WEIGHTLESS

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WEIGHTLESS

I mourn the days where the most terrifying thing to me was figuring out how to get an unwanted outside critter out of the house, or driving at night against someone with high beams. Or locusts landing on me while I enjoy the outside air. How I wish for those fears to take the number one spot in my mind again. It can go right over “bypass”, “hypertension”, “open heart surgery”, “anesthesia”, “sutures”, “drainage tube”, and whatever other risks come with an Atrioventricular Septal Defect.

Having a child changes you.

Having a sick child breaks you.

It’s like watching a fire burn and being incapable of putting it out. I’ve never known what helpless felt like until now. I mourn the days where the most terrifying thing to me was figuring out how to get an unwanted outside critter out of the house, or driving at night against someone with high beams. Or locusts landing on me while I enjoy the outside air. How I wish for those fears to take the number one spot in my mind again. It can go right over “bypass”, “hypertension”, “open heart surgery”, “anesthesia”, “sutures”, “drainage tube”, and whatever other risks come with an Atrioventricular Septal Defect.

Today, we got the call that our daughter's open heart surgery was being rescheduled. I received the call just as I pulled into the driveway after just having dashed to my local post office to intercept a package that was about to be returned to sender, all because we hadn’t had time to install our new mailbox at our brand new house. I had so much to do today, making mental checklists as I drove home. Unpack the utensils so we can eat. Find the kitchen sponge. Don’t forget to have breakfast, drinking nothing but coffee is not a good idea. Do we have meat defrosted for lunch? Oh, and find the pots and pans. We were, and still are, living from moving boxes. So now, I’ve crossed off “intercept lost package” from the list, feeling pretty triumphant and accomplished, and then my phone rang.

“Sure we can reschedule. When were you thinking?” I responded to the nurse.

“Wednesday.”

“Sure, we can do it that Wednesday instead.”

“No, this Wednesday, as in the day after tomorrow.”

Wait, that’s two weeks early. I pulled into the driveway and put the car in park.

“I know it's short notice,” she said, “but there were more pressing surgeries that needed to be done on your original date, and the surgeons don’t want to push her back later. An earlier repair is what is recommended.”

I watched the leaves fall from the trees in front of me. They danced in slow motion, weightless. They just swayed, going in any and every direction that the wind pushed and pulled them towards, effortless and accepting.

“Are you still there?”

“Yes,” I said, “I think we can do Wednesday.”

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I had two weeks until the original scheduled date. Two weeks to organize the house. Organize her nursery. Spend time with her in the mornings by the fireplace. Take her outside in the backyard to look at the trees. Enjoy some neighborhood walks to the lake. Two weeks. And now it’s two days. It’s too fast.

So here I was, hours after that call, unpacking boxes and searching for clothes to bring to the hospital. My aunt sent me kimono-style onesies…where did I pack them again? Where are all of her long sleeved shirts? Where is this matching sock? Where is the dang box with her favorite books?

Today has been a blur. I’ve been inconsolable. I’ve been productive. I’ve been in my head. I’ve been confident. I’ve been strong. I’ve been weak. Having a sick child breaks you.

I wish it were me. I wish I was the one with the broken heart, not just metaphorically, but physically. I wish it were me in that hospital bed, and not her. Me having to be put under, not her. Me having to endure the recovery pain, not her. I wish the only thing I was scared of was a locust landing on me while enjoying the outside air while watching the leaves fall from the trees, weightless, dancing in slow motion with the wind, effortless and accepting.

She’s in our room right now, fast asleep. Peaceful. I wish I could freeze this moment. Because I don’t know what comes next, except for the buzzing of hospital equipment, the constant beeps from the machines, the every-hour check-ins from the nurses, that god-awful corner hospital recliner they offer you to sleep on with the scratchy blankets. The cold. The waiting. It’s too fast.

