The Guilty and the Greived

10 Jun

A few weeks ago I posted about feeling ready to write. I’m a new mom and absolutely smitten with my daughter, Jiselle. But since her birth, I have struggled with intense feelings of grief and guilt…

Jiselle’s birth was nothing like we planned. What birth is, right? DH and I went in for our final prenatal appointment in preparation for an induction scheduled for the following week. Unbeknownst to us, my blood pressure was high and when I was hooked up to the NST monitor, Jiselle’s heart rate would dropped from the 160s to the 90s whenever I had a contraction. I was immediately sent across the road to labor and delivery and Jiselle was delivered by Cesarean section about an hour later. When the doctor lifted Jiselle up, she was so tiny. Before delivery, we were told she would be in recovery with us, but because of her size- only 3lb 8oz at 37w2d, she was immediately sent to NICU.

After several tests, we discovered she had a low platelet count but the doctors didn’t know why. Over the next few days her platelet count continued to drop and 3 days post birth she was given a platelet transfusion. The following day my husband and I had our platelet types checked. I was HPA-1 negative (very rare). It was then that we discovered that Jiselle’s condition was due to something called Neonatal Alloimmune Thrombocytopenia. My negative platelets had been attacking her positive platelets most of the pregnancy. Jiselle’s transfusion was successful and her issues were minimal compared to what could’ve been. With NAIT, a fourth of the babies are born with heavy bleeding on the brain, and a third die at birth.

This is when the guilt and grief settled in- guilt because of what Jiselle had to go through during pregnancy and in the NICU (my body= my fault) and grief because I felt l had lost any future children in that instance. How could I knowingly put another baby through all of this? I could just picture my unborn baby being attacked by my negative platelets in womb. Painful.

Jiselle is thriving and has developmental support at a great children’s hospital. I’ve researched NAIT and met other parents online. I’ve discovered that there are treatment options should we try for another child, very expensive and invasive options, but options nonetheless. If you have been following me, you know I’ve walked through the fire to get to motherhood and I would do it all again for Jiselle. I’m SO thankful to have the chance to be a mother because I know what it’s like to feel like it will never happen.

But will I try for another child? I will say that I’ve let go of some of my guilt and grief. I’m not crying everyday or sitting in dark spaces browbeating myself anymore. But irrational or not, that guilt and grief will continue to haunt me.

A Mother’s Day

14 May

This Mother’s Day I received several calls, texts, cards, gifts, hugs, kisses.

I was very grateful.

But everyone kept celebrating with, “It’s your 1st Mother’s Day!”

My grandmother called and said, “You’ve been a mother to many babies since Baby Jae. I was there. I’ll never forget. Happy Mother’s Day for the 7th year.”

I was most honored and happy at that moment.

Free To Write

8 May

I haven’t written a post in almost a year. In that time, I have travelled to England for some much needed R&R, gotten pregnant, and miraculously delivered my first and possibly only take home baby.

Why didn’t I write about our last TTC experience? Why didn’t I write the entire time I was pregnant?

I couldn’t… I got through each experience minute by minute.

Emotionally, I was done. We were submitting paperwork for adoption when my husband asked that we give it one more go.

Mentally, I was all jumbled up and lost. I had nothing left to say.

Irrationally, I had started to feel that if I wrote it down, I would jinx myself. Writing it down would mean reliving heartbreak again and again and again.

Now I’m wondering if I regret not keeping a journal or blog about my last pregnancy. I don’t. I’m sure it would’ve been useful to someone, but it wasn’t for me. I captured the experience in private photos and entries on various forums. But that’s it and I’m ok with that.

I’m feeling the freedom to write again. I must have something to say.

Awesome Video on Unexplained RPL

4 Jun

Webinar with Dr. Sher on Implantation Dysfunction

This webinar was sent to me from a TTC sister. It’s pretty long, but if you suffer from RPL (recurrent pregnancy loss) and you’ve not been able to pin down an answer, the information in this video could be invaluable to you.

 

Inspirational Stories for my TTC Sisters!

2 Jun

Inspirational Stories for my TTC Sisters!

If you have the time, please check out these stories from patients at the Shady Grove Fertility Centers. They are very inspiring and informational. You won’t regret it!

Joia

29 May

Our Snoodle was a girl.

I love her and I never got to meet her.

