Amy

Mom to Aliya Amy and Bennett Paul

Lost August 5, 2011

Tenino, Washington

Paul and I were introduced in April 2005 by my friend Amanda, who was engaged to Paul’s younger brother (she’s my sister-in-law now). Even though I was dating someone else at the time, she declared me Paul’s perfect match and would not let it go! She was right, of course…although very different, we were perfect for each other. Our paths crossed again in July 2005, and since I had broken up with the other guy, Paul found the nerve to ask me out. We had our first date a couple of weeks later and have been together ever since. We got engaged Thanksgiving weekend 2005 and married in September 2006. We started trying for our first child in October 2007, one month after our first wedding anniversary. I’d been on and off birth control for years to prevent pregnancy…little did I know how difficult it would actually be for us to get pregnant.

After trying for nine months with no positive pregnancy tests, I went to see my OB. I worried she’d turn me away because I wasn’t quite 34 years old and we hadn’t yet been trying a year, but I had a feeling something was wrong so I went anyway. My doctor asked me to start using ovulation predictor kits (OPKs, which the woman pees on daily from days 11-18 after her period to detect the most likely time of ovulation) and wanted Paul to get a semen analysis. When he finally got that done six months later, we knew we’d have a challenge: he had low count, low motility and poor morphology.

Still, we persevered and kept trying. It wasn’t until Paul’s 20-year high school reunion in 010, when he learned that two of his old school buddies also had issues getting pregnant, that he accepted we should seek help. We had our first appointment at a local fertility clinic in July 2010 and had our first non-medicated intrauterine insemination (IUI) the very next cycle. It didn’t work, nor did the next two. My blood tests and hysterosalpingogram (HSG, or tubal dye test) all came back normal, but based on my long history of heavy, painful periods, my doctor diagnosed me as either having endometriosis or unexplained infertility. The next course of treatment, whether I had the laparoscopic surgery to diagnose endo or not, would be back-to-back IUIs with injectible hormones. The plan was to make as many eggs as possible and release them all at once, in hopes that one would make it through my tubes to be fertilized by Paul’s sperm, which would, as in all the previous IUIs, be cleaned and filtered of all the sperm cells that were misshapen or couldn’t swim correctly. We were excited to give this a try.

Our first superovulation IUI, as the procedure is called, resulted in a conversion to IVF because I had “too many follicles” during monitoring…but only two eggs were actually retrieved, one fertilized in a Petri dish, but our little embryo didn’t implant into my uterus. It was a very stressful time and we weren’t emotionally prepared for the rollercoaster that is IVF. We took a break to save more money, pay off the bills from that cycle. Finally, in May 2011, we did our second superovulation IUI using mini-Lupron and Menopur shots, plus a trigger shot of pregnancy hormone to make my body release the eggs that had developed.

The last weekend of my “two week wait” between the second IUI and our scheduled blood pregnancy test, or beta, I was extremely forgetful and a little testy, but all during that time I felt fine. I could attribute every symptom I had to either PMS or the progesterone in oil shots I was taking each night. I told Paul I’d be completely shocked if I was pregnant. Little did I know! On Tuesday, May 24th, I felt very moody and unwell at work, so I left early. I was surprised to find I had one leftover home pregnancy test in the bathroom, so for fun, I peed on it, certain to get a negative result like I had 43 times before. I was stunned when the digital display almost instantly read “Pregnant.” I ran to Walmart to buy more tests and find a way to tell Paul the news. He beat me home and I ratted myself out – that I had left work early, peed on a stick and we’re pregnant!! We were ecstatic and in total disbelief! Our scheduled beta the next day, May 25th, at 14 days post-IUI, confirmed it…we were finally, finally pregnant! Not only that, but Sierra, the medical assistant, called to say, “Girl, you are SO pregnant!” My first beta level was 227. Anything over 5 is positive. My fertility doctor, Dr. M., only checks blood pregnancy hormone levels (human chorionic gonadotripin, or hCG) once per week, and we were holding our breath between each of the three tests. The second was 3800. I wondered if we had multiples in there. The third test was over 54,000, and Dr. M. actually wondered if there were triplets! At our 7 week ultrasound we saw two little embryos and heard their hearts beating strongly. Dr. M. confirmed we were expecting fraternal twins. We were over the moon, and scared to death. Going 43 cycles straight with no positive pregnancy tests had made us a little jaded and we waited for the other shoe to drop.