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As our family left our home tonight after visiting Olivia and wishing her well, I had a thought. They left at a reasonable hour, anticipating an early morning to go to work. I thought about the times I had to wake up early to go into an office and work, too. How mindful I had to be about time, and scheduling. I thought about how complex life felt when it was just David and I and we would talk about work and our tasks still pending and how stressed it made us. This life is a whole new level of stress, scheduling, and complexity. And you know what? I would do it all again. Without knowing the outcome of the day after tomorrow, I would do it again. In a heartbeat. Broken, or unbroken. Because when I get out of bed, exhausted and barely keeping my eyes open at 6am, making my daughter’s bottle, watching her eyes light up when she sees me and gives me that turtley smile like she does, the rest of the world doesn’t matter. Everything is simple. It's her. She has always been the goal. She has changed my whole life. And even if it's hard, and it's scary, I want it. All of it, no matter what it comes with. She’s everything.

I can’t wait for this week to be over, for us to be in the clear, for us to breathe a little better, sleep a little longer, and be able to take our life off of pause. I can’t wait to feel weightless.

LEARNING ABOUT OUR BABY'S AVSD DIAGNOSIS

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LEARNING ABOUT OUR BABY'S AVSD DIAGNOSIS

I can still remember how it felt sitting in that cold, hard chair at the doctor's office, the one with the thin, crinkly paper underneath it. My legs were restless, like I was running a thousand miles an hour, yet my body was as stiff as it had ever been. Earth-shattering. I guess that's what that feels like when you get news so awful, your body shuts down and runs away all at once.

That morning, almost eight months ago from when I’m writing this, David and I went to our first high-risk OBGYN appointment. But before I tell you about that, I suppose you’ll need some backstory.

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Our 20-week ultrasound was something that we counted down the days for. We couldn’t wait to see baby Olivia again, who now resembled a real baby rather than a squishy, awkward little alien lizard as she had previously appeared in most ultrasounds prior to this one. Today was supposed to be the day where we made jokes about how short her legs were (like her mama) and how active she was (like her daddy). We were supposed to have a standard 20-week growth appointment, where all of her limbs measure normal, and we get to walk out excited for the next appointment. And some of that happened, but not the way we thought. And even at the time, it didn’t seem like anything was truly off.

“Her femur is measuring a bit small…” said the ultrasound tech, to which I replied, “As in, she’s going to be short? Or is it something of concern?”. That's when we first learned that our baby measured in the 4th percentile. As it was explained to us, anything under the 10th percentile is a cause for concern. “We are also having a hard time photographing her heart” she added, which made perfect sense to us, because our little Olivabean was a jumping bean during the entire ultrasound, tumbling and moving around like crazy. ‘Out of an abundance of caution', we were sent to a high-risk doctor because of that, and even at that point, I still didn’t think too much of it.

A week later, we step into the high-risk OB office. It’s so quiet, and there are Welch’s fruit snacks in a bowl by the front desk. The office has a spiral staircase and the tallest floor-to-ceiling windows. A mini-fridge housed ice cold water bottles, and there was a coffee and tea machine in the back. It was designed to make you feel comfortable, to ease some of the tension of having to sit in the waiting room of an office meant for high-risk pregnancies. But it didn’t, really. And as we sat there, with our masks on per covid protocol and our nervous laughter, it felt more and more empty. Maybe it's because we were the only ones there, or maybe it was because our hearts knew there was bad news headed our way just around the corner and through the door.

We were walked into our appointment room, which was themed Lilo and Stitch. Ohana means family, I thought that was so cute and fitting. We had soft jazz playing in the background, tunes of familiar popular songs. Then the tech came in and she was beyond sweet as pie. She seemed like a fairy. You could see her smile through her eyes, which helped us feel at ease since we couldn't actually see her smile through the mask. She was reassuring. Our tension seemed to subside the more small-talk we had. We chitchatted as she maneuvered the ultrasound wand around, and we made little jokes about how much Olivia was moving around as she was trying to perform the Echocardiogram. I told her how the other OB doctor mentioned her small femur, and she assured me that upon further inspection from the echo, the femur didn’t seem so small in comparison to her body. I was able to breathe a little better now, knowing that the Echo would be able to capture photos of Olivia’s heart even if she did wiggle around a little extra. No arms would get in the way of the technology of the echo, no amount of squirming into a little ball or turning over would block the echo from getting what it needed. I breathed a little easier after that, and let the sounds of familiar pop songs in jazz take over my mind.

