Kayla's Story Part 1: My Rainbow Baby
I remember the day I decided on my future son’s name. Luka. What a cute name right? He was named before he was even born. I was waitressing waiting for customers at the front to make my tips for the day when all of a sudden I saw a little boy’s backpack monogrammed with the name “Luca” on it. I couldn’t pass it up. I spent the whole evening after work telling my husband our next baby’s name would be Luka. See, my mind was set on babies.
I had just had a miscarriage that was deeply traumatic and was having a hard time coming to terms with it. I wanted my baby. I NEEDED my baby. It wasn’t fair. Pretending I was okay every single day was torture. Thankfully it didn’t take long to get pregnant and naming my baby “Luka” was becoming a reality. Life was going so well. I couldn’t wait to become a mom of 3. I found out I was pregnant SUPER early. Like at 4 weeks.
Unfortunately, the pandemic was making headlines as it was taking over China. I heard it would be here before we knew it but I tried to put that in the back of my mind. My rainbow baby was all I could think of and I didn’t want ANYTHING to interrupt that. It was already hard enough being super paranoid about anything happening to my little baby growing after a miscarriage. I didn’t need the stress of a pandemic on top of it. Life goes on and so far this pregnancy is going well.
Covid wasn’t letting up but I was overly joyed about my little baby growing inside me that I was trying my best not to pay too much attention to it. That was until I was informed by my OBGYN that my husband wouldn’t be able to attend my first appointment with me… and to make matters worse I was spotting. I was terrified. How was I going to go to my confirmation appointment without my husband?
What if I was miscarrying again?
Was I seriously expected to go alone?
What if the baby stopped growing?
How was I supposed to get through that appointment alone?
I make it to my appointment and thankfully all is well. My little “ardilla’s” (that’s Spanish for girl squirrel. We thought we were having a girl this time around because my symptoms weren’t as bad as with my boys. Spoiler. We were NOT having a girl lmao) anyways… my little ardilla’s heart was beating. So strong. So perfect. So “normal”. I agree to first-trimester screening to make sure all is well. Everything does come back well. Everything is perfect. I made it to 8 weeks.
I can FINALLY stop worrying. That’s the cut off right? Everything is SUPPOSED to be fine after that. Fast forward to my 12-week check-up. Everything is going wonderfully. Still so perfect. No more spotting. Just a normal, happy, healthy pregnancy. And I am glowing. The appointment goes well but we have a little trouble hearing my little ardilla’s heartbeat. The doctor assures me not to panic just yet. Sometimes this happens and breaks out the dinosaur-aged ultrasound. And there’s my sweet little baby.
His heart beating strongly and proudly. As it should be. I leave my appointment so happy. Everything is still perfect. I will have my baby in my arms before I know it. I also found out that my little “ardilla” isn’t an ardilla at all. Surprise to me! He’s a boy! I seriously couldn’t help but laugh and apologize to my 3rd bouncing baby boy. My husband and I still laugh about it to this day.
The next appointment is my anatomy scan and I can’t wait to see little Luka again. Fast forward again to my anatomy scan and this time my husband is allowed to go with me. I was thankful for that at least. Covid changed so many things about pregnancy and prenatal check-ups but I was grateful my husband could at least attend this appointment with me.
I honestly was fine with it. I was having a happy, healthy, normal pregnancy. We go in for my anatomy scan. Our tech confirms we’re having a boy and all seems well until I notice he keeps typing in two letters. “LV”. He must have typed it at least 4 different times. It was enough to catch my attention. My mind immediately starts racing. Something must be wrong. But I push it back. Don’t worry. Everything is fine. Everything has checked out so far. There is literally nothing to worry about.
Our tech finishes up and tells us to go to the lobby to wait for my dr to go over the results with us. I was scheduled for an appointment with her after anyway so that wasn’t unusual. But I had a feeling. A bad feeling. I kept staring at my printouts of my sweet little baby just knowing something had to be off. We finally get called back and my ob-gyn comes in and sits down in front of my husband and me.
“We’re suspecting your baby has a condition called Hypoplastic Left Heart Syndrome.”
I remember those words so clearly to this day. At that point in time, I had no idea what HLHS was and the words were almost meaningless but I knew they couldn’t be good. She goes on to give us information while also trying not to sound too alarming. I’m trying to take it all in but the biggest thing that caught my focus was
“They have made amazing advancements in the medical field. They have surgeries that can help your baby”.
