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Support for little Josiah Murphy

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"Gastroschisis". The one simple word, that rocked our world! We went in to find out the sex of our baby, it was such a joyous day. By the look of the technicians face, I knew in my heart, something wasn't right. But, of course she couldn't tell me, she's not the doctor. She did reveal that we were expecting a baby boy! Josh & I were filled with excitement, but soon after, it turned into heartbreak. After our ultrasound, they took Josh, Lili and I into a room for further explanation. The doctor explained to us what was going on, and what Gastroschisis is...Gastroschisis is an abdominal wall defect occurring very early in gestation in which the intestine and other abdominal organs spill into the amniotic fluid through a hole in the abdominal wall, typically on the right side of the belly button. The opening can be surgically repaired after birth. It felt like time stopped, our hearts broke. I had never heard of this condition before & of course, I started to feel guilty. Like I had done something wrong. The doctor went on to say that I would need to immediately be seen by doctors at The Children's Hospital of Philadelphia (CHOP).
Within a couple days, we had our first appointment at CHOP. It was a long day filled with ultrasounds and meetings. They explained what was going on with my pregnancy and what would happen with our baby, once he was born. Also, they told us that they would like us to relocate to Philadelphia, as soon as I hit 32 weeks of pregnancy. They wanted me to be closer to the hospital in case of an emergency. And, at 32 weeks they would see me for check ups twice a week. Next, we spoke with a social worker to help us figure out living arrangements. The most affordable options were Hosts for Hospitals & The Ronald McDonald house. This was all was overwhelming for us. Relocating to a city that your unfamiliar with, is scary. And, this would be our second time in less than a year. (We recently moved from our hometown on Oahu, Hawaii to Cape May, NJ because my husband joined the U.S. Coast Guard)
On my 33rd week of pregnancy, we relocated to Philadelphia. We stayed with a host family, from the Hosts for Hospitals organization. It was a big change for all of us, especially for my 2 year old daughter. But, it's what needed to be done for the safety of our son. On Thursday, October 22 we went in for our routine check-up. They told me I was in labor & decided to keep me for further monitoring. I ended up giving birth on October 24th 2015.

This is our beautiful baby boy, Josiah Yutaka Murphy. He was born about 6 weeks premature. It was expected that he would be premature
because of his condition. Right after birth, they took our son straight to the NICU at CHOP. That was one of the hardest moments, so far. Not being able to hold your newborn baby, causes pain that is indescribable. The NICU is where he'll remain for now. They told us that he has severe Gastroschisis and will stay in the hospital for 3-6 months, depending on how well he does with his procedures.
As of right now, we're trying to juggle taking care of our 2 year old daughter & our newborn son. Currently we are still living in Philadelphia, with our host family. But, would like to move back home to provide some stability for our daughter. Dragging her back and fourth to the hospital, is exhausting for her. She misses being home, and constantly asks to go back. Sadly, I feel like I'm neglecting her and paying more attention to our son. My husband and I also want to move home to have some comfort during this hard time. Our home is in Cape May, NJ which is 95 miles (about and hour and a half) away from CHOP.
My family and I are just reaching out for some support with expenses that will arise during this difficult time. No amount is too little. And, prayers are very welcome. I've posted some links below that have more information on gastroschisis, the Ronald McDonald organization and Hosts for Hospitals. My family and I thank you for taking the time to read our story.
http://www.chop.edu/conditions-diseases/gastroschisis#.VjLg5VL3bCQ
http://www.hostsforhospitals.org/website/
http://www.rmhc.org
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Donations 

  • Michael Bannan
    • $100 
    • 6 yrs
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Organizer

Emily Wolfe-Murphy
Organizer
Cape May, NJ

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