The sonographer said she had what she needed, and she would speak to the doctor who would come back in to give us the results. During the wait, David and I celebrated a little victory about the femur size. All of that worrying for nothing! We texted our family letting them know that all looked good, the tech was able to get photos of the heart, and now we’re just waiting for the doctor to confirm before we head out. We made another video update, just as we always did after an appointment, so that our future-selves could watch back and relive. After this appointment, it would be a while before we would record another video update at all. What happened when the doctor came in for the diagnosis lives in my mind only in pieces, much of it a blur.

Atrioventricular Heart Defect. Congenital Heart Defect. AVSD. CHD.

No matter how much you condensed the words, I still couldn’t process it. The world under my chair opened up, and I could feel gravity taking over my body as I felt like I was falling down into a hole. I wanted to rip my mask off, I couldn't breathe. Wait, it wasn't the mask, it was me; I was holding my breath. I grabbed David’s hand to try and stay grounded, but my mind slipped away anyways. I couldn’t hear what the doctor was saying anymore, it all sounded muffled and miles and miles away, like the teacher in Charlie Brown with her “wah wah wahs”. I could feel my face getting hot, the back of my neck start to sweat, and my peripheral vision start to turn black. No, krysti, keep it together, it's important to listen, don't faint now. A heart defect? But how? I cut out coffee, I threw away all of the skincare products and soaps with harmful chemicals, I took my prenatals every single day since day one (and even before that, since we had been trying to conceive for so long). I went down a list of reasons, none of them valid, and none of them the cause. And in between those thoughts, little snippets of the doctor’s voice. “1 in 1000 babies” “high risk of down syndrome” “growth in the 5th percentile” "at this stage, the hole won't close on its own" "cause for concern”.

“Is she viable?” The question left my mouth before I even had time to process. Did I even want to know the answer to that? Of course I did. I absolutely did not. I couldn’t decide. “Yes, she’s viable” he reassured me. I finally took a breath. My brain began to process, slowly climbing out of the dark hole. I could hear him as if he was sitting across from me now, rather than miles away. I could feel the blood circulating through my fingertips again, still holding David's hand. I could hear David’s foot tapping nervously on the tile floor. “What are our options?”

Option 1. “We could do an amniocentesis.” The risk of miscarriage by doing one, though, is 1 in 1000. It would be able to tell us if the heart defect was caused by an underlying genetic issue, like Down Syndrome (a 50% chance in most babies with AVSD), but it would not give us any insight as to a treatment plan. Its sole purpose would be to mentally prepare us for a baby testing positive with Down Syndrome. I knew immediately that this was not the route we wanted to go. 1 in 1000 is what got us here in the first place, and I don’t want to risk those odds again. Regardless of the outcome, she would be loved just the same.

Option 2: “We can discuss terminating the pregnancy, should you want to go that route.” This option sank my heart. Can we talk about the odds of survival? Oh wait, maybe we did and I wasn’t listening... Either way, it's a hard, hard pass. What’s next.

Option 3: “We can set you up with some counseling”. Seems like the only viable option. Let’s do that.

The doctor gave us some time to be alone in the room to take our masks off and gather ourselves to discuss our options and process the news he had just given us. I can’t explain to you what happened after he left the room, not because I don’t want to, but because I don’t even know how to put it into words. The feeling of someone telling you your child has a hole in her heart, will most likely face an open heart surgery very early on, and may have other suspected but undetected issues… I mean. It’s awful. Earth-shattering.

