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.


Parent2Parent: Shana

 

 

 

 

 

 

 

 

 

 

 

 

 

 

How many kids to do you have? I have one living, Shiloh

How many kids do you have with a NICU jo­­urney? Just Shiloh

How long was the stay within in the NICU­­? 94 Days, from May 8, 2012 to Aug 9, 2012

Where did you draw strength from while i­­n the NICU? I knew that I had to just make goals (not necessarily, Shiloh’s goals like eating, breathing, etc.) like, I will get through today without being negative or I will think of 5 things that are better than they were yesterday.

Was it a song, ­ a Scriptu­re, ­ a quote? Can you share it with us­?­ Three little Birds by Bob Marley was my mantra, and the song I would sing to Shiloh daily as I held her, “Don’t worry about a thing, cuz everything little thing will be alright”

Who ­ ­within your personal network prov­ided su­pport while you were in the NICU­? ­Parents, Partner, Friends, NICU staf­f? ­My family tried to help, but they were at a lost, so many times I had to find the strength within myself. Luckily, my Gramma called me daily and would help keep my spirits up.

In what way did you feel like you ­were s­upported by them? Lots of laughs, and encouraging words

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? I really didn’t spend much time talking online during those 3 months, I would get on long enough to post updates but I was too consumed with Shiloh.

What are some of your favorite tools, resources or gadgets that made your NICU journey easier? Journaling was the best for me, I knew I could write anything and everything without judgement and then later go back and read it and know that I got through another day.

Can you share with us a good NICU day fo­­r your ­child (a triumph)? ­ What was­ the day were you need support a­nd stre­ngth? The best day was obviously the day they said, “You can take your daughter home”, but we had lots of good days, because to me any day that she continued to fight for her place on this planet was a good day.

The worst day was the day we almost lost her. On Thursday, June 21st, I walked into the ICN to a very noisy room, and the sound of every alarm on Shiloh’s monitors going off, but before I completely freaked, I decided to check on her to hoping that is was just a machine malfunction. As I walked to her crib I notice my baby girl was ashen blue and was not breathing at all. Of course I immediately began to freak out. I tried to stimulate her in hopes that she would take a breath, fearing that my little girl was already gone, and yelled out to the nurse that my baby was blue. The nurse came running, tried to suction out her mouth, and then said the words I was hoping I wouldn’t have to hear, “Get her team in here, we have a code blue”.

I ran to the hall and watched as a team of 7 people rushed to my baby’s bed. I then leaned against the wall, praying like I had never done in my life, just saying over and over, “God, please do not take my baby girl, I will do anything just don’t take her”. About 30 seconds later I heard the most beautiful sound in the world, my little baby, crying. The charge nurse came out, and told me I could go in and hold her, but she had aspirated on some formula, and would probably need some breathing support.

As I held my little Monkey, I felt a love that I have never felt before (don’t get me wrong, I have loved her so incredibly since the second I found out I was pregnant, but after feeling like I was going to lose her, my love only grew stronger). To feel her tiny breath against my cheek, to hear her baby cries, I felt like I was given a second chance, and I guess in a way I was.

Then the questions set in. How long had the alarms been going off? Even though it was a little noisy, why had neither one of the nurses heard her alarms? And the worse question, what would have happened if I hadn’t walked in when I did?

After x-rays, we found she had collapsed her left lung and would most likely have pneumonia. She was put on a ventilator and was given morphine for the pain. It was then in it all hit me again. My 6 week old baby girl, who had been healthy since the day she was born at just a little over two pounds, now had a collapsed lung and pneumonia, because of a careless mistake.

I sat there, crying again, feeling helpless. Wanting nothing more than to wrap her in my arms and hold her, knowing that I couldn’t because she was on so many tubes, and had multiple IVs. I just sat there staring at her swollen body, hoping she wasn’t in too much pain.

It was then that Graham and I had a chance to actually sit down and talk to her doctor. He told us that she would be getting antibiotics to help minimize her pneumonia, and that, because she probably only went without breathing for 3-4 minutes, and that she still had a heartbeat, she most likely would not have any brain damage. But because of the degree of aspiration she might have lung damage. And then the only thing I didn’t really want to hear, had I not walked in when I did, she would have probably died. That as helpless as I felt at that moment, I had actually saved my baby’s life.

If you could share one tidbit with other­­ NICU parents what would it be?! DON’T GIVE UP!

Is there anything else you would like to share? I am free to answer any questions, or talk about my experiences

 

 

 


Parent2Parent: Jennifer, Founder of Lily’s Hope Foundation

My husband, Justin, and I have two children, Lily and Aidan.  Our daughter, Lilian Hope, was born 7 weeks premature, only 2 lbs. 12 oz. and 15 inches long in July 2007.   She was born early because of preeclampsia and a placental abruption; small for 33 weeks gestational age.  She almost didn’t make it through her first day of life, but thanks to the amazing doctors and nurses at Lehigh Valley Hospital, they saved her life.  She was on a ventilator and oscillator for 7 days, had a chest tube, and spent almost 1 month in the NICU. Later she had speech and physical therapies. Lily struggled with gastrointestinal issues, failure to thrive, had surgery and saw specialists at Children’s Hospital of Philadelphia at age 5.

Additionally, our son, Aidan Patrick, was born October 2013, 3 weeks premature at 5 lbs. 2 oz. and 18 1/2 inches long. He has gastrointestinal and pulmonary issues like Lily, as well as severe allergies and asthma due to his prematurity, and sees specialists at Children’s Hospital in Philadelphia. He also went through early intervention also for physical and speech therapy like Lily.

I drew strength from my husband, my family, my faith, and from the information that was given to me by the doctors and nurses.  Lily was born in 2007, and at that time there really wasn’t much information at my disposal like there is now.  I think through all of Lily’s and Aidan’s difficult periods due to prematurity, I held onto hope.  I always believed they could get through it, even though the periods of transition and sickness were difficult.

I would like to share a few of my thoughts with new NICU parents:

  • Find the strength within yourself, your child, immediately family and friends, to get through each day in the NICU and when you go home. This is a tough time, but you can do it.
  • Be present in the moment with your new little one. Appreciate their milestones and trust in his or her progress.
  • Don’t be afraid to ask questions of the medical staff around you.
  • Educate yourself as much as possible about this new situation you are in.
  • Take advantage of all the resources available to you.
  • You are not alone. There are many families with preemies out there, and many support groups at your fingertips.
  • There is hope in all difficult situations. You can do this.

 

The Lily’s Hope Foundation supports babies, children, and their families with unexpected and urgent needs due to premature birth.