Open Heart Surgery Warrior

The weeks leading to Lilly's surgery were absolutely excruciating.  I was in a very deep state of depression, but I will go into that in another blog post.  In preparation for the surgery, Lilly had a chest x-ray and a sedated echo.  There were also many blood draws, many needles poked and prodded, thousands of tears shed.  It felt like the phone calls from all the RN's and PA's prepping us for the surgery were coming non-stop.

Our family had a moment of relief when we got a call from the hospital almost two weeks after Lilly's diagnosis.  The surgery was scheduled for July 22, almost a month after we found out about the a heart defect.  We found that to be a blessing in disguise, we could just get the surgery over with.  However, the Pediatric Cardiologist had told us that we would have two months to prepare for her surgery...but things all of a sudden went into hyper-drive.

We woke up at 4:00 a.m. Monday morning, the day of surgery.  We had to be at Primary Children's Hospital at 5:45, we had almost an hour drive to Salt Lake City.  We got checked in and started the second half of the pre-op process (first half was done a few days before).  I was anxious to meet and talk to the surgeon.  I simply wanted to put a face to the name of the man that was supposed to repair Lilly's heart.  Justin and I were both groggy and exhausted when the surgeon came in; he had the biggest smile I had ever seen!  He almost looked like he glowed despite the very early hours of the day.

What he said to us was music to my ears.  "Your daughter is a GOLDEN case.  I am anticipating she will ONLY need a patch over her ventricular septum defect [(VSD, whole in the heart)] and maybe some muscle scraped out of one of the heart chambers."  He continued to tell us that he had seen this good of a TOF case maybe one or two other times in his career.  Uh...okay...TALK.  ABOUT.  A.  MIRACLE!!!  Everything the surgeon was saying came as music to my ears and I felt peaceful for the first time in a month.

We waited a few more minutes once the surgeon left our pre-op room and cherished our sleeping baby.  In just a few moments the anesthesiologist was going to come in a take our sweet, perfect girl from our arms and into the operating room.

The time had come, and the anesthesiologist approached us with the same demeanor as the surgeon, happy and confident.  He took Lilly from us, stroked her hand and reassured us that everything would be just fine.  We were then directed to the waiting room and made ourselves comfortable.  We were about to wait for five (or more) very long hours before we could see our daughter again.

Being in the waiting room was a bit brutal, the day seemed to drag on.  We received updates from the OR staff, telling us when the surgery was starting, when our girl was taken off of bypass, etc.  Justin and I both took turns walking around the hospital as we waited.  We spoke to family members on our phones to help keep us distracted.  I kept eyeing the various parents and family members that were also in the waiting rooms.  I was a bit envious to see parents speaking to the surgeons that came to see them, giving them updates and assuring them their child was okay.  Some parents were in after we were and out of the waiting room before we were.  I felt like time was standing still while we were waiting.  Though we did receive updates every so often I was still paranoid that things would go wrong.  I was worried that something bad would happen in the middle of surgery.

After what seemed like forever I felt a moment of extreme peace; I felt the comforting presence of my beloved Grandma who passed away recently.  I also felt the protective and watchful eye of my late Father-in-law.  I felt the strongest impression that there were angels in the operating room, watching over the surgical staff and Lilly during her surgery.

After almost three hours of waiting and we were told the surgery was finished.  Soon enough the surgeon came and talked with us in a private room; he said that the surgery was a success and that Lilly would make a full recovery.  We were absolutely relieved, to say the least.

About an hour later we were escorted to the CICU (Cardiac ICU) to see our baby girl.  I am not one to feel comfortable seeing people with IV's and tubes going in and out of their body, my anxiety was flaring as we were getting closer and closer to seeing our daughter.  We had no idea what to expect in the CICU.  We had no idea what our daughter would look like post heart surgery.  Seeing Lilly intubated with her IV, more tubes than I cared to count, and her incisions covered in bandages sent me into an internal battle.  On top of that she was so swollen from head to toe.  I felt sick to my stomach seeing her like that.  I couldn't hold her for the next while, I couldn't kiss her sweet chubby cheeks, I couldn't do anything for her.

My mom-heart was broken and I wanted to cry.  We felt completely helpless, not being able to comfort our little girl.  I held onto my husband for support, I could tell that he too was struggling.  We also felt peace, knowing that things were heading towards the mend.

The nurses in the CICU were compassionate and kind to us.  They walked us through everything they were doing for Lilly, including administrating her medications.  We were provided with a "timeline" for what to expect during Lilly's hospital stay.  Soon after arriving in the CICU Lilly was ready to be extubated.  The attending physicians were surprised to see her extubated so soon, but it was wonderful news for us.  Eventually, we were able to hold her, not in the way we would have liked.  But at least we got to have her in our arms.  A few hours later Justin left to go home for work the next day and I stayed the night in the CICU.

I woke up in the middle of the night to hearing nurses hustling around and rushing to my daughter.  I feared that something was wrong with her and that we had taken a huge step back with recovery.  Once I got to Lilly's bed, I watched as she was rocking back and forth while shaking at the same time.  I frantically asked the attending nurse what was going on.  She was unsure and called over for another nurse to help.  He came in with a bottle and gave it to Lilly; the poor girl had not eaten in over 24 hours and I'm sure she was starving.

The day after surgery presented nothing but progress made with Lilly's recovery.  She was able to avoid feeding tubes and kept up with bottle feedings.  She was slowly taken off of one or two of the pain medications.  The doctors were surprised at how quick Lilly was recovering, almost second-guessed the monitors and paperwork.  We were then told that we would be out of the CICU that day.  We continued to be ahead of the recovery timeline that the hospital provided.  That afternoon, about 26 hours after the surgery, we were moved to another floor of the hospital where we would stay until Lilly was discharged.

The remainder of the week had some major ups and downs, more of the ups than the downs at least.  Some of the nights were difficult, both Lilly and I were in an unfamiliar place and didn't sleep well.  Lilly had her IV replaced daily, so more poking, prodding, and tears upon tears were shed.  But we had a few good days.  Some of those days consisted of nothing but snuggles and Disney movies playing in our room.  We were blessed to have family and friends come to see us; my mother-in-law came up Tuesday night and sent both Justin and I home to get a good night's sleep.  Towards the end of our week at the hospital, Lilly had another chest x-ray and sedated echo.  The doctors said that the results were where they needed to be, and that Lilly could go home by Friday.

The long-awaited day came and we were anxious to get home.  We did have a minor setback, and were told that Lilly might need to stay a few more days.  She hadn't had enough formula for the hospital to feel comfortable to discharge her.  Luckily we had brought her formula from home and she was eating normal that afternoon.  The doctors saw Lilly's improvement and FINALLY approved the discharge for Friday as originally planned.

During our week at Primary Children's Hospital, we saw nothing but MIRACLES during our entire experience.  We prayed a lot, and relied so much on God and His ability to answer our prayers.  We were certain (and still are certain) that the miracles we witnessed were from those prayers that were offered day and night on behalf of our daughter.  Not only were faith and prayer contributing to our daughter's wonderful recovery, but we know that Lilly was determined to recover.  She was determined to get better.  She was determined to be an Open Heart Surgery Warrior.