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. 

jegail

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