I just want to stop the bleeding…

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Several seizures, a few trips to the ER, numerous conversations with my OB/GYN, ultrasounds, medications… but no matter what I do the bleeding just won’t stop. I haven’t even had the chance to deal with my feelings because of how severe my physical symptoms have been. When I lost Lily I had a D&C with almost no complications but with Riley it seems that everything that can go wrong is going wrong.

People keep telling me God has a plan for me, that all of this is part of that plan and eventually I will understand… hearing this makes me want to scream. What the hell did I do to deserve the loss of two beautiful babies? What did I do to have to feel like I lose Riley over and over every time I experience one of the horrific events I mentioned above? I cannot comprehend loving a God, and putting all your faith in it and being okay with this type of pain being something you need to experience. No one should have to experience this and any God that believes babies need to die in order teach adults a lesson can go straight to hell.

Losing two babies in less than a year has made me reflect on a lot of things in my life and of course religion/faith is one of them. I know it would all be easier if I could just blame God and resign to the idea that  it was for the best, but I don’t see it that way. I have been putting my faith in science and have been hopeful that the medical community could give me some answers but unfortunately it isnt as easy as it sounds. All of the tests and procedures are expensive. The only thing my genetic testing showed was that I have two copies of the MTHFR gene mutation which turns folic acid toxic when you are pregnant… so that might be the cause of the miscarriages… but as is often the case with science we can’t prove it so we can’t declare it the answer. And my doctors can’t explain why I am still bleeding and suffering the blood clots… all they can say is that they must not have removed everything during the first D&C and that unless they go in and look again they can’t say for sure what is going on… unfortunately I dont have the funds for another procedure so I wont find out any time soon.

On top of the cramping, bleeding and clots I am also experiencing some very unpleasant side effects. I know most people don’t want to hear about this but honestly, it is a horrific fact of life that this is what happens when a baby dies while still inside the womb. I will try not to get too graphic because the situation, especially when you see it with your own eyes day after day is incredibly traumatic… For instance, the other day while at work I passed a mass that was about the size of a golf ball. It was so traumatic that I actually took a photo of it and texted Rich with a message of “OMG what is this?”. I ran downstairs to the ER (one benefit of working in a hospital) the doctor said it appeared to be a combination of tissue and clotted blood… but they couldn’t say for sure without tests, which I had to decline because that would have been insanely expensive and really what difference does it make? It would just break my heart more to know I was holdinh products of conception in my hand… and it certainly wouldn’t help me to move forward.

On top of everything else I am dealing with the fact that we don’t live in a perfect world and that health care in the US kinda sucks. Each D&C is over 8,000 and my out of pocket expense is roughly 1,500 per procedure. This is on top of all of the ultrasounds, ER visits, and the 1,000 ambulance ride that occurred when I recently suffered a grand-mal seizure. It isn’t just the financial strain it puts on our family that ticks me off, it is that every time I receive an email that a new bill is in I have to cringe because it is just another reminder that my beautiful babies are gone. We currently have a go fund me set up because, as embarrassing as it is, we cannot handle all of these bills. I have actually told my doctor that I cannot make any more appointments because we are not able to afford it. In addition, Rich and I have canceled our wedding because all the money has to go straight to the insurance company.

I really just need all of this bleeding to stop and I mean that in the literal and metaphorical sense. I know eventually the physical symptoms will end and someday the bills will be paid off… but when will I start to feel like me again?  I just don’t think I will truly heal until I can tackle the emotions I am experiencing and I don’t think I can delve into that until the external issues have been addressed. I appreciate everyone who has taken the time to follow my journey, sad as it may be, knowing that there are people that care helps me more than you know.

 

*please feel free to share our link if you know anyone who might be able to relate to our struggle and would be interested in helping out

 https://www.gofundme.com/LilyandRiley/

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hugs, blood and gene mutations…

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A month has passed since we lost our baby. I am still heartbroken and still bleeding. I received test results that show I have an MTHFR gene mutation which likely contributed to the miscarriage, I also received a hospital bill for 1020.93… that’s really about it as far as updates.