I read up on twin pregnancies and learned they’re difficult, often fraught with risks, bedrest and early delivery, and learned I’d need to gain weight, as much as 50 pounds, the first 24 pounds by the 24th week of pregnancy. Given the constant nausea and frequent vomiting that started up in week 6, I was very concerned, because was dropping weight rather than gaining it. (At time of delivery I had just finally made it back to my pre-pregnancy weight. When we got home from the hospital, I was 6 pounds below my pre-pregnancy weight, so all my weight gain was due to increased blood volume, amniotic fluid and two tiny babies.)

Paul wanted to scream our news to the world, but I wanted to wait. I knew it’s unwise to spill the beans in the first trimester, and I was determined not to. However, his constant nagging at me to tell his family coupled with my extreme fatigue and horrible morning (all day) sickness wore me down, so I agreed that we could tell his family as my 40th birthday gift to him during our annual family camping trip. We told them around the campfire the first night of camping, way up in the mountains, at 7 weeks 2 days pregnant. Everyone was overjoyed and surprised.

The next day, on June 18th, in the middle of our first full day of camping, I was trying to take a nap in the tent when I felt a little gush. I had been experiencing some urine leakage thanks to my ever-expanding uterus, but my heart sank when I realized it was pink liquid…not blood, but definitely not urine. Thankfully, Paul rode into camp at that moment on his quad. We grabbed the dog and our clothes and raced down the mountain into cell phone range to call my doctor. He couldn’t see me until the next day, and suggested we either go to the emergency room or wait to see him for an ultrasound the next day. I was positive I was miscarrying, so rather than waste the money on an ER visit where nothing would be done for me, we decided to wait to see him in his office.

That ultrasound was shocking – both babies were just fine! I’d had a “maternal bleed” that had already clotted. (We didn’t learn until weeks later it was actually a moderate placental abruption with Baby A, the twin closest to my cervix. Baby A also had placenta previa, meaning the placenta was attached over top of my cervix. This is something that usually corrects by week 20, but if it fails to, it can lead to catastrophic consequences. The abruption could have been a fluke, but most likely happened because I kept bending at the waist to get into and out of the tent.) I was placed on bedrest for a week, not allowed to lift anything over 10 pounds, or bend over or exert myself in any way. Paul transformed into Superman and assumed all household and farm chores (we had a flock of chickens and 5 Scottish Highland cattle, plus a dog and two cats, plus a 2000+ square foot house…and he works full time, too).

I continued to spot and bleed, even though that “maternal bleed” had clotted and was no longer active. I was cleared for light activity, but no bending, lifting, exercise, or sex. My doctor figured the culprit behind the continued bleeding was a cervical polyp, since none of our additional ultrasounds showed any indications of blood in the uterus. The original abruption had healed, and, little by little, Baby A’s placenta was moving off of my cervix as my uterus continued to grow by leaps and bounds. My fertility doctor released me to regular obstetric care at 11 weeks 1 day, just as planned.

I had two appointments with the HMO’s obstetrics department, first with a nurse to have all my blood work taken, then two weeks later with a midwife for an annual exam. In both cases I expressed concern about when I – a high risk twin pregnancy – would see an OB, but I was assured that “they do twins all the time”, I wasn’t that old (37), and bleeding during a twin pregnancy is perfectly normal. My first regular OB appointment was scheduled for August 23rd, at 16 weeks 6 days pregnant.

