrywart. (Okay, a little more than a "bit".) As soon as I heard "boy" come out of the ultrasound tech's mouth, I knew I was in for a lifetime of stress.

Granted, I would worry no matter what my child was like. It's my nature. But having a boy, who every day challenged the laws of physics and gravity? That was setting me up for a lot of sleepless nights and visits to the emergency room. How is that less difficult than a teenage girl with PMS?

Here I am, 3 years later, with two boys. Ethan never became the tree-climber we thought he would, but CG is making up for it now. He is reaching and climbing and running from the moment he wakes up until the moment he goes to sleep. And I swear, since his haircut, it seems he is climbing higher and running faster than ever before.

This morning, he dove headfirst off the couch about 13 times in a row. Each time, he'd get up, shake his head, and climb right back up. And do it all over again.

Now, who says boys are smarter than girls?

If nothing else, we are in for a lifetime of entertainment. CG is a character. This has nothing to do with his gender. He makes us laugh on a regular basis. Every day he shows us what an awesome and wonderful place the world is. He brought joy back to our lives, and even in the darkest moments of Ethan's struggles, he reminds us to smile.

Whether it is the "boy" in him or a just his nature, he is an adventurer. There seems to be some balance, though. He likes to climb and jump, but he also likes to cuddle and read. I'll do my best to teach him to be cautious without losing his wild side. As the years go on, life will be a roller coaster of emotions; exciting and terrifying from one moment to the next. I have a feeling every day will be a struggle just to keep him in one piece.

Oh Boy. What a ride this should be.

Friday, June 24, 2005

Ethan Part 9: Early Scars

Intial respiratory distress resolved but neurological prognosis remains guarded.

-Ethan's medical record, 8 days old

Things went slowly for a while. Each day we carried the fear that the bleeding in Ethan's brain would get worse, and he would need to have a shunt put in. Fortunately, the CAT scan and MRI he had over the next few days showed that there were no new hemorrhages. Things were stable for now.

When Ethan was 6 days old, we were finally allowed to hold him for the first time. He still had the nasal cannula, but most of the other tubes had been removed. The nurse helped us kangaroo him against our bare skin, a technique often used in the NICU. I took pictures of Jete holding Ethan on his chest. He was so tiny, he looked lost in Jete's chest hair. But he slept peacefully.

Further CAT scans the next few days showed the bleeding in his brain was starting to recede. Where it had previously been they could see signs of atrophy. The damage had begun.

The doctors explained that the damage in Ethan's brain was widespread. He had dozens of clots of all different sizes. I'm no brain expert, but I knew different areas control different things. I wanted to know what parts were damaged. The walking part? The talking part? What would he be able to do and not do? But it wasn't that simple. So many parts were damaged, they had no idea what function was destroyed. Or more importantly, what functions remained.

It was hard for us to look at this little baby - improving every day, eating well - with the realization that parts of his brain were dying. He looked like any other newborn in the NICU. Any other newborn I had seen, for that matter, minus all the tubes and wires.

But the doctors continued to be grave when they spoke to us. It seemed like they were afraid to give any glimmer of hope. We would ask questions every day.

"What will he be like? Will he be okay?"

They answered, hesitantly. "We don't know. We can't promise anything."

It was frustrating, to say the least.

My biggest fear was that he would be a "vegetable". That he would never be able to interact with us, never be aware of the world around him. I knew of a family who had to send their baby to a nursing home after birth because they couldn't take care of him. Would that happen to us? Would Ethan ever come home? But I didn't ask all those questions. I didn't want to know the answers. Besides, we knew what the doctors would say anyway.

"We don't know. We can't promise anything."

Occasionally, we would get a doctor who would offer a small bit of "good" news. If a stroke had to happen, this was the best time for it to happen. Infants brains are very pliable. Since the brain is wired to rapidly develop and change the first few years, there was a slight possibility that some of the areas could start to repair themselves. There was no telling what could be recovered.

It wasn't a miracle, but it was our last hope. We took what we could get.

The pathology results from the placenta finally came back. The clots they had seen visually were actually widespread. Forty percent of the placenta was clotted, and it was extremely small for the gestational age. That meant that in my last few weeks of pregnancy, Ethan was only getting about half of the oxygen and nutrients he needed. He had been slowly starving to death.

The clots concerned the doctors. One of us - Ethan or I - must have a clotting disorder, they told us. The neonatologists took tube after tube of blood from Ethan to test for things I had never heard of. Protein C. Protein S. Factor II Mutation. Anti-thrombin III.

Dr. F ordered the same set of blood tests for me. If I had a clotting disorder, we had to know right away. I could have a clot or a stroke. It would doom any future pregancies to the same, or a worse, fate. It was terrifying, but comforting somehow. At least we would know what had happened, and it could be treated. We would finally have some answers.

