Tuesday, September 29, 2009

Daddy's Perspective

It's funny how when something bad happens that is completely out of your control, you find anything you can to blame. When the news about our baby came in, I blamed this blog. I blamed myself for creating this blog. And for telling so many people. I'm not a religious man, but I am very superstitious (anyone who was with me during the '94 NFC Playoffs or the '02 World Series can attest to that, and I am sorry if I yelled at you for changing positions in the room). I felt that I had somehow jinxed everything by celebrating too early. I know it sounds crazy, but it's how I felt. I know that we are not in the clear yet, and I hope this doesn't jinx anything, but I want to write about how I am feeling.

When that call came in, it seemed as though it was a call I had been dreading my whole life. I have always worried that I wouldn't be strong enough to be the parent of a special needs child. My classroom is directly across a driveway from a school for special needs children. I see their parents drop them off in the morning, and I know that even that can take tremendous effort. I have always admired those parents and questioned my own ability to handle that kind of lifestyle. Anyway, back to the call. I was surprised by myself. I was confident and sure. I helped take care of Tori as she sobbed into my chest. I wasn't numb. I wasn't confused. I knew what I had to do in that moment. I had to be strong for my family. I have never felt more like a man.

I was surprised again when we saw our son's (still feels weird saying it) little...um...thing. I have always been sure that I would have only daughters. I have never imagined what it would be like to raise a son. I was fully prepared in that moment when they showed us the sex of the baby to celebrate that we were having a baby girl. When we found out that we will be having a boy, everything flipped around and swirled in my head. I saw his whole life as it related to me, playing out in my mind. It happened in a flash, but it changed this whole thing for me. I saw him taking his first steps, saying his first words, teaching him how to play baseball and, for some reason, especially football. Tori bought this great football chair and I could see him sitting there next to his daddy watching football on Sundays. And then I remembered that that little boy in there with the perfect looking head, heart, feet and hands might not make it. I was so happy and so distraught in that moment, I thought my heart might give out.

When the next call came in, saying that the test came back normal, all of those images of his life came rushing back. This time, however, I was in front of my 4th period English class. (They immediately planned a baby shower when I told them the news) As the time has gone on, I am getting more used to the idea of having a boy, but I don't know if it will fully set in until we know all of the tests have been done.

Tori has been great and we are feeling very hopeful and optimistic right now. We are trying to stay realistic and remember that we are not out of the woods yet, but we have been laughing and that is the sign to me that things have gone back to normal (somewhat). We have put the finishing touches on the apartment (no more boxes in the living room and the baby's room is somewhat cleared out so that I can use it as my workout room in the morning) and it is starting to feel like home even more.

Probably the second most exciting news aside from the test results is that our little "bug" as Tori has begun to call him has started kicking. Kicking isn't really the word for it actually. It's more like fluttering. And I have even felt the little flutters. Apparently he doesn't like it when his mommy does crunches. It is starting to feel very real now, and I have never felt more ready. I know now that I can be strong for my family. That I am a man.

Thursday, September 24, 2009

Good News

We got some good news today! Stephanie our geneticist called with results from Baltimore regarding the Smith-Lemli-Opitz Syndrome, which was our biggest concern. The test came back normal, over 99% accurate that he does not have this disease, so we are thrilled.

They still have more tests to run to rule out any other disorders which may explain why my UE3 hormone level was low (which was the indicator for Smith-Lemi-Opitz). Basically they will go over his chromosomes with a fine tooth comb and look for any mutations to explain the original positive test result. We should have all the remaining test results by the end of next week, but for now so far so good.

Thanks so much to everyone for the positive energy you've been sending our way. Keep your fingers and toes crossed for one more week in hopes that the other results are as good!