Meanwhile, Paul and I traveled 1.5 hours north up to the University of Washington for a nuchal translucency (NT) scan, which is an ultrasound technique used to detect the risks of birth defects, mainly trisomies. The car ride, what with my giant uncomfortable twin belly, was a difficult much for me, but we made it, and were thrilled to learn that both babies were as healthy as could be! The risk for trisomies in a 37-year old woman is 1:170, but twins doubles the odds to 1:85. Amazingly, Baby A received a glowing 1:749, and Baby B stunned us with 1:1049! With odds like that, there was, thankfully, no reason to do any further testing, ruling out the need to undergo either an amniocentesis or chorionic villi sampling (CVS), both of which carry risk of miscarriage. We happily entered the second trimester – the “safe” zone – at 13 weeks on Wednesday, July 27th, and, relieved, finally felt safe enough to share our pregnancy news with friends and the outside world. We visited Babies ‘R’ Us that weekend to check out strollers and car seats – finally feeling confident enough to look at those big items. I’ll never forget the sight of my silly husband popping wheelies and making racing noises with the double stroller in the middle of the aisle! Our car had a notoriously shallow back seat so we had more research to do, but really liked one stroller/car seat combo that had elephants on it. I know in my heart, looking back, that’s the one we would have selected.

The evening before the store visit, on Friday, July 29th, at 13 weeks 2 days, my “normal” vaginal discharge (which had been mostly spotting but had recently gone to clear) changed to peach-tinted mucus. I had read to expect a change in discharge in the second trimester, but I still thought it was weird, so I called our HMO’s consulting nurse line. I was seen Monday, August 1st by an OB, who said it was just my cervix acting up; I was not dilating and the babies were fine. The very next day the peach color turned to red, so I called the consulting nurse line again, who immediately paged the OB on call. They arranged for me to have a very detailed ultrasound the next day at Providence St. Peter Hospital on Olympia, who has much better equipment than the HMO (necessary for checking on twins), followed by another OB visit afterward.

The ultrasound took 1.5 hours and was horribly uncomfortable, but I was able to watch on the wall-mounted flat screen and delighted in seeing my babies. Just like all our other (six) ultrasounds before, everything appeared fine. The babies were very active, causing trouble for the techs, who were trying to measure femurs and head circumferences and check for two hands and two feet for each baby.   Once the ultrasound was finished, I saw an OB, who said I’d had another moderate placental abruption with Baby A. Unlike the first time, this doctor did not recommend bedrest. Instead, he told me to take it easy but resume my normal activities. He did say one thing I will never forget: the presence of blood is an irritant and could cause premature rupture of the membranes. If it happened close to full term everything would be fine, but if it happened earlier it might not be fine. Since my first abruption healed and I had been told time and again that spotting was normal for twins, I didn’t let his words worry me too much.

That same evening I started feeling my big belly harden and soften. I even had Paul feel it. It didn’t hurt and there was no regular pattern, so I thought it must be early Braxton-Hicks. Everything with multiples pregnancies happen earlier than singleton pregnancies. I wasn’t worried…but in hindsight I should have been…

The next day, Thursday, August 4th, I woke up feeling like I’d been hit by a truck. My entire body ached. I had an appointment scheduled with my osteopath that morning and stayed home, but decided perhaps he could help my body feel better. He did some work on my back, neck and painful round ligaments, and I left his office moving slowly but feeling a little better. I spent an hour or so at work while my manager taught me to use a VPN fob with the laptop that had been checked out to me, so that I could begin working from home full time, starting the very next day. I felt so crappy when I got home that I just stayed on the couch, watching TV, the laptop and fob forgotten. Then, at 4:50 p.m., a mere 26 hours after hearing the OB’s comment about ruptured amniotic sacs, I felt a gush. Every time I moved it gushed more, like I was peeing but I couldn’t control it. I checked in the bathroom; this was not urine. I called the consulting nurse line, who paged the on-call OB, who told me to head to the St. Pete’s ER. I called Paul, who was at his brother’s house 20 minutes away, and told him to hurry home. We sped the 30 minutes to the ER as soon as he pulled in our driveway.

In the emergency room waiting area, we joked and kept it light. I guess we were both in a bit of denial, but given our early experience with “gushing” and Baby A’s abruption, we thought the outcome might be the same.

