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.
Alayne Gatto shares a brief moment of what life is like in the NICU. It is a stressor to a new mom regardless if that is her first baby or her second, or third to be admitted to the hospital preterm and have a baby born early and whisked away to the neonatal intensive care unit.
Many studies have been done to show that the stress involved in the parents during that time has caused depression, physical illness with high blood pressure, anxiety, and more.
The Gift of Life strives to be there for these parents through support from mentors that have been in that situation before. They support the families, rejoice, and celebrate the moments with them. During a crisis, they are there to bring that needed comfort to get them through that difficult time.
Every year Rosie and Marcus Moore founders of The Gift of Life, take November 17 World Prematurity Day as a day to remember their little miracle Kaleb that was born 13 weeks early at 27 weeks, weighing only 1lb 10oz and 12 inches long. They remember the almost 6 months that he lived in the Neonatal Intensive Care Unit (NICU) growing, having medical issues, and hanging on to every breath, wondering if it would be his last one. They cried, they prayed, and lost sleep for months and even years after he went home. At birth, he was only given a 5% chance of survival, while Rosie, hung on for life as well after the emergency c-section. Marcus was at a loss with his only child possibly not making it, the love of his life in serious condition following the surgery. He clung to God, but also to the song He’s My Son by Mark Schultz. He prayed those words, he shouted, God can you hear me. Somedays there was silence and the emotions overcame him because he could not stand another day going to see his son suffering.
As Rosie got better, his spirits were lifted through her encouragement, that God would not provide him a son to take him away. He grew stronger each day until the day he finally came home. This past September, The Gift of Life held their 5th annual charity gala and Rosie decided that she would put together an assimilation of what life in the NICU was like for parents. Marcus and Tisha were to perform in the assimilation together, but due to the unexpected hurricane Tisha, Mrs. Virginia International, mother of preemies herself, was not able to get out to Orlando. But because Orlando has a huge heart for charity, Karen Shriner, professional actress, and singer stepped into the role 2 days before the event and evoked emotion along with Marcus from the audience.
See some of the remarks from the guests:
“I was overtaken with emotion, I could not stop crying.”
” I already knew the story because I went through it with Marcus and Rosie, but seeing the show tonight, brought me back to that moment and I cried like a baby.”
“I never knew that parents endured these emotions.”
“I was scheduled to work and did not know that my job today was involving an event for premature babies, it brought me back to when my daughter was born 14 yrs ago, I could not stop crying and I am supposed to be working the event.”
The list went on of people sharing their emotions.
The assimilation started with founder Rosie Moore saying:
“Imagine your baby being born 13 weeks early, weighing 1lb 10oz and fitting in the palm of your hand.”
From there, The NICU awareness video played:
Then the assimilation with Karen Shriner and Marcus Moore started to the song He’s My Son” by Mark Schultz. It showed the daily fears, tears, struggles, emotions of two parents while their baby was in the NICU. That is the story of Rosie and Marcus. Florida Hospital partnered with The Gift of Life to sponsor the Isolette similar to the one little Kaleb was in when he stayed in the NICU.
Many times Rosie would be alone in the room not wanting to go home while Marcus would go to the chapel or on the other side of the room praying as Rosie hunched over the isolette still healing from her surgery, weary from lack of sleep, and hurting to see her son lying in an isolette connected to wires, IV’s, breathing machines, coding frequently setting off alarms. In this assimilation that is what Karen and Marcus are doing assimilating those moments in the NICU.
They share this story with you today not so that you can feel sorry for them or any other preemie parent but so that they can raise awareness of what is happening with preemie parents when they are in the NICU. These emotions are real and painful.
The Gift of Life needs your help, they can’t do this alone, it takes a village of volunteers, board members, and financial support to reach as many families as they can.