Thursday, September 17, 2009

Highs and Lows

The week started out bubbling over with excitement. We had our appointment to find out the sex of the baby and we could hardly contain our anticipation of finding out. Everyone was so vehemently opinionated...mostly leaning toward a girl, but there were a few holding strong for a boy. Wednesday was only a day away, just 24 hours to go when my cell phone rang. It was Kaiser. The serum integrated blood test done in both the 1st and 2nd trimester screenings had come back positive. "Positive for what?" I asked. "I don't know, just positive. It's very important you keep your ultrasound appointment for tomorrow and go straight to the genetics department afterward so they can explain what the positive means and what your options are" she said. Luckily Dave hadn't left for work yet and I could crumble into a bucket of tears on his chest while he stayed strong and let me sob. We looked through the booklets on the testing to figure out what the possibilities were of a positive test result...all were bleak. Mostly some form of mental retardation and/or severe physical ailments and handicaps. We figured best to go to work and distract our minds from this news, especially as we didn't know what exactly was wrong and it would do us no good to sit around and let our imaginations run wild.

Wednesday morning arrived and the joyful anticipation of finding out the sex was replaced by the sobering anticipation of finding out the genetic defect. I'd cried myself out Tuesday so when Wednesday came I could effectively remove myself emotionally from the situation to actually find out on a scientific level what was wrong. I went back alone with the ultrasound tech to take all the measurements. Everything went very well, good strong heartbeat, all the measurements were absolutely perfect, few days ahead of schedule big head and belly, right on schedule arms and legs. I could kind of see the screen at different angles and I asked at one point if that was its face and arms. It looked like it was riding a roller-coaster with it's arms thrown up overhead going "Wheee!" It was not, and the tech laughed and said he could see why I thought that, but it would have been really funny if it was (the child would definitely be taking after it's mother not father). After all the measurements were done he went out and brought Dave and my mom back in so we could all see the baby. He got a good profile view of the little bug snuggled up. Pressing good and hard with the ultrasound hand piece against my 40 oz full-of-water bladder this little bug did a flutter kick push off and started running. I mean running, these little legs were moving! He moved the ultrasound around up under the cute little feet and toes, right up the bum shot and boom there's our little man's chunk of junk...it's a boy. A boy who looks perfectly healthy yet in 20 mins we'll find out what's wrong with him.

After the bittersweet excitement of the ultrasound we marched across the street to the Genetics Dept and met Stephanie our genetics counselor. She was amazing and explained everything they test for and what it means. Everything came out normal except for 1 level was extremely low which is indicative of Smith-Lemli-Opitz Syndrome. What? we all thought to ourselves, what is that? Down syndrome we knew, Trisomy 13 and 18 we became familiar with, but Smith-Lemli-Opitz we had no idea. She explained how it was an extremely rare disease where the baby doesn't produce cholesterol which leads to moderate to severe mental retardation, kidney failure, cleft palate, physical handicaps...basically just bad all around. Both Dave and I have to be carriers for this to have passed on, which is very odd because it is such a rare disease and our parents don't know of anyone in the family having this. According to the numbers there is a 1 in 17 chance that the baby has this disease. There is also a hopeful chance that absolutely nothing is wrong. We scheduled an amniocentesis, that I had performed this afternoon, to do further tests. The amniocentesis can decipher with 99% accuracy whether or not this really is Smith-Lemli-Opitz. The doctor who performed the amniocentesis was very sweet and walked us through the entire procedure of poking my belly with a huge needle to suck out some amniotic fluid. It went great, didn't hurt at all just a bit of pressure. Luckily the baby was very cooperative and stayed way over to the left side of my belly while Dr. Marshall poked the right side of my belly to suck out the amniotic fluid. After taking enough fluid for testing he ran the ultrasound back over my belly to look at the baby. He looked perfectly fine and healthy and completely unaware a needle had just violated his home and sucked out a few vials of his pee and shed skin cells (apparently that's what amniotic fluid is made of, very fancy indeed). And then he spun around and gave us a nice crotch shot, and Dr. Marshall went "yep definitely a boy!" Dave seems quite proud of his boy's penis by the way. I don't know if it's that or just that he's so excited or surprised it's a boy. After we finished the appointment Dave asked Dr. Marshall how often with Smith-Lemli-Opitz the results come back as a false positive. His answer was hopeful and funny because basically he just reworded what we heard yesterday but it sounded completely different. He said, I can give you an exact number. 16 out of 17 times it will be a false positive because there is only a 1 in 17 chance it's positive, so let's stay hopeful you're part of the 16. Anyway, it takes about 2-3 weeks to get the results from the amnio. The sample has to be sent to Baltimore for testing as they are the foremost authority on Smith-Lemli-Opitz Syndrome. Most likely they won't receive the sample til Tue, so 2 weeks from there should take us to about a 3 week waiting period total. We're doing okay after a few days of being able to process the news. We're staying hopeful, especially since seeing the very healthy ultrasound and hearing about lots of people who've had false positives. But we are cautiously hopeful and very much aware that this little bug may just not be meant to be. So with that we have a long 2 weeks ahead of us and we'll just have to wait and see.