We continued our routine day after day. Mornings, I would go to the NICU by myself. Jete would work, then I would go home in the afternoon and we'd go back to the NICU together. When we couldn't go, there were always grandparents there to visit. If nothing else, we knew Ethan was loved.

The clotting tests were so rare and specialized that they had to be sent to a clinic in another state for analysis. In the meantime, we waited. Waited for the results. Waited for some answers. So far, we had nothing but questions.


Friday, June 17, 2005

Redecorating - Part 3

I know, I know.

I just did the web equivalent of rearranging your living room for an entire afternoon, only to put all the furniture back EXACTLY where it started.

I haven't been satisfied. I like this template. Most of the time. But I still feel like there is a certain darkness to it. So I tried about 4 other templates. One reminded me of the company colors from that family-run business I worked for (shudder). One was okay, but just too BLAH. Very dull and lifeless. Nothing else touched me.

So here I am, back again.

In the process I completely lost the customized changes I had made to my template for extra links and stuff. I have a backup in a text file (yes, I am that geeky), but somehow when I thought I copied ALL, I really only copied HALF. For a little while, the garbled template was making my site completely blank. I'll have to admit, I had a bit of a panic moment there.

No need to fear, I have recreated it as I can best remember. An hour wasted messing around for nothing, but that's okay. I had fun. Sort of.

Not quite the exciting Friday nights of my youth, but I'll take entertainment in any form these days.

Communication Gap

I'll admit it. I love reading blogs. I read ones written by all sorts of people. I'm a nosy, nosy girl and this is the most gossip I have ever been privy to.

(And yes, I like to use random words like "privy" from time to time.)

I read several blogs written by people struggling with infertility. (Hi Cecily, Julie, and Tertia.) I have not had to deal with infertility myself (hence the two "surprises" sleeping in the other room), but I feel a certain bond with them. Going through a pregnancy riddled with complications and having a child with special needs makes you different. My body could not handle the fundamental process it was designed for - conceive, stay pregnant, and give birth to a healthy child. Rational or not, I live with an overwhelming feeling of failure most days and a bitterness that will stay with me for the rest of my life.

One of these women is in the process of adopting a little girl from China. A lot of her entries lately are about the ridiculous things people say (or, sometimes worse, don't say) regarding her upcoming adoption. I'm interested because I know I am totally one of those stupid people. Her writing is very educational.

A friend of mine was adopted. I know almost nothing about the details. She doesn't talk about it much, which is totally her right. And really, I never ask. I wouldn't know what to say or not say; what is None of My Damn Business and what she'd actually like to talk about. It's easier to say nothing than to cause hurt feelings by saying something dumb. I am the master of putting my foot in my mouth, so sometimes, it's just better if I keep it shut.

Having a child with special needs, I know all about both stupid questions and the lack of any questions. I'm not really sure which is worse. Right or wrong, most of the time, I try to avoid the topic completely.

I walked out of work this afternoon and a woman from my department caught up with me. She had overheard me earlier today and asked if my son's name was Ethan. She loved that name, and wished her pregnant sister would use it if she had a boy. This was neutral conversation, no big deal. Then it got a little more detailed.

"How old is he?"

(wracking my brain... hmm...uh...) "He's 3 and a half."

"Plus you have a baby, right? Wow, you have your hands full!"

"Yeah, we do." (quick dash for my car) "Well, good night!"

You would think "How old is your son?" is a simple question. But really, it isn't. I knew this woman did not know about Ethan's issues. So saying he is "3 and a half" gave her a whole different picture of my life. What should Ethan be like at "3 and a half"?

Going to pre-school and playing t-ball; potty-trained and learning to dress himself; questioning everything and full of wonder; running and climbing and playing.

Yes, with all of those things our hands would be full. And they are full, but full of other things.

Fighting insurance companies and arranging special ed; battling seizures and inconsolable mornings; feeding soft foods and changing diapers; surgeries and casts and physical therapy.

Her picture and my reality are two different things. But in a 3 minute conversation at the side of my car, it just isn't important to me that she see the truth. Let her assume he is "normal". What harm can it do?

I feel guilty, but I hate talking about Ethan's problems to strangers, and even acquaintances. I never know how much information to give. When someone asks something as simple as "How old is he?", I always feel like there should be a "But!" at the end of my answer.

"He's 3 and a half.
He is developmentally only 6 months old and he is blind and will never walk and is mentally retarded."

The average stranger on the street doesn't need - or want - to know all that. And I didn't want to get into all that with this woman. I see her infrequently and we might not have another conversation for months.

It isn't that I am ashamed of Ethan, or that I don't want to talk about him. I have no problem shouting all of his issues and successes from a rooftop (or, you know, the internet). It's just that, most of the time, it isn't a simple answer. And I don't feel like starting a 2 hour conversation on my way out of the office.

