OUR STORY

We found out that we were expecting our first child in January 1998. As in the case of most expecting parents, we were both excited and nervous. The first 24 weeks of this pregnancy were uneventful. At our 25-week ultrasound, we decided to learn the sex of our baby. Elated with the news that we were having a little girl, our joy quickly turned to fear.

The technician explained that our daughter’s growth was 4-6 weeks behind normal, and her amniotic fluid was dangerously low. The doctor gave us the grim statistics: our daughter had only a 10-15% chance of survival. With a last ditch effort of strict bed rest, her fluid levels did not rise, and the decision was made that her best chance of survival was outside of the womb.

Alexandra “Lexi” Gabrielle was born at 26 weeks gestation, weighing a mere one pound, and was just 11 inches long. This marked the beginning of our 89-day journey through the NICU.

As we entered the new millennium, we decided to meet with a high-risk specialist to determine if we could attempt to have another baby. We were nervous to try after what we went through with Lexi. After much consideration, we made a decision to have another baby. We were informed that we had a good chance of a “ normal” pregnancy with strict follow up visits to the doctors. We found out during this pregnancy that Lupus antibodies were most likely the cause of having our daughter premature and that this current pregnancy had to be even more closely monitored. Even with all of the monitoring, we delivered Jared Robert at 27 weeks gestation. He weighed 2 lbs, 3 ounces and our second NICU journey had begun.

We spent a combined 156 days between Lexi and Jared in the NICU. We spent a majority of those days worrying about the kind of future they had in store for them. We feel very blessed to look at them today playing and laughing like everyday children

LEXI'S STORY

On June 23, 1998, Lexi was born via emergency C-Section. She was 26 weeks gestation, weighing just one pound, and only 11 inches long. We were prepared for the fact that she would not be born alive. Thankfully, the neonatal team was able to insert a breathing tube, and we began to hope for a miracle. Along with Lexi’s premature birth came many problems. She suffered from severe IUGR, BPD, Apnea, ROP and calcium deficiencies. In her first few weeks of life, Lexi failed to thrive. She was too premature to even digest a half of drop of breastmilk. She was on a ventilator for one month, C-Pap for two months and a nasal canula even after her discharge. There were numerous times that we did not believe that she would survive through the night.

After 89 days in the NICU, Lexi was released. She weighed 4lb 10 oz, and came home on oxygen, an apnea monitor and seven medications. She was seen by her pediatrician for weekly weight checks and monthly synigis injections to prevent the RSV virus. She was also monitored by a surgeon for a hernia, an endocrinologist for mineral deficiencies, and her neonatologist for her development. She spent her first month home on oxygen and her first year on medication. Her major problem during her first year and a half was “Hyper Gag Reflex” and “Reflux” that made her throw up after most feedings.

Today, Lexi is a very active 8 year old. She now weighs 50 lbs. and is growing nicely on the growth chart. She loves The Disney Channel, Reading and listening to music.

JARED'S STORY

Jared was born on July 24, 2001 weighing 2lbs, 3 ounces. He was 27 weeks gestation. Initially, we believed that Jared was much healthier than Lexi. However, we soon learned Jared was suffering from severe lung disease. Jared’s lung disease caused two major problems. First, his underdeveloped lungs were to damaged to work on their own. He required large amounts of oxygen to prevent apnea episodes. He spent one month on the ventilator, three weeks on a C-Pap, and three months on the nasal cannula. His lung disease also made his body retain fluid. He needed to be on two diuretics to get rid of this extra fluid. The diuretics made it hard for Jared to gain weight his first two months.

After 67 days in the NICU, Jared was released weighing 5lbs, 4 ounces. He was released with oxygen, an apnea monitor and 13 medications. He also required a 6-calorie formula to help with his weight gain.

Jared also needed weekly weight checks and monthly Synagis injections to prevent RSV. He spent his first four months home on oxygen and his first nine months on medication.

Today, Jared is 6 years old and a healthy 40lbs. He loves Harry Potter and his big sister. Jared is developing at his corrected age but is monitored by early intervention to prevent any future delays.