Hailey's Hope Foundation

Supporting Families in the NICU

Asher – 23 weeks

Asher Ortiz 11.11.11

Asher (born at 23 weeks, 1lb 4oz)

Realizing that I was pregnant brought so much joy and happiness to my life.  How amazing it is, knowing that a little life was growing inside of me and hearing my voice and developing features from both mommy and daddy, how excited was I of our new addition to the family.  But what happened next was rather unexpected. My little baby boy was about to experience the journey of a lifetime, especially from the start when his journey of fetal development ended 4 months too soon.

It all started like any fine and normal pregnancy, just like my two other pregnancies that were both full term pregnancies with no problems or complications. Unfortunately, this was not the situation for my third pregnancy, at 19 weeks of pregnancy I was told by the doctor that I had a ruptured membrane (which meant that my water broke) and that because of this occurrence my baby could be born at any second, or any day now.  I was then sent to the hospital for a double check and to make a terrible decision as to whether I wanted to continue with my pregnancy or terminate it.  We were told of all the possible negative outcomes that could happen to my baby if I continued with my pregnancy.  My husband and I decided that as long as it was not life threatening to me or the baby, that I would continue my pregnancy and that I would leave my baby’s life in God’s hands.  I was placed on complete bed rest and could not continue to work as a high school teacher or perform any of my household chores such as cleaning or cooking, I could not do anything and I drank gallons of water, hoping this would somehow help my baby.  I also took fast showers and took quick bathroom breaks to prevent losing any more fluid.  This was the first difficult step in my family’s life, and thanks to our family, friends, neighbors, colleagues, the Montgomery Montessori school and the St. Paul’s church community we were able to eat well and my children were able to continue their lives and activities with less chaotic interruption.  My husband was also able to stay and help me for a period of time but then needed to return to work.  My younger brother Jason, then stayed at home to assist me, even though most of the time he had no idea how to do things:)  My family and I began to realize how blessed and fortunate we were to be loved and cared for by so many others.

Every week after my water broke, I was taken to the hospital because I would have a massive rupture that made me afraid to even look, I did not want to see my baby born that way.  But thankfully, each week that I was hospitalized the baby was fine and I was sent home.  These massive ruptures continued every week, until I reached exactly 23 weeks and went into labor on October 6th, 2011.  I was terrified and in a lot of pain, the goal was to reach 24 weeks so that my baby was viable and the doctor’s could save my baby’s life.  My son Asher was born a week short of that time frame but thank God my son’s doctor Dr. DeCastro assured me that my son was viable and that they were going to try everything possible to save his life.  Asher was born at 8:08 a.m. in a breeched position and was resuscitated.  He weighed 565 grams, which is 1 pound 4 ounces, and his length was 30 cm.  He was in severe critical condition and it was unknown if he would make it through.  He was then taken and flown to the Maria Fareri’s Children’s Hospital at Westchester Medical Center.  Asher’s journey was long from over, it had just begun.

Andrew:Asher Feb 2012 030

Dad, Andrew, with Asher (at 4 months old)

While Asher was at Westchester, I was still in Orange County at the Orange Regional Medical Center with my husband. The staff and nurses were simply amazing they were so kind and compassionate. Always asking and addressing my needs, I was so happy to see how great they were and was medically released to go home on the 7th of October.  I was always in contact with the Westchester nurses to know my son’s status.  I was eager to see my son and drove to Westchester as soon as we left Orange Regional, I needed to see my son and talk to his doctors.  I did not even think about resting, I just knew I needed to be with him as soon as possible.  Once we arrived we were informed that he was in a delicate and critically severe condition. We knew that we needed to be strong for Asher and that God places challenging and obstacles in our lives that we must face and overcome. We prayed and prayed while watching our son through his incubator in the NICU, not knowing if he would survive. His lungs were very bad with severe respiratory distress syndrome. A day later he developed a level 4 hemorrhage on the left side of his brain, which then cause hydrocephalus and even though Asher’s condition was getting worst instead of better, we did not loss faith.   Asher needed surgery to get an omaya reservoir to assist with the hydrocephalus.  As he got older, he then needed surgery to replace the omaya reservoir with a VP shunt, all while still requiring oxygen from ventilators.  Faith gave us the strength and desire to keep fighting and to continue to believe he will get better but we knew that it would take time.

My family’s faith gave me the strength to go to the hospital and see Asher every single day, rain or shine and even during that big snow storm we had in October. I would motivate myself to wake up and pump milk for my son every two to three hours. On the weekdays, I drove my sons to their school every morning. After dropping them off, I would drive down to see Asher in the hospital at Westchester.  I would then return to Orange County and pick up the boys from school, eat, do homework and then attend their sport activities.  Sometimes, depending on Asher’s condition, I also went to the hospital at night when my boys were in bed and my husband stayed with them.  I wanted my children to be assured that their lives did not come to a stand still, so I made every effort to have them understand the situation, pray, and continue to do well in everything they do.  During the entire process it was a constant roller coaster of good days and bad. It was traumatizing, exhausting, physically and economically draining.  My husband needed to work for the family, so he made every effort to see the baby during weekends when the boys were able to see their brother Asher. God has been merciful with us, he has presented and lead us to the opportunity of meeting new people in our lives. We have made life long friends, friends to other NICU parents that needed words of comfort and embrace.  During our time in the NICU there were many precious baby angels who were fighters and are here today and others who lost their battle and are now in the hands of God. This experience made us all realize how precious life is and to cherish every moment given.

We had wonderful doctors, nurses and medical staff that all assisted in helping our little angel survive this journey.  We had also been introduced to a generously welcoming and comforting foundation named “Hailey’s Hope Foundation” who understands the struggles, stresses and economical difficulties NICU parents face. They help, listen and relate to other NICU parents and will go the extra mile just to provide assistance.  We all thank them for all their wonderful generosity and accomplishments.

Asher was hospitalized at Westchester medical for 4 months then transferred to Blythedale Hospital for a little over a month for assistance with weaning off oxygen and bottle feeding. Asher was finally discharged from Blythedale on March 15th.  Once my son was home, I truly believed that it would get easier but little did I know that that was not true.  Coming home created more obstacles for my family we had to make the decision and economical sacrifice that I would stay home longer and care for my son, he is a child that has many special medical needs and a daycare can not provide the care he needs.

I am happy to say that Asher is now 10 months old and weighs 18 lbs.  He may still have many medical conditions that need attention but is getting better as each day passes. He is and will always be my little champion fighter.  He has faced each and every battle head on even before birth and never quit, he has managed to defy many odds against him and has been victorious.  We all need to learn from his experience, to live and love each moment of life and to not take things for granted, we just don’t know what the future has in mind for us.