And honestly? I really, really hate the Pity Stare.

You know the Pity Stare. Be honest. You've given it a few times. I know I have.

As soon as I tell someone my son has special needs, or is blind, or whatever, I get that glazed-over look. They cycle through emotions rapidly before my eyes. First, they feel stupid, as if somehow they were supposed to be psychic and instinctively know this already. Then they feel sad, for everything he's going through. Then they feel scared, oh, man, what should I say, don't say something dumb, don't say something dumb. And then they look at me like I'm a puppy about to be put to sleep.

I hate that look. Even better are the comments.

They feel guilty. "Oh, I'm so soooo sorry." It's nice and all, but I always feel the urge to remind them that it isn't their fault.

Or, they try to be helpful. "Did you try XYZ drug?" "I hear hippo/hydro/smell therapy is really good for that." "Did you try calling the ABC agency? You would definitely be able to get money." Most of the time, they are misinformed or just plain crazy. But, they kindly tell me, if I really loved my son I'd try anything. Okee then.

Or, they say something dumb. "Oh, my cousin had a daughter with problems when she was little, and she had therapy and she's FINE now. She walks and talks and EVERYTHING!" Yeah. Different kid, different prognosis. But thanks.

Or, they are too dumbfounded to say anything. "Oh, um. I... Oh." That's fine, too. I don't expect witty commentary or anything.

To avoid the Pity Stare and crazy comments, I usually try to keep Ethan's situation on a Need to Know basis. Family, friends, people we care about, work with every day, they Need to Know. So we tell them and get all the information out in the open. But everyone else can live in a fantasy land as far as I'm concerned. They just don't Need to Know.

Jete and I aren't support group type of people and we aren't close to anyone else with a child like Ethan. But I'm curious how other people handle the questions from those who don't Need to Know. Like:

"Isn't it exhausting chasing after him all day?

(upon learning I have a 2 sons) "How do they get along?" or "Does Ethan like his little brother?" or "Is he a big helper with the baby?"

"He must be getting ready to go to kindergarten soon, right?"

"Does Ethan like to (watch the Wiggles/play sports/fingerpaint/go to the zoo)?"

(and, our all-time-favorite when going out with Ethan) "Is he sleeping?"

Over time, I'm sure we'll get used to the questions. And the Pity Stares. I'm pretty tough skinned, and I honestly don't care what people do or don't say. I know 99% of the time it's a combination of ignorance and good intentions. To people with whom I care enough to share the details, I usually give my stock answer:

"He's happy. He's healthy. We're all doing just fine."

And really, that's all that matters.

Thursday, June 16, 2005

Ethan Part 8: A New Picture

Her prenatal course had been complicated with intermittent elevation of blood pressures although there were no findings strongly suggestive of pre-eclampsia.

-My Discharge Summary; Ethan 5 days old

My remaining days as an inpatient passed in mostly a blur. To add to the excitement, I sprained my ankle my second night there (for the third time). Jete had to push me around the rest of the days in a wheelchair since they were terrified I would fall again and sue the hospital.

We spent as much time as possible visiting with Ethan. Since the family members were still pouring in, it was mainly a one-parent-at-a-time event. And since I was laid up with my sprained ankle, it was mostly Jete and the family members. I didn't like having so much time to sit alone in my room and think.

In the first few days, Ethan seemed to be improving. He had been on anti-convulsants since his first suspected seizures, just in case. But the nurse mentioned that she hadn't seen any more seizures and they were weaning him off the medicines. The genetic testing had all come back negative. They were able to remove the tube from his throat since his breathing was much improved. He still needed a cannula on his nose, but it was definite progress.

Once the tube was out, he was able to start having small amounts of breast milk, at first by a syringe, then later from bottles. He tolerated feedings very well. They were pleased to see he had an excellent suck and swallow pattern. They gave him the tiniest pacifier I had ever seen. We still weren't able to hold him, and it really seemed to comfort him.

Ethan had his repeat head ultrasound, and they also did an EEG to look for any more seizure activity. Unfortunately, it was the weekend, so we were told it would take a few days to get the results read and explained to us.

The fifth day came faster than I had expected. Discharge day. My blood pressure had come under control after Ethan's birth. I was healing well. There was no reason for them to keep me. Dr. F came in to see me for my discharge. He took out the staples and patted me on the foot again. Everything looked great. I was all set to go home. Alone.

Around that time, the shock started to wear off. I felt like I never saw Jete or Ethan between all the visits. I was terrified about the results of all the tests. And I wondered about my own blood pressure. Dr. F had said I had underlying hypertension, and it wasn't related to the pregnancy. Did that mean it would shoot back to 200/100 like it had been before? Yes, it was under control now, but it obviously wasn't consistent.

