Welcome to my blog about my sweet baby boy, Sam! I promise every post will not be this long and have so much material to read, but I wanted my first post to be Sam's heart story. This first post is a full account (pictures included) of exactly what happened with his heart. Details of this have been hard for me to express until I healed a little bit. After a baby's heart surgery, moms and dads have to heal too, just in a different way. :)
Sam was born with a congenital heart defect that was not detected before he was born. His first two weeks of life were lived as a normal healthy infant, just doing normal baby stuff – eating, sleeping, crying, stealing his mom’s heart - you know, the usual. He really was a good, easy baby (and still is!), but we had no idea what was in store for our family exactly two weeks after his birth. This is Sam’s heart story.
On September 24th, 2014 at 11:00am, we headed to Sam's two week checkup with his pediatrician. The appointment was going great. Sam was gaining weight, nursing like a champ, starting to sleep longer at night – all good stuff…and then the exam part of the appointment started.
I was babbling away asking a million baby questions while Sam's doctor was listening to his heart and checking his pulses, which is routine at a two week check up. As Sam's pediatrician felt for his pulse in his hips and feet he turned to me and very calmly informed me that Sam was very sick. I asked, "you mean like a cold sick?" He said no and reiterated that he was very sick and then said "I would like for you to take him to the emergency room when you leave." Mark and I looked at each other with so much confusion communicated silently between us. Sam's doctor then said, "actually, I'm going to go ahead and call the ambulance and let the emergency room know you are coming." I. Was. Stunned.
Sam's heart was failing and his body had entered into cardiogenic shock. The next thing we knew, we were watching the tiniest oxygen mask being put on Sam's face and we were rolling a stretcher through the front doors of the pediatrician's office with our 2 week old baby strapped onto it. I rode in the ambulance with Sam to the children's emergency and Mark followed behind in our car. It all happened so fast - in the blink of an eye.
During the ambulance ride, Sam began to turn blue and I knew we only had moments to save his life. The paramedic got a little jumpy and frantic so I knew things were getting worse. I felt like the drive in the ambulance was taking forever and I was wondering if we were taking the longest possible route to the hospital. I was entering into a state of shock and disbelief and was sitting beside my blue Sam crying and staring off into space with my vision blurring in and out. Honestly, it felt like an out of body experience and everything seemed as if it was happening in slow motion.
We arrived at the ER and I will never forget the scene. We ran down the hall with Sam's stretcher and as soon as we entered the doors to the ER, Sam had a whole team of nurses, doctors, and cardiologist working on him. His room was the very first room you could access and the medical team was definitely prepared, thanks to Sam's awesome pediatrician's alerting phone call!
At this point, I was standing in the middle of the ER in complete shock, hardly able to form sentences, trying to comprehend what was happening and trying to answer the questions being asked of me. Words were not my strong suit at that moment for sure. I felt helpless and scared and still like everything was in slow motion. Mark arrived shortly after and he was in just as much disbelief as me but holding it together better than I could.
It was difficult for the nurses to find Sam's veins for an IV because he was so little, but finally the team of nurses and doctors were able to stabilize him. He ended up with an IV in his head, which totally freaked me out. (Boy did I not realize what was to come!) I am not entirely sure what they did to stabilize him, because I could barely remember my own name during this time. I do know that Sam had a couple of cardiologists discussing an echocardiogram that they did on him and, finally, one of them approached Mark and me and told us that Sam would be admitted to the CVICU (Cardiovascular Intensive Care Unit). I remember we asked how long we would be staying and the answer was a shocking "at least five days." Woah. (Those estimated 'at least five days' turned out to be 18 days.)
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| Head IV |
On that Friday, September 26th, they found the answer after a very long echo. Rather than just having a "pinch" in the aorta, Sam's aorta was severely narrow all over, which caused his heart to have to work extra hard for the two weeks of his life outside of the womb. We were relieved to find out the diagnosis, but in my gut I knew exactly what this meant – open heart surgery.
That afternoon, our cardiologist asked to meet with Mark and me. She explained to us the finding and informed us that Sam would be having surgery that night! It was both relieving and extremely frightening at the same time. Sam's cardiologist called the surgeon and arranged for him to meet with us. The surgeon explained the whole surgical procedure to us and answered all of our questions. He even drew us a diagram with a pen on a tissue. Yes, a flimsy, delicate tissue like you blow your nose into. Now you know if a man can draw a diagram of a heart with a pen on a delicate tissue, he must have skills. He was about to operate on my baby's tiny heart, the size of a walnut. I needed him to have skills!
Even though we had been in the hospital for a couple of days, which felt like an eternity, the news of the surgery happened so fast. I could not believe that my son, only two weeks old, was going to be in open heart surgery in just a few short hours. Thankfully, I knew in my heart that Sam would be in good hands.
That evening, Sam was prepped for surgery and put under anesthesia. It was time to roll his crib to the operating room. As his mother, I felt as if my shoes were made of cement and the walk through various corridors in the back hallways of the hospital seemed never-ending. We arrived at the operating room front desk and a nurse asked if I'd like to hold him. She placed him in my arms. It was so difficult to hold him with the breathing tube in his mouth and all the other tubes and monitors attached to him. At that moment, it hit me that this could be the last time that I ever hold him. After a few minutes and a silent prayer, we placed him back into the crib and the team rolled him down the hall into the operating room. I watched until he and his crib disappeared through the doors to the operating room. This scene is etched into my brain and I will never, ever forget it. I still cannot keep my eyes dry when I think about it.
