Support for Eli

On September 26, 2012, we got a positive pregnancy test. At 11 weeks, we found out it was twins! At 17 weeks, we were sent to Children's Hospital of Philadelphia because doctors were certain we had Twin to Twin Transfusion Syndrome. At CHOP, we found out TTTS was negative, but Eli did have Intrauterine growth restriction, a whole in his heart, enlarged left ventricles in his brain, a heart murmur and was growing smaller. Levi also had a heart murmur, but other than that was doing great. They suggested we did a selective reduction because Eli was putting stress on Levi and we may lose them both if we didn't, but said Absolutely not, we don't "play God." We went to the OBGYN/Maternal Fetal Medicine Specialist at least twice a week until 35 weeks when the boys were delivered. Eli was born at 10:09 AM May 2, 2013 weighing 4 pounds 4 ounces and Levi at 10:10 weighing 5 pounds 2 ounces. Eli was underweight and sent to the NICU for 14 days to learn how to eat, breathe on his own and maintain his body temperature. Levi aspirated on amniotic fluid, died three times, was on a belly button IV, had to learn how to eat, maintain his body temperature, and breathe on his own and left after 13 days. We spent the next three months thinking everything was perfect, until Levi started rolling over, lifting his head, and putting weight on his feet and Eli grew more fussy and his head was noticably getting larger.
First we went to Dr. Jon's Urgent Care in Martinsville, Va, they told us he appeared to have Hydrocephalus but to go to Brenner's Children's Hospital ER.. Brenner's sent us home because our VA Medicaid wouldn't pay for the MRI without being pre-approved in North Carolina. We were then sent to UVA for an MRI, they were supposed to sedate him but didnt... a four month old, in an MRI machine with his mother holding him down... of course it showed nothing. Eli stopped waking up, was barely eating, and just wasn't being Eli so we took him to Martinsville Hospital, they immediately sent us to Roanoke. Eli was admitted Sunday, September 15th and stayed there until the following Sunday. During the week Eli went through a "fontanelle tap" where they shoved a needle into his soft spot to measure the fluid on his brain, then an MRI, he had two IVs, and he was diagnosed with Internal Hydrocephalus and External Hydrocephalus, which they had only seen on paper - never in real life. He had his first (but possibly not his last) brain surgery Friday morning and now has a VP Shunt. This is his support page ♥