Our PRECIOUS BABY BOY

The beginning

I found out Evan had down syndrome, a congenital heart defect and fluid in his belly while I was pregnant. I went through all the feelings of anger, sadness, anxiety and fear. I felt as if all my hopes and dreams were crashing down and I spent many weeks crying and feeling apprehensive.
By the time I had Evan via emergency c-section (and 5 weeks early) on August 1, 2000, I was delighted to have such a beautiful baby boy. At 5 lbs and 5 oz., Evan was one of the biggest babies in the N.I.C.U. but he was one of the sickest. Evan was on a ventilator, required a lot of medicine and was unstable. I could only touch my baby's hand and I couldn't hold him. All the sadness and dissapointment I felt melted away and was replaced with unconditional love.

Coming home after N.I.C.U.

Evan was diagnosed with atrioventricular septal defect, lung disease, severe reflux, transient leukemia, and many other disorders/problems that disipated over the first weeks. Evan spent a rocky 5 weeks in the N.I.C.U being ventilated, medicated, tested and stabilized before coming home on his due date of September 8, 2000. He was the tiniest little baby I had ever seen and only ate 2 ounces every 4 hours, if I was lucky. He needed heart medicine and a diuretic and we went to many doctors. Evan went to the cardiologist's and pediatrician's office every week for a few months and I spent a lot of time making sure viruses and germs stayed clear of us. Any sickness could be fatal for my premature and fragile little man.

Before the heart surgery

Evan needed to be put on oxygen In late November for what I later learned was significant pulmonary hypertension. Heart surgery was nececssary and inevitable when he was big enough and strong enough. At five months, Evan was only 11 lbs. Heart surgery was scheduled for February 2, 2001 but it came with many risks. I found out that the pulmonary hypertension was severe and increased the death rate by 75%. The surgery should have been done sooner, but if we didn't do it, Evan would most likely die at a very early age with a poor quality of life.

The second half of life in the hospital

Evan made it through surgery, taking a month to recover. He spent 3 weeks post-op in the pediatric intensive care unit needing 1:1 care. Although was sick when we left on February 29, we went home. On March 1, Evan was admitted to the Children's Hospital of Buffalo following an episode of turning blue. He was diagnosed with having RSV (respitory sinsitial virus). We had spent 6 months avoiding this and it was contracted in the hospital. The RSV led to a lengthy and very scary few months of near death. Evan's lungs couldn't handle the infection and he was sedated and intubated for many weeks. After an amazing recovery, Evan was doing well and getting ready to come home when he suddenly "crashed" and was back in the pediatric I.C.U.
This time was the worst. Evan was on maximum life support, oxygen, nitric oxide and wasn't responding. No one could figure what happened. Evan was placed on E.C.M.O (extra corporeal membrane oxygenation) as a last resort. Evan was so unstable that doctors couldn't even test him for fear of decompensation. He had an infection on his heart (endocarditis) and other infections posing serious danger to such a fragile life. We prepared ourselves for the worst and I came to terms with the impending loss of my child. I wished for days of simple pleasures, to feel the grass, to see the sun, to have a bug crawl on his leg and to celebrate his first birthday. After a miraculous 2 weeks on E.C.M.O., Evan came off and was his same old self. Evan showed no evidence of infection or residual effects from the E.C.M.O. We once again waited through recovery and prepared to go home. Evan was given a tracheostomy tube to help him breathe while his lungs made new cells.

Home again for the last time

When Evan came home on July 20, 2001, he had a trach tube in, was on oxygen, needed a feeding tube (he wouldn't eat after all those months of tubes) and lots of medicine and 24 hour care. It was scary having such a special needs baby home again, but we survived. My wishes of simple pleasures came to be. Evan had a big birthday party for his first birthday, laid in the grass and went for walks outside. He began to get stronger and we grew accustomed to all the medical equipment at home. We watched sesame street and played for hours. He was my first and only priority.
Evan was having some strange high fevers almost daily, despite all efforts to get his pediatrician to figure out the problem. Evan's heart rate then began to drop low (60's for a few minutes and then hang in the low 100's while sleeping). On September 8, I couldn't get his fever to go away so I took him to the hospital. He was dehydrated and his numbers were very bizarre. The Pediatric I.C.U. staff was keenly aware of Evan's complex medical issues and made every effort to straighten this out. Evan was doing well, when he began to "crash" again. On September 11, 2001 at 10:30 pm, I put my baby (who was stable) down to sleep for the night and I went home. Something I now regret. I was awaken by the early morning dreadful phone call..."Evan isn't doing well, you should get here".
I arrived at the hospital to find that he had been recusitsted and medicated for an hour to maintain a heart rate. He spiked a high fever again and his lungs went into a hypertensive crisis. My little warrior could fight no more. When the doctors and nurses said I should decide on DNR orders, I was in shock. Evan had fought off infections and death so many times, surely a high fever couldn't be the end. When I accepted the reality that Evan wasn't coming back, I decided that turning the medicine off would be best. But before it could be done, Evan went quickly on his own. When it was clear that he wasn't going to breathe again, I held my baby and rocked him as he became an angel.

About Evan

Although was a very complicated and "sick" baby, when he was well, he did nothing but smile and laugh. I am blessed to have been chosen to be the mother of such a special soul. Evan had come full circle. His first and last day at home was September 8, 1 year apart. He was loved beyond comprehension and every moment treasured. Evan was the epitomy of strength, courage, happiness and hope. Evan warmed my heart with a big smile every time he saw me. And I was even more happy to see him. He loved to hold hands and play with his rattle. He was my whole world and more.