Lilli's Heart Story

I am the father of Lilliann.  She was born October 30th, 2008 at a small hospital in Oregon City.  My wife Sandi had a perfect pregnancy.. never a single issue that caused alarms.  I will never forget that that day.  It started with Sandi calling to me from the living room about 5:30 in the morning to tell me her water broke.  Like every other new father I jumped out of bed and was ready to go to the hospital right then and there… Of course my wife being the wiser one of the two of us calmed me down.. SHE EVEN TOOK A SHOWER… PUT ON MAKE UP AND EAR RINGS!!!   Heck she even started a LOAD OF LAUNDRY… 

We arrived at the hospital just after seven in the morning. I expected to see my daughter in the next few hours. Boy was I wrong. I even took time out to call into the radio station I work for to give updates to our listeners.   Fast forward now to 9:09 pm and my beautiful daughter was born.  At the time she was perfect, but looking back now I can see the issues.  She was very blue. I was told that was normal.  She had a heart murmur.  I was told that was normal.  She had many other issues thriving but I was told, it was normal for a newborn to be slow to get going and things were ok.

She had a jaundice so they rolled in those wonderful blue lights.  She was sleeping well, Sandi was sleeping well.. Me not so much.  I asked Sandi if it was ok if I went home and she said yes.  So I got to go home, tend to our puppy and sleep in my comfortable bed. I came back the next morning for a day of endless vistors… Grandmas, grandpas, aunts, uncles, friends… It was a busy day.  Lilli was still not right.  We were told she was not in any danger, she just needed some help getting going.

It was about five PM…  Sandi was taking care of some mother jobs… Her mother was also with us in the room and I was watching Lilli.  All of a sudden the left side of her body started shaking.  It was a constant and pulsing movement of her left arm and leg.  I freaked out!  We called the nurse down with a 911 page.. She came running and to tell me… Oh don’t worry honey… those are just hiccups…  I was not sure so she told me that she would send in another nurse to check on her because she was on the phone with the doctor.  The MOMENT the other nurse walked in she told us that was not normal and she took her to the nursery.

Sandi was pumping breastmilk at that moment so she stayed there and I followed.  I stood in that nursery watching nurses and doctors hover over her for the next 5 to 10 minutes before Sandi made it down there.  We stood there as they poked and prodded my little girl.  Then the doctor that was looking over her said something to us that not a single other doctor has said to us since and better NEVER say to use again.  “You guys need to leave the room”.  Not knowing any better… that is what we did but there were family members in our room, so we went to an open room next door and spent the next hour without an update and we cried and held each other.  Finally a nurse came to check on us and to clear the family members out of our room.  We went back into or room and then the doctor came in to let us know they did not have the ability to do anything for her there so they were transferring her to what was then called The Children’s Hospital at Legacy Emanuel.. Now of course it is known as Randall Children’s Hospital.

It was then my job to go out to the waiting room where a few family members who were there to congratulate us and to see Lilli and tell them that something was seriously wrong and an ambulance was on the way to take her away. Sandi and I spent the next hour sitting with Lilli as they continued to get her ready for transfer.  They put her in a little plastic box.. something I had seen on TV but never in person.  Sandi rode in the ambulance, I followed close behind. 

What a scary time… I arrived at Emanuel behind the ambulance and had to find a parking place. I had no idea where I was going.  Finally I figured it out and made it to the NICU.  When I got in, they were working on her with Sandi sitting in a chair right next to her. Sandi and I spent the first night sleeping in a small room in the NICU, questioning what was going on.  I don’t remember much about that night but I am sure I did not get much sleep.  The next day was spent with more tests and more questions with no answers to what caused the shaking.  Over the next few days she started doing better.  Eating, breathing, more responsive and after four days in the NICU we were told she could go home the next day.

When Sandi and I arrived back at the NICU the next morning we were very excited..  We walked in expecting to bring Lilli home for the first time.  However when we walked up to her bed, she was still hooked up to tubes and wires.  The nurse did not know much about what was happening and we all just assumed that they were running a little behind and she would be unhooked soon and rolling out the door with us very soon. 

The doctor who had been watching her for the past four days came over to us and said hi.   What happened next will forever be the moment I remember as when my life changed.  He said we need to talk … why don’t we sit down.  As Sandi went to sit down in the chair I watched the doctor reach behind her and grab a box of tissues.  I thought to my self… OH CRAP…  He explained to us that her heart was sick and that it was serious.  We did not understand what he was saying.  Maybe it was the shock of being told without surgery, my baby was going to die but I think I stopped fully listening after about a minute of him talking and just sat there and looked at my little girl.

He told us a cardiologist would be by to talk to us in the next few minutes.  That day I met three of the most important people I will ever know.  Doctor Marc LeGras, Doctor John Igibashian and Nurse Paula Bennett at Randall Children’s Hospital.  Doctor LeGras explained to us that Lilli had Hypoplastic Left Heart Syndrome.  The left side of her heart did not form properly and she needed to have life saving surgery very soon.  Doctor Igibashian… or Doctor John as everyone calls him because his name is way too tough to say right all the time… is her surgeon.. He explained what would happen and how everything was done.  I can tell you now I understand what he was talking about, but right then and there… I had no clue.  And Nurse Paula Bennett, who turns out was an acquaintance of mine when I was a young boy, was there for us step by step and was our shoulder to lean on and our ear to talk to when we needed her… and she still is to this day. 

Lilli had her first open heart surgery on the 9th day of her life.  It was a Saturday and the hospital was very quiet.  Sandi and I had a lot of support from friends and family.  We all stayed in the waiting room, watching tv, talking, playing cards and Sandi even knitted a whole blanket if I remember right.  After seven hours the nurse came in and said they would be coming down the hall very soon and Sandi and I should go out and see her because it would be another 40 minutes before they had her all transferred into the PICU.  We waited by the doors and watched as a team of men and woman rolled this tiny bed down the hall way with a lot of machines following behind.  My fist glimpse was scary.  They were breathing for her and all we saw was her face. She was covered from head to toe and her eyes were taped shut.  It was pretty scary. But then Doctor John said…. Don’t worry… This is how it is supposed to look.  The ten greatest words I have ever heard. 

Lilli recovered well and on day number 22 we finally got to bring her home.  It was a great feeling. We spent the next 3 months getting to know her and loving her. Sandi and I alternating who got to sleep for 6 hours to make sure we fed her every 3 hours.  Ah the joys of being a parent. We went back for her second open heart surgery on March 9th, 2009. My birthday is March 10th. This was not the birthday present I had wished for but I would have to say now it was a great birthday because that surgery also was a success and she recovered well and was home a short eight days later.

Since then we have had the time of our lives raising Lilli.  We have taken vacations with her, she has learned to walk, talk AND BACK TALK like a normal 3 year old does.  She goes in every six months for a heart check and every time she comes out with great news.  All in all she has been great.  Her last check was in January and he finally gave us the news we were dreading but expecting.  Next summer, Lilli will be scheduled for her third and hopefully last open heart surgery.  It’s a day I am not looking forward to, but at the same time I am.  I hope with this surgery she will be able to live a nearly normal life for a long time.