Matters Of The Heart

I had planned to chronicle Emilia's surgery and recovery on our blog throughout the week, but my laptop decided to turn itself into a brick on Monday, so I only had limited computer capabilities while at the hospital.  Even if belated, I still want to share this particular journey with everyone because I would like those of you who are thinking about adopting to consider heart defects as a special need to which you could be open.  Don't get me wrong, there are very complicated heart defects that require multiple surgeries and the outcome may not always be good, but simple ASDs or VSDs like Emilia's can typically be repaired in one procedure, sometimes through a catheter instead of open heart, and most children's recovery is fast and complete.  They can live healthy, full, and independent lives.

When we received Emilia's referral, we knew that she had a ventricular septal defect, a small hole in her heart.  Once she arrived in the US, we visited one of the nation's top pediatric cardiology departments and they confirmed the defect's existence.  They also noted its location very close to the aortic valve where it was creating a trivial leak.  In other words, the valve could not close completely due to being sucked into the defect.  For two years, this situation was monitored every six months or so until finally the trivial leak had turned into a mild leak.  At that point, the cardiologists told us that they suspected that over time, this leak would increase and eventually cause permanent damage to Emilia's aortic valve and aorta if not repaired.  That's why surgery was scheduled for January 27.

On Monday morning Emilia woke up as always.  Instead of her chocolate almond milk, she had to have apple juice and no food.  She was happy and played for a while just like on a typical morning. She did not know that in just a few hours she would be in surgery.  Craig and I had been instructed to give her a bath with a special soap and brush provided to us by the hospital, so we did.  Afterward, I wrote on her body with a Sharpie: her name, what the surgery was about, a reminder to the surgeon to save her mole, and we love you.

Soon after, it was time to leave for the hospital.  We checked into Same Day Surgery where Emilia had another abbreviated physical, we met with the surgeon and anesthesiologists again, saw the OR nurses, and when everything was ready, she was given a drug called Versed which would make her loopy and not remember what happened next.

Surgery was scheduled for noon, but with the team and Emilia ready we handed her over at the OR door at 11:45 am.  It was one of the hardest things we have ever had to do.  We told her many things in that moment, including that she had to come back to us because life without her would not be life at all.  Once Emilia was in the OR, Craig and I had ourselves a good cry and then we moved into the Family Resource Center, a quiet, comfortable waiting area for families which we had mostly to ourselves all day.  The next six hours were very difficult.  We got periodic updates and had been told to expect her out of the OR at around 4:00 pm, but the surgery dragged on.

Shortly after 5:00 pm, the end was still not in sight, so Craig and my mom left to pick up Rex from school and get him settled in for the night at home.  I continued my vigil until I finally saw the surgeon around 7:00.  He told me the surgery was a success, but that the known leak of Emilia's tricuspid valve was larger than they had expected from the echo, so they decided to decrease this leak as well which had extended the surgery.  At this time, Emilia's VSD is completely closed with no residual VSD, the leak of her aortic valve is stable at mild and may improve, and the leak of her tricuspid valve is trivial and stable.  It is highly unlikely that she will need another surgery.

After speaking with the surgeon, I checked my self into cardiac ICU and waited to see Emilia which finally happened after 8:00 pm.  She was sedated and not expected to wake up until the next day.  Craig joined us for a few hours before returning home to Rex.

I cannot say enough about the care we received in ICU.  There were two nurses assigned only to Emilia at any time and they gently met every need and gladly fulfilled every wish we had.

On Tuesday morning, Emilia's meds were reduced and she began to wake up.  Her breathing tube was removed and oxygen given into her nose instead.  She was very tired and uncomfortable, but doing better than the night before.  She started to drink, but was not ready for food yet.  I had requested the holistic team to see her, so a therapist came and worked on her energy.  I believe without a doubt that their seeing her every day had a huge impact on her remarkable recovery.  PT also stopped by and encouraged us to have Emilia sit up as much as possible.  She received one dose of morphine on Tuesday as well as two different pain killers, staggered at every three hours.  She also was given a diuretic every eight hours to help her kidneys.

Throughout Tuesday, Emilia, Craig, and I were showered with well wishes and gifts.  The balloons were a big hit.  Emilia requested her "nanoons" many times during her days at the hospital.

By Tuesday evening, Emilia was well enough to watch some Baby Einstein on the Kindle.  She had lost many of her wires in the course of the day and was glad to have a little freedom back to her body.

On Wednesday morning, one of Emilia's chest tubes was removed and she was released onto a regular cardiology floor.  She was cleared to start walking there which she was happy to do for a little bit at a time.  Her oxygen had been slowly decreased from two liters an hour to 1/16 of a liter an hour and she was taking only Tylenol for pain.  She was pretty sleepy that day and didn't want to eat and drink much.

 But when her brother showed up for a visit that evening and there were wagon rides, she perked right up.  Both kids were so happy to see each other and couldn't get enough of traveling our floor in the wagon.

On Thursday morning, Emilia's second chest tube was removed and all that was left on her body were the EKG and the oxygen monitor.  She was no longer receiving any oxygen and was staying properly saturated on her own.  The EKG was portable, so she was given a little backpack to carry it while walking around.  We spent much of Thursday day (and later night) roaming the halls with a toy shopping cart.  Per my request, the music therapist visited and made Emilia's morning and seeing Rex again that evening also was fun for her.

Child Life had brought some loaner toys, including this keyboard which quickly became a favorite.

By Friday morning, Emilia's lungs were clear.  She had pooped and eaten a few times and her intake was greater than her output.  Her energy level was high and she and I both were running on very little sleep at that point which was apparently no problem for Emilia, but definitely challenging for me.

I was thrilled when during morning rounds the doctors put in a discharge order for Emilia.  She was ready to go home as soon as possible.  She continues to take the diuretic twice a day and Tylenol as needed which is not very often at all.  We are scheduled for our surgical follow-up next Wednesday and for the cardiology follow-up in three weeks.

It's so hard to believe that this experience is behind us.  I am not going to lie, this was a hard week, but we made it through with flying colors.  Heart defects can seem scary and we did not include them in our initial home study.  However, after learning more, we opened up to them in our first home study update and just four months later were blessed with the referral of our brave, strong, beautiful daughter.

World, you're gonna hear her roar.