The path that led me here began in August of 2005. I found out I was pregnant! The most exciting news! Neither of us expected it yet both of us were thrilled. I was no where close to being naive about the different things that could go wrong yet I was positive that this would be the one. The planning and bonding for this little one began immediately. I played music, talked, read, and sang to this little being growing inside of me. I was full of joy and anticipation of becoming this baby's mommy. Then February of 2006 rolled around and I had to schedule a level II ultrasound. We were told our little precious boy, for unknown reasons, had a major birth defect called Congenital Diaphragmatic Hernia or CDH. That day my world fell apart. The following weeks and days became a constant emotional roller coaster. I wasn't due until May 20th. We met with all the specialists that were required within a couple of weeks and then prayed I'd make it as long as possible. By March 30th, my body could wait no longer. I was in labor and not stopping. Scared and teary eyed, I was prepped for a c-section. At 11:32p.m. our little man came into the world without a sound. After several minutes, I was allowed a 3 second glance at my dark headed, sleepy baby and then watched helplessly as he was whisked away to the NICU. Unable to see him all night, I slept with a polaroid of him that a nurse took for me. I was up every half hour. When I finally did get to see my baby, it was overwhelming seeing all the tubes and wires attached to him. He was drugged, unresponsive to my touch or voice. I wanted to fall to my knees screaming and crying. I wanted to scoop my baby up in my arms. I wanted him back inside me where he was happy and safe. We spent an hour with him, caressing, whispering, praying, taking pictures, watching the nurses do their thing, wondering what was to happen next. Then the doctor came by to talk to us. Our baby's lungs wasn't responding to the extreme pressure the oscillator was pumping into them. If we allowed much more, his lungs could puncture. Our choices: Spend the little time we had with him now or say goodbye as they prepared him for a ride in the helicopter to another hospital that had an ECMO machine. We chose the latter. It was the hardest thing up to that point to say goodbye, not knowing if I'd see my baby alive again. I couldn't go with him. His daddy met him and stayed with him. I was released the next day. Almost 24 hours later, I was reunited with my son. And if I thought there were many tubes before, I was sadly mistaken. There were even more now. But at that point all I saw was my little boy. I stood by his side for hours at time, only sitting for a minute here and there. I couldn't leave him alone. I held his hand constantly, stroked his dark, smooth hair, caressed his soft skin. This was to become the routine for the following days ahead. Every day the doctors and nurses said he was stable and that was good. They backed up on the sedatives and he moved a toe, a foot, a finger, a hand...yes, it kept going until he heard my voice on day 6 and moved everything, opened an eye to find me and then tried moving his head. That was a no-no while on ECMO. So sadly we watched as they drugged our baby up again. But he heard me! And he KNEW who I was! A few hours later, we received devastating news. He developed a level 4 brain bleed. ECMO had to be removed. I asked that they not give up and do what they could. We stood by for what seemed like eternity waiting for our little baby boy to respond in any way. I watched the numbers on the screen go down steadily. I asked the nurse why his chest wasn't moving, as the doctor tried to avoid the answer in fear of upsetting me, I'm sure. She was honest. His lungs just were too small, she said. I knew then what we had to do. I said to his daddy, I want to hold my baby. And he told them to stop what they were doing. I asked that all the tubes be taken off of him so I could SEE my baby's face. We held him for about 45 minutes before he flew to heaven from his mommy's arms. We cradled him, sang to him, told him how much we love him. That was the hardest thing I've ever had to do. Because of my experience in the NICU, helplessly watching my son, I am offering my help to others now. Whether they are faced with only days, or weeks, or months, being in the NICU is a stressful time. You don't know what is to happen from day to day. You surely aren't thinking of things you could use or things you need. All you care about is that baby and being with him/her. You are not thinking of the chances of your baby not making it and what you might want for him just in case. You are not thinking of saving up on every memory because it may be all you will have for a lifetime. I want to help other families who are faced with the uncertain future of being in the NICU with their baby. I want to give them what they need, what they want....even if they don't know they need or want these things. I want to offer my support. I hope in doing this I can also spread my son's life to other's and that he can inspire others to keep fighting.
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