Julie’s Story

I think the hardest part about miscarriages, for me at least, is not having anything to hold. When I’ve lost a loved one in the past, I am left with something to hold. My uncle’s yahoo can airplane, the elephant necklace my grandmother gave me, or my dog’s stuffed hedgehog are all things I can hold or look at when I am missing them to channel my emotions into and it brings me some comfort. But losing your unborn baby leaves you with an aching nothingness. The lack of tangible mementos is amplified by the missing weight of what should be your baby in your arms. I wasn’t even given my baby’s ashes. Nothing but a few positive pregnancy tests and ultrasound pictures stand as evidence that they existed and were very very loved. Another difference is happy memories. When I’m missing a loved one, I can think about happy times we shared together or different attributes of theirs, or their lives well lived, and that reminiscing can sometimes add a little splash of joy to the sorrow. But with miscarriages, you don’t have that. How can I express how I loved someone so very deeply and miss them with every bone in my body, yet I’ve never met them? I can’t tell you what they looked like or a single characteristic, but I can tell you that my other losses, has paled in comparison to losing Lucas and Alexis.

From the moment I saw the positive line first appear, I was in love. Elated. Filled with bliss imagining what the future holds for our little family. The possibility of a miscarriage never even crossed my mind for the first 12 weeks.

Then at our 12-week ultrasound a severe abnormality was found. The type of abnormality that meant our baby would not make it to birth, and if he did, would die very shortly after. Termination was recommended. At the time, I just could not comprehend what the doctors were saying and was in disbelief. Why in the world would I terminate? Of course my baby is, and will be just fine. The ultrasound must be wrong. But after repeated scans, it was the same result. They did not have an official diagnosis for what was causing the hydrops fetalis, but they knew regardless of cause, the outcome would be the same. I could not accept something without at least having a name for it. So we did test after test and everything came back negative. Then at 14 weeks the ultrasound showed a healthy baby boy that miraculously had no issues and looked perfect. He was moving all over the place and stopped long enough to wave to us. I can’t describe the relief I had and was obviously so very thankful I listened to my heart and did not terminate. We were told we should paint the nursery and prepare for birth. We drove directly to my parent’s house to share the news as it was my mom’s birthday and we had not shared with anyone that we were pregnant.

Two weeks later I was in the bathroom getting ready for work and next thing I know is I am waking up on the bathroom floor with a blinding migraine. My husband rushed me to the emergency room where they told me 5 words that I would replay over and over in my head for years to come. “We couldn’t find a heartbeat”.  We called our OB, the MFM office, our genetic counselor, anyone we could get a hold of to try and push an appointment for right now to confirm and rushed in for a “better” ultrasound.  They diagnosed and confirmed fetal demise but did not know why I had fainted. At 16 weeks the baby, or ‘products of conception’ as the medical staff would say, was too big to safely pass naturally at home so I was given the option to labor and deliver my dead baby vaginally, or have a D&E. At the time, I couldn’t image the heartbreak of seeing my dead baby (this is a decision I regret to this day) so I chose the D&E which was performed 2 days later. After speaking with my genetic counselor we decided to have my ‘products of conception’ sent for pathology so I could finally find the cause for my heartbreak. I told the doctor our plan for pathology as I was being prepped for surgery. He seemed to be brushing off my request but I made sure to repeat myself 3 times as did my husband to make it clear we need pathology results.

A couple of weeks go by with no pathology results so I start making phone calls. The doctor chose not to send my baby to pathology despite my requests. And since he was supposed to be sent to pathology, I did not get his ashes. For all I know he was thrown into the medical waste trash. I still don’t have any answers. The best guess the doctors could give us was that it was something so rare there is no test for it. It was a ‘fluke genetic mutation’. We heard the word fluke so much, we decided to name him Luke. The only thing we could walk away with was hope. Hope that we paid whatever karmic dues this was and when we could pick ourselves up and try again, the chances of having two unrelated genetic mutations were less than half of one percent.

I returned to work the following week to a boss that viewed my time off under FMLA as a vacation and should therefore handle my coworker’s duties, in addition to catching up on my own, while they took a vacation. One of my best friends who is a vet, gave us a tiny sick puppy to foster for her dog rescue. Itty Bitty needed a lot of love and care and I needed something to love on and take care of. My husband and I tended to her around the clock, and after some scary times, she started to make some progress. I don’t know how I would have made it through that time without Itty Bitty. She was later adopted to an amazing family who renamed her Clover and is now living her best life and is unrecognizable from that sick little puppy that came into our lives when she was needed the most.

