December 23, 2015

Today’s post is a retelling of the events of this day, exactly two years ago.

We woke up the day before Christmas Eve with a game plan. Brian would come home from work early so he could accompany me to my appointment with the fetal specialist to check on Aria’s development and make sure her tumor wasn’t getting any bigger. It had already increased in size once, but everyone was fairly confident that it would stop growing and become less of an issue as Aria continued to grow in the womb. There were still concerns, but mostly there was hope.

We were planning on leaving Florida and flying to Maryland early the next morning (Christmas Eve), to spend the holiday with our families and return just before the New Year. Since Aria’s condition is researched and treated most often at the Children’s Hospital of Philadelphia (CHOP), and because we would already be on the east coast visiting family for Christmas, our team agreed it would be a good idea to set up a consult with them during our trip. So we made an appointment at CHOP on Dec. 28, 2015, perfectly squeezed in before our flight back to Florida a few days later. It would be helpful to have them be familiar with us, and Aria’s specific case if she got worse and needed more intensive care at birth. This was still mostly a precaution, as we were continuously assured that based on statistics of other babies with her condition, Aria would be just fine.

With our schedule jam packed with doctors appointment’s with Fetal specialists and my OB/GYN over the last few weeks, we had been too frazzled to pack or shop for Christmas gifts. So I spent the first half of the day scrambling to finish off my Christmas list, not an easy task with a large pregnant belly in the way. When Brian got home, and it was time to head to my appointment I still had a few things left to buy. Luckily, the hospital was across the street from the mall so planned to make a pit stop there right after.

We were the last appointment of the day before the office shut down for Christmas Eve & Christmas. You could feel the excitement in the air as the staff started to close up the office. They just had to do our ultrasound, and we could all get on with our holiday festivities.

The ultrasound started off very routine, she let us listen to Aria’s heartbeat which was nice and strong. She gave us a good side profile of her face, and she was adorable as ever. Then she scanned her belly, and I saw her write a word that I had recognized from an online support group for babies with Aria’s diagnosis, “ascites.” My heart sank, suddenly this was looking like the worst case scenario we never imagined would happen. She remained calm, and said the doctor would be in shortly to explain our images.

As she walked out of the room and the door shut behind her, I looked at Brian and said, “She has hydrops.” Always the optimist he responded, “You don’t know that, we don’t know what we are looking at. Just wait for the doctor.” Then I told him I saw her write ascites, and what that word meant – she had fluid in her belly.

Before that conversation could continue, Dr. W walked in. “So tell me what you already know about the baby’s condition.” This seemed like an odd question, but I replied with everything I had been told. He nodded, then grimaced, then tried to hide the concern on his face. I could tell he was fumbling with his words in his head. He confirmed my suspicions, Aria was showing signs of hydrops.
“Do you still have that appointment in Philadelphia?”
“Yes.”
“Good. When is it?”
“The 28th.”
He grimaced again.
“We might need you to get there sooner. We might need you to go now.”
He asked the ultrasound tech to call the Children’s Hospital of Philadelphia (CHOP), so he could speak with a fetal specialist there and get their opinion. In the meantime, he brought us into a consultation room next to the nurses station. As we were walking into the room, a nurse informed Dr. W that CHOP is an hour ahead of our time zone and their offices had already closed. She didn’t know if we would get ahold of anyone.

This is when chaos erupted around us. Every nurse was told to grab a phone and start dialing until they found someone. This was the moment I fully understood the seriousness of the situation. We didn’t have time. It couldn’t wait. We listened to the frantic clicking of the buttons on the phones in the lobby, and after fifteen minutes of this it felt like we were fighting a losing battle. Then a nurse shouted, “Dr. W, I got a cell phone number for Dr. K in Philadelphia!”

Relief washed over me. Hope returned. Now we were getting somewhere. Dr. W called Dr. K and I could hear them coming up with a plan. Brian assured me everything would be fine, we now had a very experienced doctor in Philadelphia on our side.

Dr. W finally came into the consultation room to inform us of their plan. We needed to get an injection of steroids, because in previous studies it had been shown to reverse hydrops and prevent these tumors from becoming any larger. He explained that the injections are given in two parts, and they need to be done 24 hours apart. So once we got the first one, we had to be in Philadelphia within 24 hours for the second injection. It was currently 6 PM. Our flight was scheduled to arrive in Baltimore the next day at 1pm, so we had plenty of time to drive to Philadelphia in time for the next injection. Everything was falling into place.

