May 2, 202211 min read

Kayla's Story Finale: A Dream Come True

July 1st, 2021. 8 months and 4 days old. 246 days we waited to bring our bundle of joy home. The night goes without a problem and we make it to morning. We make it through the car seat test and all the doctors agree that Luka looks great. I’m so excited but I’m also kind of freaking out on the inside. The realization that there won’t be a nurse to watch him 24/7 sets in and a twinge of fear and guilt sets in. Am I being selfish? Is this what’s really best for Luka? I remind myself I have been taking care of Luka this entire time (minus drawing up meds) and I know his baseline. I know my baby. I CAN do this.

It feels like an eternity but at approximately 4 pm we are at the front of the hospital waiting for the valet to bring our car so we can go home for the first time together as a FAMILY. It’s unreal. Luka is looking around and curious. He’s never had to be strapped into a car seat beside his car seat test early in the morning. I wonder what he’s thinking? Is he excited? Confused?

Our car pulls up beside us and we’re throwing our house full of baby essentials in the car. We have to play Tetris a little but it all fits, barely. I’m ecstatic. The smiles are all over our faces and we can’t take them off. It feels so surreal. Seeing Luka in HIS car seat in OUR car on the way HOME. It was unlike anything else. I had wondered if this day would ever come and it was finally happening.

I could go on and on about how it felt. Trust me when I say, it was one of the happiest days of my life. I know that is so cliche, but seriously. It’s unexplainable. Bringing the baby home that you thought might never get to? The relief and just utter excitement isn’t something I could ever put into words. We make it home and Luka’s big brothers see and hold him for the second time. The start of many more cuddles to come.

The first couple of days are overwhelming (in a good way) but there is a learning curve. I had at least 15 alarms on my phone to keep up with Luka’s demanding schedule. It’s worth it though. Day 3 of being home and Luka’s oxygen level on his pulse ox is reading low. Our first scare. I rush him to the nearest Texas Children’s ER. His oxygen picks back up in the ER but his sodium level is a little low and we’re admitted downtown.

“I feel guilty. I must have messed something up. He wasn’t ready. What was I thinking?!”

I can’t help but feel all of these thoughts. Luka and I spend the night in the ICU and thankfully it was a very easy night. The doctor comes in for rounds on Luka and explains that he looks so good and that he probably just needed a med adjustment. She assures me I’m doing a great job and gives us a green light to go back home the very next day.

We go home and this time there are no more scares. It still takes a while to adjust but overall we’re doing great. We make up for all the lost family cuddles by spending our days relaxing on the couch with big brothers when we’re not at the hospital for one of our many outpatient check-ups. Luka needs a heart catheter a couple of weeks after coming home but that’s okay. We knew he would need catheters to check on his PVS and to check for pre-Glenn pressures.

His first outpatient cath goes well and the doctor is confident we will get to a good place for the Glenn procedure but unfortunately, we’re still not quite there. I’m a little let down but I am so incredibly relieved that the conversation my husband and I had with the doctors while inpatient doesn’t seem to be what will happen to Luka anymore.

Luka’s doctor recommends a medication called sirolimus to help keep his veins open and is hopeful Luka can be Glenn ready soon. Thankfully our days have become boring. Every day is the same. Boring and uneventful. Just the way I like it with Luka. I know that seems like a weird thing to say, but to me, it means that we had a great day. That all of Luka’s health is under control and all those worries of how short our time with him might be can be pushed to the back of my mind. We can just be a family. A “normal” family.

Luka gets to his second heart cath and he still isn’t quite ready. Another letdown. But nothing grave. There is still hope. The third time’s the charm and Luka is finally ready. There is so much relief but also a tinge of fear that the surgery WILL happen now. Luka is a high-risk Glenn because of his oxygen issues from his PVS and there is a very real fear that he might not do so well, despite how far he has come. I push it back though. I can’t think that way. I believe Luka will do so well. I have to believe that for him.

We set a surgery date for early January and meet with Luka’s surgical team for a consultation. They explain to us that Luka will have what’s called a “Bidirectional Glenn”. It’s considered controversial but his team truly believes it is what is best for Luka considering his specific history. It's scary agreeing to this but we trust his team. We know Luka is in good hands and we are hopeful that surgery will go smoothly. All we have to do is make it a few more weeks and Luka will finally receive his Glenn.

