October has always been my favorite month. The leaves start changing colors, the nights get coooler, I can start wearing cute jeans with pointy toed boots (are those still in style?), the anticipation of the holiday season is like electricty in the air, and my birthday is in October. And let's face it....birthdays are cool. It's the one day a year I feel 100% special and can inbibe in chocolate cake without feeling the slightest bit guilty.
October rocks.
But, it's also a sad time for me as well. The tears I have shed because of this have resembled rainstorms at times. You see, M and I should be taking a son home from the hospital this month. My due date for him was the same as the due date my mom had for me (I thought this was a "sign" that he was destined for us). I should be getting up 5+ times a night for feedings, changings, and general soothing of a crying baby. M and I should be lying in bed with a little boy between us, discussing whose lips he has or how cute his toes are.
Instead, I watch three other people in my life give birth to sons this month. And it stabs me in the heart. Not because I'm not happy for them, but it's a reminder of what M and I have worked so hard to acheive since 2007, only to have it ripped away. There is also a large part (irrationally) of it's-not-fair-itis. Those pregnancies for them all came naturally...even an "oops!" Mine required pills, shots, time, money, mutliple dr office visits...even conception was not a pleasurable experience. Rather, it was highly uncomfortable and M was miles away. Instead, there were three people in the room during the time of conception, and we were all women.
I had intended to start a pregnancy blog, as an "online" baby book for him. But, a small part of me thought that if I started, I would somehow jinx it and lose the pregnancy. Instead, I was going to maybe start it in October, once he was born and use it to chronicle his life that way.
Now, I don't see this as a pregnancy blog anymore. Instead I see it as a "trying to conceive" blog. That way, if we ever manage to have a child in the future, I can show this to him/her as proof of how much he/she was wanted by M and I.
When I was about 7 years old, I attended my cousin's funeral. My mom had explained to me that my cousin, Amanda, did not have a normal brain and therefore wasn't able to survive. I wasn't phased by this information; rather, I was more interested in the funeral ending so I could go play on the church's playground. Little did I know that 23 years later, I would be told that my son had the same fatal birth defect that claimed Amanda's life. Occurances for this type of birth defect range from anywhere to 1:1,000 to 1:10,000 (depending on what study you read). Either way, lightning struck twice in our family.
After marrying in 2007, M and I were anxious to start a family. Unfortunately, nature had other plans. It would take two and a half years, multiple doctor office visits, blood tests, pills, shots, and ultrasounds before we saw two pink lines staring back at us on a home pregnancy test. Our most recent January IUI had worked! We were beyond elated, and so were our families, as it was to be the first (and long awaited) grandchild on either side of the family.
I was very much ready to welcome all the pregnancy symptoms, as pregnancy was a dream that we worked so hard to achieve. I wanted to experience every second of being pregnant. However, I was one of the lucky ones who breezed through the first trimester without experiencing morning sickness, tiredness, breast soreness, or any of the other "classic" symptoms of pregnancy. The only symptom I had was round ligament pains. Due to my lack of normal pregnancy symptoms, I was scared of having a missed miscarriage. However, my betas rose at the appropriate level, and our baby was actually measuring two days ahead on the ultrasound with a textbook perfect heart rate.
Later on that spring, I had some abnormally strong round ligaments pains, so the dr brought me in for an ultrasound just to make sure that everything was still OK in there and that my cervix wasn't dialating. M had to work, so I went by myself, thinking that I was over-reacting, and I was sure it was nothing. After the ultrasound probe was in place, I asked the ultrasound tech if there was a heart rate. "Yes", she replied. I breathed a sigh of relief. I anticipated that the tech would give more information about the heart rate and status of the baby, but she didn't. I waited a moment then asked her, "What is the heart rate?". She told me it was 160, but not to ask anymore questions as she was concentrating on doing the ultrasound.
The ultrasound seemed to last forever. Then she turned the screen towards me and said "Do you see this (pointing at the baby's head)? I should see white lines indicating bones, but your baby doesn't have any." I asked her if the skull bones form later. She answered, "no" and told me very bluntly that our baby was "incompatible with life". I saw her type "ancephaly" [sic] on the ultrasound report. She printed out the pictures and left them on the counter for me if I wanted them. I didn't want them at the time, but I knew that later on, I would want to see them. So, I grabbed them and put them in my purse. I'm glad I did. Since then, I have spent hours looking at those pictures, talking to them, cuddling with them. Pictures are all I have of him.
She returned to the room a short time later with the doctor who explained to me what anencephaly was (a fatal neural tube defect where the top of the neural tube does not close, leading to malformation of the brain and skull.) The doctor then sent me across the street to the hospital where a MFM doctor would do another ultrasound for a second opinion. I called M and told him through the tears that our baby didn't have a skull and to meet me at the MFM.
I walked across the street to the hospital where the MFM was and checked in at the front desk with tears running down my face. The receptionist cheerfully said "Hopefully these are good tears of joy!" I responded that they weren't and put my sunglasses over my eyes to signal that the matter was not open for discussion.
As I waited to be processed, I watched people come and go. I thought how weird it was that everyone in the room was going about their normal day, when for me, it was the end of everything. How did people not realize that this was the worse day ever? From this day on, the sun would never shine as bright, and everything would become more muted. How could people not see this? Why were people not writhing on the floor, moaning and crying due to the emotional pain?
My life would never be the same. All of our hopes and dreams for the last the last two and half years were crushed. Thankfully, M arrived shortly afterwards. He took my purse, put his arm around my waist and supported me as we walked to the MFM office together. The MFM doctor displayed the ultrasound on a large overhead projector screen. We saw him bouncing all around, waving his little arms. Then, the doctor alternated between the belly ultrasound wand and the vaginal ultrasound wand trying to get a better picture of our baby's head. A mass that looked like a Mickey Mouse outline appeared. The doctor put his hand on my arm and told me gently that "Today is not going to have a good outcome." He explained that without a skull to hold the brain matter in, at this point in gestation, his basic brain tissue was more so just floating, resembling a Mickey Mouse pancake.
We knew what our options were: terminate the pregnancy or carry to term. We considered carrying to term to donate his organs, namely his liver to a family member. But while an adult liver can be transplated into an infant, and infant liver cannot be transplanted into an adult. In addition, there would be risks opting to carry to term, as anecephalic babies do not always gestate like their healthy counterparts. They don't swallow normally, so fluid has a high chance of building up to dangerous level. The chance of us being able to hold a living child in our arms, if even for a few minutes, was low. "Instead," the MFM doctor informed us, "many anencephalic children die while still in the womb during the third trimester", just like my cousin did. For us, the risks were too great to try carry to term for a baby that would not come home with us, and that would probably not take a breath on his own. In addition, we knew that time was not on our side. It took 2.5 years to get pregnant. I have diminshed ovarian reserve, which means that my ovarian levels are close to that of a 40 year old. Carrying to term would set us back another year in trying to conceive.
Therefore, we elected to turn off life support and end the pregnancy. It is the worst decision a parent ever has to make. The night before the termination, I had to take a pill that would "ripen the cervix". I played with that pill for about an hour. It was so small. A hexagonal pill that came with large warnings on the bottle such as "do not take when pregnant". I wished he was already dead so that I didn't have to be the one to kill him. Despite how painful that decision was, I know it my heart it was the right and humane thing to do. We knew his life would end this year. The only thing that changed was the day.
His name is Luke Michael. We had his DNA run, and he was genetically perfect. The only thing wrong with him was the anencephaly. My body was the reason he didn't have a chance.
Up until that day, a neural tube defect (NTD) was the farthest thing from my mind. I had been taking vitamins (with folic acid!) for the last two years. I even used to silently judge those who had NTD children, thinking that if they just would have taken their prenatal vitamins like they were suppossed to and stayed away from warm baths, this wouldn't have happened. Proper folic acid intake does decrease the incidence of NTDs by 70%. However, there's 30% unaccounted for. I was that 30%. Afterwards, I scoured the internet searching for any possible cause of anencephaly. I came across a few articles that linked a MTHFR gene mutation to improper metabolization of folic acid. I asked my dr to test me for it. Lo and behold, I had two bad copies of the gene: C677T. I can't metabolize folic acid. Also, I have a higher chance of getting blood clots. To combat this, I now take 8mg of folic acid a day (2.6mg of this is a "converted" version of folic acid), and when pregnant, I take Lovenox shots in the belly each day (to thin the blood and reduce the chance of blood clots).
In true "sweet October rain" fashion, I found out I was pregnant (again) on October 1, 2010. The IUI we had done in September with a new RE had worked! I didn't tell M. Instead, I went to the RE's office to get my betas drawn to confirm that the 4 sticks I peed on that morning were accurate. I wanted to wait until the end of the day and surprise M when the good news. Maybe I would send him on a scavenger hunt, or personalize a dessert. The "cutesy" possibilities were endless.
Around 1:30p that day, I got the results from my blood draw that morning. I was pregnant. However, my betas were only 21. For being 14dpIUI, that is less than a third of what they should be. Even though the nurse tried to console me, saying it was the doubling time that mattered, I knew that 21 was too low. I told M that afternoon, but I told him I was pregnant and it probably wasn't viable, all in the same sentence.
Despite knowing that this pregnancy was doomed, I went ahead and began the Lovenox injections that night (which I take every day while pregnant.) By the next week, my betas were at 1.5. I was miscarrying...losing another baby. In October.
The rest of the Lovenox is sitting in my fridge, waiting for the next pregnancy. Hopefully it won't be too long until it gets used.
