Miracles and Milestones

Waiting

Waiting

Abby’s surgery to repair her Tetralogy of Fallot took place at Primary Children’s Medical Center.  Abby was five-months-old when she underwent her repair.  We were asked to arrive at 7:00 AM to fill out the necessary paperwork and do all the pre-op.  Abby was given some Versed, a drug to calm and partially sedate.  She slept much of the time while we were waiting.  We met with the anesthesiologist, at which point I became emotional.  He explained to us the dangers associated with anesthesia including death, brain damage, strokes, seizures and more.  I tried not to cry in front of him.  I tried to be calm and brave but the emotions of the day overtook me and I cried.  He was kind and patient and understanding.  Next we met with Abby’s Pediatric cardiothoracic surgeon, Dr. Gregory Dirusso.  He was young, very young with what we had envisioned.  He explained Abby’s surgery to us and answered any questions.  He told us he expected the surgery to last four hours.  Dr. DiRusso was extremely patient.  He had the most gentle and compassionate bedside manner since anyone I had met since our dive into CHD began.  He was reassuring and positive which is exactly what I needed.  I had obviously prepared for the worse, how can you not?  But, I wanted a surgeon who was confident in a positive outcome and made me feel that the worst would never come.  That is exactly what Dr. DiRusso did.  I will always hold a special place in my heart for him.  I don’t think words could ever express the gratitude we hold for him.  After all this….

Weight and Length

Weight and Length

It was time for surgery.  We walked down a long white hospital hall.  It had bright colored butterflies painted on the ceiling tiles but Abby was not laying on her back looking at them.  I was carrying her in my arms.  When we got to the end of the hall to some metal doors, it was time to hand her over to the anesthesiologist.  He gently took her from me and waited patiently as we kissed her, as my parents kissed her.  She looked over the anesthesiologist’s shoulder as he turned to carry her through the doors.  Her big blue eyes were questioning but calm and had that cute Abby sparkle to them.  The doors closed and I took a deep breath, turned around to walk to the waiting room and wait.  I brought cards, books, games….why I thought I would be able to concentrate on any of them was beyond me.  My spirits were up however.  I watched other families come and go and I watched the clock.  Around two hours into our wait the nurse called from the OR to tell us Abby was under and was on the bypass machine and everything was going smoothly.  Around four hours into surgery I anxiously awaited news.  Calls came into the waiting room frequently but none for us.  By five hours in I felt that something was wrong.  Around 5 1/2 hours into surgery our cardiologist stopped by to see how things were progressing.  He happened to be there when the nurse called from the OR.  She explained that the repair went smoothly.  However, after taking Abby off the bypass machine, the blood pressure in the right side of her heart was dangerously high.  They knew it was caused by the pulmonary stenosis which hadn’t looked very bad from the Echochardograph.  Once inside they realized the stenosis was severe.  Because of this they had to stop Abby’s heart a second time, putting her back on the bypass machine to try and relieve the pressure and fix the stenosis.  I hung up the phone and explained to everyone waiting with us.  Our cardiologist warned us that children who have to undergo the bypass machine two times usually have a hard time recovering.  His warning unnerved me.  I asked, “Do you mean their recovery is slow or they don’t recover?”  He told me, “Both.”  The news was hard to digest.  I began a silent prayer for Abby and her doctors in my heart, hoping things would be fixed and we would see her soon.  Around 6 1/2 hours into surgery a nurse came into the room looking for us.  She told us that Abby’s blood pressure was still too high when they re-started her heart and her heart had to be stopped again and she had to go on the bypass machine a third time in an attempt to fix the problem.  She told us she would keep us updated and left.  The discouragement and gloom that settled in the room and in my heart was suffocating.  I began crying.  This wasn’t what we were told would happen.  We had talked to some friends who had the same surgery and Abby’s doctor all told us that the surgery would run smoothly and in four or five hours time I would be sitting there holding my little angel’s hand and stroking her hair.  I excused myself to the bathroom off the waiting room.  It was a single bathroom.  I locked the door and fell to my knees on the tile floor.  I sobbed.  I have known discouragement and sadness before but until that moment I had never known anguish so deep it choked the breath out of my lungs and made it hard to breath.  I tried voicing a prayer of pleading knowing that God was the only one who could help little Abby.  As soon as my thoughts turned to Him, the sweetest feeling I had ever felt washed over me.  It filled the little bathroom.  There on the tile floor I felt enveloped in love and peace and security.  I took a deep breath.  I stopped crying and instantly knew that things would be okay.  Whatever happened, the Lord was in it and I could handle it.  I left the bathroom calm and at peace.  A social worker came out and put us in a private, separate waiting room.  A sign I knew happened when things weren’t looking good.  It was a way for families to be able to gather and share their grief.  We went in the little waiting room and turned the lights off.  My parents, who had spent the day waiting with us, were upset and emotional.  We sat quietly and the entire time, I felt at peace and calm.  Then, 8 hours after Abby’s surgery began, her surgeon appeared in our room.  He looked bedraggled and exhausted.  He didn’t look like a doctor but like a man who just fought the biggest battle of his life.  He explained that in order to fix Abby’s high heart rate and pressure they had to cut into the pulmonary valve to relieve the stenosis.  This meant Abby’s valve leaked and would until it was repaired at some future time.  However, the heart was now functioning better than it had before and Abby was stable.  Her chest was left “opened”, meaning they didn’t stitch it up but covered it with a dressing.  This was done to allow for extreme swelling and also so that if they needed to get to Abby’s heart quickly to remedy a problem, they could without any trouble.  We would be allow to see Abby in the PICU, where they housed all open-heart surgery patients, in about an hour.  We thanked him…awkwardly and ineptly.  The peace remained and I felt overcome.  Our journey and battle wasn’t over but we reached this summit.  An hour later, nine hours after surgery began, this is what we saw…