She had Turner Syndrome 45X, which means she had only one sex chromosome. She may have been born with webbed neck, lymphedema, skeletal abnormalities, nonfunctional ovaries, kidney problems, and/or heart defects. I would’ve continued to love her anyway.

Turner Syndrome is not inherited necessarily because women who have it usually cannot reproduce. Because of this, it is typically sporadic and is not likely to reoccur. It is one of the most common reasons for spontaneous miscarriage in the first 12 weeks. We have got to have some of the worst luck.

I won’t lie… I’ve had my moments when I wished to just sleep and never wake up. I struggled to sleep without taking sleeping pills and then struggled to not take them just because I wanted to “check out”. I lost control to the point of losing feeling in my hands and feet from panic. I thought that learning that there was a cause for this loss would help to give me some closure. But, instead, I struggle with every passing week. I hurt with the thought that she maybe would’ve been ok. I’m angered by the betrayal because she was supposed to be our take home bundle of joy.

I have had some joy, though, because of the little time I had with her.

So, we’ve named her Joia.

Another Ingredient in the Alphabet Soup

19 May

I’ve been wrapping up the school year the last few weeks and in a few more days, I will be free. I’ve always thought teachers needed the break as much as students, but I think the end of this school year in particular is even more necessary to me. I haven’t really had a chance to truly breathe and process since we lost our last baby. I went back to work within about 2 weeks because I thought working would help to take my mind off of the grief. It has helped in spurts, but I think it has exhausted and depressed me even more. Being around other people’s kids all day, everyday… it’s torturous sometimes. Yesterday, I realized just how “asleep” I’ve been. How is it the end of May already? I cannot really recall what has happened between April and now. I think I’ve just been going through the motions. I don’t know if this is a defense mechanism at work or not, but somehow I’ve made it thus far, despite the dark storm circulating over and through me.

One thing I do remember is my follow up appointment with my OB a few weeks ago. It’s apart of the reason why I was so angry last post. Everything looked normal anatomically, however, I was tested for something called PAI-1 the week before we found out our baby had passed and the test came back positive. From what I can understand, it has to do with the blood clotting system. Everyone has a plasminogen activator inhibitor that is responsible for helping to breakdown blood clots. A person can have PAI-1 5G/5G, PAI-1 4G/5G, or PAI-1 4G//4G mutation (4G/4G being the worst- the one I have). When the PAI is “broken” or “mutated” blood clots that form are not broken down as they should. With pregnant women, this can cause clots in the placenta, cord, or uterine wall, inhibiting effective implantation. This is the best I can understand it all, as there isn’t much information available online at all! It’s been really frustrating. This link is the best I’ve found, aside from some medical journal articles I’ve bookmarked.

Apparently, this mutation is not commonly tested. Because of my previous unexplained 1st and 2nd trimester miscarriages, my OB wanted to test me for PAI-1. My OB  became familiar with it while searching for answers for some of her other patients who also suffered from RPL with no explanation. She tested all of those women, and each one tested positive for PAI-1. She treated them with Lovenox and each went on to have healthy babies.

With a possible answer as to why I have suffered so many losses, why was I so angry you ask? Well, I was on Lovenox for the duration of this last pregnancy and I still suffered a loss. I looked on several TTC online forums, and so many women with PAI-1 or other clotting disorders discussed their successful births due to Lovenox and/or Heparin. Very few suffered additional losses after treatment was started. I did everything I was supposed to and still I lost. Why me? I remember sitting the hospital waiting for the anesthesiologist. My OB was right by my side. I couldn’t understand why this was happening yet again and I asked my OB if it is possible that I did have PAI-1 and that that was the cause (this was before the test results were in). She looked at me with tears in her eyes and said, “The Lovenox wouldn’t taken care of that if that’s the case.” My risk for developing a blood clot has increased, as this is blood clotting disorder # 2 for me. The first, MTHFR, helps to create the clots and PAI-1 is lazy when getting rid of them. Throw pregnancy in the mix, and it’s the perfect storm for disaster. Another reason I was so angry and frustrated is because this shit is scary. I mean, the bad news keeps on coming. My OB has suggested that I see a hematologist in the long run because this mutation increases my risk of embolism, stroke, and heart attack. When I fly, I will need to wear compression hoses and inject blood thinners into my stomach. *Big Sigh*

I’ve been researching and praying and thinking and crying  and I feel a little more at peace with where I am in my life, but there is still so much that I just don’t understand. So much.