Mark and I could only wait at
this point. The surgery would take about
4 hours and then we would be able to see him after he came off anesthesia a
little bit. Sam went into surgery at 9pm
and Mark and I waited in one of the family rooms that we were able to have for
the night. At 10pm, my phone rang and my
heart sank into my stomach. It was the
hospital's phone number. I answered,
panicked. It was a nurse from the
operating room telling me that she would be calling me with status updates during
Sam's surgery every hour and that Sam had successfully been placed on the heart
lung machine and everything was looking great. Whewwwww! Seriously, they almost caused a heart attack
with that call! As promised, I got a
call every hour with an update on Sam's surgery, but thankfully without the
same level of shock as the first call. I
still held my breath with each call though.
It was now 1am and I got the
call that Sam’s surgery was a success! His
surgeon was able to widen his aorta and everything went as planned with the
surgery. We were able to see Sam at 2am.
It was hard to see him after the surgery
with even more tubes and wires attached to him and a bandaged incision on his
chest, but boy was it a relief to see him in recovery! (Remember the head IV?
That was nothing now!)
We remained in the CVICU for several more days and we
learned how to hold him with a million tubes and monitors hooked to him. Once Sam’s oxygen levels stabilized enough we
moved to the recovery floor. We were so
happy to be another step closer to taking our sweet baby home.
Up until this point, Sam had
been receiving his nutrition intravenously since he arrived at the hospital. He had not eaten (breastfed) since before his
doctor's appointment when his heart failed. Even though he was getting the nutrition that
he needed through an IV, he still felt hungry and cried to nurse. (Totally
heartbreaking for a mom!) Finally, after
surgery, it was time for him to begin nursing again as part of his recovery
plan. Unfortunately, we learned that his left vocal cord had become paralyzed
due to the intubation and extubation of the breathing tube from the
surgery. The vocal cord paralysis
prevented him from being able to swallow thin liquids, like breast milk,
because it would go into his lungs rather than down his esophagus and into his
stomach. This posed a risk for major
complications, like pneumonia. This was
what was standing between us being able to take him home.
We had a swallow study
performed to test what liquid consistency Sam could tolerate. From this study
it was determined that he had to eat a “honey thick” formula, which is baby
formula thickened with lots of rice cereal to the thickness and consistency of
honey. It was a relief to find a
consistency that Sam could tolerate, but that did not mean that eating would be
easy for Sam. Sam would burn more
calories sucking from the bottle than he would take in, preventing him from
gaining weight, so we had to supplement his bottle feeds with tube feedings of
calorie increased breast milk. This part
of the recovery was tedious and stressful and much longer than we anticipated.
But Sam grew stronger every day and his ability to drink from the bottle improved each day, too. Over these several days, more and more tubes and attachments were removed from Sam because of his steady healing. It was such an awesome day to be able to hold Sam without him attached to any equipment! I could actually walk around the room with him in my arms!
After several days in
recovery, we finally got the green light to go home on October 11 based on
Sam’s consistent weight gain. I was
ecstatic but also very scared to leave the comfort of the incredibly
knowledgeable staff that was caring for Sam. It hit me that I would be “on my own” with Sam
every day, all day, by myself. Talk
about being thrown to the wolves!!! We
did have a nurse that came to our house once every week to weigh Sam to ensure
he was still gaining weight and we had a speech pathologist that also came once
every week to continue to work with Sam on his swallowing.
After working with the speech
pathologist for several weeks and Sam continuing to eat more efficiently every
day, we scheduled another swallow study for November 25th. I was so hopeful that Sam would be able to
move to the next thinner liquid because the “honey thick” formula he was eating
caused lots of tummy discomfort as it was hard for a baby that young to digest.
Sam exceeded my expectations during the
study and was cleared to drink thin liquids, like breast milk, with no
thickening agents! I was so proud of Sam
and how far he had come in really a short time!
As far as Sam’s heart, he
still has two holes in his heart that we are monitoring with his cardiologist. His heart is enlarged due to the amount of
stress it was under, but at his last checkup the inflammation is decreasing. One hole has virtually disappeared and the
other one is shrinking. His aorta looks
great. Sam will be followed by a
cardiologist for the rest of his life and I will never be able to say that he
will never have to have another surgery, but I can be cautiously optimistic and
say "everything is lookin' good."
And here's my shameless plea
to any of you who are thinking of having a baby. PLEASE go into your
ultrasounds prepared to ask questions about your baby's heart development. Early intervention can occur if a problem is
found or suspected. The greatest thing
that I learned from this experience is ADVOCATE for your baby's health. Ask
questions again and again. Don't give up
if you think something is off. Ask for
many opinions and don't ever feel like you are the "crazy annoying
mom" with so many questions. Trust
me, you’re not.
Congenital heart defects
occur in 1 out of every 100 babies.
Hospital Photos:
