Hi Everyone!!! I am friends with a lot of you on social media, but I wanted to write a quick update to those who are not on social media.
First, I want to let you know that I read your blogs DAILY, I don’t have time to post, but I am always listening and really miss this outlet in my life, I need to make a point to start doing this weekly again!
Life has been great, the kids are 17 months old and growing like weeds. Both of them have mouths full of teeth and have a growing vocabulary by the day. Harper is our talker, she can say so many words I wouldn’t even be able to list them. She is to the point where she is able to repeat pretty much anything you say. She just started walking a few weeks ago after walking on her knees for months!!! Elliott is still a sweet and sensitive little guy. He is talking but nowhere near as much as Harper. He has been walking since he was 10 months so he has that down pretty well!! Seeing the difference in their personalities is so amazing, even at such a young age. In February we celebrated our 10th anniversary and went to Disneyland as a family. Harper LOVED it, she enjoyed all of the people, the rides, etc — Elliott spent 90% of the time observing and I am pretty sure was in sensory overload the entire time. All in all, both are happy, healthy wonderful rays of sunshine in our life.
I’ve been thinking a lot about Rohen, more than usual (which is already a lot). I feel guilty because I don’t bring him up often but it is a hard thing to talk about. To me, he is beautiful & talking about him, while it is excruciatingly painful, is important to me. I want H&E to know their older brother. It just isn’t a topic that a lot of other people are comfortable talking about, and I get it. I just miss him and wish that he could be here too.
Guys, this next part, I’ve been wanting to write about it for a while but have been struggling to find the words – but I’ll try. I have become mildly obsessed with the cause of Rohen’s death & Harper’s prematurity/placental issues/IUGR (Intrauterine Growth Restriction). So, what does one do when they become obsessed? I started by calling every doctor I visited in relation to both pregnancies – my RE, my PCP, both OBGYN’s, the hospitals & the Perinatologist. I got my records from all of them because I wanted to read about it myself — I didn’t want to hear the “answers” from a doctor again because unfortunately I’ve been told “It was a freak one time thing”. But then it happened again, and now it is just “unexplainable”. What. The. Fuck. I’m not OK with that answer. My son DIED and my daughter was close to it, had I not been in the hospital the day they were taken by emergency c-section, there is a huge possibility Harper wouldn’t be here today. The thought is nauseating. So, I get my records and I start reading…I shit you not, I read every single line of every record and I’m glad I did, I’m no longer ignorant about my medical background and when we start TTC again, this is important information to know. So, here is what I know and ultimately I am sitting in the same spot I was before — so if anyone has any ideas PLEASE share them with me🙂
- Both pregnancies resulted in IUGR babies (Rohen & Harper). Rohen was born at 20 weeks and was the size of an 17.5 week old fetus, he was measuring quite a bit behind and at such a young age, combined with the placental issues, he never had a chance.
- Both pregnancies had placental issues – Rohen’s was severe. It is explained as a “globular” placenta with calcification & obvious infarctions on the pathology report.
- Both pregnancies started out with Reverse End Diastolic Flow & ended with Absent End Diastolic Flow…I have googled the SHIT out of both of these things and have read numerous medical journals and cannot FIGURE OUT what the hell causes this!! There is little information about this on the internet, however, statistically if you have a pregnancy with Absent End Diastolic Flow there is a 50% mortality rate.
- I was tested after Rohen died and prior to conceiving the twins for genetic disorders. I was positive for MTHFR deficiency. I have also googled the shit out of this and even went as far as talking with a doctor that specializes in gene mutations. During my many Google sessions I found that MTHFR can cause IUGR babies, stillborn babies & placental issues. I thought I found my answers, it was like a weight had been lifted off of my shoulders. But as I continued reading I learned MTHFR is very controversial among doctors and most of them think it means nothing. That alone wouldn’t have been enough to bring me back to square one, so I continued to research. Turns out the gene mutation that I have apparently doesn’t cause these issues, you have to have a certain form of the mutation. Seriously? Are you fucking kidding me right now? I’m that close to and answer and just like that I’m at square one again.
The bottom line is this. I can’t bring myself to carry another child knowing that 50% of my pregnancies resulted in me holding my dead son in my arms. I can’t do it again. I want a normal pregnancy so bad, I want a vaginal birth where they put a pink, breathing, crying 7lb baby on my chest that I can hold and love. I want to experience labor. But at the current risk. No way. Fortunately we have 2 uteruses and can try for baby #3 regardless. But guys, this sucks.