Spoiler... Luka won’t get his Glenn. Not yet at least. Plans are interrupted when we have our first emergency and Luka isn’t doing well. He had been throwing up a little but nothing too severe. Nothing that couldn’t be watched and kept under control at home. That is until he turns blue and is shaking. My heart sinks and I’m throwing all his meds in the stroller running out the door to take Luka straight to the med center.

There isn’t a single question in my mind. Luka NEEDS to get downtown to the heart center ASAP. I’m on the phone with cardiology not to ask if we should go to the ER, but to tell them we would be there. Honestly, the whole thing is a blur now but it was one of the most terrifying experiences Luka and I have ever had. We are rushed into trauma and there are doctors and nurses everywhere. Luka is burning up by now. He has a fever of 106. He’s blue. He’s shaking.

I don’t know what to do except try to keep him calm while nurses put oxygen on him. He’s flailing around and I’m trying to hold him still and calm him. Luka looked so scared and I couldn't contain my tears. They’re rolling down my face while I’m holding him to keep him still. But I can’t cry. Not right now. Luka needs me. I somehow composed myself and we eventually got Luka stable. It takes BiPAP and LOTS of fluids.

We’re wheeled off to ICU and this is the start of a two-week recovery from the Flu. If anyone needs to know why you don’t go out while sick... this. This is why. We got lucky. Very lucky. After a terrifying two weeks, we are back on our way home. Which only lasts three days. This time Luka has to be admitted for vomiting and diarrhea. The stomach virus. You have got to be kidding. Thankfully it’s only a couple of days' stay and we are on the way back home. We’re sent on our way with hopeful and cheerful words from nurses

“Bye Luka! Don’t come back until your cath now!”

Oh, TRUST me. That’s the plan. Unfortunately, this will be an ongoing problem for Luka. In and out of the hospital due to stomach viruses. The worst part is it just comes out of nowhere. No one else in the house even has to be sick and bam. Stomach virus and hospitalization. My poor baby. Will this ever end? Will we ever make it to have the Glenn?

Doctors are getting increasingly worried that the Glenn procedure may be turned into an emergency surgery which is the LAST thing ANYONE wants. I honestly couldn’t even tell you how many times we rescheduled the Glenn that’s how much Luka got sick. Not to mention an unexpected exposure to Covid which delayed surgery yet again. Thankfully Luka didn’t catch Covid but he did catch another stomach virus shortly after. During his last stomach virus, his team decides it may be best to just keep him, inpatient, to reduce the risk of further viruses and repeat his heart cath since it had been a good while since Luka had one at this point. I’m a bit nervous about his pressures now.

They were in a good place but that was about two months ago now. What if they weren’t where they needed to be? It feels like I’m holding my breath the entire day waiting for them to complete the procedure and go over what they saw. The news is good and we are still on track for Luka’s Glenn about a week from this point. Relief. The week is going smoothly and we fall back into our old inpatient schedule. It’s okay though because Luka will get his surgery and he will be back home in no time. (I hope.)

There's a feeling of uncertainty I can’t shake and I keep trying to push it to the back of my mind. It’s okay. Luka will be okay. This surgery is going to be a breeze. 1 day to go. Consents are signed. All we have to do now is make it through the night with no fevers and Luka will finally get the long-awaited Glenn. But of course, this wouldn’t be Luka’s story if there wasn’t yet ANOTHER hurdle to leap over.

“Luka has tested positive for Covid. The good news is he’s asymptomatic but we can’t continue with surgery and we can’t keep him at the hospital any longer since he is stable. We have no other choice but to send you home. Thankfully we only have to wait 14 days because of his lack of symptoms as long as he doesn’t show symptoms in that time.”

My heart sinks and I’m thinking my eyes are probably the widest they have ever been. Are. You. Freaking. Kidding. Me???!!!!! Is this surgery ever going to happen??! I’m legitimately worried this is going to turn into an emergency open-heart at this point and so is Luka’s team. This is impossible. We’ve already cut contact with everyone outside of our immediate family. What else do we need to do?! Go underground?!

We make the walk of shame to our car and get home but no one is happy. This is not a celebration. It’s defeat. During the 14 days, my eyes are glued to Luka. No one is getting symptoms of ANYTHING in this house. Not under my watch. It feels like a lifetime but we get through it and head to the hospital on February 28th for intake day.

