Norwood Day- Surgery #1

Thursday, May 19, 2011

Grandma did not sleep well. The anxiety, worry, and fear kept me awake most of the night.

The family all gathered at the hospital early that morning, so that we could see Hunter before he went to surgery.  It was so very hard to have to leave that little one, but faith had to be on our side.  There were many family and friends praying for this little guy.  We knew that he was in good hands, but all the "unkowns" are the greatest creator of fear.

The surgery staff was very good at coming out at different intervals and giving the family updates on Hunter's status. At each time, he was tolerating the surgery and doing very well. He's a trooper and a fighter! After a long 4 1/2 hours, they told us that Hunter was out of surgery, that he did great and we would be able to see him soon!

Even though my mom was a nurse for over 30 years, and I have worked in a hospital for 20 plus years, it was still a bit of a shock to see so many tubes, pumps, wires, sensors and monitors attached to his tiny little body.  You feel so different when it is your "own" laying there.

HLHS- I don't understand....

Hypoplastic Left Heart Syndrome? What does that mean? How can that be?  How can a baby have half a heart? How can such a terrible thing happen? How can he survive? Those are just a few of the questions I know I asked. Total distraught and fear was what I was feeling.

As difficult as it was, I knew that I had to swallow hard, try to stop the tears and find out all that I could to help make realilty a little more understandable and acceptable. I wanted to know what was going to happen with this precious little angel. I will share some of the results of my research.

HLHS is a congenital birth defect that effects the left side of the heart. It is a combination of several abnormalites of the heart and great blood vessels. The defects occur due to abnormal underdevelopment of sections of the fetal heart during the first 8 weeks of pregnancy, with no explainations or reasoning. No one knows why or how.

It is the most common fatal congenital heart disease in newborns.  Until 1983, this heart condition was considered lethal. There are now two surgical options available for survival.

Heart transplant is one option, normal rejection risks are involved and finding a newborn heart for transplant can be difficult.  The other option is a three step surgical procedure.  The first stage is called the Norwood. This procedure allows the right ventricle to be the main pumping chamber for blood flow to the body. The aorta is made larger to accomodate the increased blood flow. A connection is made to the pulmonary artery with a shunt to allow blood flow to the lungs. Because the oxygen rich blood is mixing with oxygen poor blood in the aorta, the baby will still have a bluish tint or what is called "cyanosis".   This surgery is performed within the first week of life.

When the baby's lung pressure has decreased, it is time to perform step 2, usually performed at about 4-6 months of age. The second step is the Hemi-Fontan or the Glenn.  This step reduces the work of the right ventricle by allowing it to pump blood to the body only, and allowing most of the blood to flow automatically from the body to the lungs.

The third and final stage, the Fontan, completes the series of surgeries. This step allows the remaining oxygen poor blood coming back from the body to go to the lungs, improving the oxygenation of the blood. This stage is normally performed at 3-4 years of age.

There are many risks involved with each of these surgeries.  The first one is the most risky, the newborn heart is so very small and fragile. At each step the baby is placed on a ventilator, blood by-pass machine, so there is always the chance of many possible complications. 

A lot of information to try to take in and make some kind of sense, huh? I see a rough and bumpy road ahead.

Preservation of Tiny Fingers and Toes

The next step? Breathe, breathe again, and say a lot of prayers!  For the next two days, Hunter was kept in STV NICU in preparation for his Norwood procedure. I can remember walking through the double doors into the NICU for the first time and seeing all the many, so very tiny, innocent babies and being in awe.  How can all of these newborns have so many problems? But how wonderfully awesome that there is such a place to give them a chance and to provide hope! Some babies were brand spanking new, some had been there quite a while, it was obvious by all the "personalization" added to their areas.  As I was trying to take in all of what I was seeing, I walked up to Hunter's little "pod".

I was totally overcome with emotions. It was so very difficult to see the once so very "normal" baby that I held in my arms just hours ago, attached to all the machines and tubes that were now pretty much keeping him alive. So very incredibly scary. Even though it really was only a couple of days, it seemed like an eternity till his surgery day, but at the same time, it was all a blur.

His Norwood was scheduled for Thursday morning.  He had to be transfered Wednesday evening to STV Peyton Manning's Childrens Hospital (PMCH) to make sure he was stablized before his first open heart surgery the next morning. This meant, once again, a life saving ride in the Pediatric Critical Care Transport.  Even with knowing all the good that happens inside that vehicle, I still cringe when I see it on the road.  The bassinett (not really sure what it is called) is basically a small, moveable, hospital room.  Quite amazing to watch the Transport Team at work setting all the dials and buttons for everything is it capable of doing.

Once Hunter was on his way to PMCH, we were, too. Here he didn't have a "pod", of which there were many in the huge open room in NICU, but he had his own room with his own set of caregivers.

Because of him being transported from his birth hospital to STV at just a few hours old, there were some of the "normal" things that were not able to take place.  Things that you associate with the birth of a new baby, some of those memorable things you look back on, (for instance those tiny little ink hand and footprints, newborn hospital pictures), get lost and become non-existant when caregivers are fighting to help save the child.  When this subject came up in casual conversation with Mommy and Daddy, the nurses on the first night shift helped preserve that moment in time by making sure Hunter had his prints in ink.  And that wasn't the only thoughtful gesture, they also drew pictures of animals etc. to place on the sliding glass door of his room.

Hunter's Hand and Footprints

A Shattered World

All seemed to be going so well, mommy delivered liked a trooper, baby was full term, nice weight,7.5 lbs, 21 1/2" long, ten fingers, ten toes, all the things everyone always looks for, then WHAM!

I stopped at the hospital to hold that little one before I had to go into work. Mommy (Carissa) was a little concerned because he had not nursed for almost 6 hours but being a newborn,  we thought maybe that was normal. As I placed him in his bassinet, to head off to work,  I noticed his breathing was a little different than before but once again, probably not a big concern.

After I arrived at my office, my son (Chris) called and said things had started to change more drastically.  Baby was breathing strangely, almost panting, his little chest was caving in from breathing so hard. Mommy and Daddy, very alarmed at this point, alerted the nurses. Little Hunter was taken to the nursery where he had test, after test, poked, proded, nurses, doctors, machines.....what was happening to this precious little one? All of this was happening as this very anxious Grandma was about 40 miles away....No one seemed to know what was wrong, but something was not right with his heart. Specialists were called in and it was decided he needed to be transported to the NICU(Neonatal Intensive Care Unit) at St. Vincent Women's Hospital in Indianapolis, right next door to my office building. I can't describe the pain, the uncertainty, the fear that I experienced as I sat for over an hour, by myself waiting in the parking lot for that Pediatric Transport and my family to make it's way to STV.

Within the first hour of arriving at STV, we had a diagnosis.  He was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). The left side of Hunter's heart did not develop.  How on earth can your seemingly perfect world suddenly be shattered by something so horrific?  We all sat stunned and did not know what was going to happen next........