Of course, time in the ER moves at a snail’s pace. It took the ER doctor – who, for the record, was a total jerk, saying things like, “They told you that 25% of these things end in miscarriage, right?” with a smirk on his face – over 5 hours to get me in for an ultrasound and vaginal swab, while I lie there in a puddle of amniotic fluid ordered by the HMO’s on-call OB. (Thank God for her, because it seemed like the ER doctor wanted to send me home.) This time, the flat screen monitor – in the same ultrasound room I’m been in just two days before – was not turned on. The ultrasound tech was very serious. Paul stood by my side, watching the screen, straight-faced. (I had coached him to look for black around both babies, since that’s what amniotic fluid looks like on ultrasound. He’d said he wouldn’t know the difference. Only later did I learn that he knew what he was seeing, and that it was very, very bad. It breaks my heart that he’ll carry that image in his mind forever.)

Once back in the ER, Dr. A., a very compassionate, caring OB from our HMO, confirmed the bad news: Baby A had had a complete, catastrophic rupture of the amniotic sac and there was virtually no fluid left, plus both babies’ heart rates showed signs of distress, possibly due to infection. There would be no happy ending here…it was impossible.

She gave us three options: go to the Family Birth Center for induction of labor; go home and wait for labor to start, and then come back for delivery; or wait for the babies to pass away and do a D&C. There was no way to save the babies…it was too early and what had started could not be stopped. We chose to be admitted and have my labor induced, and we’re so glad we did. We wanted to experience this most important event in our lives and see our babies who we had waited for for so long and wanted so badly.

At about 12:30 a.m., once I was comfortably in bed, they gave me Cytotec by mouth and an IV Dilaudid pump for pain. Paul, still filthy from his logging job, starving for having not eaten since 8:00 a.m. the day before and desperately tired, went home to shower, eat, grab some things from home and feed the dog. Our nurse, Stephanie, set up a bed for him next to mine when he returned and we both tried to get some sleep. (Stephanie was the same nurse who was called to the ER to swab my vagina to check for amniotic fluid. It was weird, but we were both relieved to see her sweet, familiar face, knowing she would care for us when we needed her most.)

Hours later, having dozed a little bit and realizing I was pushing the button on my Dilaudid pump quite frequently, I called Stephanie, saying I had to pee and that the Dilaudid wasn’t working anymore for some reason. I had no sense of time, so didn’t realize what was actually happening. Stephanie came in to help me and as I stood up, holding a giant pad thing between my legs to catch the leaks, I felt something “big” come out. When I sat on the toilet and looked into the pad, there was our daughter, all 5 1/2 inches and 1.2 oz of her, born at 6:14 a.m. Stephanie took her, gave me another pad and quickly helped me back toward the bed. I immediately started to vomit and couldn’t stop. Our son was born four minutes later, in my bed, at 6:18 a.m., measuring 5 inches and weighing 1.3 oz., Paul standing next to the bed, groggy, trying to get his clothes back on.

Time really stopped then; I think I was in shock. It was definitely an out of body experience. I recall looking at the clock, then at the nurses sitting between my legs, holding handfuls of giant blood clots as they dug through them, looking for the placentas, asking me to push, and pushing on my belly to massage my uterus. In the end they rushed me in for a D&C for retained placentas. I don’t even remember signing the consent forms, but I know I did. Paul said later he was so scared. I was oblivious to everything and remember those moments only in strange, dim mental snapshots.

Paul called both our families as they wheeled me to surgery. Before they arrived, our day nurse, Vivian, carefully washed and arranged our babies, singing softly as she did it, and placed them in an isolet, wrapped together in a blanket. She painstakingly recorded their hand and footprints on paper, and later transferred them to a card for our memory box. Our family members arrived in waves a few hours after my surgery (they live two hours north and nearly two hours to the southeast, so they had to drive a ways to get to us.) I think they were all stunned to find the babies in the room. Paul and I were surprised and overwhelmingly grateful for the opportunity to stay with our children, and to have our families meet them, even though I’m sure it was scary to see them. Babies born earlier than 28 weeks have not yet accumulated body fat, so their skin is transparent, giving them a beet red appearance. Plus, our little 14 weekers were tiny and yet perfectly formed, with 10 wee fingers and toes each, little eyelids that were closed, round little heads. It meant the world to see both my mom and my grandma hold the babies on their laps, and I know they both said prayers over them as well.