After receiving the first dose, we decided to grab dinner at Olive Garden. We ordered way too much food because both of us were feeling incredibly stressed and needed to eat our feelings. As we ate, I suddenly felt like I couldn’t inhale as deeply or lean all the way forward because something was in the way. Then it dawned on me, Aria’s feet had reached my ribs. I marveled at this little developmental milestone, and took it as a good sign that despite her challenges she was still growing like a weed. Our little fighter was going strong.

By the time we completed our Christmas shopping at the mall and made the hour drive back to our house, it was nearly 11 PM. We had to be up at 4 AM for our flight the next day, and neither of us had packed our suitcases. We were both ready to crawl into bed and cry ourselves to sleep, but we had to get this done. So we started to pack, and this was when I lost it.

I grabbed a few maternity shirts, and started trying to decide how many I should bring. Suddenly I realized I didn’t know how long I would be in Philadelphia. I didn’t even know if I would be coming back before Aria was born. Should I pack regular clothes too, so I would have things to wear while Aria is in the NICU? I started grabbing armfuls of clothes from our closet and tossing them into my suitcase, and once it was totally full every ounce of heartache and fear that I had been suppressing over the last five weeks bubbled over and poured out me. I struggled to see through the hot tears pouring down my face as sobs escaped my lips. This whole situation was terrifying. How could this be happening?

Brian held it together as he consoled me, then helped me finish packing. The pack and play we got for Aria had arrived in the mail that afternoon, and we quickly set it up next to our bed so she would have a place to sleep that was close to us when she finally came home. Then we finally poured ourselves into bed. As I drifted off, I thought to myself, “This day has surely been the hardest day of my entire life.”

I didn’t know then that I would be repeating that thought many times over the next few days.

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She could have been anything.

Today I saw a post on Instagram, asking moms who have lost little ones what they wondered about the futures they could have had. Specifically, what they could have been if they had the chance to grow into adulthood.

And I thought about Aria, and what she could have been, which took me right back to the thoughts and conversations I often had during my pregnancy.

It was very important to me that she grew up to believe she had the ability to be absolutely anything she wanted to be. I worried constantly about making sure we never placed invisible borders around her.

We often called her a princess, simply because she was our girl, and we’ve got a huge love for Disney. But I remember thinking I didn’t want to call her that too much, just in case she wanted to be a knight instead. Or a doctor. Or a veterinarian. Or an Artist. I never wanted her to believe she had to fit into a mold. I even remember having a hormonal moment about baby dolls, because I was frustrated that all the ones in the store had blonde hair and blue eyes. I was infuriated. One thing I knew for sure, with me being Korean with dark hair and brown eyes, and my husband also having dark hair and brown eyes, was that Aria would have dark hair and brown eyes. I was terrified of her growing up in a world where the standard of beauty was something other than the race she was, and features she had. I grew up that way, and I didn’t want it for her.

I wanted her to look at the world and see endless opportunity. So being here, on this side of heaven, living life without Aria in my arms, it feels as if the world has lost so much. She could have been absolutely anything. She could have been a revolutionary research scientist. She could have been the author of the next great American novel. She could have been the inventor of a life saving medical device. She could have painted a portrait to rival the Mona Lisa. She could have been a mother, raising children who would change the world just as she did. She could have been anything, and now we’ll never know.

I suppose that is why we’re so dedicated to doing good things in her honor. I know she would have been a world changer, and I’ve got to try to accomplish some of it in honor of the legacy she would have left, if only she had the chance.

“Do you ever wonder if that’s all we’re ever going to be?”

Brian and I were walking through the mall tonight after an overwhelming visit with our Reproductive Endocrinologist (aka our Infertility Doctor), and I saw an adorable shirt with the words, “Dog Mom” on it. I pointed the shirt out to Brian and he asked, “Do you ever wonder if that’s all we’re ever going to be?”

My heart initially sank, I didn’t want him to ever feel that way, but I had to admit that I knew exactly what he was feeling because I fear that every single day. I fear that all we’ll ever have is our babies in heaven and our dog. I guess in some ways I’m thankful. I am so grateful that I was chosen to be the one to carry my daughter, no matter how brief her life ended up being. I’m even grateful for the baby that we miscarried because for the short few weeks I carried that baby, I got to feel such an overwhelming hope and excitement that I hadn’t felt in such a long time. Then there’s our sweet four legged angel in a fur coat, who brings such a beautiful daily happiness into our home. I’m grateful for all of them, and the color they have added to our world.