Did my doctor just tell me my baby might need surgery? It doesn’t even dawn on me that she was talking about open-heart surgery. We leave the office and head home not really too sure what to think. It didn’t sound good but she also sounded very reassuring that everything would be fine despite my son’s suspected HLHS. I get a call from the referred Maternal-Fetal Medicine doctor and make my appointment that would tell us what, if anything, was wrong with my baby. I make it to my MFM appointment all by myself (because of Covid) hoping I would leave this appointment being told that my baby was fine. It was just shadows. There was NOTHING wrong. This baby is PERFECT.
This is my Rainbow Baby. The rainbow after the storm. Everyone gets their happy ending after a tragedy. But instead, I’m leaving crying. I was told that not only does my baby have HLHS, but he also has a laundry list of other things. It takes quite a few appointments with the MFM to get the entire diagnosis but it seemingly gets worse each and every time we go. I’m told my son has a horrible prognosis and that we shouldn’t even expect him to live to see his 5th birthday if he even survives birth or the coming weeks.
He will need a series of open-heart surgeries that may or may not save his life. I’m offered termination every time I go until it is illegal in all states. Then I’m offered comfort and/or palliative care. All I knew was there was a chance my baby would be saved. So we chose intervention. My son’s final diagnosis when he was born was: HLHS, TAPVR, DORV, Pulmonary Atresia, and Heterotaxy (Asplenia and midline liver). Looking at them all together again I can say it’s STILL intimidating.
No one should be given a laundry list of what is wrong with their baby. The whole thing was terrifying but the scariest was TAPVR. Even though I joined a multitude of Facebook support groups and made a wonderful online friend during my pregnancy I found myself preparing myself mentally for the loss of my baby. My husband and I decided not to tell anyone except very close family and even closer friends. It was a lonely and isolating pregnancy. Not only because of Covid but because the baby that I was carrying might not even make it.
How was I going to explain to my two older children that their baby brother might pass away? How would I even mentally be able to accept it? As much hope as I tried to have these questions kept creeping up. The pregnancy goes on and before I knew it was time to deliver. We decided to induce at 39 weeks for the safest delivery for Luka. We knew that we wanted to choose intervention despite a poor prognosis. As sacred as we were, we still had hope. We knew our baby would stay at the hospital and have surgery within the week of being born so knowing that we only brought a few blankets, some socks, mittens, and hats. Some pacifiers, my pump, and 3 NICU octopi that I crocheted during my pregnancy. That way he could have a little piece of home with him at all times. Thankfully the induction goes smoothly and we welcome Luka Sebastian into the world on October 28, 2020.
As happy as I was to meet my little Luka I was also so, so scared and sad to know that he had left the safety of my body. The nurses place him in my arms for me to hold my bundle of joy and we soak up every single moment. We adored our perfect little boy for every second we had him to hold onto him and before we knew it he was being whisked away so they could place an IV in his umbilical cord so that he could receive medication to keep his PDA open while he waited for his first open-heart surgery.
My husband goes with our brand new son and I’m wheeled off to postpartum. I get to postpartum and I look around my room. I’ve just given birth but there is no baby. It’s bare. There is no happiness there. No baby to practice breastfeeding with or change his little diaper. He’s not there for me to cuddle. It felt humiliating. I had to be cared for and examined and pushed on with no baby by my side to show for all my hard work. And to make it worse my nurse isn’t very understanding.
All I hear is:
“go pee.”
“Why haven’t you peed? I need you to pee”
I felt like I was just an animal to her. A fucking cow who just gave birth and wasn’t worth a damn thing anymore. Before then all of the staff had been amazing. This woman is berating me for being unable to pee knowing damn well that my baby isn’t here with me. How low do you have to be? My baby isn’t here and you’re worried about my freaking pee?! It was dehumanizing.
Looking back I should have said something but I was too worried about my baby to do anything. Much less care very much about myself or my own problems separate from him. Before I knew it my husband was rushing into my room telling me he needs to wheel me to the Pediatric Heart Unit for an open heart. The surgery that wasn’t supposed to be for another few days at least was about to happen and my heart is racing.
All I can think about now is how I have to get to my baby to see him one last time before he is taken for his surgery. We get there with minutes to spare (it’s a huge hospital) and once again I’m handed my baby to hold and cuddle before he’s taken for open-heart surgery. Tears are rolling down my face uncontrollably as my husband and I say our goodbyes praying it isn’t the last time we get to hold him.
My heart warrior collection is available HERE with Mothers Day around the corner 15% of all merchandise will be donated to my Christmas fundraising for our heart families in the CICU! Can be purchased on this website or my Etsy site!
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