Immediately Following Surgery

Immediately Following Surgery

Really Abby was just a mass of tubes and bandages.  She had IV’s everywhere, a feeding tube, breathing tubes, chest drainage tubes, pacemaker wires, pulse ox monitors, and more.  Her color was pinker than I had ever seen her.  The nurses told us to go ahead and touch her.  I was worried that she was laying there with no blankets to keep her warm.  However, her skin was warm to the touch.  I stayed for a couple hours.  Talking to her, stroking her hair, holding her little hand, praying that she could fight the battle ahead of her.  She had made it through the surgery, now she needed to recover.  We still had the warnings of brain damage, especially due to her extended time on the bypass machine.  We were told sometimes coming off oxygen is a fight.  We were told that taking the drainage tubes out can also be tricky.  Plus, Abby’s difficult surgery could have adverse effects and she could go into heart failure at any time.  The first couple days were important.  This is what kept Abby alive…

Nine different medicines and fluids

Nine different medicines and fluids

The next few days were spent more or less living in the NICU with Abby.  I couldn’t bear to leave her side.  If she woke up, I didn’t want her there alone and scared.  Someone was always with her.  Mostly myself but often my husband or my mom would come to “spell” me so I could shower and rest.  The third day after surgery they closed Abby’s chest.  Her heart was doing better and she was stable and recovering.

Day Three...Chest was Closed!

Day Three...Chest was Closed!

It was so nice to be able to see our beautiful baby again without so many tubes and bandages.  And on this day, she opened her eyes for the first time!

Blue Eyes...Open

Blue Eyes...Open

Granted her stare was far away and she didn’t seem to notice me there.  She was still heavily sedated since the breathing tube was still inserted.  The constant ssshhhh sssshhhhh was like second nature to us.  I began to be a little fearful that maybe she had suffered some brain damage since her stare seemed vacant and far away.  Either way, she was here, she was fighting to recover.  The days were filled with the hustle and bustle of the NICU.  People coming and going, medicines being administered, labs being taken, blood gas levels being sent off, and me talking and singing to my little baby girl.  Day five was such a great day for us….

No More Oxygen

No More Oxygen

The respiratory therapist had been coming by and slowly weaning Abby off oxygen.  Little by little he would turn her oxygen down.  Day five he decided to take the tube out since she had been breathing mostly room air on her own for a few hours.  I was nervous.  What if she didn’t breath on her own?  She still seemed dazed and mostly unaware of us when she was awake.  Was she going to be ready?  He took the tube out and she barely made any fuss.  A little coughing and sputtering and then just breathing.  Breathing that was on her own!  I was relieved and happy.  I was so exhausted that night I left Abby alone to go and sleep a full night, in an RV borrowed from my cousin and parked in the parking lot.  The next morning I arrived in the NICU to this…

Our Abby is back!!

Our Abby is back!!

Do you see it?  Do you see it in her eyes?  I knew instantly that Abby was alert and comprehending.  She knew me and smiled at me.  She interacted with the nurses.  I fought back my tears as I picked up her hand and kissed her little fingers and played with her soft hair.  The recovery from then on sped up.  She still had tubes to be removed and some blood clotting issues to overcome.  But the fight she fought was tremendous.  She truly was blessed and God has chosen to continue to bless us with her.  I don’t have any way to express the feelings of my heart.  The words thankful or grateful seem to pale in comparison to the way I feel.  To her surgeon and OR team, to the staff who cared for her, to her cardiologist, to family members and friends who supported us, to a Father in Heaven who hears and answers prayers….I am grateful and awed at the sacrifice in behalf of my sweet angel.

Days were hard

Days were hard

Abby had her ups and downs over the next couple weeks.  Not all days were fun.  Holding Abby with her tubes was near impossible…she cried from all the pain.  I was so happy when the tubes came out and I could snuggle her and comfort her again.  She soon decided she would only sleep like this…

The only way to get Abby to sleep

The only way to get Abby to sleep

I got to know each hospital hall and floor well.  We walked and walked them constantly.  Her scar looked like this…

Scar

Scar

Two weeks after surgery, we left the hospital for home.

Abby with Dr. DiRusso

Abby with Dr. DiRusso

We took our baby home to celebrate her life.  And each day since then, I have thanked my Heavenly Father for her.

Home again.

Home again.

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4 Comments Add your own

  • 1. Can You Ever Really Prepare? : Perfect Broken Hearts  |  June 11, 2010 at 3:32 am

    […] see, but it will definitely take the horror out of it.  Abby’s pictures can be seen on the Miracles and Milestones page of this […]

    Reply
  • 2. Lorraine Gettis  |  June 13, 2010 at 12:28 pm

    Thank you for a good look at what is coming my way. I’m about to be a grandmother to a little girl with tricusoid atresia. Thank you and my prayers are with you and you Abby.

    Reply
  • 3. Mary Jo Haapala  |  January 4, 2011 at 3:41 pm

    God bless you and your little girl. Our daughter had her open heart surgery when she was 2 1/2 years old, she is now 17. When she was little she would ask about all her scares. We would call them her “Pretties” because without them she would not be her with us. For that reason they are beautiful to us!

    Reply
  • 4. jesse howard  |  July 5, 2011 at 10:59 pm

    I had the same surgery in 1981. I am 29 now!!!
    Jesse Howard- Lynchburg VA

    Reply

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