The Story of Lillian Part I

It is hard to believe its been two years since Lillian was born.  Maybe only now I can fully look back and amaze myself on what actually happened.  It was a tough time but somehow putting one foot in front of the other worked.

The pregnancy with Lillian was boring, it really was.  Everything progressed normally until December.  At her last ultra-sound, using head measurements showed that the baby was due on December 25, nearly a full month earlier than her Doctor had given her.  The doctor however was not concerned and figured Lillian had a growth spurt and was in general a big baby.  Preparations at home commenced immediately.  We were in the process of moving from the upstairs apartment to the downstairs and everything was a mess.  My parents offered for us to stay with them after Lillian was born until we got things settled.

The day before Martin Luther King Jr. Day, my wife awoke with contractions and the loss of her mucous plug (it looks as bad as it sounds), contractions continued for hours and eventually we called the doctor (we live 5 min from the hospital and my wife is not known for quick labors).  After talking with him, he concluded it was a go and we made our phone calls and got things ready, just as we were about to go, the contractions stopped. Completely.

The next day was the holiday, so the doctors office wasn’t open.  We had an early appointment on Tuesday, where Dr. Bloss discovered she was nearly 4cm dialated.  He was the OB/GYN on call at St. Peter’s during the overnight anyway and offered in induce labor.  My wife gladly accepted.  After getting our stuff together at home we headed off to St. Peter’s for the delivery.  IV’s were hooked up, water broken and the waiting game began.  We started a noon on Tuesday, and Dr. Bloss had noticed when he broke the water that there was some meconium (a baby’s first bowel movement, different from regular poo).  This meant that there would have to be someone from the NICU to clean her when she was born, it happens frequently (our first daughter was the same way) and this is supposed to prevent a rather nasty reaction, supposed to.

Lillian rolled into the world around 7 am on January 18, 2006.  I even got to cut the cord this time (loooong story on the first one, but shorter than this one).  However the meconium was absolutely caked on her, far more than anyone had guessed based on what was present when the water was broken.  Dr. Bloss quickly handed her off to the NICU (neo-natal intensive care unit) doctor who cleaned her up, but also make the split second decision that things were not quite right (she was crying) and took her to the NICU for observation.

After getting my wife fed and cleaned up (women are hungry after child birth) we got her situated in her recovery room.  I went home to get our other daughter Sophia and take her to Friendly’s as I had promised.  I then went home to sleep.  Around 6pm I got a phone call from Danika saying there was a problem and that they needed to send Lillian to Washington, DC. 

Rushing back to the hospital, I got the full scoop.  While they had cleared the meconium from Lillian’s lungs, they did not get it in time and she had a reaction to it.  Yes the stuff irritates the lungs, but the body recognizes it (it is floating around before birth) and since the body found meconium in the lungs, it assumes it is still in the womb and releases a hormone that prevents the body from receiving anything from the lungs.  Now this hormone is stopped as soon as the placenta detaches, but it can take days to clear the system.  As a result Lillian’s body shut off the pulmonary artery which runs from her lungs to her heart and is needed to live.  In severe cases the heart can actually go back to reverse, which can be fatal.

Essentially the doctors could inflate her lungs like balloons, but no matter how much air they pumped in, her body wasn’t getting much into her blood.  Slowly through the day and night, her blood oxygen levels slowly dropped, she was receiving 3 times the amount of normal oxygen and was keeping her blood oxygen levels at the low end of normal.  Now as far as I know, her oxygen levels never dropped into the danger zone at anytime.

She stabilized late in the evening and held her own through the night, but by the next morning she had not improved.  According to the NICU doctors, she was maxed out on everything they could do and if she took another turn there was nothing they could do.  Thus we had two options, one was we could run the risk that she stays stable and that the hormone wears off in another 48 hours or she could have ECMO (Extra-corporal membrane oxygenation), which essentially means she would be going on a lung bypass machine.  St. Peter’s did not have that equipment and surprisingly at the time neither did Albany Medical Center (they do now or so I’m told).  Thus they needed to find another hospital for her to go.  New York City and Boston are always filled up, so no hope there and they had lost their ‘reservation’ in Washington when she stabilized.  We were being sent to Buffalo, Rochester, even Ottawa, but as luck would have it a spot opened up at Crouse Hospital in Syracuse only a 2 hour drive away.

Agreements were made and preparations began.  A transport team would fly by helicopter from Syracuse to Albany to get her, but there would be no room for equipment which means they would have to give her air by manually bagging her.  On our end we were in shock, but we stood resolute.  It was out of our hands and in the hands of the doctors and if you believe it that stuff, God.  The NICU bent the rules (Generally kids are not allowed in the NICU due to infections) Sophia to visit her sister, barely 24 hours old.  There was a tremendous amount of risk with travel and they made no guarantees.  Sophia had excitedly been waiting and had purchased a balloon and we had taken her to the Build-a-Bear Workshop to build a teddy bear for her sister.  Yet here was the moment, Sophia who was only 4 at the time, was frightened of her sister as she was held by Grandma.  I can’t imagine what she felt, to see what the rest of us were seeing to see a little infant hooked up to more machines (the nastiest was what is called an oscillator, which essentially vibrates the baby so it can breath easier).  You couldn’t make any noise near her, she was in isolation, even the slightest sound could wake her and her vitals would become uncontrollable.  The doctor at the time was one crazy guy, who took tremendous pride in his work and always tried to make light of the situation.  He had just gotten a digital camera and annoyed the nurses by taking pictures of all the kids.  He kindly took a picture of Sophia, grandma and Lilian and printed it out for us before we left the hospital.  Sophia had no desire to return, although you could tell the whole situation affected her immensely and she didn’t have a parent to comfort her, but grandma did a good job.

Soon the time approached and preparations began in earnest.  Soon the transport team arrived and I stood outside in the waiting room looking in as over 12 people, doctors, nurses administrators etc. prepared to move a 22 inch 10 lbs baby.  My wife was in the NICU signing what seemed like a massive stack of papers as well as giving verbal approval to the doctor in Syracuse to perform the ECMO when she arrived.  For me time stood still, nothing else mattered in the world.  The fact that we were broke and it wasn’t looking like I would be able to go back to my miserable 4 hours week minimum wage job.  We had used the rest of our savings to prepare for the baby and there she was on the edge between life and death.

Then she was gone.  The transport team had taken her, although not without one last kiss from her parents.  I remember looking at her, unconscious and faintly blue in color and then she was off. 

We went back to the recovery room (my wife had just give birth 24 hours earlier) and got permission from her Doctor to be discharged early.  We arrived back and home and gathered our stuff together.  My wife couldn’t even go upstairs to get her stuff, because she wasn’t sure she could handle seeing all that baby stuff without a baby.  My mother-in-law who had been at the hospital, took Sophia home and my parents (thank god) came with us to make sure we did things, like eat and also to provide some support and company.

We then started on our way to Syracuse.  Hours had gone by and we were out of contact.  We had no idea is she was even alive or what had happened on the helicopter ride.  My wife and I took one car and my parents another and because we had no idea what was going on, my wife and I had the toughest conversation we ever had, about potential funeral arrangements for the baby.  It was the longest 2 hour drive of my life and even when we stopped to eat at Burger King, nothing tasted right.  We were able to get some relief however, Danika called the hospital and got information that Lillian had arrived and had tolerated the flight well, but she was in dire need of the ECMO treatment and the doctors had performed the surgery (more on that later).  Temporarily relieved we continued on to Syracuse.

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