We left that appointment sick to our stomachs. The drive home was a long one. The next few hours were excruciating as we relived the conversation with our families. Each time I expected it to get easier, and each time it was just as hard. Until the end of the night, I was so numb to it, I was finally able to tell the news straight through, no tears.

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The next few days were a blur. David was researching, I was trying to stay off the internet, worried that too much stress could further affect the baby. I spent a lot of my time crying because of the diagnosis, and then crying more because I was worried that my crying would harm the baby. I joined family support groups online and reached out to other moms going through similar heart conditions with their little ones. It helped, but at the same time, it didn’t. I did a decent job at staying off of the internet in the next few days, letting David and my dad handle the research phase of it all. It wasn’t until we learned that the success rate of the open heart surgery was over 90%, the possibility of only needing one surgery was high, and the mortality rate of this specific type of AVSD was the best-case scenario (complete and balanced AVSD), that I was finally able to sleep a little better. In those moments, David and I discovered new sides of ourselves. Not yet officially parents, but we sure did feel the pressure and responsibility to make the right decision. Did we select the right doctor? Did we research surgeons in the area? Did we research nearby hospitals? How about out-of-state hospitals? Did we do what we were supposed to during the pregnancy? Did our covid-case back in December cause this? In those weeks, although our questions and worry increased, so did our support and love for one another. I look back on those days and feel so grateful that we chose each other to be with; your support system matters. I would not have gotten through those nights without my husband.

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These past few months have been a blur in terms of emotions. It’s been difficult to process. Out of 1000 babies, why ours? Why anybody's? So many months praying to start a family, and now facing the fear of losing her, why us? The questions circled in my brain like vultures. We prayed every night for clarity, for peace, for healing. And God delivered. It may have taken me several months to write this, but since then, there is a peace in our hearts that can only be described as God-given. No more panic-worrying, no more uncontrollable tears. Just faith and trust that God will keep his promises.

When we first found out we were having a girl, we decided to name her Olivia Ren. Many people have asked us where her name comes from. Ren means love, but it also means lotus flower in Japanese. The lotus flower has always been my favorite flower because of how it grows. Did you know that it grows as a seedling underwater, underneath mud? It grows in the dark, and as it grows, it comes up towards the sunlight. When it finally surfaces, it blooms a beautiful white flower, pure and delicate. I’ve always thought of the lotus flower as a symbol of strength, that no matter what darkness or hardships you go through, it’s just a way to make you grow as a person, and it doesn’t mean your end result needs to be muddy, or calloused, or rough. You can overcome the dark, and still be delicate. I didn’t know when we picked Ren as her middle name that she would already be going through hardships from within the womb. But I suppose God knew when he placed that name in my heart. Ren. Our little warrior lotus flower.

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We are so beyond grateful for our doctors and their staff who after this first visit, encouraged us and helped us cope with this diagnosis. Many times throughout the pregnancy, my hospital bag was packed and in the trunk of our car in case things took a turn and we needed to deliver her early. In addition to the diagnosis, I had other complications during the pregnancy. Two rounds of steroid shots to help her lungs develop. NIPT tests at every doctor's visit. At one point, we made the 30 to 40-minute drive to the doctor two times a week for almost 2 months. Pregnancy was rough, but worth every hardship, every tear, every early morning and late night. I would do it all again to feel what I feel now. There is nothing in this world as fulfilling as holding your child in your arms. Whether it's the first time or the hundredth time, it feels just as surreal and just as heart-warming. There is nothing like it.

