Our daughter, Elizabeth Marie, was born on February 24th, 2000 at approximately 12:19pm.  We were told that she was having problems breathing and she was flown to Hershey Medical Center on the Life Lion and put in the Neonatal Intensive Care Unit (NICU).  Little did we know that many difficulties would lie ahead.  Elizabeth was born with only one lung, the left.  It is called pulmonary agenesis.  She also was diagnosed with tracheal stenosis.  Tracheal stenosis is a narrowing of the trachea.  At some spots, her trachea was only 1mm in diameter.  That is the size of the lead in a pencil.

    Elizabeth has had many near-death experiences since she was born.  On Sunday, March 5th at 4:00am, her heart stopped beating and she stopped breathing.  The hospital calls it "coding". The doctors, nurses and respiratory therapists were able to revive her. The surgeons had to come and give her a tracheostomy.  That is where they put a hole on your trachea and you breathe through that instead of your nose.  She was able to breathe with the use of a normal ventilator for a short time before her blood CO₂ levels became deadly.  She was switched to a new ventilator called an oscillating ventilator.  This ventilator basically vibrated air into her chest to exchange gasses in her lungs more quickly.  This seemed to work until she could not handle her levels again.  They then put her on a "Servo-ventilator".  This ventilator would allow her to exhale for a longer period of time.  She needed that because her airway was so small, she couldn't exhale fast enough before the next breath would come in.  This ventilator worked pretty well...only for a short while.  Elizabeth again had problems with her CO₂ levels.  This time her level went to 190 when normal is 40.  She was very close to dying.  We did not know if she would make it.  We were told that Elizabeth would need full tracheal reconstruction.  To get her to the reconstruction, she was put on another ventilator, the jet ventilator.  This ventilator works similar to the oscillating ventilator but allowed her to exhale.

    On Tuesday, March 21st, at 10:00 am, she went to the Operating Room for surgery.  We waited for 13 hours until she finally came back to her room.  During her operation, Elizabeth was on ECMO.  It stands for extra corporeal membrane oxygenation.  It is a full heart and lung bypass machine.  Elizabeth's next few days were uneventful.  Unfortunately, the emotional roller coaster didn't end there.  On Tuesday, March 28th, Elizabeth "coded" again.  She had blood in her lung from the surgery and it blocked off her lung.  The doctors performed a rigid bronchoscopy to help her.  The "bronch" allows the surgeons to look down her airway and clear out anything down there.  Elizabeth bounced back quickly and we started to feel good about her recovery again.  We were too happy too fast.  Thursday, March 30th, Elizabeth stopped breathing again.  She turned blue very rapidly.  The doctors were able to help her breathe by paralyzing her so she couldn't control her airway which she was constricting on her own.  The "paralytic" saved her life.

    On Friday, March 31st, we had another long day of waiting.  She was supposed to have another bronchoscopy in the morning under non-emergent conditions.  The surgeons finally came at 5:00pm.  They were with her for about 1 hour when they came out looking very happy.  They had taken Elizabeth off the ventilator and she was breathing on her own!

     For a few weeks after her surgery, Elizabeth was breathing well on her own.  They started to wean her off of the narcotics which had helped her to deal with pain for so long.

    On Monday, April 10th, Elizabeth had another surgical procedure.  This one was to help her with reflux and eating.  It is called a nissen fundoplication.  They twisted the top of her stomach to make it a one way valve and they put a feeding tube into her stomach.  Elizabeth will not take anything by mouth because everything that has gone in there is bad.  It is called oral aversion.

    Everything seemed to be going well.  Elizabeth was coming off of the narcotics.  To stop withdrawal symptoms, they started Elizabeth on methadone.  It was working.  Then on April 19th, she had a respiratory attack.  She would turn gray and cry for long periods of time.

   The fits could be controlled.  So, on May 17th, Elizabeth came home from Hershey.  The respiratory fits got worse when we got home.  Within 6 days, we were back at Hershey.  While back in the NICU, she was on the Children's Miracle Network Telethon.  

    Elizabeth's fits seemed to be associated with pain in her belly.  The doctors in the NICU decided that she could be better helped in the Pediatric Intensive Care Unit (PICU).  So, on Tuesday, June 13th, we moved to the PICU.  Elizabeth was put back on a ventilator to help her through the fits she was having.

    On Thursday, July 6th, Elizabeth was given a second tracheostomy to help alleviate the respiratory fits she was having. The tracheostomy did not stop the fits from coming though. On July 17th her liver stopped functioning.  Her gall bladder was blocked with a sludge-like material.  She was having gall bladder attacks all along.  They put her on meds to clear up the gall bladder.

    After being on the meds for her gall bladder, she was fine.  We were finally able to bring Elizabeth home on August 22nd.

     Her first few months at home were rough. Elizabeth had many tracheal infections but weathered them all; always with a smile upon her face too. As Elizabeth grew, she became one of the happiest babies you could ever meet.

     From morning to night, Elizabeth was always smiling and happy to be with anyone who would sit and play with her. We did have to do a lot of therapy with her to try and catch her up developmentally and get her off the ventilator but we did that over a short period of time. Elizabeth quickly came off the vent and gradually was able to catch up on the things she had missed while laying in the hospital for so long.

     She began standing and started to actually take objects in her mouth. She was becoming such a funny girl. Although she refused to walk she would "scoot" around the house with her legs folded "Indian Style." She loved to watch TV and listen to music. She loved to watch, "The Simpsons", "SpongeBob", and the "Toy Story" movies. Boy, did she love to dance. Elizabeth would dance to anything. She would sit on the floor and move her hips and arms but her favorite was dancing with anyone who would pick her up. She would dance for hours at night in the house before we put her to bed. She loved it.

     On Thursday March 28th, 2002, Elizabeth had her trach tube removed. She did so well without the tube in. She seemed to become even more mobile and boy did she love to make noise! Everything seemed to be going so well.

     Then something strange started happening. Every night Elizabeth would have a major crying fit that would wake her up out of a deep sleep and she would cry herself back to sleep after about 15 minutes or so. These fits seemed to get a little worse each night. Then on Friday, April 26th, the crying didn't stop and she was rushed to the hospital by ambulance.

     By the time we arrived at the hospital, they had given Elizabeth oxygen and she was fine. They decided she was OK and they sent her home. Then on Sunday, April 28th it happened again but this time we had oxygen at home and were able to help her out of this "fit." Then came the morning of Tuesday, April 30th, a fit that even oxygen could not stop. We again rushed Elizabeth to the hospital where they could not seem to get her blood pressure under control. On the morning of May 1st, Elizabeth was flown to Hershey medical center to see if there was anything they could do for her. The doctors and nurses in the PICU were amazing. They tried everything imaginable to try and save Elizabeth. They were able to keep her alive for one week. Her problem was pulmonary hypertension and it was damaging her heart and other body organs.

     On Wednesday, May 8th, at 10 am Elizabeth was pulled off all support. Her mommy got to rock her and hold her one last time and her daddy was able to dance with her one last time. She passed peacefully in her daddy's arms at 10:20 am. She was a true miracle and our little angel. We will miss her so much.

Erik and Penny