Monday, February 2, 2015

Luca's Heart Story

I think anybody who is expecting imagines what the day they bring their baby home will be like. Getting the thumbs up from the doctor that everything is good to go and everyone goes on their merry way. I'd be lying if I said I didn't think about this every single time I go to the hospital where Luca was born and see the people parked in labor and delivery and wonder if they were lucky and able to get to go home the day(s) after their baby is born.

The day following Luca's birth at the Kaiser in Anaheim, the doctor found a heart murmur when she came in to do the physical exam. I can still remember my eyes immediately filled up with tears when she told us that he would need to go tot he NICU for further testing on his blood oxygen saturation levels. When they found that they were lower than normal (normal is between 95-100), an echo cardiogram was done on his heart. We sat nervously in the NICU with Luca all day waiting to hear back on the results. We were told the cardiologist was not there yet and that we would hear back later that day. Finally, we were advised that Luca had Tetralogy of Fallot. We were devastated, not knowing what it meant for our baby. Later, the cardiologist had the echo cardiogram redone due to the first one not being done correctly. We sat there hopeful that what they initially found was wrong, that our baby boy was actually going to fine and could go home. Once we actually met with the cardiologist, he confirmed that Luca did indeed have Tetralogy of Fallot but also with pulmonary atresia. Devastated again, we were not sure what this meant for Luca or for his future, the cardiologist explained the difference between a normal functional heart and what Luca has and then proceeded to explain what this meant as far as next steps. We were told that Luca would need surgery within the next week or so  and would also need a couple more surgeries after that, typically between 6 months to a year and then at an older age depending on how Luca grows.

Later that night, the nurse told us Luca was going to get transferred to Kaiser on Sunset shortly via helicopter. Watching our almost exactly 24 hours old baby boy get loaded into the incubator and whisked away to the helicopter was one of the most emotional moments I have ever been through. I just remember Jason and I holding each other and sobbing in the hallway of the NICU after we watched him get taken away. We debated if we should go to see him that night or if we should wait until the following day to go see him and decided to get some rest and go the following day.

Living in Anaheim, the drive to LA can be easy without traffic, but the 5 is typically not anybody's friend. The days following Luca's birth, we were waking up very early to try to beat traffic to drive to LA, would spend all day in the NICU with Luca, and then would go home to do the same thing the next day. Initially we were told they were not sure when his surgery would be and a couple days in, were told his surgery was scheduled for 07/30. We met with the surgeon, where he explained the procedure and all of the risks. It's already a difficult thing to think about your baby having heart surgery, and then even more difficult when you add on that there is increased risk because he will only be a week old and around 5 lbs. His surgery was scheduled to be done at CHLA (but with a Kaiser surgeon) due to the type of cardiothoracic unit they have dedicated specifically to heart babies. The facility and staff there was amazing and I am so glad that he was able to have his surgery there.

The hardest part about this time for me was when we went home and to think about the fact that I was no longer pregnant, but didn't have our baby at home with us either. We also had the dogs at my parents house during this time, so our house felt very empty. Recovering after giving birth can take some time, but add on having to walk far distances (from the parking structure at Kaiser to the hospital and up and down Sunset to go eat since parking was $15 a day (!!!) at the hospital with no ins/outs) was pretty tough. My feet/ankles didn't swell at all during pregnancy but ended up super swollen in that first week from all the walking. I/we didn't really tell anybody during this time what was going on with Luca because talking about it seemed like it would make the situation more real. I also felt like it would be hard to cope with the questions at the time of what was happening and if he was going to be okay.

We were lucky and got into one of the Ronald McDonald houses close by CHLA the day before Luca's surgery so that we would no longer have to do the drive everyday and could be close by to him while he recovered. His surgery was scheduled for very early in the morning on 07/30. The night before his surgery we sat with him in his room and I stared at him and wondered for the hundredth time that week if we would ever get to take our baby boy home. The following morning we saw him before his surgery and they said that we could walk with him to the operating room, but I really couldn't do it. I couldn't bear to see him get taken away. We waited in a waiting room on the same floor to hear from the nurses on how it was going. I had never been so scared for anything in my life. We finally heard that the surgery had went well and that he would be put in a room shortly and we could go see him. After hearing the news, the tear floodgates opened for me, just hearing the confirmation that he had made it through the surgery. Just thinking about this moment still brings tears to my eyes today. Seeing him for the first time was a little bit shocking, he was intubated, had a chest tube, an arterial line, an IV, and a PICC line (and I was complaining about having to have just an IV in the days prior to going into labor!). He was originally supposed to only have a BT shunt but due to the way his blood oxygen saturation level changed, he also had a portion of the second surgery done. The days that followed were a blur while we watched Luca recover from surgery. Sitting in his room all day and watching his monitors and stats go up and down was somewhat nerve wracking in the beginning, but we slowly got used to it. It felt good to watch that every couple of days they slowly took away one his tubes and/or lines and know that he could possibly go home soon.

Once Luca was transferred out of the CTICU and to the step down unit, we were able to stay with him 24 hours a day. We lived out of his room during this time and were able to participate more in his care for giving him baths and starting on mouth feeds. (Previously, he had only been fed either through his IV or NG tube through the nose).  They told us that the mouth feeds were typically the part that is the most difficult and that babies can have a hard time due to the amount of energy it takes to feed.

Our sweet boy the night before surgery

The days following his surgery, we chose not to take pictures when he had all of his tubes and wires around. I know you might be thinking he still has tubes/wires in the pictures below but it's nothing compared to what he had coming out of surgery!

The overall experience of this was/is definitely the most emotional thing I have ever been through, I'm definitely not looking forward to his second surgery that will be coming up in the coming months and know that because he will be so much bigger and more aware that I will need to be way stronger than I was for the first one. Yes, he will need more surgeries and yes, he does require more care than your average baby but even after all that we have been through, I know that we can still consider ourselves to be one of the lucky ones because.... he is here. Although underweight at this point, he is here and is still hitting many of his milestones...rolling, smiling, and laughing.

February is American heart month.

Becoming more aware by being a part of different heart parent groups is actually what helped me realize that Luca will be okay, I had never heard of anyone with a heart defect previously and honestly wasn't even sure what to expect once we were able to bring him home before starting to hear about other parents' experiences with their own babies with the same defect (who would have thought that hashtags, specifically #tetralogyoffallot, could be so helpful). Babies are not always tested prior to leaving the hospital and some CHDs can go undetected for weeks or months and some parents/babies are not as lucky as we have been and they are found too late. California passed a law in 2012 for hospitals to start implementing the pulse oximetry testing prior to babies leaving the hospital in starting July 1, 2013 but 100% participation by hospitals is not required until December 31, 2016 and not every state has this type of law in place. While the exact cause of congenital heart defects is unknown, spreading awareness of the most common type of birth defect (1 out of every 125)  can help new parents become more aware of the birth defect and to request for the testing prior to leaving the hospital to decrease the risk of babies being sent home with CHDs undetected.

I know my Mom will read this so I'd also like to acknowledge that I would not have been able to make it through the past couple of months without her. She has helped us in so many ways and to say that I am thankful for both her and my Dad does not even begin to describe the way I feel. If having a heart baby is stressful, having a heart baby that also will not eat (literally refuses) is ten times as stressful. Grandma seems to have the magic eating touch with Luca. 

Moments after Luca was born, my Mom asked the nurses why his hands and feet looked bluish and they somewhat waved her off and told her he just needed time to warm up when that should have actually have been a sign to them that something was wrong. My Mom always used to tell me that Mom is always right and I've learned throughout the years (after much denial in my teenage years) that she is right.