Many parents to be and others that are not parents ask themselves , ” how does having a baby change your life?” Having a baby is a life changing experience that compares to no other. As parents you trade late night outings for late night feedings, trips to the spa, convert in trips to the park, your once tiny designer bag, becomes a large diaper bag and your little two-seater sports car, becomes an SUV or minivan. As parents you learn to adapt to maybe earlier bed times, family centered activities and socializing with parents having babies.
But what happens when you have a baby that is a preemie? When you have a baby that is a preemie, your life will be a completely different lifestyle. You will have wake ups every three hours to feed a baby that is tube fed, vs bottle or breast-fed, you can easily lose that bond with the baby, as some tube feedings can run continuous and some can run for an hour, depending on the doctor’s orders. Due to the g-tube that the baby has, maintaining the baby in a position of lying down, maybe elevated to avoid reflux takes that bond that you could have with the baby breast-feeding or bottle feeding. You have social isolation, or as some people like to call it, a plastic bubble. You say, why so fearful of germs? Well you see, a preemie baby is predisposed to a virus called RSV, which affects the baby’s lungs and can put the baby back on a ventilator and cause death if severe. Recent studies have shown that there is an outbreak of ” EV-D68 which causes respiratory illness. The virus can be found in an infected person’s respiratory secretions, such as saliva, nasal mucus, or sputum. EV-D68 likely spreads from person to person when an infected person coughs, sneezes, or touches a surface that is then touched by others.”
Social isolation with preemie parents is common, in that you miss out on play groups, church Sunday School, birthday party attendance or having people over to your baby’s birthday party, due to their delicate health. Your friends become those that take care of your baby, your doctors, nurses, therapists and other preemie parents that know and understand their delicate health. Why do we share this with you , you ask?
Rosie and Marcus are parents of a 1lb 10oz micro preemie. Today October 13th he turned 5 years old. Yesterday his birthday was celebrated at home with his grand parents and his parents only, because he has been having on an off upper respiratory infections, causing him to be on breathing treatments and medications. As parents, we felt that we would take that precaution. He attends a VPK ( voluntary prek school) where he receives speech therapy that helps him with eating better and is around 5 other like children who were preemie and are on his same level. It is a major milestone to have him turn 5, considering where he was when he came home 5 months after birth. He had come home on tube feedings every 3 hours, 18 doses of medications per day, oxygen 24/7, 2 types of breathing treatments every 4 hours, heart monitors, multiple doctor visits per week and confined to your home, to await speech therapy three per week for feeding, occupational therapy 3 times per week, physical therapy 2 times per week and it goes on…As a result, many who knew us and were our friends, stopped being supportive, due to our lifestyle not fitting in to theirs. Friends stopped inviting us to their homes or outings because we had to cancel or decline a visit due to our child being sick. Maybe he was healthy but we could not take a chance during RSV season to expose him to the chance of getting it, for fear that it can land him back in the hospital on a vent. Many said , “oh my you turned in to a germ freak” even some family said, “you have to let him get sick and not live in a plastic bubble”. Still others just quietly drifted apart. You follow them on facebook and see their kids that you knew very well getting married, having babies of their own and wonder, wow where did the last 5 years go? Do you really have any friends?
One thing as a preemie parents that we did learn, you have to be able to say, we came this far, we cannot let anyone or anything come between our child’s health and well-being. If it means a small sacrifice of not going to a party or not having the neighborhood kids come by daily, then so be it. But what you can do as a parent, is find other parents in similar situations and connect with them. This is one of the reasons that the charity The Gift of Life was formed, to help parents connect, to be a resource for them whether financially or emotionally. Orlando lacks any support groups of this kind other than online and living in isolation with no one to speak to, is not healthy. We are so grateful for the good friends that we do have that we have known for 22 years, they have been there for us through all that we have gone through, even coming to volunteer at The Gift of Life benefit this past September 2014.
Terry and Renee, dedicating their time to The gift of Life( missing Beth, at a previous engagement)
Connect with other parents of preemies who understand …
Today October 13, 2014 Kaleb Celebrates 5 years of life, born at 27 weeks weighing 1lb 10oz, and 12 inches long, he is a happy 5 years old weighing in at 30lbs. Happy Birthday Kaleb!
How can you get involved to help? Contact The Gift of Life and see how you can make a difference either financially or volunteer wise to help today. We hope that through our own testimony, many will come to understand what life in the world of a preemie parent is and that you have a better understanding of what these parents go through daily. If you lack the words to say. sometimes just being there and listening and saying, what can I do for you today, can make a world of a difference. Don’t ask a preemie parent what can you do to help, because sometimes there is nothing that will help, but there is always something that you can do and that is better phrased.
Contact The Gift of Life:
The Gift of Life www.thegiftoflife27.org
Event Website: www.astoryoffafith.com
Facebook Page: https://www.facebook.com/thegiftoflifeorlando