Finally as Jete returned from a visit with an uncle, and the doctors in the NICU repeated that the tests weren't back, and another new nurse wanted to watch me pump again, I lost it. Between the hormone shift and all of the stress, I couldn't take it anymore. I started crying.

Jete finally got the hint, and sent all of the family away. He wheeled me down to the NICU and we spent the rest of the day with Ethan, just the two of us. The nurses saw my eyes and insisted we could stay as long as we wanted. And when I got home, we could call any hour of the day to check on him. He was in good hands. It would all be okay.

Later that night, we got my things together and headed home. The car ride was strange. It felt so wrong to be leaving Ethan behind. I stared out the window. Only 4 days before I had driven to my appointment past these same roads. Yet it didn't seem like the same world outside. Ethan was with me then. Now, he was away from me, separated forever. Everything was different.

That night, we got into bed. I noticed how quiet the house seemed compared to the bustle of the hospital. We lay there looking at each other. Talking about Ethan. I started to sob again. This time, I couldn't stop. Jete, normally very composed, cried too. Finally, exhausted, we fell asleep.

Jete went back to work. He planned to save his two paid weeks of paternity leave for the time when Ethan came home. I couldn't really drive with my sprained ankle, so I stayed home by myself all day. I called to check with the nurses, and they said he had a good night and was resting comfortably. As soon as Jete got home, we headed back to the hospital. This became a routine we repeated every day for weeks.

As soon as we arrived, the nurse told us that the doctors wanted to meet with us. They had the results of Ethan's tests. They would be over soon.

We visited with Ethan as usual, feeding him his tiny bottle and changing his diaper. Finally the doctors came over to see us. The neonatologist was accompanied by one of his residents. They pulled up chairs. They had papers in their hands. They asked us to sit down too.

The main doctor did all of the talking while the resident listened. He was very grave. He told us that they the head ultrasound did not look good. It showed multiple areas of damage in Ethan's brain. Of course, they used different words. Doctor words. Periventricular. Hematoma. Hemorrhages.

Basically, Ethan had massive brain bleeding. The newborn version of a stroke. This caused the seizures his first few days of life. The bleeding had not been there on his first ultrasound, or, was just starting and was so slight it would not have been noticed. It was widespread, not just limited to one area. They definitely wanted to do a CAT scan and possibly an MRI to get a better picture.

They didn't think it was going to get worse, but they would have to monitor him for quite a while to see if the bleeding was going to spread. If it spread further and started to cause pressure on the brain, they may have to put a shunt in to drain the blood. Unfortunately, the bleeding had also occurred in areas of the brain that could not be reached to drain. We would just have to wait and see. Their gut feeling was that the worst had already happened and now the healing would occur. They had seen colors on the ultrasound that told them bleeding had damaged parts of the brain but had since receded.

The doctors waited for us to speak. We didn't really know what to say. One of us asked what this meant for Ethan. Long term? The doctors brushed off our thoughts of the future. Right now, we needed to watch Ethan and make sure the hemorrhages would start to clear up. Then, we could see the full extent of the damage they had caused. The future was a long way off. There was no point in thinking about that now.

Of course, once the doctors left, the future was all we could think about. We looked at Ethan laying there so comfortably. We would have never guessed what was going on inside his skull if they hadn't told us. What would become of him? Would he live through this? Would we?


Monday, June 13, 2005

30 Things I Learned This Weekend

In honor of E's 30th birthday (and, ahem, mine recently passed), I thought I'd do a list of 30 highlights from my weekend in the big city.

1. Getting lost is a good thing. Yes, I got lost on the way to E's apartment. Yes, I ended up in a different town/city. But - I learned my way around like I never would have otherwise. And I had the pride of figuring it out myself, even if it did take an extra 45 minutes. It's all good.

2. E's apartment is very nice. The third floor, with wonky stairs, and HOT, but very nice. Charming, even.

3. 4 star hotels are super friendly. Our concierge was kind enough to change us from a one-bed room to two, and even made sure we weren't afraid of heights before giving us a room on the 27th floor. And, he let us know we could probably talk to God from up there. Hee.

4. 4 star hotels have AWESOME beds. So. Nice. I thought we should just ditch the rest of the weekend and take naps instead. They had cushy comforters and four pillows. I never wanted to leave.

5. Crazy people enjoy Barnes and Noble. And like to shout out "Hi Asian lady!!" in a loud voice. But, no, Mr. Bookshopper, I don't think she was having a stroke. I think she's just crazy. It happens.

6. E's friends are great. I finally met most of the Boston crew, and they were nice and funny and fun. I guess her good taste in people has continued since high school.

7. Kicky is my new favorite word. And E has a lot of kicky clothes. Her wardrobe Saturday night involved a kicky skirt and a kicky bag. Her hair, however, was not kicky but flippy.

