The Gift of Life | The Gift of Life 27

Supporting Families from a Distance

by Rosie | May 26, 2020 | Telehealth

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.

Contact us today to get started with your telehealth mentor. Our telehealth link https://medical.akosmd.com/#!/room/thegiftoflife27 is only available by appointment. Contact us today to receive support https://thegiftoflife27.org/preemie-services/ or call 407-905-5454.

A Letter from One Mother in the NICU to Another Mother

by Rosie | May 12, 2019 | Mother's Day

As we approach Mother’s Day and you start to think about what a mother is, what your mother did for you and how you can make someone’s mother day special, this letter came to my mind shared by a fellow NICU( Neo-Natal Intensive Care Unit) mother to another. After going through this experience myself, I know how both mothers feel.

I recognized you the other day. You came out of the NICU, your husband right behind you. You walked slowly, like maybe you had a c-section last week, but you didn’t still look pregnant. You were both crying softly.

You looked exhausted. I knew that look. My baby and I had to meet someone in a NICU waiting area at our city’s children’s hospital for a research study. You saw us sitting there in the waiting area. You looked at me. I smiled a sad smile at you and you returned it.

What I wanted to say, what I tried to say in that sad smile, was this:I know how it feels. I was you eight months ago.I have cried those quiet, uncontrollable tears – on a good day by NICU standards – as I put my tiny son back in his incubator after a kangaroo care session, carefully juggling wires and tubes, nestled him in, put a fleece blanket over the box to keep the light out. Watched the monitor to make sure the numbers indicated that he was comfortable before I left. I, too, hesitated before I smoothed the last corner down, peeked through the plexiglass and choked up as I whispered – goodnight, my baby, I love you, I will see you soon.

I have walked that slow, heart-wrenching walk, away from my sweet tiny baby. Pain in my abdomen, where a baby should still be, halting my steps. Crying, not sure if I’m embarrassed for a stranger in the hospital to see my tears, or if maybe crying in a hospital is what people expect, or if I don’t even care.

I am so sorry I am here with my healthy infant, confronting you right here as you leave your baby behind for now. My gargantuan baby (to you anyway, I know) weighs 15 pounds and 10 ounces today. Five times his birth weight exactly. He is healthy and normal for his adjusted age. No more oxygen, no more wires, no medications.

He didn’t even go to the doctor at all in April. I know he looks like a freak of nature to you. Sometimes even I can’t believe this is the same baby who could curl up into a little ball under my cupped hands. That I watched with delight and thanksgiving as his stick-like limbs got chunkier and his little belly became roly-poly and his eyes went from murky blue-gray to clear blue and his ears grew cartilage that makes them stick out.

Your little baby is perfect. How big is your baby? I want to ask. Actual and adjusted age? How is she doing today? Were you able to hold her?

When I smile at you, holding this giant baby, I want to tell you that I hope with all my heart that your baby will be fine too. That the fear slows down as time passes. And if your baby does need oxygen, wheelchairs, braces, monitors, tubes, I want to tell you that a gift of the NICU is that now I can look past the medical devices. If that is what your child needs when I see you in public in a year or two, I will see your beautiful child, not his equipment.

New NICU mom, in the glance we shared, I just wanted you to know that I’ve been there. This healthy baby on my lap has been where your baby is. We know how much it hurts. It’s okay that you’re crying, NICU mom. Your journey is hard. Sometimes you have to cry. Let me share your burden for a moment. I know how to carry it.

– A recent NICU mom

This letter just brings tears to your eyes. This is what The Gift of Life is trying to do for NICU moms and dads and the healthcare workers that day in and day out take care of that precious bundle of joy.

Making Christmas Memories in the NICU

by admin | Jan 1, 2019 | Christmas

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.

If you are interested in volunteering with The Gift of Life, please contact our office 407-905-5454 or email us at info@thegiftoflife27.org. View a listing of our volunteer positions at https://thegiftoflife27.org/get-involved/

Merry Christmas and Happy New Year from the team of dedicated staff and volunteers at The Gift of Life!!

Stop I am in Pain

by Rosie | Nov 17, 2018 | Prematurity

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.

#worldprematuritydate2018thegiftoflife

The Gift of Life www.thegiftoflife27.org

Schiavenato, M., Butler-O’Hara, M., & Scovanner, P. (2011, January/February). Exploring the association between pain intensity and facial display in term newborns. Pain Res Manage, 16(1).

Never Lose Hope

by Rosie | Nov 15, 2018 | Inspiration, Preemie Stories, Prematurity, Rosie Moore

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.