I’m holding my breath. I’m too nervous to say this is it. I don’t want to jinx it. Luka is admitted to CPCU so he can be surgery ready bright and early in the morning and Luka, myself and my husband spend our last night together with Luka before the Glenn. We’re up way too early but that’s okay. That’s just extra time to spend with Luka before the big day. The morning is filled with cuddles and laughter. Then it’s time to walk to the 20th floor where Luka will be taken for surgery. This part goes pretty quickly. Just a few questions since consents were already signed a couple of weeks to go.

The anesthesia team assures my husband and me that Luka will be given medication to help him relax and that he won’t remember anything. I’m relieved but the way Luka reacts draws a reaction I didn’t expect. He’s loopy and out of it. I’m grateful he doesn’t know what is about to happen and isn’t scared but it’s also hard to see him so out of it. It’s better than the alternative though, and I’m grateful to see his little smile before he comes back from his Glenn. I’m hopeful but I’m also terrified it’s the last time I will see his sweet little smile... Surgery is quick. It only takes 5 hours and Luka’s operation is complete.

“Surgery went as well as anyone could have hoped. He did fantastically.”

I’m so relieved. I can’t believe it. So many of my fears are put to rest by just those two sentences. We’re finally making our way to Luka’s recovery room in ICU and all of a sudden my heart is pounding and I feel sick. I forgot to ask if he is an open or closed chest. Not knowing what to expect to see is scary. I didn’t like it. I’m unconsciously holding my breath as we step into Luka’s room. Luka has a closed chest. And he is pink. SO PINK. I have never seen him look so good after surgery and there go some more fears. So much relief. Everyone is talking about how wonderful Luka did and how amazing he looks. Luka IS okay. I don’t have any expectations for him but I know he will recover and we WILL be home again. I just know it.

March 2nd is extubation day. I swear Luka must have heard though because he tried to extubate himself. It’s a scary little bump but he’s sedated again and is right off back to sleep to recover from all the excitement and wait for official extubation. It feels so quick. Luka has never been extubated the day after surgery. Is it too soon? No. The team wouldn’t do this if they thought so. Before we know it, it’s time, and the team circles around Luka for his extubation while my husband and I are watching at the end of his bed.

“Mama... mama”

It’s the most beautiful sound. Like hearing him cry for the first time after delivery again. I’m crying, but it’s a cry of happiness. A cry of relief. The first thing Luka noticed was us. Being there for him and being the first thing he sees and says. It’s unlike any other feeling. This can’t be real. This is going so smoothly. So much better than anyone had ever hoped. “Luka you are rocking it. You will be out of here in no time. My strong little man.”

Every day is a party it seems. I sit back and watch the lines just drop right off. Luka is a champion. He is a fighter. He is recovering at lightning speed. All the waiting and worrying and it’s finally here. It’s so much to wrap my mind around. Is this even real? 5 days after open-heart surgery and Luka is in CPCU. The fastest he has ever recovered. And from there we only spend the weekend in CPCU. Exactly 1 week to the day we hear:

“How do you guys feel about going home?”

I can’t believe it. Are we sure this is real life? Is this finally Luka’s big break?

“We would love nothing more than to go home if you feel Luka is ready.”

We go home victorious.

Thinking back on it all, I am still so shocked at how well Luka did. Everyone was. All those fears and worries were nothing more than just that. We are so lucky. I will forever be grateful to Luka’s team for giving him life. For taking care of Luka in ways that my husband and I could never have done for him. If it wasn’t for them Luka wouldn’t be here today. There is not a doubt in my mind about that. All of the sorrow and the pain is starting to become a memory the further and further we get from the Glenn. Luka has been stable since March with no scares and it would be an understatement to say that I am grateful.

No day is ever guaranteed with Luka but I am forever grateful for Luka’s good health at the moment and I hope every day that it stays that way. It’s been a hard road and we still have heart catheters and the looming fear that is his heart but I can say that we have reached a time where it’s not so prominent. Where we can finally just enjoy Luka as our baby. We feel safer experiencing things with him. Things like the zoo and even an indoor play center once. Luka can finally be a baby. And we can finally be at peace knowing he is doing so well. And that is all I could ever ask for.

As a heart mom, our job is never done and our worries will never truly cease. But I am slowly learning that even though nothing can ever be promised we should always look back to see how far our babies, and even ourselves, have come. I will never forget Luka’s team and what they have done for him and our family. Our dreams have truly come true and I hope that one day every family of a heart warrior can have their dreams come true as well.