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?

DSC02580

DSC02584

DSC02578

DSC02577

DSC02346

DSC02448

DSC02415

DSC02291

Dr Ajai Pic 2

Dr Ajai

Speech Therapist Barbie 2

Speech Therapist Barbie

WP_001398

DSC02708DSC02711

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?

DSC00617

DSC00656DSC00773DSC00922DSC01460DSC01468DSC01781DSC02531DSC02598

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.

DSC02649

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

XS0A9049

Connect with other parents of preemies who understand …

DSC02645DSC02638

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.

123--4962123--4864

10730769_10152558362112795_1097858179321223466_n

10730822_10152558361777795_7909061176327552064_n

10329021_10152558361867795_6918556858513460837_n10339564_10152558362682795_8526483907468049521_n10711077_10152558362617795_6679765513323565465_n

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.

NICU Support Banner-01

 

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 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.

DSC00617DSC01133DSC00656DSC02039DSC02645

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

Pin It on Pinterest