8. Never underestimate your friends. Sometimes, friends who are Always Late can show up on time (ON TIME!), and other friends who claim they are coming out will not even call.

9. Togetherness is cozy. Yes, 6 people can jam into a booth built for 4 and have dinner. And, yes, 6 people can jam into a Jeep. It can be done.

10. Don't rely on the waiters to help you. Sometimes, you need to get up and get your own napkins. Or rearrange the meals that were given to the wrong people. Or clean up the margarita that he spilled into your shoe.

11. Boston is HOT. And I'm not talking Paris Hilton hot. I mean H-O-T, 90 degrees and HUMID hot.

12. I hate being hot. Okay, this isn't something new I learned, but something I relearned. I'll admit it. Air conditioning has spoiled me. I HATE BEING HOT.

13. "Free Parking" isn't really free. Just cause it's free parking doesn't mean I want to hike from my house in Western Mass to a bar in Boston. Or, you know, a 20 minute walk within Boston either. When it is HOT.

14. There are a lot of boats in Boston. I think we passed all of them on the walk from the car to the bar. And they are very nice. Really. I'd love to be rich too.

15. Sometimes, it isn't worth the wait. Luckily, we didn't stand in the mile long line for the first choice bar. Cause it was HOT.

16. I am old. The people in the mile long line? Looked like they were still in high school. I felt like I could be some of their mothers. Also, H was kind enough to point out that the high school graduates of 2005 were in KINDERGARTEN when we graduated from high school. Ouch.

17. Second choice is sometimes perfect. The bar we ended up in was very nice. Not too crowded, not too empty. The music was great, and the people were nice. And? It was AIR CONDITIONED.

18. Sailor's hats look dumb. The uniform is fine, but if you want to pick up chicks, lose the silly hat. Just a suggestion.

19. Boys are weird. Why go out of your house if you are going to text message your friends all night instead of conversing with the REAL LIFE people right there in front of you?

20. People like to text message. A LOT. I just don't get it. Does it not take longer to type out the message on that little keypad than it would if you just, say, DIALED the phone and spoke to the person? I think this goes with #17. I am old. I don't get into it, and I feel like I'm talking about that "newfangled television set" or something.

21. Bars are loud. And somehow, that makes it okay to scream out "That bartender has a great ASS!" at the top of your lungs.

22. Taxis do not always like to pick you up. Apparantly, 3 in the morning is one of those times. Also? Lots of drunk people trying to hail a cab without success is kind of funny.

23. Tipping well is okay. Yes, I gave the cab driver 20 bucks for the 8 dollar fare. SO SUE ME. I did this because a) he picked us up, when no one else would, b) it was HOT and I didn't feel like walking a half hour back to the hotel, c) he was both psychic AND an astrologer, and d) did I mention it was hot?

24. I can fall asleep FAST. Listen, I am old mother now. I can't stay up all hours like I used to. So when E paused with her drunken chatter (said with the most love!), I guess I fell asleep. I know this because she heard me snoring. It was almost 4 am! The last time I was up that late/early, it was because CG was still getting up 3 times a night.

25. Valet guys like to relax in your car. Apparantly, our valet driver took a nap in my front seat while listening to REO Speedwagon. The driver's seat was reclined into the backseat, and he had taken the CD out of the holder and put it on. He was already on the second song. Funny, he didn't look like an Speedwagon fan.

26. I LOVE to eat out. A lot. Again, not news, but still. And the Cheesecake factory makes a mean french toast. Yum Yum Yum.

27. Castle Island is beautiful. I'm sure I would have enjoyed it even more if it wasn't, well, HOT. But it was still gorgeous.

28. I can drive in Boston! I am very proud of myself. I forced my way into the roads like any local, and even parallel parked. Whoo-hoo! My biggest piece of advice for driving in Boston? Just go. Don't second guess or be nice. You'll be respected more if you are ruthless.

29. Torrential downpours make it hard to see. I got hit by a flash thunderstorm on the way home. It was like someone throwning giant buckets of water at my windshield every second. My windshield wipers were laughing at me. I finally had to get off the Mass Pike and wait it out for 15 minutes or so.

30. Coming home is the best part of vacation. As much fun as I had, it was still great to come home. Refreshed, exhausted, but happy.

Happy XXX E! Heh.

Friday, June 10, 2005

Deep Rest

I have been so sad lately. I think I'm mildly depressed.

I can't pinpoint why exactly. And then I get really mad at myself. I have no good reason to be sad! The boys are doing well. They are healthy and happy. Ethan is slowly nearing the complete removal of his cast. CG is developing ahead of the curve. Jete is as great as ever. Work is fine. Our house is starting to come together.

But I dwell way too much. I can't stop thinking. All day long, my mind wanders and I start getting sad again.

