Who would have thought six months ago that we would be going through a pandemic that would limit or pretty much stop all our in-person family visits for support?
Our NICU families are already going through a crisis with having a baby being born prematurely, but in addition to that, being socially distant from those that can support them, adds another layer of stress.
While so many people are using zoom to chat with people and connect, our world of preemies, is a bigger concern. We are required to use HIPAA compliant telehealth services. We have to be careful of the information that we receive and share through our devices.
Our technology through the years has been advancing to provide parents with mentors that can support them through the telephone and through field visits in the hospital while the baby is in the NICU. With the recent pandemic that has spread throughout the globe, more than ever the field of telehealth has become important.
This is the reason that The Gift of Life has decided to partner with Akos Connect to bring that emotional support in a secure and HIPAA compliant way for our NICU families. Having a telehealth mentor allows parents the ability to follow up when they are not able to meet face to face. It also allows for a team approach to provide referrals to other service providers that can help the parents in the journey through the NICU and beyond.
One important time that parents benefit from our telehealth mentors is post-delivery when the baby first gets admitted to the NICU and just before being discharged home. These are scary times for parents and knowing that they have a mentor to contact them and offer emotional support and referrals to other services when available, brings much-needed comfort and a decrease in their stress level. This year with this pandemic of COVID-19, our families have been struggling more due to the forced social isolation, financial struggles, and fear of the unknown outcomes. Akos Connect is a revolutionary telehealth platform that allows mentors, case managers, and nurses the ability to provide support from their smartphone, tablet, or desktop. With flexible, 24/7 access, their cloud-based, HIPAA-compliant platform allows remote access so our mentors can virtually consult with parents anytime, anywhere.
In it’s broader definition it’s an avenue of healthcare implemented via telecommunication technology.
While the world prepares for a beautiful moment with their baby on their first Christmas, many parents celebrate in a different way. On this day 155 babies in the NICU in two hospitals are celebrating their first Christmas in the Neonatal Intensive Care Unit (NICU) because they were born too early. It is a difficult time when as a parent you are told that your baby will not be going home with you for Christmas. This is why The Gift of Life started this tradition of delivering cookies when founders Rosie and Marcus had their baby in the NICU. Through the years they started deliveiring hats and love bears that were made by the senior citizens at the Good Samaritan Village. This year they had two additional outside volunteers in the community that made bears. Thanks to these two ladies and the seniors from Good Samaritan Villahge, 155 babies in two hospitals received love bears and red hats for Christmas.
Founders Rosie and Marcus Moore along with miracle Kaleb and board member Anitra Manning delivered the hats and bears one by one to all the babies at FL Hospital with child life specialist Summer.
Winnie Palmer Hospital received their hats and bears in the volunteer office on the same day to distribute to their babies in the NICU.
There are some studies conducted on premature babies that indicate certain body language that is indicative of pain. In the study that was done by Dr. Martin Schiavenato, they used newborn babies undergoing a circumcision to determine what their expressions were at the time of a circumcision and neonates getting a heel stick. It was noted that there was not a difference in the way that the babies exhibited pain, they both showed it in their eyebrow movement and in their mouth. The neonates had a wider open mouth during the heel stick. This was one study done to show how pain was exhibited during a routine procedure. In this instance this is where the nurses can find ethical dilemmas because although the heel sticks are necessary for routine lab work, the neonates have such thin skin, that at this point the heel would be very raw and painful after multiple heel sticks throughout the day (Schiavenato, Butler-O’Hara, & Scovanner, 2011). Another sign is the hands up. It may look cute because we do not know what the sign means initially, but it does mean stop I am in pain. So these preemies are very smart despite their premature birth in letting staff know that they are in pain.
Zakk Slater radio personality from K92.3 shares his story about Baby Olivia who was born prematurely. He joins The Gift of Life in supporting World Prematurity Day by asking his listeners to wear purple to help raise awareness for premature birth.
1 in 10 babies is born prematurely according to the March of Dimes statistics. The Gift of Life provides emotional support during the crisis that the parents are enduring while they are in the neonatal intensive care unit (NICU). Being in the NICU as a parent is a stressful time and having parent mentors to give you encouragement during that time is one of the services that the Gift of Life offers to families. This is why it is important to recognize premature birth on November 17 by wearing purple and making donations. Not everyone knows what it is like to endure premature birth, but imagine this…..having a baby so small that he fits in the palm of your hand, being born 13 weeks early, and weighing 1lb and 10oz. That is the story of Rosie and Marcus Moore founders for The Gift of Life, but this is not just their story; many others endure this crisis.
When parents are in the NICU, it is a roller coaster ride day in and day out. There will be good days that the baby is doing well and then there are the days when the baby’s life is in danger because the baby’s condition has taken a step backward. Many times it is infections that will cause the baby’s breathing needs to increase so they have to remain on life support longer, other times it is surgery, making the baby’s progress unknown. It is a day to day management of the baby’s needs. This type of stress takes its toll on a parent where they lose hope on those days and they do not have anywhere to turn. Family and friends are there for the parents, but after a while, the support becomes less and less and the parents only have each other to hold on to. When both parents have lost hope and do not have a place to turn, it becomes daunting and unbearable.
As a parent of a preemie myself, I had those days and each and every time when my husband and I went out to our car we would walk saddened to the car in the long walk through the parking garage wondering what will become of our baby and how will we cope. However on those days without fail, every time we got in our car to drive home, we would listen to Z88.3 a contemporary Christian radio station that offers support to listeners through positive radio music and the song that each and every time came on was “The Voice of Truth.” The song speaks about having faith to stand before a giant and the strength to carry on. The song gives encouragement that any trial we face God has the last say. We took that song to heart and each time we received bad news remembered it at the very moment the bad news came and we would listen to it on the radio when it came on. We had nothing else but our faith to hold on to.
Regardless of what your religious beliefs are, this song will encourage you through the difficult times.
It was such a powerful song, that it was performed at our charity gala twice by two different performers to give hope and encouragement to the preemie parents attending that year.