We have a scary road ahead, and it will not be what any of us expected. Having a baby during a pandemic was already unusual, but now there's even more to consider. The risk of RSV can be fatal for any baby, but for her, the odds increase. That means we're Fort Knox over here up until the repair. It's emotionally difficult and challenging, as I know it can seem hurtful to others when we don't attend birthdays, or weddings, or holidays in the same way that we used to. For everyone on the outside, our absence from events may be frustrating, masking at all times may be frustrating, us choosing to not hang out because they were recently at a heavily-populated event may be frustrating. But for us, there is so much more at stake - we could be missing watching her grow up. We could be missing her life. For the months I was pregnant, every day I carried her felt like a gift. I was horrified I'd lose her, and even more terrified once she was finally born and in the NICU that I'd lose her still. Now she is almost 4 months old, and that fear never really goes away. The feeling of being here on borrowed time seeps into my mind when I'm at my worst. To those on the outside, they may never understand that feeling. Keeping her health as our top priority will always be an easy decision: whatever is harmful to her we will keep away, no matter what.

Sometimes, we have this idea of how things should go in our heads, but life doesn't always work out that way. It's so easy to feel absolutely helpless and at a loss of control. It can make you go to some of the darkest places in your mind. I've been there, and I'm just trying to say that no matter how muddy your water is, there's a God who can walk on water, no matter how deep. My faith in God got me through the most draining and consuming moments of this pregnancy. There is a plan, and it isn't mine, and that's okay. I don't need to be in control. I don't need to fix it. My job here is to be a mom. And right now, that means protecting her from what I can, making sure I keep her safe from sickness before her repair is complete, and making sure she is loved beyond measure. God will handle the rest.

The water may look dark now. It will be muddy. There will be times when we'll feel like we can't see the surface. But it's moments like those where the prettiest flowers grow, and I can't wait to see how beautiful Olivia Ren will bloom.

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OUR UNEXPECTED JOURNEY TO BABY GOMEZ

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OUR UNEXPECTED JOURNEY TO BABY GOMEZ

I grew up thinking that whenever that time came to have a baby, it would just happen. In fact, it was almost drilled into our heads from a young age that 5 minutes of pleasure would lead to a lifetime responsibility. Well, that’s not how it happened for us. The journey to our baby was nothing like I expected.

I’ll start off by saying that I know everyone’s story is different, and God’s timing has a way of throwing us off course, especially if you’re a planner like me. David and I have planned almost every detail of our lives since we met: when we would get married, when we’d pay off our small debts, when we’d have a certain number in our savings account, when we’d buy a house, and of course, when we’d want to start a family. If you know us at all, that should have come to no surprise. But what was surprising was the waiting. It took us nearly 2 years to reach this goal…

I know that there are many women out there who have waited even longer, and some who are still waiting, and I think about them often. My heart aches because the pain and sadness I felt every single month when that stick would only show one pink line stayed with me for weeks at a time. It’s probably one of the worst feelings I think I’ve ever felt. Hearing family ask us when we were going to start having kids already, asking why we weren’t pregnant yet, and all the in-betweens. "Don't think about it so much", "Don't stress it!". But how could I not? If you're reading this and you're someone who is trying to start a family too, then you understand that when you want something so badly, it will always be at the top of your mind, all of the time. It was hard, to say the least. My life was consumed by ovulation strips, pregnancy tests, prenatals, blog posts, and reddit forums. While we waited, I tried filling this void with surrounding my free-time with other things, like growing plants, spoiling the dog, and volunteering at church with babies. There were some nights that a plant would die and I’d take it way too personally. Times when no matter what I did, the dog got an ear infection and somehow I felt defeated. Times where I’d be holding someone else’s baby in our church’s daycare room and feeling it suddenly hit me that I still didn’t have my own. Those tears would always come suddenly and were always difficult to hold back. I can distinctly remember one Sunday afternoon, sitting through a service at our church with my husband, and seeing a little girl looking around the room. She made eye contact with David, and waved. I saw him get distracted with her, and wave back, making silly faces to make her laugh. Watching him do that broke my heart. The fear I felt of the possibility of never giving him that gift of being a dad and making silly faces at his own child, it would break me beyond belief. We went to doctors, specialists, submitted bloodwork, changed our diets, and prayed and prayed. And yet, it still felt like an eternity, and it always felt out of our hands.

