Emily Marie (2004)

Caitlyn, Matthew and Emily

Emily is our third child. When you get to the third child you tend to believe that you finally have this whole parenting thing down. Then you get thrown a curve. Emmy was the only child we had that did NOT go the to the NICU after birth. We thought that was a good sign. Then at three weeks I took her to the pediatrician for a "cold". The doctor is looking at me like I am loony for bringing my third child in for something so minor, I explain that I don't like the way she is breathing, she always sounds congested. Three hours later the bomb has been dropped, Tetralogy of Fallot.

Emily had an very difficult course, but let me tell you, she is a survivor. The truth is she was born with a congenital heart defect and even though she was 22Q that was really her only problem at birth. Even though she had a 6/6 murmur (the loudest) she was still a pink tet, which means right from the beginning she compensated very well. That first surgery, the B-T Shunt, complicated her anatomy by lacerating her esophagus (now she has GI problems), clipping off her right pulmonary artery, (no idea what kind of damage is done to her right lung that did not get blood for 72 hours) causing a stroke (damage to her brain and we got that from the neuro docs during that first admit), placement of the shunt causing a lack of blood to the left vertebral artery in the brain (contributing to the stroke and narrowing of this artery on later MRIs), The laceration of her esophagus caused barium to spill into her chest cavity, (causing scar tissue to damage her left lung) and rests permanently on her diaphragm (that does not help with the movement of said diaphragm). Somehow during this surgery they gave her Horner's syndrome also. So they leave chest tubes in her for more than 20 days, big surprise she develops blood infections and endocarditis. Because she is NPO (nothing by mouth) for more than 20 days at the tender age of 5 weeks, we spend the next year trying to get her to feed by mouth, which she was doing just fine before the first surgery.

Emily has Tetralogy of Fallot (complete repair), DiGeorge syndrome, aberrant subclavian artery, Horner's Syndrome, underdeveloped left brain due to arterial deficiencies, stroke of the left frontal lobe, and reflux. By looking at her picture or even seeing her in person you would not believe it.

Emily just underwent angioplasty to enlarge her branch pulmonary arteries. The left went well but the right side may need some work in the future. She also had a G-tube (peg) placed.

Emily took a turn for the worse after I took her to a local hospital in North Carolina to have her Peg Tube switched to a Mickey. The Mickey was placed incorrectly, and two feeds went into her abdominal cavity instead of her stomach. She wound up with severe peritonitis, and a systemic fungal infection. She spent a month in ICU on both ventilator and oscillator support. We did not think she would make it, but she survived. We spent the remainder of the summer and most of September in and out of hospitals because of fevers, vomiting, and lethargy.

We moved to Florida the beginning of September because we did not have much luck with hospitals in North Carolina, but in the end that did not matter.

Emily finally succumbed October 2nd, 2004 at just 17 months of age. The death certificate reads "massive gastrointestinal bleed / hypovolemia, unknown etiology".

I can not say enough about the doctors at the Children's Hospital of Philadelphia. They listened and understood a mothers' fears and helped me get through some of the worst. They are the angels we look for to watch over our children.