Iliana was born on Friday, September 17, 2004. I had been on bed rest for 6 weeks due to low amniotic fluid but at my doctor’s appointment that morning it was decided that Iliana’s lungs were probably developed well enough and she would be born that day by C-section in order to prevent her any injury or further serious complication as she continued to grow. At this point we knew that Iliana had a condition known as mild ventriculomegaly, meaning that of the four ventricles that help circulate fluid around the brain and spinal cord, there was one ventricle that was dilated larger than the norm. This diagnosis led us to have a number ultrasounds and brain scans. When I asked my doctor, please tell me, bottom line, what does this mean. His answer was that he didn’t know, it could mean Iliana would be born with one of several genetic diseases, require a shunt to relieve the pressure in her brain, or it would make absolutely no difference and that is just how she is. Finally, she was born. I finally felt relief. My baby girl was here, I couldn’t wait to hold her, take her home with me, have her become part of our family, and then I would confront the ventriculomegaly and follow through with the genetic testing. I felt strongly that her lungs would be developed even though she was 3 ½ weeks early because I had received a set of steroid shots 6 weeks prior. Little did I know that our journey was only beginning. Minutes after her birth, one of the doctors approached us and said that Iliana was having a hard time breathing and they wanted to take her to the NICU only for observation. He said that it probably wont be long and she would be back in my room within a couple of hours. I believed it, still expecting everything was going to be ok. Then we were visited by one of the NICU doctors while in recovery. I was on medication at the time so I do not remember much of what she said other than it was more complicated than they first thought. I remember asking would I be taking her home with me and responded with a confident no.The first time I was able to see Iliana was Saturday afternoon. My husband, Dwight, took me to the NICU. He had seen her and had told me what was going on with her and I had spoken to her nurses by phone, but I was still not prepared for what I saw. Already, her face was swollen, she didn’t look the same. There were a lot of lines coming and going, machines giving medications, and a monitor with her vital signs that was difficult to understand at the time and whose alarm would go off every few minutes. I sat next to her and rubbed a spot on her leg and arm that had no attachments and was telling her how much I loved her when her nurse came by, introduced herself and said. "I hate to tell you this because I know that you are the mom, but please, don’t rub her or speak to her. It stimulates her and we really need all of her energy to be focused on breathing". At this point I was beginning to understand more of what was going on with her. Iliana was born with a condition known as persistent pulmonary hypertension of the newborn, or PPHN. Prior to a baby’s birth the lungs are not needed for circulation and once it’s born and begins to breathe, it’s circulatory system adapts to the outside world and the lungs join in the circulatory process. In a baby with PPHN, the circulatory system continues to bypass the lungs and although the baby is breathing, the oxygen in the breathed air does not reach the bloodstream, the pressure in the lungs increases and causes distress. There is no way of knowing prior to birth that a baby will have PPHN, and its cause is usually not known. There are several treatments, the first of which is to maximize the oxygen intake by placing the baby on a ventilator that will do the work of breathing for the baby. Next, they would begin to administer nitric oxide. If this did not help then she would be taken to a hospital that would give her a treatment called ECMO. It would require surgery and basically the ECMO machine would act as an artificial heart and lungs for her, giving her lungs time to heal and recover.On Sunday night, I was by myself when I received a visit from one of the neonatologists taking care of Iliana. He told me that they had begun giving her Nitric oxide and that since the next step was ECMO, they would feel better about transporting her that evening to Shands Gainesville, where they would do the procedure because they did not do it Baptist at the time. They did not expect her to go another day without the need for ECMO. So that evening she was transported by helicopter. I remember that the nurse that was taking her allowed me to kiss her and say goodbye. Iliana spent the next 11 days in Gainesville. I had family that would drive me there each day to see her, and friends willing to make the trip should I need it, even in the midst of the hurricanes that year. For the first several days we would call and be told she wasn’t doing well. But finally there was a day when the nurse said, "she’s taken a baby step forward". It was the most wonderful news we had heard in a week. Iliana never needed to have the Ecmo procedure, which was an answered prayer. Eventually, Iliana was transferred back to Jacksonville and exactly 2 weeks after her birth, I held her for the first time. 3 weeks after that, I was finally able to bring my baby girl home. Only time would tell the challenges we would have with Iliana. She has been hospitalized numerous times. In fact, I lost count after the 5th or 6th time. First came RSV, then failure to thrive, meaning she needed to gain weight, and pneumonia. Most recently she was diagnosed with a seizure disorder for which she needed to be hospitalized several times this summer and requiring her to take 2 to 3 medications throughout the day, every day. Iliana recently celebrated her first birthday. Looking back on her first year of life I can honestly say it has been a challenge for me. I have personally been at my lowest doubting that God would do anything, refusing to give her up to the Lord in order that He might have his way with her life. I felt that in doing so, I was agreeing with Him should he choose to do something I would not want. However I have since been able to pray that and believe with my entire being that God is powerful enough to heal her body of every ailment, and that if He chose not to do so it was not because He wasn't able to, but because it is not His will for her life. Iliana’s diagnosis since birth has been that she is developmentally delayed. Meaning that she doesn’t do things that a child her age should do. She doesn’t sit, crawl, stand or walk. She does receive physical and occupational therapy each week which has helped her to progress slowly. She is able to roll over and reach out for toys when they are presented to her. There is no reason found by the neurologists regarding the ventriculomegaly or why she is delayed. At this time they are only suggesting therapy to try to see if we can get her to where she needs to be.Recently, we have been given the opportunity to help Iliana by providing her with Intensive Therapy through an organization called Therapies 4 Kids based in south Florida. They compress 7 ½ months of traditional therapy into 3 weeks of intensive therapy. They will work with her for 60 hours during the three week period and help her to achieve better muscle control through strength and endurance training, with the final goal being to see Iliana walk. We have discussed this decision with her doctors and her physical therapist, which feels this is a great opportunity for her. However, this therapy is costly and is not covered by our insurance. Each three week session costs $8500 and is done in Lauderdale by the Sea, several hours away. How many sessions will it take? I wish I could answer that. Is there a guarantee that she will be able to walk? I honestly don't know, but I do know that God's power is infinite and we trust that God has led us to this decision. Obviously, our need is great. Please pray that God's hand would continue to guide us in all decisions and pray for entire family as this will affect all of us.