How Do You Celebrate Christmas

With all the Christmas rush of gifts, parties, dinners and last minute shopping, it is a wonder that we can all remain sane trying to get everything organized.  But for some people, none of this excitement will be fulfilled because they are dealing with something that has taken a much larger priority.  Parents that have babies born premature in the Neonatal Intensive Care Unit (NICU) don’t get an opportunity to celebrate Christmas as you or I would because their baby is struggling to survive in the NICU.

Imagine that the greatest joy of celebrating your baby’s first Christmas and you have to celebrate it in the NICU.  This is why the Christmas Bear delivery to NICU’s in Central Florida started.  The Gift of Life delivers Christmas bears that are knitted by the senior citizens of The Good Samaritan Village every year so that we can bring a little cheer to each and every parent and let them know that someone is thinking about them as their baby is recuperating.  The Gift of Life also provided knitted Santa hats for the babies to wear on Christmas Day.

Getting the bears and hats ready:

This year The Gift of Life was able to donate over 150 bears to the NICU at Florida Hospital, a few parents at Winnie Palmer, parents staying at Ronald McDonald House with babies in the Winnie Palmer NICU, and to a few NICU parents in the state of Washington, Virginia, New Jersey, California, Georgia, Tennessee, Oklahoma and Ohio. We were also able to donate this year over 600 Care packages to families in the NICU’s and those staying at Ronald McDonald Houses and individual families asking for support across the country. We can only do this through the donations of our sponsors and donations that come in to help with the packages and postage to send out the care packages.  We were also able to donate this year over 600 Care packages to families in the NICU’s and those staying at Ronald McDonald Houses and individual families asking for support across the country.

Words from a preemie parent:

My son Emerson is a current patient at Florida hospital in the NICU. We received your teddy bear and it brightened our day.

Thank you so much for your kindness during this difficult time.

Delivering Bears and Hats to the Florida Hospital NICU

Delivering Hats and Bears to Parents at Winnie Palmer NICU

Delivering Hats and Bears to Ronald McDonald House for parents of preemies who are at Winnie Palmer NICU.

Watch as we deliver to Florida Hospital NICU the Love Bears this year.  Celebrity singer Jody McBrayer, dedicated this special song to our families when he sang at our Charity Christmas gala this past year.

A big thank you to our volunteers Keitra Robinson, Jackie Pettit, Marcus Moore and  Child Life Specialist Summer Bernath and our digital storyteller Bruce Reynolds.

A big thank you to Jody McBrayer for coming t our annual Gift of Life Charity Gala and dedcating this song to the babies.

Merry Christmas

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Visit www.thegiftoflife27.org

For the First Time

Do you ever wonder about your baby and when he or she will be born? Do you think about that special moment when you get to hold the baby for the very first time?  It is the most amazing feeling.  The smell of a new baby, the cuddles, the smiles when they are sleeping, the coos and of course there are those cries of hunger pains, wet diaper, gas or just hold me.  But oh such wonderful feelings.  As I looked around this weekend while I was out with my family at an October festival at all the new babies and their mommies, I started to remember back to when I had my son Kaleb.

I longed for the day that I could hold him and see him smile, coo and yes even cry for something that he needed and Mommy could supply.  That day came when I had Kaleb, except he was born unexpectedly, 13 weeks early.  He was taken from me and I never saw him until 2 days after he was born.  We were both in critical condition.  I mustered the strength amongst a painful vertical c-section, heavy pain medications, and uncertainty of life, to get to the NICU where my son lay in an isolette connected to what seemed like hundreds of wires.  What was happening I thought to myself.  I wanted to hold my baby, but he was much too fragile to do that.  I cried for hours as my husband comforted me and let me know that he will be okay, we just had to have faith and pray.

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Day after day, we made the journey to the NICU, even after I had gone home without my baby to see him fighting for his life.  One day, as I arrived, the nurse said to me, “are you ready to hold your baby?” I looked at her puzzled wondering if I heard her correctly.  She started to explain to me about something called Kangaroo therapy. She explained how the heartbeat, breath sounds and warmth of a mother, will help the baby feel like he is still in the womb hearing those comforting sounds and it helps them recover so much quicker.  I was excited but wondered how that would work.

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It took three staff to get this done, 2 nurses and a respiratory therapist.  The nurse was quite funny and asked me to go to the rest room first because once I started I was going to be there for as long as the baby would tolerate it.  The whole process took about 15 minutes to get the wires taped, the baby settled and off he went inside my button down shirt on my chest.  In an instant the nurse pointed to his monitor and how his blood pressure and heart rate stabilized.  His breathing was not so labored.  He stayed with me 45 minutes, they were so impressed.  I had finally held my son, wires and all.

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It was scary to hear all the beeping noises, but the nurses said if you relax, the baby will as well.  I had all sorts of thoughts fluttering in my mind.  As I sit here and remember that day,  I still get teary eyed because it is a moment that I will never forget.  Seven years ago today, I held my baby for the very first time 12 days after he was born.  Today he is a lively 7 yr old and he still snuggles with mommy.123-4899-2 123-4900-2

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The first time a mom of a preemie holds her baby is so special.  If you ever hear someone tell you that, take a moment, listen to them and send them hugs, love and prayers because that mom is rejoicing inside at the very first time she is holding her baby.

