Kayla's Story Part 2: Birthday Boy
October 28, 2020. I will never forget this day. Not just because it was the day my sweet Luka Sebastian was born, but also because it was the day he received his first surgery. Luka was born with Obstructed TAPVR which means that the pulmonary veins (his left veins) connected at a confluence where the blood then had to forcefully (hence the obstructed part of the name) push through to go back into the heart to complete the blood circulation cycle.
This was the scariest part of Luka’s diagnosis so far. This is the killer from what we were told. They took Luka off to surgery before we were ready (because who is ready for their hours-old newborn to be rushed to surgery? Honestly we could have had a lifetime with him and it still would have been too soon.) We say our final goodbyes for surgery and my husband and I silently head back to my postpartum room.
Thankfully my first nurse is off duty by now and I have a much better nurse. We spent the rest of the evening pumping milk for Luka and cuddling with his octopi so he would have some sort of reminder that we were always close by. The night was filled with alarms every two hours to get that colostrum going and napping in between pumps with Luka’s stuffies. The octopi surprisingly brought some comfort while we waited for updates on our precious baby.
It’s about 2 am and we finally get the call that all went well and that we can head to the heart tower to see our baby again. Nothing prepares you to see your baby in an ICU fresh out of heart surgery. Especially not an open chest. It’s a heart-wrenching sight but you stay strong for your little one knowing they’re depending on you to be there.
“You can touch anywhere his skin is bare,”
his nurse tells us. I’m relieved she lets us know because even though he’s our baby, there is still a very real fear I might touch the wrong thing and hurt him by accident. We’re reminded time and time again that we’re on Luka’s clock. So we don’t set any expectations. Luka suffered a (very) small stroke while he was in surgery which leads to monitoring for neurology issues. Thankfully nothing ever comes of this and to this day no one mentions it.
It’s the first break we get but it feels so small since he’s still hooked up to all these machines and IV poles. How can my baby be so new yet always go through more than most do in an entire lifetime? Despite all the tubes and wires, I’m still so proud of Luka. It’s a slow, yet steady process of recovery for Luka. Our chaplain visits us at least once a week and every time he asks “how are you feeling?” My answer is always “I’m feeling pretty good, actually. Despite still being in the ICU I feel like our recovery has been pretty uneventful and I feel lucky.”
To be fair, I do remember it to be pretty uneventful but it also took a good while to recover. I think back to when I told everyone I was feeling “just fine” and felt like I was taking it so well. Looking back I wonder if that was my unintentional way to protect myself from all the trauma that was surrounding my husband, myself, and Luka. Especially Luka. Seeing your baby’s heartbeat through a plastic-looking sheet does tend to have its effects. I honestly think I spent much of this time on autopilot. I wasn’t fine. But I had to be for Luka.
Luka’s chest isn’t closed until 5 days after his surgery and he is extubated the day after. After 6 long days, we finally got to hold our baby again and it’s one of the best memories we have to this day. Day in and day out we go to Luka’s ICU room. Watching other babies graduate to CPCU, hoping we’re next. After 1 whole, long month in ICU it’s FINALLY Luka’s time to graduate. Luka finally told us he was ready to go to the step-down unit and we are READY. This is the floor that we’re told we can work on oral feeding and coming home and boy are we excited!
Luka masters oral feeding in no time and we are on cloud 9. Dr’s are talking to us about hopefully being able to come home just in time for Christmas. I get everything set up at home. The basinet, Luka’s clothing drawer, and diapers are ready. The whole 9 yards. Our baby is coming home right at 2 months old and we get to spend CHRISTMAS with him. Everything is perfect. Everything is going according to plan. Until December 21st. Days before we’re supposed to go home. And now we don’t know how much longer it will be because Luka’s O2 is low and we don’t have an answer.
It was a punch in the gut. I put Luka’s things back away in the closet. He’s not coming home. We get a CAT scan of Luka’s heart and we get an answer. But it’s not a good one. Luka’s pulmonary veins are narrowing. He has Pulmonary Vein Stenosis. I didn’t quite comprehend what that meant at the time. I knew it was a setback but I didn’t realize just how scary this truly was and is. Luka goes in for his catheter on December 24th. One day before Christmas. When he comes back out we’re back in the ICU. It’s a disappointment but no big deal. We will be back in the CPCU in no time. Luka is a fighter.
Unfortunately, the night did not go quietly. Luka wasn’t tolerating his feeds and he goes to IV nutrition. Somehow, someway, Luka starts doing better and we are back on track. Looking back I can see that it was the first sign that we were about to be on a rollercoaster. The day after Christmas we get to go back to CPCU and with Luka’s O2 back up we are seemingly back on track to go home. “No more setbacks. We WILL make it.” And for a little while, we were. I set Luka’s stuff up at home again and this time I get to the room in. We are SO CLOSE.
Only 3 days to go and our world is crumbling to pieces again. This is the beginning of what we would call “musical rooms.” We go through a vicious cycle of rooming in the ICU and rooming-in CPCU. It’s not even exciting going to step down unit anymore. It’s just another room.
Will Luka ever be ready to come home?
Is he oxygen-dependent now?
Are there any medications that can help him with his oxygen?
These are all questions running through my head. Going home plan after going home plan and we never make it home. Setting up Luka’s things just to take them right back down is torture. I keep holding onto hope that we will go home soon. One of the hardest parts of this journey is that because of Covid surging the hospital has restricted visitors to only 1 healthy adult at a time. I can’t even lean on my husband for support anymore and he doesn’t get to see Luka much anymore.
Our days are filled with watching our favorite movie “Coco” and playing “Remember Me” as my husband’s and Luka’s song. It’s what gets us through this time. Luka and I get into a routine. Every day I come to his room I pick him up straight out of his bed and we spend the entire day cuddling and watching Coco. Luka sleeps on my chest most of the time and today is no different than any other.
I get a call from SSI and doctors are doing their rounds. Nothing is abnormal. We’re just getting through our day. The cardiologist listens to Luka and picks him up and that’s when my heart drops. He is limp. I’m frozen. I don’t know what to do. Luka wakes back up after his lethargic episode but we’re now rushing back up to ICU. I’m told there that there will be a meeting to decide what to do about the PVS and Luka’s episode. I don’t remember what I was expecting but it sure as hell wasn’t:
“Luka needs another open-heart surgery. He will be going in as soon as we can.”
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!
Also, summer is right around the corner!! If you are having trouble with losing weight before or after a baby please reach out, I have VERY affordable packages for custom meal planning and workouts, it doesn't matter if you have a gym or not!
I'd also like to take this time to remember a very special little boy, Jeremy Jr. Jeremy passed away on April 11, 2022, surrounded by his loved ones. I have been in touch and friends with his mom Livi for quite some time now. I'd check in on her and Jeremy every now and then and follow their story on Facebook. Jeremy finally got his hero heart, was doing great, and even went home. Soon after he became very sick with a virus which ultimately ended him on ECMO. He came off ECMO and was doing great days later but there were more complications. The virus was too much for his new heart and low immune system which in turn led him to code and be down for quite some time. The next 24 hours showed that he had no brain activity and his family ultimately decided on end-of-life care.
Our hearts are COMPLETELY broken! Please PLEASE reach out if you are looking to help this family in any way. I cannot say from experience but I can imagine this will be a very long and hard road for Jeremy's family. Gift cards, donations, and meals would most likely be graciously accepted.
Jeremy Jr., We will NEVER forget you and that bright smile you shined upon so many. You are so loved.
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