Parent2Parent: Mariann

How many kids to do you have? 1

How many kids do you have with a NICU jo­­urney? 1

How long was the stay within in the NICU­­? 1 month 2 weeks

Where did you draw strength from while i­­n the NICU? I prayed- a lot! I literally had conversations with God.  My leaned on my family for support, strength, and help as well.

Was it a song,­ ­A Scriptu­re,­ ­A quote ? Can you share it with us­? ­ I was told my son would be in the NICU for the rest of that year and to prepare for a long road. So, I created a schedule and everything I did in that schedule, I made sure to do it with a positive mindset and atmosphere. I played worship music, got rest when I needed it, watched funny movies, read the Bible, and just leaned on my family (until they went back home). I tried to make sure everything was “up-beat” and “up lifting.” One of my favorite songs and scripture was “I’ll never leave you or forsake you.” Hebrews 13: 5 And the song “My Promise” By Andre Crouch.

Who ­ ­within your personal network prov­ided su­pport while you were in the NICU­ ? ­Parents, Partner, Friends, NICU staf­f?  ­My mother, my godmother, and the NICU staff. Once my mother and godmother went back to our home town, my best friends flew in to help me as well.

In what way did you feel like you ­were s­upported by them? Waking up every morning and hearing my mother and godmother in the other room, brought me comfort. Their cooking, cleaning, shopping, and being there gave me strength when I wanted to sob. The NICU staff loved on me! They talked to me, laughed, gave me advice, encouragement, and most of all – cared for my son as if he was theirs. Knowing you have people who are dedicated to taking care of your baby like that gives you a different kind of peace.  A peace that no one (in addition to God) can give you.

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Who ­ ­within your internet network prov­ided su­pport while you were in the NICU­ ? ­was there a­ ­Facebook, twitter, goo­gle plus community­ or communities? ­Onl­ine forum In what way did you feel li­ke­ you were supported by them? No one online (I didn’t know or had the mind to look up any NICU groups). There wasn’t a site or network that gripped my attention. But at the same time, I didn’t know or think to look up a network. I didn’t post anything on social media because he was so tiny and fragile.  I wasn’t ready to share with the world that side of my son.

What are some of your favorite tools, resources or gadgets that made your NICU journey easier? My Bible, discovering crafts (JoAnn’s Fabrics & Michaels), my mother and godmother.

Can you share with us a good NICU day fo­­r your ­child (a triumph)? ­ ­What was­ the day were you need support and strength?  Our triumph was coming off of room air.  The hospital gave me steroid shots when I was admitted in hopes to help make his lungs better, since I was going to deliver early.  So, when he was born, he didn’t need oxygen, but just room air. He would go up and down with it; sometimes hold his breathe and completely forget to breath. So the day he came completely off of it, I burst into tears, because I knew that was a big step for him.

The day I needed support and strength was when he had to take a few steps back. He was placed back on room air, and all of his feedings went back to the tube.  Earlier that week, he had busy days. He had his eye exam, hearing test, a shot, his first bottle feedings, and a bath.  That was a lot for him! So by the end of the week, he was back on room air, sleeping all the way through his feedings and only being fed by tube.  To overcome the little things, make huge leaps, and then go all the back was heartbreaking. Because you pray for those big steps and success so you can finally go home. I need my family and thank God they were there.

 

If you could share one tidbit with other­­ NICU parents what would it be?! Take each day and each moment one step at a time. You’re going to want to jump through the hurdles quickly so you can go home and enjoy your baby; and you will. Worrying, stressing, and being negative only breaks down your body and mindset. You must take care of you in order to continue the journey. In due time, you will bring your baby home. But for the time being, don’t stress, focus on pumping, taking care of you, getting rest, being positive, creating positive memories, and taking it all in. Just one step at a time.

Is there anything else you would like to share? Out of our journey an experience, I founded my nonprofit organization that is totally geared towards assisting NICU families.  From pregnancy to the NICU, and being discharged, I was unemployed. It was hard. Trying to pay bills and focus on your baby in the NICU was overwhelming.  So, I founded Maison Alexander Support Group Inc. – we specialize in assisting neonatal families in need during their time in the NICU.   MASG INC. understands the NICU journey can be overwhelming.  From the constant hospital visits, to transportation, breast pumping around the clock, adjusting with existing family in the home, to medical issues, bills and more.  MASG INC. provides our very own “NICU Buddy Program” along with our “Pump, Eat & Sleep” brochure, gas cards, food cards, premature clothing, infant items, and additional searches for different venues to provide for the families in need.


Reflecting on Friendships

At the moment, it has been 8  months since the lost of my son and during this season of mourning,  I am truly learning a lot about friendship or better yet the lack of there of.  It has been odd, awkward and extremely painful, having people in my life pour love, compassion and consideration into me; that only have a linear perception of me ,  versus those whom I have shared many views of my life.

Lately I find myself wondering if, I have spent my time thinking I have friends, and what I really have are associates. I have had to laugh at myself and all of “my ultimate wisdom” thought I was a pretty good judge of character, and in reality I have been truly naive.

What I have found during this time is that my family has stuck closer to me.  During this time there has been a discover of new relationships, while leaning to appreciate the ties that I was born into.   My brothers and sister text me, and my mother constantly and consistently calls me.  My father randomly sends me cards to encourage me and just to let me know that I and my husband are on his mind.

I was warned in January that this was part of loss,  that usually during a time of mourning you  lose friendships.  I would prefer just to re-categorize where people are positioned in my life, because I know I will not be here always, but while I am here, it has allowed me to see, if  the ground crumbled below me, who would throw me an rope.

I have spent this time in reflection,  of myself, who I trust with my heart, and who I allow in my “me” space.   And it is taking months, but I am getting to the point were I am not bitter, bu I am a little hurt and a bit disappointed.

Well that is all I am going to share for today, maybe more about this on another day.

Day by Day and Moment by Moment,

Estella