My Baby Heart Surgery Story

Hi babes,

Warning, it’s about to get real here.  Like babies, baby heart surgery real. Before you start panicking though, be assured that this story has a happy ending.  For something on the lighter side, please check out Lucas’ super cute Baby Sounds videos!

It’s been 7 months since Lucas came into this world and this has been the hardest 7 months of my life for me, Lucas, and my entire family.  His tiny pint sized body has been through more scars, stabs and tears than anyone I know.  Meanwhile, I’ve kept this as a secret from my “Instagram world’ and even to many of my friends.  Only a few random friends and my parents knew what we were going through, but only the parents knew all the details.  This was too much to share because I was faced with so much uncertainty about my baby’s future, I was never sure what new diagnoses or nightmares would be around the next corner.   There was little space in my mind for fashion, makeup, travel… it felt like our lives were on the ‘pause’ button.

Let me start from the beginning.

When I found out I was pregnant, I was ecstatic.  I had settled into a good career, was planning to buy my first house and had been planning for a few months to have a baby.  My facebook feed was already full of cute chubby little faces and feet.  I couldn’t wait to be a hot mommy!  I said goodbye to sangria and wine, stepped up my healthy diet, exercised when I could and slowly awaited my bun to grow.  The only signs of trouble was a blood test that showed that I had higher than normal of this hormone, followed up by more tests, which confirmed that everything should be normal.  Should.

Lucas had a normal birth as well.  It was painful but the epidural did its job.  He came out at approx. 3.5 kg and immediately let out cute little “ha ha, ha ha, he he” cries.  He had a cute bump on his head from a suction device that helped pull him out during delivery.  He was jaundiced and had a bit of a heart murmur (a small hole in the heart), but some doctors assured us that jaundice was common and heart murmurs usually heal themselves.  We were so happy go lucky, I was with my husband and thought, “yay! Now I’m a mom!”.  What could go wrong?

 

There were two issues with Lucas.

One was his slow weight gain (caused by his liver, which was causing long term Jaundice, a yellowing of his skin and stunting his weight gain), but the other was his difficulty in breathing (caused by his heart, which had 2 “medium to small” sized holes called ASD & VSD).  As first time parents, we had no idea how severe his problems could become.  The doctors kept assuring us that both jaundice and heart holes were common and usually healed over time.  Perhaps we couldn’t believe what was happening or perhaps we were naive, but we really thought our baby boy would be okay.

There was not much we could do but book followup appointments with liver and heart specialists.  After being held in the hospital for 7 days, we were exhausted and eventually sent home.  Little did we know, that this was the easy part.

Blood Tests, Biliatry Atresia, and Liver Biopsy

For the next few months, Lucas was sent for ultrasounds for his liver and heart.  And bloody blood tests, so many blood tests.  When the doctors ruled out potential common causes, they looked for rare causes.  Words like ‘permanent’, ‘cancer’, ‘survival’ and ‘terminal’ slipped into the conversation.  We were looking into diseases and conditions that were 1 in millions.  When we thought the blood tests were enough, we were then sent for a ‘nuclear imaging test’.  When we thought that was the worst of it, Lucas had a needle extract a piece of his liver into a test tube.  The liver extraction was to test for a condition called Biliary Atresia; a horrible thing I would never want any family to go through.  Having Biliary Atresia basically means immediate surgery.  If the surgery goes well, the patient will still likely need a liver transplant in the future.  Survival rate for Biliary Atresia into “adulthood” is good, but the patient will be followed with liver complications and health issues for the rest of his/her life.

I will never forget how the hours turned into eternity as we awaited for Lucas’s liver biopsy results.  My husband and I prayed as we waited in a random hospital room beside an empty baby hospital crib.  Busy nurses and hospital monitor beeps surrounded us.  We are not very religious, yet we still prayed.  We prayed to God and we promised that if Lucas didn’t have Biliary Atresia, we will do everything and anything for him to have a good life.  We asked the doctors what might happen and all they could say were reassuring things but never anything concrete.  My stomach felt like a vacuum and my heart was pounding in my chest.

Waiting, waiting, waiting.

Then finally, a junior doctor popped in and told us that he “looks good”, he doesn’t think Lucas has Biliary Atresia!  For that moment, we were soooooooooooooo relieved!  Our little buddy all star was wheeled in and we were finally able to put him into the hospital crib.  So he didn’t have this horrible condition, but what now?  What was causing his liver to be bloated and not functioning as it should?  He still had severe jaundice and stunted weight gain.  He was literally “falling off the charts” in terms of weight.  This was the first “high” point in our emotional rollercoaster which was of course followed with a crash down to reality.

We spent the next couple months with more exotic liver tests that amounted to nothing.  Grandparents were panicking.  Everyone was stressed.  Lucas seemed happy, just difficult to put to sleep (we now know that his heart was working so hard that he could never drink a full tummy).  Here comes the next bump.