Angry!

15 May

I’m angry tonight.

I’m angry that I have all of these mutations that I don’t understand.

I’m angry that my doctors also don’t fully understand and cannot “fix” me.

I’m angry that the plan didn’t work and that I’m not still pregnant right now.

I’m angry that I’ll have to endure yet another childless Christmas.

I’m angry that I have physical battle scars on my body that remind me of what I’ve lost every time I look in the mirror.

I’m angry that my breasts produced milk, but there was no baby to nurture.

I’m angry that if I try again, I could likely be trying blindly again.

I’m angry that I’ll have to pump a bunch of shit into my body to give me any chance at having a baby.

I’m angry that I can’t help feeling like I keep losing and like I’m letting my husband down.

I’m so effing angry right now!

Image

Early Mother’s Day Gift to Me!

11 May

20130511-071216.jpg

*For my love and my five babies

Where My Sidewalk Ends

8 May

I know I’ve been MIA for a while. At first my absence was because of my continuous struggle to connect with the baby. I know it might sound strange, but I had such a hard time acknowledging and writing about my baby because I felt like it would jinx things. The very first time we became pregnant, my initial thoughts were of paying for childcare and picking out baby names. But then I lost baby Jae. Since that loss, very subsequent pregnancy has been plagued with worry and terror. I’d love to be over the moon excited and confident in a pregnancy, but I don’t think I’ll ever be able to recapture that innocent excitement of being newly pregnant.

I’m still in shock to have to type this, but my absence from my blog extended longer than expected because I lost the baby at 12 weeks.

On April 13th I attempted to use my fetal doppler and I couldn’t find the baby’s heartbeat. I immediately felt panicked, but then I remembered that at my last ultrasound (only a week before) the baby had been so active that the ultrasound tech had difficulty even catching him/her on screen to measure the heart rate. This settled me a bit. I had only tried for about 10 minutes anyway.

The next day, I tried again, and still couldn’t find the heartbeat. That familiar lump of anxiety settled in my stomach. Something wasn’t right. I kept this information to myself. I wasn’t sure and there was no need to worry everyone else. I had only tried for about 20 minutes anyway.

The next day, I called my OB’s office and told the nurse that I had not been able to find the heartbeat. She offered for me to come in and told me that they would use the doppler to attempt to find the heartbeat; however, she reassured me that sometimes they couldn’t even find the heartbeat at 12 weeks. “The little stinkers are too busy bouncing around, ” she said. I decided against going in to the office, for fear that if they did not find the heartbeat, my anxiety would only worsen. I had an ultrasound scheduled coming up in two days anyway.

I went the ultrasound alone (I told my husband I’d text him with an update). When the technician turned on the monitor, I couldn’t bring myself to look at the screen. Her silence confirmed my worst fears. I looked over and there was my baby, curled up and at rest in my womb with no heartbeat. I didn’t cry. I didn’t call anyone. I just sat there. Eventually, an MFM came to talk with me. He did the usual -talked me through my options, offered a tissue box, etc- but he also did something special. He told me that it is not normal for a woman to lose this many babies. I was grateful for that.

I left the hospital. Went to the post office. Went to the pharmacy. Went home and collapsed on the couch. My husband texted me, “how was the appt.?” I finally cried. How was it fair that I had to tell my husband that I had lost a baby for the 5th time? I typed, “bad”. He called and I managed to mumble a few words, “baby…ultrasound…no heartbeat.” He was home in 15 minutes, at which time I explained what happened and destroyed my husband . We had been hit with a lot of financial and family challenges at the time and this was the only thing he had been looking forward to. He’s a fix it guy and he could fix all those challenges, but he can’t fix this and that kills him. 

The next few days were a blur. I had a D&E. I slept. I cried when the pain meds wore off and I was no longer emotionally numb. I took more pain meds.

I’ve been back at work a few days, but I can’t think. I mix up my words. I have to set a reminder to remember to eat. I have to take a sleeping pill to sleep.  What’s frustrating is that we had just started connecting to the baby at about 11 weeks. What’s even more frustrating is that there was no indication whatsoever that something was wrong. What’s most frustrating is that I was doing everything I was supposed to to keep this from happening again.

But it did happen again and we don’t have any answers as of now.

I’m really trying to keep putting one foot in front of the other.

Diane Ravitch's blog

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