But despite all that, there is fear in wondering if this is it for us. Never to hold another baby in our arms, never to know the sweet sound of our newborn’s first cry. So many hopes and dreams never coming to fruition.

Earlier today I was sure we would leave our RE’s office with answers, a solid plan, and lots of hope. Instead we left feeling uneasy and confused about our next steps. The hard thing is that when it comes to fertility treatments, nothing is guaranteed. You can spend thousands and still walk out of there empty handed. It’s beyond frustrating and completely unfair. Yet the thing that keeps pulling us back is the chance that it could work, and then of course it would all be worth it in the end.

But it’s nights like tonight that I am fearing if this is all we’ll ever be, and it is so very hard.

Loss, infertility, and admitting there’s a problem.

When I miscarried a year and a half after our newborn daughter passed away, I wasn’t sure we would try again. At first we didn’t want to. It was too much for our broken hearts to bear.

But as the first weeks passed, a renewed hope filled our hearts and we decided to keep trying. They say you’re more fertile after a miscarriage, so what did I have to lose? Well, it turns out that isn’t true for everyone.

Last week, I became so frustrated and so tired of waiting, that I finally made the phone call I had been dreading, and set up a consult with a fertility clinic.

We’ve had tests done at two different fertility clinics in the past, but I was referred there by my regular OB/GYN. I felt like I had a small safety net by seeing a “regular” doctor that all women see. I didn’t feel like I was infertile in that waiting room. But sitting in the waiting room in a fertility clinic, that makes it real. And well, I didn’t want it to be real.

Denial isn’t just a river in Egypt, folks.

But they say admitting the problem is the first step, and I guess admitting the problem is bigger than your regular gynecologist can handle is the second.

It only took a few minutes on the phone with them for me to realize that I was making a really good decision. My fertility specialist put me through more in one appointment than my old doctor did in six months, and that makes me feel like something is actually moving forward. And it helps that the homepage for our clinic’s website says, “Where the waiting ends and families begin.” And dear God, I hope so.

We are waiting for all my tests to come back before finalizing our plans forward, but I already feel so much hope. As my doctor said on Tuesday, “You’ve been through a lot of rough stuff. We need to get you some happy news. It’s time.”

Missing Her

Last night I turned to my husband in tears and said, “Nobody misses her like I miss her.”

And I guess it makes sense that no one misses Aria like I do. I’m the only person in the entire world that was chosen to be her mother. I’m the only one who knows what it was like to carry her in my body. I’m the only one who knows the agony of feeling her kick as the doctors told us she was dying. I was the first one to kiss her sweet face. I was the last one to hold her when we said goodbye.

But that’s the injustice in loss. Even though the rational part of my brain gets it, my heart does not. My mama heart just wants her to be loved all over the world, in the exact same way that I love her. And I think maybe more people would love and miss her like I do if they had more time to get to know her, but tragedy stole that from us. No one was able to bond with her exactly the way Brian and I did while she was here.

Every time she’s not acknowledged it stings, maybe more now than ever. As time moves forward and people move forward, the grief gets more isolating and internal.

But there are those who do love and miss her. The loss of her wasn’t the same for them as it was for Brian and I, but Aria still left her mark on them. And I’m so grateful for them. I only wish we were all given more time.

Loss after Loss

Miscarriage after infant loss is so hard. It’s messy, and the mixed emotions are endless.

When I first found out my hormone levels weren’t where they should be at the start of my second pregnancy, I was instantly worried this was a sign that something was very wrong with our baby. I wasn’t really thinking that this meant I would miscarry. I was afraid of a congenital defect, and going through what we experienced with Aria all over again.

Honestly, I never really thought this baby would die. I guess a part of me still assumed that this world wouldn’t be that cruel, and yet it was.

However, this loss feels very different. In some ways, it hurts less and in others it hurts more. It’s hard to compare the two losses.