My sister is a teacher, and told me the other night about a mother from her school who died last week. It was sudden, a pulmonary embolism. She was 34. She has 6 kids. The youngest is only two weeks old.

I didn't know this woman, or her kids. But I keep thinking about it. It breaks my heart. That baby will never know its mother. Those children needed her. Their lives will never be the same. Losing your mother is something you never truly get over.

And then of course, the hypochondriac in me says "What about me? If this woman was so seemingly healthy, what the hell keeps me alive?" Now, in addition to the heart attack I'm sure will strike any moment, I twinge at every muscle ache. I'm sure it's a blood clot traveling to my chest to kill me.

I don't want to think this way. I know better. But still I do it.

Then the news gets me down too. Just this week I've read stories like this. I started crying at my desk when I read it. I could picture her mother, frantically trying to stop her from running out into the road. And the girl, so eager, so desparate to help an animal.

It seems like such a waste. Life just doesn't make any sense sometimes.

I need to get out of my funk. I know I need to exercise more - or at all. I will feel better if I do. When I move around, I'm not as scared at how out-of-shape and near death I am. I just can't seem to do it. Every time I want to work out, I can't. And every time I can, I don't want to. Something's got to change.

There is a weight on my chest. It's purely emotional, that ache you get right before you start crying. Yet it feels so phsyical. I can't get rid of it. I feel like I'm going to burst into tears. Or like I NEED to burst into tears, if that makes any sense. I need to purge the bad feelings and move on with things.

Anyway, I'm trying to reverse my attitude. Even just writing about it has helped a bit. I get inside myself too much. The more I internalize everything that gets me down, the worse I feel. It starts to eat me alive.

I'm going away this weekend, to visit E in Boston. I want to have a great time. I will have a great time. We've got big plans to see the town and eat great food and meet interesting people and stay in a 4 star hotel. Nothing ahead but fun and adventure.

I will not let life get me down. It is so short, I just want to LIVE and enjoy every minute of it.

See, now I want to cry again. But good tears. "Life-is-so-rich-I-can't-stand-it" tears.

I'm such a girl.

Wednesday, June 08, 2005

Redecorating - Part 2

Okay. I'm sticking with the template. For now. Mainly because I don't feel like recreating all my links and stuff. I'm not loving the font color though. So it might change again. When I'm not feeling so lazy.

I am changing one thing - I'm making the font size bigger on the entries. I've been making them smaller because my stories are so long-winded. Somehow, I felt like I wasn't the rambler I really am if the words were smaller.

Honestly. Who am I kidding?

Anyway, I figure even if my writing isn't always interesting, the least I can do is make it legible.

Last change. For now. I can't help it, I'm... well, you know.

Tuesday, June 07, 2005

Ethan Part 7: NICU Sweet NICU

[Possible] seizure activity. Has been loaded with Phenobarb. Obtain head ultrasound and CAT scan as permitted and will obtain pediatric neuro consult today. Overall baby is in satisfactory condition although critically ill.

- Ethan's medical record, 2 days old

The next morning, we headed back to the NICU. The doctors were doing rounds. The hospital is a teaching facility, so students were going from station to station learning all about the babies and their conditions.

When we arrived, we were given an official rundown of the rules of the NICU. Only two visitors at any time by Ethan's bedside. We and our parents could visit at any time, but anyone else had to be accompanied by one parent. When passing by, we should never pause or look at the other babies. Never make eye contact with the families. The rules were all about privacy, respect. It was very clear that some of these babies were going home, and some were not. Some would spend a day for observation, some would be kept for months. We wondered which category Ethan would fall into.

The doctors stopped to speak to us. For the first time, we were told that Ethan had to be rescusitated at birth. He was born with Apgars of 1 (1 min), 1 (2 min), and 4 (5 min) . Very low. He had a faint heartbeat, but was not breathing or moving. The doctors had to perform full CPR to bring him around. It took 10 minutes to get him to a barely-passing score of 6.

The reason Ethan was so small was that his growth in the womb was stunted, causing Intra-Uterine Growth Restriction (IUGR). His IUGR was symmetric, meaning his head growth had been stunted along with his body. Later, I learned that the most common version of IUGR is asymmetric. Normally, under stressful conditions, the body growth slows in order to spare the brain. The baby is born with a closer-to-normal head circumference and a smaller body. Ethan's type meant his brain growth had slowed as well as his body.

The nurse was not sure, but thought she might had seen Ethan have seizures during the night. Seizures in newborns are very subtle. They can be as simple as a twitch, and unless you know what you are looking for, you could miss them. He was having "bicycling movements" in his arms and legs. She showed us one while we were there, but it looked like normal baby movements to me. She mentioned it to the doctors, and they scheduled a second head ultrasound.

