Sunday, August 5, 2012

First Post and long history of Nikola

I've decided to finally write down the crazy scrambled thoughts in my head.  I think it'll do me some good.  The past nine months or so have been stressful, scary, and life changing.  In the midst of these unsettling months, I've also had good days.

I am now a mother of two girls.  I was pretty certain that I wanted just one child.  But in a moment of weakness (when I saw my first daughter, then the only child, search for Easter eggs all by herself with about nine adults following closely behind her) I felt a strange sadness for her.  I worried that it would always be that way for her - an only child with too many adults standing over her.  I worried that she would never learn the things that only siblings can teach you.  

I grew up with a brother three years older than me.  And though he was not always kind, never played well with me and had a habit of farting in my face, I was always thankful to have an older brother.  Growing up I always had someone to follow around, someone to annoy, someone to pick on me and teach me all the curse words, someone who dared me to shove marbles up my nose which then resulted in extractions in the ER.  Family vacations were always fun.  He looked after me during my young years.  I was never alone.

So that moment of weakness caused me to reconsider.  And I eventually suggested to my husband that we forgo any kind of protection until my 35th birthday.  If it didn't happen by my 35th birthday, then it wasn't meant to be.  I made the suggestion in June and my birthday was in August.  I believe our second daughter was conceived around August 10th.

I gained a lot of weight with this pregnancy, about 65 pounds.  With my first, I gained 35 pounds.  Everyone who saw me (even strangers on the streets) all concluded that "Damn!  Your baby is going to be HUGE!"  Though that was far from the truth.  About 5 of those pounds were her and the rest was glorious fat me.

The second pregnancy was so different from my first.  With my first, I didn't even know I was pregnant for the first three months as my periods were always irregular.  So missing my period for three months was not alarming.  I never felt sick.  I didn't feel tired.  I didn't have strange cravings.  In fact, I mostly forgot I was pregnant until I started to show and experienced kicks.  With my second pregnancy, I had morning sickness for four months.  I started to feel pelvic pain very early on.  And I had braxton hicks (sometimes quite painful) pretty early on.

But the biggest difference was the test results.  When I was pregnant with Mila, I was 32 years old.  The results from the nuchal translucency test came back as good as they get.  The nurse told me that I tested better than an 18 year old.  And Milana (we call her Mila) was born without any complications.  She was a healthy baby girl, born at 41 weeks, 7lbs 14oz, 21 inches long.

While pregnant with Nikola, the nuchal translucency screening (around my 13th week) showed that I had a 1 out of 57 chance of having a baby with trisomy 18.  The cutoff for a positive result is 1 out of 50 in California.  So they gave me a negative test result.  But it was too close for my taste.  I then read that in New York the cut off is 1 out of 100.  So if I had taken this test in New York, they would have given me a positive result for Trisomy 18.  I don't want to go into Trisomy 18, but it's not pleasant and babies born with this defect have very little chance of surviving the first week.  We weighed the risks associated with having a CVS, but I couldn't stomach these results without knowing for sure.  So I got a CVS done (which hurt like a bitch by the way).  The result was negative for trisomy 18 and also negative for down syndrome.  That was a huge relief.  They did mention to me that my PapA level was low and that it may affect the growth of the fetus later on in the pregnancy so we would have to monitor that closer as I got to my third trimester.

Then with my 15 week anatomy ultrasound, they noticed that the baby's femur bones were short, measuring at about 3 weeks behind.  They said that is usually a sign of down syndrome, but since we know that the baby doesn't have that, the other direction is skeletal displaysia.  But of course the baby could be normal also, but they just wanted us to have all the information.  I couldn't believe my ears.  More to worry about.  We were told that there are over 200 variations of skeletal dyplaysia.  About half of them are lethal.  And among the non-lethal, achondroplasia is the most common.  They offered to perform an amnio to test for achondroplasia.  They couldn't test for every variation as there are too many so they wanted to rule out the most common.  I was a mess.  I didn't realize that pregnancies could be so complicated.  I completely took my easy carefree first pregnancy for granted.  I didn't want to have an amnio after the CVS.  I was doubling-down on my risk of miscarriage.  But I needed some answers.  So we went for it and we were negative for achondroplasia.

We went back for many ultrasounds after that, one ultrasound every other week.  The baby was under weight, teetering around 10th percentile.  I also had to have a nonstress test twice a week where they hooked a monitor around my belly to check on the baby's heart rate.  I was at the hospital so often, I thought that I should have had a special reserved parking spot marked with my name.  The femur bones remained short, less than the 2nd percentile.  Though we ruled out achondroplasia, we still had so many other forms of skeletal dyplaysia to worry about.  The many doctors we met in the high risk department all said that they couldn't give us any real answers.  They didn't think that the baby has skeletal dysplasia but they also couldn't rule it out.  I was so uneasy about the unknown that we sought a specialist outside our kaiser system and met a doctor at UCSF.  He claimed that he was the most knowledgeable on skeletal dyplasia west of the Mississippi.  He did an ultrasound and his answers were similar to that of the high risk team at kaiser.  He agreed that he could not rule out skeletal dysplasia.  But based on his extensive experience, he was inclined to say that our baby does not have SD.

Well fast forward to the end of my pregnancy, a very quick but painful labor, a traumatic labor experience when our baby's heart rate dropped below the 50s, a mad dash to the operating room where I dodged a c-section by the skin of my teeth, Nikola was born. She was 39 weeks, weighed 5lbs 5oz, on May 5th and was 19.5 inches long.  I call her Niko.

We didn't know the sex and I was SOOOOO relieved that she is a girl.  I really love the idea of two girls.  I dig the idea of a relationship between sisters.  And also I thought if this baby does have something… some form of SD, I want her to be a girl.  Somehow I think that short women can adjust better in life than short men.

I will stop now as this post is super long.  I'll explain my observations about Niko's appearance and our conversations with our doctors so far in following posts.

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