I sort of feel like I am drowning. Every day there is something else piling on top of me. Another piece of bad news… something else to try to handle so that I can keep things stable. I barely have any free time right now because I have been trying to work overtime to pay off all of the bills associated with the pregnancy and miscarriage. The only time I get with Arabella during the week is a few hours in the early afternoon when we are getting ready for the 30min ride to my dad’s house so he can watch her while I go to work… then I get home at 11:45pm and that is when I get to tuck her into bed. This is my favorite time of the day. Arabella gives me the biggest smile when I come in the door. She makes the most of those few minutes before bed time, showing me toys and chattering away. Then I hear “love you mama” as I squeeze her tight. Honestly, the hugs she gives me at night before she goes to sleep are truly the reason I wake up the next day.

When I read the test results on the MTHFR gene mutation I cried. It is so terrible to feel like you failed your baby. My rational mind knows that it was nothing I did and that there was no way for me to know about it and that even knowing it is still possible that I could have had a normal pregnancy and all of the other things people are saying. However in my heart, when I sit alone at night in the dark, it feels like it was my fault. I was able to keep Arabella safe for those amazing nine months that she spent in my tummy… why did I fail Lily and Riley? I have been feeling physical pain thinking about it. I get this sharp burning pain up my neck as all of my muscles tense up as I realize I will never again birth a child.

I know that writing all of this will cause me to be flooded with information on how MTHFR is very common and that I can absolutely have a successful pregnancy. I know that physically it is possible, but at this point I cannot take the risk. Emotionally I am strained. The loss of Lily broke my heart, losing Riley broke my spirit… I cannot even imagine what would be left of me with another loss. A lot of people have told me that now is not the time to make the decision to be finished… but the decision has been made. One of my dearest friends told me that “he” (pointing to the sky) will decide when/if I am done… I told her that if “he” can get past the vasectomy we are planning. plus regular birth control, she might make a believer out of me. Until then I am going to stick with science. Clearly the odds are not in my favor to have a healthy pregnancy. There are ways to treat all of the things that are wrong and I believe that moving forward and enjoying all that I do have is going to be the first step in conquering this anxiety and depression that are plaguing me day and night. The bleeding has to stop eventually… right?

this is my blood, it is shed for you…

“for it is the blood that maketh an atonement for the soul” Leviticus 17:11

I could feel it in my gut… the ultrasound wasn’t going to go well. I kept a smile on my face in the waiting room as a woman 3 weeks from her due date compared notes on what it was like to spend the summer in your third trimester (Arabella was born 7/21/14) I didn’t want to bring down the mood in a room full of joy. Inside I was petrified. When the ultrasound tech called me back I went into the tiny room and let her know that things hadn’t been going well. She said that she read the previous notes and she was aware… she then asked if I wanted her to tell me straight what she was seeing… I said of course. As I watched the screen I saw her measure my uterus, the gestational sac and that is when the fetus came into view. It looked almost identical to the ultrasound 10 days prior… the only thing missing was the flicker of a heartbeat. She didn’t need to say the words, I  already knew the truth, our baby had died. I started to have a panic attack and rushed to get dressed. When the doctor came in I was crying uncontrollably and dry heaving while sitting on the floor of the examination room. I couldn’t control my emotions. Even as they escorted me to the surgery scheduling area and I passed by the young woman with whom I had been chatting just 30 minutes before… she smiled at me and I could not help my response… I just kept crying. The doctor said the baby was going to start to pass soon and so she wanted to do a D&C the following morning. I vaguely remember signing the papers and being handed a stack of pamphlets. I called Rich from the parking lot and he immediately left work so he could meet me at the house. The drive I made from the doctor’s office to my home is a complete blur… I know there was an intense rainstorm and it made focusing on the road that much more difficult. I felt destroyed by the news. I felt like ripping my skin off. I felt like a failure as a woman and as a mother. Somehow I made it home safely but I didn’t sleep much that night.