The doctors seemed baffled by Ethan's condition. They asked me question after question about my pregnancy. Did I have any complications? Just high blood pressure. Did I have an illness in the last few weeks? I had a slight cold, just a stuffy nose. Maybe I had some sort of infection that had spread to the baby? I felt fine, so I couldn't explain that.

They mentioned he might possibly have a genetic disorder. They examined every inch of him, looking for signs. His ears did seem slightly low on his head, they said. And his neck was "webbed". I looked at his ears and neck. They looked fine to me. But combined with his bent hands and small head size, they wanted to be sure. They ordered dozens of labs to check for abnormalities.

We could not hold him or feed him. He was on IV fluids and seemed swollen. We stood and watched him for a long time. We talked to him, though we didn't really know what to say. At one point the nurse pointed out that he seemed to have more of the bicycling motions if we stimulated him too much. We shouldn't really touch or bother him too much. We didn't see the movements, but we stopped touching him anyway. We didn't want to hurt him.

As time went on, I was getting tired again. We knew there were family members who wanted to come down and visit, and they couldn't come in while the two of us were there. Jete brought me back to my room and started taking on the role of host to members of both of our families. I hardly saw him or Ethan for much of the next couple of days.

Late in the afternoon, Dr. F stopped by to see me. He asked how I was feeling and checked out my incision. Everything looked great. He had stopped to see the baby, and he said he was stablizing, so that was good.

He asked me if I had any sort of clotting disorder. No, not that I knew of. He mentioned that the placenta seemed to have a lot of clots in it. They had sent it off to pathology to be tested. He asked, maybe someone in my family had a clotting disorder that I didn't know about? Often people had a genetic disorder that they weren't even aware of. I couldn't think of anyone. He told me not to worry. Once the pathology results came back, we would know more.

After he left, I thought about what he said. Maybe I had a genetic problem that had caused Ethan to be so sick? Or were the doctors in the NICU right, saying he might have a genetic problem? Maybe, like Down Syndrome, it was a problem that was there since conception. An unlucky twist of fate. If so, no one could have known. There was nothing I could have done to change things. It wasn't my fault.

Or was it? I still had so many questions. Obviously the doctors did too. I tried to get some rest. We would know more in the morning, after his tests were done. He was stable and so far everything had looked positive other than those weird movements. They didn't look like anything serious anyway.

He was alive, I thought. After all he had been through, that was all that mattered. We could get through anything else.


Monday, June 06, 2005

I Will

I'm not sure how many of you there are out there. I check my visits, and I'm shocked to see more hits than I'd expected. From friends I know and strangers I don't. In California. Canada. Denmark. I wonder how you got here. And more importantly, what brings you back.

For any of you wondering... yes, I'll get to the next part of Ethan's saga. Soon. I'm just having more trouble getting it into words as I get deeper into it.

Partly, it's because life is crazy right now. Every weekend for the next two months is booked. Weeknights are all about the boys. CG has decided not to nap anymore. Ethan has starts twice a week physical therapy today. Plus regular trips to Boston for follow-ups.

Partly, it's because I almost feel like I'm reliving the experience as I write the words. And it hurts all over again. So I practice my favorite coping skill - avoidance. Procrastination always appears when I am stressed. (Hey, don't knock it. It got me through college with a 3.9 GPA.)

Mostly, it's because so much happened so fast, I can't even put it into words. And I can't remember the sequence, just a blur of news and tests and emotions. But I want it to make sense. To me, and to anyone else who cares to read.

One of my reasons for starting to write about this is so I don't forget. I've already lost so much to a poor memory, and I don't want to lose any more. I've been going back to his medical records, pictures we took, asking people what they remember. But with my long-windedness and just the sheer amount of STUFF that happened, it's taking a little time.

But I will finish. Eventually.

In the meantime, I may intersperse heavy stories from Ethan's NICU stay with my trip to visit E in Boston next weekend. Or details of cold-hearted doctors with something funny I heard at work.

Because as much as it seemed like Ethan's first few years were the end of the world, they weren't. It was hard, and it hurt a lot. Some days, it still does. But it is almost 4 years later. And our lives are back in balance. We go to doctors' appointments and birthday parties. We buy splints for Ethan and CG's first pair of shoes. There is a light at the end of the tunnel. Life does go on.

This weekend, Jete's aunt and uncle renewed their wedding vows. It was the day after Jete and I had a huge fight over nothing, so it seemed odd timing. But as I sat in the church and listened to them repeat the vows, I couldn't help but think about us.

"In good times, and in bad.
In sickness and in health.
In joy, and in sorrow."

In our five short years of marriage, we've already challenged most of those vows. We knew we'd go through the ups and downs over time. We just didn't think they'd come so damn fast.

But I can't deny that I've had as many good times as bad. That, as hard as it gets, my life is filled with more joy than I feel I deserve sometimes. So there's no reason I can't write about both sides of life. The bad, and the good.

