littlerobbiesangels
01-16-2007, 12:58 PM
I have recently found this board and am so touched by everyone's care and concern. We recently lost our first born son, we call him little Robbie (he is a Jr.). During our 12 week ultrasound, drs found what they thought was an omphalocele (hernia of bowel) and that is where our journey began...several drs appts and weeks later, we were asked at every appt whether we wanted to terminate the pg because of several severe conditions including a heart defect, hyrdocephalus, curved spine, missing kidney...Robbie would need to endure several surgeries upon birth. We didn't know what the outcome would be but because we had endured fertility problems and fought hard for this child, we would continue to fight for him. I ended up delivering him at 33 weeks because his increasing head size due to the hydrocephalus put our healths at even greater risk. Imagine our surprise and to our delight, Robbie came into the world crying and swirming around. That was one of my prayers answered. His spinal problem turned out to be a condition where his chest cavity and some of his ribs hadn't grown with him so his little chest was not able to accomodate his growing lungs. He did not have lung capacity to endure the surgeries he needed to correct his heart defect and hyrdocephalus. He was also missing 1 kidney and his remaining kidney was too small and not functioning. Our whole family stayed with him in the NICU for the 13 hours and 26 minutes we had with him here on earth. We were able to hold him while he was still alive and touch his face, hands, toes, body and see that he looked just like his daddy! Another one of my prayers answered.
We did not know about your organization prior to his birht but someone in our family took the initiative to take lots of pictures with our $100 digital camera which we just bought the week before. We have a lot of pictures that have now become our most prized possessions. We have several pictures displayed around our house - I have one right beside my bed which I talk to every morning, throughout the day and every nite. These pictures really are something that keeps his memory alive.
Another way that we decided to keep Robbie's memory alive is through the establishment of a foundation that provides gifts of inspirational children's books to read to unborn children of expectant parents continuing on with a poor prenatal diagnosis pregnancy. We are still in the creation phase of the foundation but are looking for ways to get hooked up with people that might benefit from our foundation.
My husband and I started reading 2 children's books (one talks about heaven and the other the love between a parent and child) to Robbie starting in my 18th week of pregnancy (a time when research says babies can begin hearing sounds outside the womb). We were fortunate to be able to read to Robbie one last time in the NICU which helped us feel we prepared Robbie for heaven. We are looking to provide support to families who are enduring the unknown of pregnancy but also offer hope that families can bond and enjoy the time they have with their children before they are born.
Thanks for taking the time to listen to my story.
Joanne
We did not know about your organization prior to his birht but someone in our family took the initiative to take lots of pictures with our $100 digital camera which we just bought the week before. We have a lot of pictures that have now become our most prized possessions. We have several pictures displayed around our house - I have one right beside my bed which I talk to every morning, throughout the day and every nite. These pictures really are something that keeps his memory alive.
Another way that we decided to keep Robbie's memory alive is through the establishment of a foundation that provides gifts of inspirational children's books to read to unborn children of expectant parents continuing on with a poor prenatal diagnosis pregnancy. We are still in the creation phase of the foundation but are looking for ways to get hooked up with people that might benefit from our foundation.
My husband and I started reading 2 children's books (one talks about heaven and the other the love between a parent and child) to Robbie starting in my 18th week of pregnancy (a time when research says babies can begin hearing sounds outside the womb). We were fortunate to be able to read to Robbie one last time in the NICU which helped us feel we prepared Robbie for heaven. We are looking to provide support to families who are enduring the unknown of pregnancy but also offer hope that families can bond and enjoy the time they have with their children before they are born.
Thanks for taking the time to listen to my story.
Joanne