The next day the procedure was fine. It was quick and relatively painless. The next two days of physical recovery were pretty easy so I was dealing mostly with my emotions. Then while sitting at my computer I felt a warm sensation in my abdomen and the feeling that something was falling out of my body. I ran into the bathroom and passed a blood clot that was just about the size of a plum… and unfortunately this was not a one time incident. Since my procedure on the 7th I have had 3 weeks of bleeding, clotting, tests, pain and general frustration. This time around the physical pain has been overwhelming. With my loss last fall it was mainly emotional pain but the physical side is really coming into play now. It might sound strange but the fact that I cannot get past the physical symptoms is making it nearly impossible to face this depression. People don’t really talk about the things that happen to your body when you lose a child but they are truly traumatic. When I was in the 10 day waiting period in-between ultrasounds I remember fearing the site of blood every time I entered a bathroom…. now with my baby gone the blood is all that is left.  Every single time I pass a clot it is as if the baby is dying all over again. No doctor can seem to tell me how long I will experience this constant reminder that my body failed to protect my baby…but I would give anything to have the bleeding stop.

The bleeding is something that no one else sees… but they do see my tears. I have been an emotional wreck over the loss of my baby. I have cried at work, the grocery store, in the car… with friends, with Rich and especially alone at night, when I think about it the most. Hell I am even crying right now while I sit in the dark typing this out. The crying isnt always for the same reason. Sometimes it is sadness, thinking about the fact that my daughter isn’t going to be a big sister… thinking that I am never going to hold an infant to my breast cherishing a life created with the man I love. Other times it is out of shame. Something about admitting aloud that once again I failed my child, that just 9 months . after the death of our 2nd child my body proved incapable of caring for our 3rd. Then there are the times that I cry out of anger. I get this feeling of rage because I just want to understand why it keeps happening. When you lose a child everyone wants to tell you how common it is. Well I am sorry, but that does not comfort me one bit. It floods my body with a combination of anger and sadness that is indescribable. These are the moments that I start to wish I had some type of deity to blame it all one. Some higher power who could take credit for the entire ordeal so that I could move forward… no need to cry… i’d be able to feel confident that there was a purpose to it all and that I was blessed to have God looking over me. Unfortunately my brain is not capable of accepting nonsensical bullshit so I will have to work it out on my own and damn-it there may never be a reason. That is the worst part for me, the not knowing. My doctor took tissue samples to check for chromosome abnormality and has also ordered a slew of tests to look for genetic disorders that may be causing my losses. I know though that all the tests in the world may never tell me why my baby is gone.

I have had several people “remind” me that I did have 1 successful pregnancy and that I should be thankful that I have my daughter. If you ever think of saying this to a mother that has just suffered the loss of a baby, please stop yourself. Not only does it imply that the mother doesn’t appreciate her living child but it also implies that the grief the mother is feeling is not justified. I won’t try to speak for any other grieving mothers but in my case the love I feel for my daughter has never been in question. Arabella means everything to me… she is a reason to wake up every morning, to go to work and to push through even when it hurts just to move. That being said, the love I feel for Lily and Riley (baby 2 and baby 3 respectively ) is also real and my grief is valid. The love I feel for one doesn’t take away from the other and if anything losing these two babies has made me appreciate Arabella even more.

Rich and I have decided that we can not risk this happening again. We will be taking action to make sure that I do not get pregnant again.  It isnt that I don’t want another baby but that I cannot handle another loss. The first one broke my heart and the second broke my spirit. In order to be the best mother I can be I need to focus all of my energy on raising Arabella. I feel fortunate that she is young enough that she didn’t even know I was pregnant let alone that the babies died. Of course one day I will tell her. I remember knowing from a young age that my own mother lost two babies and actually that knowledge was helpful during this difficult time. I was able to go to my mother for help in dealing with my feelings, because I knew she’s been there too. At one point I said ” I know it has been a few weeks but I can’t stop thinking about it” to which she replied “Allison, I am 62 years old and I still think about the babies I lost, it’s okay to be sad.” . Those words meant more than anything my mother has ever said to me, I will hold them in my heart always.