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One Mother’s Day in 2019, we sat in a restaurant (seems crazy after 2020, right?) and the waiter handed every mother at the table a rose. One of our family members handed her rose to me and said “because one day soon, you’ll be a mom”. I was so excited, and full of so much hope at that time, thinking ‘wow, this may be my last Mother’s Day as a Not-a-Mom…’.

So when Mothers day of 2020 hit, and that line still didn’t turn pink, it hit me like a ton of bricks. It had been quite some time, and nothing was happening. Days feel like months when you’re waiting for a baby. Nothing was blooming. Nothing was growing.

I started writing to get my emotions out. I wrote several letters, all of them addressed to our future baby. I started off by talking about the world, telling our future babe all the changes that have been happening, basically a diary entry addressed to them. And it helped. I wrote how we were praying for them every night, I would tell them about the random shenanigans that David and I would get into on the weekends, and details on the pandemic. I wrote 5 letters in 2020.

The last letter I ever wrote was a bit different. I addressed this one directly to Olivia. And in it, I explained why:

My grandma Yoli used to always tell me that talking to her plants made them grow. Her entire back patio is filled with green, from orchids to pothos, succulents to tricolor stromanthes. For as long as I could remember, she has always had a green thumb. Even in her old age, when I know she is weaker and unable to go outside and water them all like she used to do, they are still beautiful and green and thriving. Whenever I’m out on the patio with her and I watch her water her plants, she talks to them. Not in a crazy way, but they all have names. Some are named after her sons, some of them have silly names. But she greets them, and tells them she’s feeding them today, she talks about the weather with them. And they grow.

So, I addressed the letter to Olivia, giving this baby I was writing to a name of her own, because I knew and trusted that one day, she would grow too.

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I share this with you as a testimony to faith. A few years before we made the decision to start trying to grow our family, I was skyping with my friend and asking her “how could women actively choose to put their bodies through labor, like, by choice? It seems so terrifying. I want a family one day but I can’t imagine ever being mentally ready for child birth”. A few nights later, I had a dream. I won’t go into the details of it, but I knew it was a message specifically for me. Yes, things will be uncomfortable, and painful, and it will hurt. But the joy at the end is far greater than anything in the world. And at the end of the dream, before I woke up, I heard “congratulations, it’s a girl”. I can't explain to you why this dream was different, but somehow I knew that one day, I would have a baby girl. And that’s why I addressed that letter to Olivia. Because despite the waiting, despite the sadness and the loss of hope sometimes, I trusted that one day, it would be her reading those letters I wrote.

If you’re struggling through this stage, I just want to tell you that I’m here for you. I understand you because I am you. I know what that unspeakable sadness is, feeling like you have to keep it to yourself, keep it on the inside. It’s scary, not knowing what plans the future has for us. As I’ve been writing this, I’ve been choking back tears just remembering what a hard time that was for us. Writing letters really helped me get through it. And even if your journey is different, and even if the person you want to one day read them never does, they are a beautiful testament to your dreams and they should be documented. Theres something freeing about writing things down, even if you are the only one who reads them... just as I was the only person in the world who had ever read mine before I finally shared them with David the day we found out we were pregnant.

I will always be grateful that God chose His timing over mine. Because of the waiting, I secured a new job that has allowed me to stay remote full-time (during and even after a pandemic), our income has drastically changed, our savings has increased, I’m more mentally prepared for the changes to come, and we have found our dream location on 2 acres where we will be building our custom-built home this year. Because 2020 is past us now, David is able to come into our ultrasound appointments and see our baby, which was not the case in 2020. If things would have happened on my timing...I can’t even tell you what a mess that would have been. The world would have been upside down, in the middle of a pandemic, on an election year, and with the constant anxiety of 'what if we catch covid, what will happen to the baby'? Thankfully for me, David and I both caught covid at the beginning of December, and finally tested negative less than one month before we found out we were pregnant. Talk about God's timing.

I’m so thankful for a God who loves me and has a plan for me. His timing over ours. Always, always remember that.

I’ll be praying for you ❤️