It was breaking our hearts too.

While all the doctors’ minds were on his liver, we never had time to think about his heart.  The heart doctors told us that his heart condition looked “okay” and many babies heal their heart holes at 6 months.  Then one unforgettable morning, after Lucas had been drinking a lot of milk the night before, he suddenly stopped drinking.  He would try to take a bit of milk but then he would just cry and go to sleep.  He stopped drinking for nearly 6 hours and we so decided to take him to the hospital.  This hospital routine was something we were getting used to, no biggie.  Me and my husband calmly watched as multiple doctors and nurses raced and rushed around Lucas, taking in his breathing rate, heart beats and of course, more blood.  They thanked us for being so calm.  Coincidentally, I had been watching Grey’s Anatomy, and though I totally understood what was going on.  In the centre of the chaos was a crying baby Lucas, he screamed loud enough to drown out the hospital.

His blood oxygen level suddenly plunged 50%, he had to have a oxygen mask, the staff had to call for a kids-only major hospital.  An ambulance was ushered and rushed him to the kids hospital, where we were told he officially had “heart failure” (defined as a sudden dangerous drop in blood oxygen levels).

We got to the kids hospital at around 2:00am.  There were the same questions, the same tests, additional tests and x-rays done to Lucas.  He still had barely anything to drink, but he would go on to have 2 more heart failures as we tried to feed him.  Finally, a doctor came to us with some new information.  Lucas has too much liquids in his lungs.  He thinks that his heart holes were leaking fluids into his lungs.  The treatment for this is a medicine called Lasix, which basically forces him to pee so often that his body fluid level is manageable.

We were stuck in-between a terrible situation where A: Lucas must eat more to gain weight, despite his liver not allowing him to break down nutrients.  B: Lucas must not eat too much or else his lungs will fill up with fluids.  It was too much to ask for a poor tiny baby.  It was getting too much for us.  We thought we were the luckiest parents in the world when we found out he did not have Biliary Atresia, and yet this new stress was making us fall apart.  Forget Instagram, I barely could keep up with my own life.  It was hell.

So What Now?

We tried to stay positive and did whatever normal parents stuff we could.  You know, the annoying antics you see people do on Facebook.  We made buddy Lucas smile, a lot.  He was a happy baby, he loved to swim and to be held.  The grand parents were living with us for the duration, which sometimes caused some tensions but ultimately I realized that we could not survive without their help.  We took photos, but were afraid to post too many.  We had a stroller but was afraid to take him outside.  A baby with those conditions certainly shouldn’t be outside to catch a cold.  We just didn’t know what could happen to our buddy boy.

Lucas was now on more and more Lasix to keep his lung fluids at bay.  We were seeing doctors weekly and monitored his weight gain at home.  There is a chart to let you know how your baby is doing in terms of weight gain.  We stopped looking at that chart as he had fallen way off the lowest curve.

The liver doctors eventually talked to the heart doctors.  We got to know many kinds of doctors and with each test and visit, it was becoming apparent that Lucas can not continue like this.  There was only one thing we were sure of that was physically wrong with Lucas; he had a VSD and ASD (holes in his heart).  For some holes, surgery would be simple and non-invasive, but Lucas’ holes were located in especially difficult parts of the heart, the parts where surgeons would have to stop his heart and open his chest.

And so we began to talk about open heart surgery.  We were told that Lucas should gain more weight in order to safely have a surgery to fix his heart.  However, Lucas was not gaining weight due to his liver!  We pushed for surgery, despite knowing the risks.  They tried to convince us to sign waivers of risks to allow the surgery, they didn’t have to convince us very hard, we signed right away.  The “risks” were roughly 3%, but that 3% includes anything from infection to death.  It was our only option.  At least he would have a healthy heart and we can figure out his liver later.

And that’s how Lucas had Baby Heart Surgery

On February 13, right before Valentines day, surgeons cut a 5 inch gap in his tiny chest, stopped his lungs and heart from beating, and worked endlessly to patch up the holes in his heart.   The whole operation took about 4 hours and the lead surgeon took us to a private room to tell us how the surgery went.  It felt like the Biliary Atresia episode again, only this time we were desensitized to it all.  Bad news or good news, we would fight through it.  Finally, after we have all sat down, the surgeon told us that the operation went well.  His holes looked worse than what the ultrasound was showing, and it was a good thing he finally had the surgery!

It was another high in our roller coaster!  What would follow in the next few weeks would be some good news and some bad news.  Some nasty surprises and some good surprises.  However, my mommy hands are tired and just writing this post makes me sad.  I will stop right here and if you want, here is a video of Lucas’ recovery since the surgery! :)

Thanks for reading.  And I hope you and your family do not have to go through anything like this.  If you have any private questions, please feel free to email me at MangoRabbitRabbit@gmail.com.

LOVE,

Kerina