After a few months we decided it was time to try again. I was of ‘advanced maternal age’ after all so we didn’t have much time to spend not working towards a baby. By the time I was pregnant again, we were in the pandemic so my husband could not attend my appointments with me.  I went by myself to my new doctor who graciously allowed me to cry on her shoulder as we discussed the last pregnancy and how we will monitor this one. She comforted me that she will take care of us and that we’re both healthy and will be fine. I reminded myself of her words and the half of one percentage chance of another genetic abnormality and tried to stay calm until I made it past the 12-week ultrasound that ended my dreams the previous year.

After what felt like an eternity and countless healthy ultrasounds, we arrived for the 12-week ultrasound. My anxiety was so high they allowed my husband to come with me.  He held my hand as they ran that wand across my belly. After so many ultrasounds by this point, I had a pretty good idea of what that screen should look like. And I knew immediately that what I saw on that screen was not what it should look like. Once again, the doctor turned to me and said, “there is no heartbeat”. I had another missed miscarriage and was booked for surgery the next day. I asked for a pathology collection kit just in case my body decided to start the miscarriage process overnight. And it did. I couldn’t not know what happened to my second baby so I had to find her in all the tissue I was passing and make sure she went for pathology. I sat in the bathtub as the contractions would come and try to catch the tissue with a slotted spoon and differentiate the red globs of stuff from my baby. I never found her. I went in the next morning to have an ultrasound to ensure everything had passed and it had not, so I still needed to go through with the surgery.

When I was being prepped for surgery the nurse gave me a cup to provide a urine sample for a pregnancy test which is standard before surgeries. I asked him if he knew which surgery I was here for and he admitted he had not looked at my chart at which point he stepped out to read my chart. He came back sat down and apologized and spent some time talking with me about my experience and he shared his own experience. He was very sweet and cried with me and helped to calm me and held my hand on the way into surgery. His name was Alex so we decided to name this baby Alexis.

I woke up to a woman looking at me saying “what a beautiful Asian girl with green eyes!” I was instantly bursting with pride for delivering a beautiful Asian baby girl with green eyes! Until the next instant when I remembered what had happened and the nurse was referring to me (though I’m not Asian, I took my husband’s last name who is) and not my baby who was now gone forever.

The next week our geneticist called. The pathology was completed, and she had an answer for us. It was Turner syndrome. And it was girl. Another generic abnormality completely unrelated to the first pregnancy.

Even without any memories or experiences we could have shared, one thing my losses have left me with is a bunch of dates that will forever remind us of what we went through.  Lucas passed right around my husband’s birthday and Christmas, Alexis’ estimated birthday is meant to be right around my birthday, making it so much more difficult to celebrate any of these moments without thinking how they should have celebrated with us. There are the dates of when we learned they had passed, and when they were removed from my body, and when they should have been joining the world. None of these anniversaries can go by unnoticed or without renewed grief.  But this year we have our rainbow in our arms and can face these days and remember our angel babies as a family. We brought him home from the hospital on the one-year anniversary of Alexis’ D&C. 

After Alexis, we tried again and after going through all the same anxieties and emotions (now with the added stressed of the pandemic), hopping over sad dates, and nervously attending many tests and exams, and after a 26 hour labor, we were graced with a (big) healthy boy, Oliver. He is extremely loved and is spoiled by both sides of the family, knowing what we have gone through to get to him.  He is our third and successful try and everything that we could have ever wanted.  And yet we will still have to go through Christmas, holidays, days where we get to watch him grow up without his siblings to show him the ropes.  I often imagine Lucas helping Ollie keep his balance while he is learning to walk, or Alexis sharing her mango with him, and the three of them just getting into mischief and causing mayhem together. Every milestone is tempered knowing we should have celebrated it twice before, or that he isn’t getting to show off to a brother and a sister as well.  It’s a lot for him to carry and once he’s old enough to read this, he’ll understand those aren’t all just tears of joy when his mom is smiling at his firsts.  And even though Lucas and Alexis will never get old enough to be able to read this, I’ll forever carry them in my heart and remind them they are just as loved as the rest of their family they never got to meet.

Rainbow baby pregnancy announcement featuring two dogs and an ultrasound picture.

Picture of two dogs sitting on ground

Julie is wearing the rainbow skirt spread behind her and is holding her rainbow baby

Rainbow baby on top of rainbow skirt that looks like a rainbow.  Blue stuffed animals are at the other end.

Rainbow baby on top of rainbow skirt.

Read more about Turner Syndrome here.

Last photo taken by Kelly King.

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