So now I am left to deal with all of these emotions…. still mourning the loss of Lily last fall and now trying to accept that Riley is gone as well. I am thankful for all of the people in my life that have offered love and support. Unfortunately I know that it is something that is going to take a long time to heal… I just hope I can make it through…God knows I am trying my best.

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Not in God’s hands… but also not in mine…

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The past month has been tough on me. It started on June 4th when I left work, went to the store and had a grand-mal seizure. An ambulance took me to the hospital where nothing happened because, well, I have Epilepsy and seizures are just part of it… or are they? I knew something was different about this one. On the 5th after much sleep and no longer in a post-ictal state I decided to take a pregnancy test and despite the fact that my period wasnt due for several more days I was treated to the sight of a blue line… once again, I am pregnant.

My last pregnancy started with a seizure and as you may know from reading previous posts, it ended in a miscarriage. Right from the start I was petrified of this pregnancy. I contacted my OB immediately. She ordered blood work which seemed to go well, my HCG was definitely rising but not at the rate they’d like. So on the 16th I had my first ultrasound. Keep in mind that before this my last ultrasound ended with the words “I’m sorry but I don’t see a heartbeat” so going in I was experiencing anxiety like none i’d felt before. When the tech started looking she saw a gestational sac, a yolk sac but no fetal pole. I wept right there. My doctor said that my ovulation dates might just be off and that we needed to start a course of progesterone and wait 10 days to have another ultrasound before we could know what was really happening, but all hope was not lost.

Those 10 days felt like eternity. I used my progesterone each night and read up on any and all tips to help a pregnancy “stick”. One mistake I made was asking the great minds of the internet if anyone else has experienced this. I did receive some positive words, some anecdotal evidence that it could turn out alright… but one woman really stood out. She was insistent that at my stage of pregnancy there should have been a fetal pole and if there wasn’t at that ultrasound there wasn’t going to be one on the 26th. It was sickening how badly she wanted to be right about something so grim, but i suppose you find that type  n every circle.

Luckily for me she was wrong. As I held Rich’s hand and looked at him rather than the screen I heard the ultrasound tech say “and there is the fetus”. I turned my head to see this tiny jelly bean with a little flickering heart and once again, I wept. I was so happy to see that the baby was there but that was when I was hit with the downside. Even though we could see the fetus and a heartbeat, the fetus was measuring roughly a week behind and the heartbeat wasn’t strong enough to measure. That is when I was told that we needed to wait another 10 days before we would really know if this was a viable pregnancy.

I started to panic at the thought of losing another baby. My doctor made me promise not to over analyze every ache or pain. She said that unless I saw blood I should assume that my baby was safe in my womb, alive with a beating heart, as that was what we saw and what we knew to be fact at that moment. I asked for advice. Is there anything that I might be doing wrong that will cause a miscarriage. Is there anything thing that I need to do to prevent a miscarriage. She stopped me and said that by watching my diet, taking prenatal vitamins, extra folic acid and using progesterone each night I was doing everything I could. She told me that what was going to happen was already in motion and that it was “in God’s hands now”.

I left the office feeling severe anxiety and every day since has been more of the same. I have been randomly crying. I have been constantly asking Rich for reassurance that everything will be okay. I have had difficult sleeping and when I finally do drift off I have been having nightmares so vivid that I woke in a cold sweat. Everyone in my life is so sure that it is going to be fine. I want to believe them so badly. I would give anything to just relax and feel confident that my body is protecting the baby but I am not sure that after losing my baby in October 2016 I will ever feel confidence like I did with my first pregnancy.

So now it is 2:14 am on July 6 and by the end of the day I will know if my baby is growing properly, measuring to match my dates and most importantly, alive. I certainly don’t believe that the life of my baby is in God’s hands… but I think that concept might be easier to accept than the reality that it also is not in mine. This helpless feeling that there isn’t anything left for me to do except wait is pure torture. All I want is a healthy pregnancy like I had with Arabella. The chance to enjoy all of those special moments that lead up to bringing a beautiful life into the world. Will I get that chance or will I suffer another loss. For the past 10 days all I have felt is my heart pounding in my chest and now all I want to hear is the beating heart of my baby.