A long, very overdue, update…

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 🙂

  1. 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.
  2. Both pregnancies had placental issues – Rohen’s was severe. It is explained as a “globular” placenta with calcification & obvious infarctions on the pathology report.
  3. 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.
  4. 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.

Any suggestions?

Also, pictures.

imageimageimageimageimageimageimageimageimageimage

 

 

Advertisements

11 thoughts on “A long, very overdue, update…

    • Ashley Davis says:

      Yes, I took baby aspirin my first trimester with Rohen too, but I took folate, b12 and baby aspirin my entire pregnancy with the twins. I am convinced MTHFR is the answer and no one agrees lol! I talked to our RE about it and he said he would be ok putting me on a injectable blood thinner to see if it made a difference if I were to try again but it’s that risk that we will lose another child & I never want to experience that again.

      • shawnsorcade says:

        Oh totally understandable. But how could there not be a cpnncetion? That doesn’t seem right. You have placenta issues, placentas are fueled by blood, if you have a blood clotting disorder diagnosis it seems like a no brainer?

      • Ashley Davis says:

        I agree!! But apparently the mutation I have doesn’t cause that issue, I seriously do not understand it. And the Internet doesn’t have a lot of information about any of the issues I had, it’s a mystery!!!

      • shawnsorcade says:

        That’s super bizarre and incredibly frustrating. I’m sorry you’re not getting the answers you need

  1. spiteorflight says:

    I have MTHFR and another clotting disorder (Leiden Factor V) and I need daily baby aspirin and injectable blood thinner to support any pregnancies. Even with that protocol my son was a IUGR baby, although thankfully he never went into any distress, he was just small. That was after two miscarriages, and me basically demanding to be treated more aggressively.

    I worked closely with a hematologist before and during my pregnancy. REs and OBs are great about baby stuff, but a Hematologist is the blood expert. Mine prescribed and managed my blood thinners and tested me regularly (both my homocysteine levels and my anti-Xa levels) to make sure my protocol was working.

    Did they test you for any other clotting factors? MTHFR is still relatively new and a lot of doctors say it doesn’t matter — I disagree.

    • Ashley Davis says:

      Yeah I got tested for the common clotting disorders and was negative…I like your idea about seeing a hematologist. What gene mutation do you have? Mine is E429A or 1286A I guess it goes by both names. It reads: NM_005957.4(MTHFR):c.1286A>C(E429A) in the report.

      • spiteorflight says:

        I honestly can’t remember anymore! I think one factor that put me over the edge was I had a suspected blood clot after knee surgery when I was still in high school. It was never even confirmed, but as soon as I said that, they didn’t want to take any chances.

  2. Awaiting Autumn says:

    Such a tough position. I am so glad that you are being your own advocate. Hope that you find the answers you are looking for. And I love how you want the twins to know about their big brother. I plan to tell Wyatt about his sister too. ❤

  3. The LadyKing says:

    Same on having MTHFR (homozygous) so I agree with the likelihood of that playing a roll.

    Do you know we had several medical professionals tell us our twins couldn’t be identical because they were not in the same sac? It’s completely false but many of them learned that way so don’t be discouraged with the medical community catching up on MTHFR. The lag between science and educating others can be pretty slow.

    Damn, those babies are cute. So happy to hear an update from you guys! Congrats on ten years!

    Lastly, whenever I see an update or think about you guys, I always think about Rohen. He’s your family. xo

  4. Mrs. D says:

    I think there is more to the MTHFR than is currently known. I have the same mutation that you have and even after getting this info, my dr said it was not the cause of my miscarriages. She did have me take baby aspirin and folate throughout my 3rd (and successful) pregnancy, but only bc I demanded a change in protocol from the previous pregnancies. It doesn’t seem like many people know much about MTHFR yet, even the medical community. I’m convinced that it has something to do with my losses and could again. I think going to a hematologist is a good idea and it’s great that your doc is willing to prescribe injectable blood thinners! My dr told me that I know way more about MTHFR than she does, so she would be willing to hear me out re: protocol for my next pregnancy. I too obsessively research things…we have to be our own advocates, I suppose!

Comment ♥

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s