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. 


Easter Egg Hunt Canceled Due To Aggressive Parents

Hello Everyone,

I posted the link for the article on 3.27.2012, but did not add any thing to go with it, so here we go! http://n.pr/H3UXBB

This was truly funny to me,   I have had the privileged to work a Easter Egg hunt for a community event, and  would love to say that parents are BRUTAL!.

Actually  I have worked several events that involve children and their guardians and have come to  the conclusion that the aggression has NOTHING to do with Easter and every thing to do with parents.  You can call it Helicopter parenting, you can call it over protective, you can call the need for parents not wanting their kids for fail and anything.  What ever you want to call it, is it is a crutch and a handicapper to our nations kids.

Is it not amazing, that the fun little Easter memory that many  of us share, hunting for eggs (hoping  all the while that you found the plastice eggs not the  real ones),and then  comparing them with friends and family to see who actually got the best ones,  has turned into a parental brawl to ensure “their baby”  gets the best eggs, or enough eggs or an egg?

During the event that I worked I lost count of the times I was cursed out for telling parents they could not enter the egg hunting zone. Nor can I count the amount of times that parents came back to get more eggs for their kids.

I hope that the day of the  family Easter egg hunt returns; where children with eyes of wonder and amazement as they discover the egg under the bush.  Or when one giggles in pure happiness that they got the chocolate egg.  All the while, family sits on edge as the 2 year old finds their very first EGG.

Wonder. Dream. Be.

Estella