We stayed in the hospital and let our nurses care for us for a total of 30 hours, and the babies were able to stay in the room with us the entire time. Nurse Vivian called the chaplain and social worker to come visit us, which was helpful, and called a professional photographer to take pictures for us. This extra time and care meant the world. In the hours after I delivered the babies I was numb, both from the hormones and from the drugs I was given during surgery. I later heard that I seemed very pulled together, while Paul was a mess. Later, at home, as we read through the bereavement information we received from the social worker, we learned Paul had exhibited all the classic signs of shock: extreme cold, shaking, etc. I was just drugged and numb. The last family members didn’t leave our room until after 7:00 p.m. I was grateful to finally have some time alone with my husband and our babies. Still, my tears didn’t come until 2:30 a.m., when the Ambien they prescribed to help me sleep failed. I stood in my hospital gown and fuzzy green socks, holding my babies to my chest and sobbing, while Paul slept the sleep of the dead in his cot.

That last morning in the hospital was very difficult. The on-call OB, Dr. C., visited and verbalized my discharge instructions. (For the record, we both hated her. She – plus the fact that I wasn’t taken seriously as a high risk OB patient by the HMO – are the reason we switched our insurance in January so that we can see the doctors of our choice.) Finally, our morning nurse came in with the written instructions, and it was time to go. She brought in our beautiful memory box, a pale teal satin-covered box, tied with a bow, containing the card with hand and footprints (the first I’d seen of them), the birth stats (the first I’d learned of their weights and measurements), two little preemie hats that could have fit their entire bodies, a card and journal, and the hospital bracelets I would have worn had they been born alive, months from then, like they should have been. When it was time, we kissed our babies one last time, and our nurse wheeled me out in a chair, holding my bag of person things and the memory box. It was surreal.

The days after delivery were a blur. There was a lot of crying, lots of talking and tender moments, forced meals and showers, a couple of day trips away from home as we attempted to make ourselves feel better. So many tears. So many “what ifs” and regrets have flowed through our hearts; we know this is all part of the grief process. One thing that ate at me for days was the memory of having our children blessed the night they were born, and having no names to give them. We weren’t supposed to have found out their sexes for another 6-8 weeks, and hadn’t even started talking about names. Seeing “Baby Girl” and “Baby Boy” on the blessing certificate was crushing to us both. It took us four days to name our son and three more to name our daughter. Aliya means “to ascend” and her middle name, Amy, means “beloved” and is my name and my grandma’s name. Bennett means “little blessed one” and his middle name, Paul, means “small,” and he shares that name with his daddy and his grandpa. I made birth/name announcement cards for our families so they could have something to hold onto, see our children’s names in writing, and know the meanings.

Recovery from the D&C wasn’t bad. I wanted to gush blood or feel excruciating cramps, or have my breasts become engorged and painful with milk that I couldn’t use, anything to feel the physical punishment of what had happened, but it hasn’t been like that at all. Recovery was gentle, fairly easy. It felt unfair. I was seen by the OB who told us the bad news in the ER about three weeks after our loss. She was wonderful, very concerned about my emotional health and physical health. She put me on both vaginal and oral antibiotics to kill whatever bacteria had caused the infection in my babies and cleared us to try again when we were ready. We visited the fertility doctor, too. We tearfully told him the events that led up to our loss, and he reviewed my thick chart, saying, “This one was a bit of a train wreck, wasn’t it?” To this day, while he suspects that bleeding polyp in my cervical canal caused the whole miscarriage…all that constant bleeding would have ruined my mucus plug, which easily could have let that infection in, and my body, trying to protect itself, started preterm labor, which ruptured Aliya’s amniotic sac. None of it could have been prevented…nor could it have been foreseen. As of September 2011, all evidence of the polyp was gone.