After Aria, I didn’t return to work for 19 months. I just couldn’t. I wasn’t ready. When I miscarried, my loss was confirmed on a Saturday and I was back at work on Tuesday morning. (Thankfully, it was a holiday weekend.) I wasn’t really ready to come back to work then, but I also wasn’t ready to tell my coworkers about it so it felt easier to just resume as normal. Looking back, I should have taken time to process, grieve, and physically complete the miscarriage process before going back to work. It would have saved me some trauma.

My miscarriage also felt very isolating. During and immediately after Aria’s birth, I was surrounded by people who showered me with love and support. The staff at CHOP were absolutely wonderful. But when I miscarried at home, I had only my husband present, and my family who comforted from afar. They all did such a wonderful job supporting me, but it was vastly different from what I experienced with my first loss, and I wished multiple times that the support could have been more like my first.

Overall, I think one of the biggest hurdles for me post miscarriage is feeling like I can’t grieve. So many of the staff members at the hospital were shrugging me off as “just another miscarriage,” and acted like they were treating me for a common medical condition instead of the loss of my second child.

I think that after Aria, I felt like my grief was more socially acceptable. I held a child as she lived and breathed. I held her as her heart beat one final time. Then I had to let her body go. I picked a casket, funeral flowers, and a burial plot. I came home to an empty crib, unworn onesies, and toys that would never be needed. So of course, I was devastated. Anyone who heard my story could completely understand that I was absolutely broken by this. They expected that.

I didn’t feel like I was given that kind of space to grieve after my miscarriage. People just said they were sorry one time, told me miscarriage was common, then asked if we were going to try again.

But I’m devastated. The one thing I clung to after Aria was the hope of having another child. Not to replace Aria, but to fulfill the desire to parent a child on this earth. I don’t feel like I have that anymore. The doubt is so real this time around. Even after being told both losses were random and not expected to happen again, I don’t feel like I’ll ever get to bring a baby home. It’s hard to see the point in ever trying again. It almost feels easier to stop trying, and stop opening my heart, so it won’t keep breaking over and over again.

Going forward from here is very confusing. I don’t have a single idea of what my life is going to look like in the coming years. It’s scary. But I’m trying very hard to believe there is still so much good left for me to uncover.

Speaking up

At the beginning of my journey with grief, it was my mission to prove to people that there was so much more to my story than what meets the eye. I felt like I had lost my voice and my identity. Since society has created such a stigma around infant loss – I also felt like I had lost the ability to create my own narrative. People would look at my situation and say things like, “You’re young, you’ll have another child.” Or even, “At least it happened when she was a baby, before you really got to know her.” Someone once told me she wouldn’t tell anyone if she lost a baby because it seemed “attention grabby.” Everywhere I looked, people were getting it all wrong. I can’t tell you how unbelievably maddening that was.

Truthfully, I think that was the catalyst that ultimately led to me starting this blog. I needed an outlet, a place where I could share absolutely everything; in my own words, in my own time, in my own way. I needed to find my voice, then send it to as many corners of the world as I possibly could. I needed people to know what I knew to be true of my life, my daughter’s life, and of my grief. I didn’t want sympathy. I didn’t want attention. I wanted people to know this wasn’t just a failed pregnancy. My daughter wasn’t some defective fetus that we could just replace with another baby.

As I shared in my last post, we recently endured the loss of another baby. This time, loss reentered our lives in the form of a miscarriage. Our experience with my second pregnancy was very different from what we endured with Aria, and this loss occurred significantly earlier, but the devastation still remains.

At first I wasn’t sure if I would talk about my miscarriage. Even after being so public about the loss of our daughter, I wondered if this topic was too much to share. I didn’t want people to perceive me as some kind of repeat failure. I was afraid that everyone would hear my story and blame me for creating two babies that couldn’t stay. I was afraid they would find me at fault, despite the enormous efforts we gave both of these babies in an attempt to keep them. I guess that’s why only a handful of people even knew I was pregnant in the first place. I was so scared of telling the world we had lost once again.

Even after being so immersed in the pregnancy and infant loss community for nearly two years, I realized the stigma around loss still had a firm grip on me. So I’m speaking up about it.

I had a miscarriage.

For the second time, I walked into a hospital pregnant, and walked out with an empty womb and empty arms.

This has happened to me. But it does not define me. It does not make me less than. It does not negate my motherhood. I didn’t fail. I didn’t do anything wrong. It just happened. I don’t know why. I don’t know how. But I will continue to survive, and thrive in the face of total devastation.

Because even now, against all odds, it is well with my soul.