Thank you to all who've sent your love and support.

Saturday, September 12, 2009

Damn you Verizon!

Last week I wrote that I would have an update after our doctor's appointment. That was before Verizon shut down our internet (which just came back up). The appointment went very well. We met our midwife and heard the baby's heartbeat. Everything looks good so far. The real news is that on Wednesday, we find out the baby's gender. Luckily, we are furlowed that day and I will have no problem being there. So look for an update on Wednesday and possibly a mass text as soon as we know.

Tori has been doing well. Her hands and feet have been hurting and occasionally her pre-natal vitamins make her sick, but for the most part she has been doing well. The move went well (except for the week without internet and the loss of our Tivo). The apartment is beautiful, although it is still a work in progress. The baby's room (I love saying that) is currently where everything we don't know what to do with yet is being housed. We had to make an Ikea run to get furniture to fit our new apartment, but it is super classy. And we got a new Tivo that is better than the old one, so no real loss there. Possibly the best feature of our new apartment is that the air circulates without the need for fans. Our old apartment necessitated a ceiling fan and two oscillating fans and it still felt like an oven in the late afternoon. We get very little direct sunlight, but we have more than twice as many windows, so the apartment has been staying nice and cool in this Indian summer heat. The new address is 120 Grand Ave, Apt 304, Long Beach, CA 90803.

The school year is gearing up (a week earlier than I had anticipated) and I am starting to feel the pressure. I had a bit of a minor meltdown on Thursday when I was told that I would have to "roam" to different classrooms to teach my English classes. With the help of the ever-practical Joe Svoboda I solved that problem, so there was no major meltdown. I start directing "David and Lisa" the story of two mentally disturbed teenagers who fall in love next week. It will be the only play I direct this year in preparation for Peanut's grand entrance. Wow. This may be the last blog where the baby is known as Peanut...

Thursday, September 3, 2009

It's been awhile...

Tomorrow is our next baby appointment. Not much to report since the last one. Tori is doing spectacularly well. She has tons of energy (I'll spend more on this later) and her spirits have been very high. The heat has been hard on her and hasn't helped the swelling of her hands and feet that come with pregnancy. The other night her wedding rings got stuck. It was like a bad 80's sitcom. At least it wasn't a borrowed ring. And there wasn't any Crisco.

I have, however, gone back to work. I reveled in the applause my students gave me when they saw my updated power point presentation that introduces me to my classes. There was a new addition that pointed to a picture of Tori's belly and said, "Our baby." That was a great feeling. Aside from us and our family, my students will be the ones most effected by our new child. I spend more time with my students than I do with anyone besides Tori. I told them that the happy expression they were seeing on my face would be much different come February/March when I'm not sleeping and all I want to do is spend time with my new baby. They laughed...I guess they thought I was kidding.

This weekend will be when we move into our new two-bedroom apartment on the third floor. Of course we are smack-dab in the middle of an epic heat wave. We have actually already started the move. Last weekend we spent the day loading up the hand-truck, furniture dollies, and shopping carts with all of the flotsam and jetsam that is usually the last thing you move. Our goal is to have all surfaces cleared and all of the nooks and crannies (boy, lots of antiquated sayings in this post) emptied so that when everyone comes on Saturday (amazing friends and family) to help us move, they won't have to help us with that crap and can just help me move the fridge, couch, bed, etc. I hope to keep Tori from doing anything, but that may prove to be as fruitful as trying to hold back a tidal wave with a bamboo umbrella. It is fun to think that we are about to move into our baby's first home. And, although we have lived together in many other places, I suppose it will be our first home as a family.

Family. That is the part of this thing that I find the most bamboozling (you didn't think I could work that word in, did you?). We are starting a family. It isn't just a child, it is the start of a generation. Count me...bamboozled.