 

 

 

Does Having a Baby Change Your Life

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 into trips to the par. 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?

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Dr Ajai

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Speech Therapist Barbie

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Rosie and Marcus are parents of a 1lb 10oz  micro preemie.  Today Kaleb is a happy 6 year old.    Many birthdays and holidays have been celebrated at home with his grand parents and his parents only, because he has had 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 for his protection. He attends regular school with his classmates but also   receives speech therapy that helps him with eating better and is around other like children who were preemie and are on his same level.  It is a major milestone to have him be 6 years old , considering where he was when he came home 5 months after birth.  He came 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 6 years go?  Do you really have any friends?

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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 24 years, they have been there for us through all that we have gone through, even coming to volunteer at The Gift of Life Charity galas in years past.

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Terry and Renee, dedicating their time to The gift of Life( missing Beth, at a previous engagement)

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Connect with other parents of preemies who understand …

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Kaleb is 6 years old, born at 27 weeks weighing 1lb 10oz, and 12 inches long, he is a happy 6 year old weighing in at 35lbs.

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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.

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Contact The Gift of Life:

Email: info@thegiftoflife27.org

Phone: 407-905-5454

The Gift of Life www.thegiftoflife27.org

Event Website: Christmas in the City

Facebook Page: The Gift of Life Facebook

 

A Mother’s Journey

When Rosie Moore Married her love Marcus Moore, she always imagined that they would get pregnant and have a baby or two and life would be easy.  After being married a year they decided that was the time to start their new family together.  The year went by and no success.  They visited their doctor who said hmm we shall have to start infertility treatments to help you along the way because your body has forgotten how to get pregnant after a 13 year lapse.  So reluctantly for a few months  they tried it the doctor’s way.  Rosie got to the point that she did not want anymore interventions and planned appointments.  They prayed to the Lord and said, Lord let your will be done.  Three months after treatment stopped on the Friday before mother’s day, Rosie was able to give Marcus the biggest surprise ever.  God intervened and they were expecting their first child.

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A few months in to the pregnancy after all the other trials of pregnancy, the doctors discovered that Rosie had stroke level high blood pressure and she did not have any symptoms, which worried them.  They became concerned and said immediate hospital stays were mandatory. Kaleb’s life and Rosie’s life were in danger.  On an unssupecting day while already hospitalized, Kaleb’s heart rate dropped, he had the cord wrapped around his neck three times.  An emergency c-section was needed. He had a reverse blood flow from the placenta, causing nutrients not to reach him.  He was in danger of intrauterine growth retardation.  If they left Rosie’s blood pressure elevated, he received the nutrients, but she would die, if they controlled the blood pressure, Kaleb would die.  They waited as long as they could to take him, but that one unsuspecting early morning, their greatest fears came about, Kaleb’s heart rate dropped too fast, it was an emergency.  Dr. Walker had him out within minutes in a crash c-section.  Rosie was unconscious almost 24 hours, she did not know what happened.

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Rosie and Marcus endured a 5 month stay with Kaleb in the NICU where daily doctors would say we don’t guarantee his life.  There were days that they both wanted to give up hope, but each time they thought there was no hope, God gave them strength to keep going.

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Until one day after being born at 1lb 10 oz and 27 weeks he was discharged after 23 weeks or 5 months in the NICU at 10lbs 1 oz.  What an amazing God of miracles. Notice he reversed his weight at discharge from birth!

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This is why Rosie Moore decided to put her story of faith on paper  to help support those moms and dads  that are struggling day in and day out wondering what will become of their child.  Even after they go home on medications, treatments, equipment, there is hope! Today Kaleb is 6 years old and although he only has 1 kidney and some digestive issues, the doctors are amazed at his progress and development!

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Join 27 Miracles and other Sponsors on September 10, 2015

The Gift of Life Charity Gala: Christmas in the City

This special night includes dinner, entertainment, guest celebrities, silent and live auction to bring awareness and support to The Gift of  Life, a non profit organization that offers hope, encouragement and support to parents of premature babies, and neonatal intensive care units.  Celebrating the daily miracles of premature newborns and encouraging all individuals & families through this journey.

Buy Tickets Here : https://www.eventbrite.com/e/christmas-in-the-city-the-gift-of-lifes-annual-black-tie-affair-tickets-19824370225

 

 

See Fox News Lauren Johnson Interview

https://www.youtube.com/watch?v=XUrqLB2L7eY&feature=share

See what other parents are saying about The Gift of Life:

A Letter from one Mother in the NICU to Another Mother

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 ( Neonatal Intesnive Care Unit) mother to another.  After going through this experience myself, I know how both mothers feel.

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Dear New NICU Mom,

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.

Love,

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.  On September 10, 2016, The Gift of Life is hosting an event called Christmas in the City to benefit The Gift of Life, a non profit organization offering hope, encouragement and support to parents of premature babies and neonatal intensive care units.  Your attendance and donation to this event will help many parents going through this pain and stress receive this message of hope.

Please visit our event website to purchase your ticket today and if you cannot attend, please consider a donation to the event, every little bit helps.

https://www.eventbrite.com/e/christmas-in-the-city-the-gift-of-lifes-annual-black-tie-affair-tickets-19824370225

Donations: http://www.astoryoffaith.com/#!donations/c1vud

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