And once I get over that procrastination thing, I think I will.

Wednesday, June 01, 2005

Ethan Part 6: Aftermath

When my time in recovery was complete, I was moved to my room. This was not a cozy, homey room like the one I was originally brought to - this was the c-section ward. Standard hospital rooms, complete with roommate. Cramped, sterile, and cold. No privacy except for a thin curtain between the two beds that was missing half of the hooks anyway. Clearly the hospital felt us "surgical patients" didn't need the comforts of the laboring mothers.

Luckily, I only had a roommate for about 15 minutes. The girl was packing up while her baby waited in a carseat on the bed. She muttered to herself as she got her things together. The nurse pulled the curtain between our beds closed as far as it would go. I watched the baby playing quietly on the bed. After a few minutes, they were gone.

It was getting later in the day and dinner had already been delivered and removed from my room. I wasn't allowed to eat yet anyway. The nurse came in and showed me how to get out of bed. I couldn't believe I was walking already, but the drugs were keeping me feeling fine. My first trip was to the bathroom to learn how to deal with the fun stuff that comes out of the body after the baby. (Yes, for any of you wondering, c-section mothers have it too. Or maybe I was the only naive one out there.)

As the night wore on, I asked the nurses again when I could see the baby. Soon, they kept telling me. They were getting him stable. I could go down once we were both up to it.

In the meantime, the nurse brought in a breast pump and showed me how to start using it. I had been wavering during my pregnancy about whether to breastfeed, which I knew deep down was best, or formula feed, as most of my friends and family did. But once I knew he was in the NICU, my decision was made. There was no doubt in my mind that this was the best I could do for him. I started pumping every 3 hours. Jete brought the little jars with the dropfuls of colostrum down to the nurses' station refrigerator. We would bring them with us when we went to see him.

Finally around 11 pm, I asked a different nurse about Ethan. This nurse was shocked to hear I had not yet been allowed to see him. She called the NICU to clear it. "You can go see him now."

I was so scared to see him. What might he look like? I had seen pictures of premies, with their downy hair and paper thin skin. But Ethan wasn't a premie. I was almost 39 weeks, practically full term. He shouldn't look like that. Right? But I remembered his weight, under 4 pounds, so I knew he was small. Jete could only describe him as red and scrawny. And beautiful.

Jete grabbed the bottles from the refrigerator and wheeled me down to the NICU. We stopped first at a window where a crotchety woman asked for our names and the patient's name. She called back to the nurses' station to see if we were allowed in. "Ethan's parents are here." It sounded so foreign. Once satisfied, she released the first set of doors.

We moved into the washing station. Lockers lined one wall and sinks stood across from them. Above the sinks were shelves containing dozens of yellow gowns. We were to wash our hands for several minutes with the hospital soap and don a gown over our clothing.

Once we were sterile, Jete wheeled me around to Ethan's station. There were 6 incubators with babies in each one. I wondered which was him. I couldn't tell. The room was dark and muffled, with just the constant humming and beeping of oxygen and monitors. It was late, and most visitors had gone home or back to their rooms to rest. I was glad there weren't too many people around.

Ethan's nurse came over to greet us as we neared his incubator. I had to stand up from the wheelchair to see in. A piece of lamb's wool lay under him to keep him warm. He was sprawled out flat on his back. He had wires and tubes going to his foot, his arm, his chest. He had a tube down his throat to help him breathe. The monitors were measuring his pulse, blood pressure, oxygen level, heartrate.

Somehow, he didn't look as small as I had imagined. He had reddish skin, and, I was surprised to see, reddish hair, too. He had on a little knit cap but slight tufts peeked out from under it.

Here he was. Our son. He had been inside of me only this morning. It was overwhelming.

The nurse explained Ethan's situation, but most of it went unheard as I stared at him. She said the doctors would be by in the morning to explain everything. They had done a head ultrasound earlier and everything looked fine. I didn't understand why they did the test, but I wasn't really paying attention anyway. I heard her mention that they were concerned about his hands. I looked at them, laying on his chest. They were bent, with his fingers folded in. She said a therapist would be in to look at them. She asked me, How early was Ethan? I told her No, he wasn't really early. I was almost 39 weeks. She looked surprised, but said nothing.

We were allowed to touch him, but only lightly. He started to cry, a pathetic squeak came out, but nothing more. The tube was preventing him from making any noise. He looked like a tiny bird, crying with no sound. Jete said, "I could just stay here and stare at him forever." We almost did.

I was getting tired, so we headed back to the room. Jete was going to spend the night with me, which was a relief. I would have to get up every three hours through the night to pump. Ethan wouldn't be eating until the tube was out, but I wanted to have as much stocked up as possible. We wanted to be ready for him, to help him get bigger and stronger, so we could take him home. That was all we talked about. Once we could get him home, everything would be okay.