Emotionally, recovery was terrible. I had a history of clinical depression in my 20s and was very concerned about postpartum depression, but always assumed my “normal” feelings of sadness and anger – anger toward my body and especially some of our family, who were not talking to me about our loss at all, as if it never happened – and to help myself, had joined two support groups with my husband and was seeing an acupuncturist and a hypnotherapist. The hypnotherapist referred me to a counselor in February – five months after our loss – after the depth of my anger concerned her…well, that and my short term memory loss. It turns out I did have mild to moderate PPD. My counselor, who herself experienced infertility, second trimester miscarriage and PPD, said that between my history of depression, the trauma and anger from the loss, and the grief process, there’s no way I couldn’t have had PPD. Talking with her has been tremendously helpful. I do still regret that we didn’t take pictures of my big belly. Part of sharing pregnancy with people is the progression of that growing belly, the changes our bodies go through, and no one, aside from my co-workers, my brother-in-law and a few local friends, got to see how giant my belly had become, how I was waddling already. It almost made it all feel less real and disconnected the pregnancy from our loved ones. If it weren’t for the fact that they all saw the babies themselves, I don’t know how they would feel any connection to us through our loss. We won’t make that mistake again.

We’re still infertile and are now trying for our rainbow baby or babies. We started trying again earlier than we should have…my body was physically ready, but my heart wasn’t. Interestingly, I was plagued with ovarian cysts and then two failed cycles, and was finally diagnosed as a poor responder with low ovarian reserve in January and prescribed 10 weeks of DHEA to try and remedy that. I believe these failures and delays were my body’s way of trying to give me more time to grieve. At seven months post-loss, I turned a corner and have been doing much better since. I still miss my babies and grieve our loss, but I no longer cry every day. I feel much more like my old self now, and filled with hope and a stronger desire than ever to have babies with my husband. We’re currently in the middle of another cycle, this time trying on purpose to convert to IVF if I respond well enough to the drugs, hopeful that the very high doses I’m on will result in enough eggs to transfer three embryos back into my uterus (I’m 38 now, and that’s the number they aim for to achieve a singleton pregnancy). Dr. M. is both a fertility specialist and a high risk OB, so we’ve decided to stay with him for all future pregnancies (should we be so blessed). Even though he couldn’t have changed the outcome of our loss, he would have been straight with us, would have been seeing me every two weeks for ultrasounds and cervical checks, and would not have dismissed my concerns like the HMO did. His care and concern is so evident. Even though we have no true reason to think I have incompetent cervix, he suspects I might (although the weight of a twin pregnancy would have contributed to that), so he may place a cerclage early in my next pregnancy. I also take a daily probiotic that’s supposed to aid vaginal health to keep the balance of bacteria favoring the “good guys”…I don’t ever want an infection again. I will now forever be at risk for placenta previa, placental abruption and preterm labor for future pregnancies, but I know that Dr. M. will do all he can to give us our take-home baby. We can’t give up trying…not yet. As a fellow babyloss mama blogger put it, we can stay in fear or we can walk through fear and choose love instead…and we choose love.

Amy blogs at http://ourtinyangels.blogspot.com.

You can contact her at teninohighlands@hotmail.com.

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Comments

  1. Heather Raschko says:

    Hi Amy~

    Ugh – even though I’ve heard it before, your story is just so heartbreaking. I think of you all the time and hope/pray that this next cycle will work. I know it won’t be an IVF conversion but there is still hope. I can’t imagine the emotional toll this has taken on you and Paul and although it’s been hard, you are handling it very well.
    Love you,
    Heather

  2. Jennifer says:

    Amy, it’s such a terrible loss, and yet you write about it so beautifully! You helped put my own feelings into words, and I hope you know how much your courage and openness are an inspiration to other women dealing with baby loss. I really, really hope you are blessed with a beautiful family!

  3. Sandra Ivette says:

    Hi:

    I’m very sorry for your loss. I also loss my twins Alexander and Sebastian August 5, 2011 at 20 weeks. It’s been very hard and I cry almost everyday. I miss them and I always will. I hope that everyday you feel and little better and soon can have the family that your deserve.

    Take Care

  4. Alana Howes says:

    Hi Amy,

    You story echoed my experience of loss with my little girl at 14 weeks on Aug.3, 2010. I hate that anyone has to experience what we have gone through but I have been so thankful to read posts from people who have been able to share their stories to remind us that we are not alone. I just wanted you to know that I will be thinking of you and sending you positive thoughts and wishes for a rainbow baby soon…

    Alana

  5. I have been absent for a while, but now I remember why I used to love this site. Thank you, I will try and check back more frequently. How frequently you update your website?

  6. read more says:

    There’s definately a great deal to know about this issue. I like all of the points you made.

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