Everly's Story

Everly's Story
Everly was born at the Children's Hospital of Philadelphia. She was born with a couple of heart defects which we learned of when Liz was five months pregnant. It was a very difficult time in our lives, one of the roughest weeks we have ever gone through. In October of 2005 my mother had come to live with us due to contracting colon cancer. It was very severe and it was to the point where she could barely move or walk without any type of assistance. Liz and I decided to have her come live with us. She moved here in August of 2005 and lived with us until Oct. She past away on Oct 19th. As I was on the way to the Airport in NY to pick up my sister from California I was accompanied by some friends along with my brother from Texas who also came up for the funeral. It was supposed to be a day of great joy because it was supposed to be the day that Liz and I would go to the hospital to find out the sex of our baby. Unfortunately Liz had to go by herself in order so that I can gather up my family for the funeral. While Liz was there she learned of the horrible news that our baby had some heart defects. It was a very scary and confusing time in our lives. We could not understand this being that Liz and I were two perfectly healthy people. Almost a year prior to this Liz experienced a miscarriage after carrying for around eleven weeks. We were very discouraged and hurt. Nonetheless, we trusted in God that He would see us through what ever it was that was coming our way. Liz called me from her cell phone and after much joyful debate in the vehicle as to what the gender of my child would be, she instead had to inform me of our daughters condition. At five months in the womb Everly was diagnosed with "Tricuspid Atresia" and "Transposition of the great arteries". Feel free to click on these links to learn more about Everly's condition. As mentioned before it was a very difficult time in our lives however, nothing compared to all that we were about to go through. We had countless Doctors appointments, meetings, visits and sessions with all kinds of specialist. We had to mentally prepare ourselves for the worst that could happen which was that our daughter might not make it through this. In fact at the five month check up the Doctors told Liz that she would most likely not make it and if Everly was born she would most likely die shortly after. God had other plans. Everly was born on March 1st of 2006 at 5lbs 15oz. She screamed her brains out! The doctor allowed us to hold her for a quick couple of seconds and even gave me a second to snap a picture of her. They took her off to a more private room just in case she needed better attention for her condition and should anything unexpected happen they would be in the necessary place already. I was a proud father, as proud as a father could be. Liz and I are forever in debt to the many Doctors, nurses and surgeons who attended to Everly while at CHOP and even here near our home town. Everly remained in the hospital for the first couple of months after she was born. Liz and I were unable to hold Everly for the first week or so. We held her for a few seconds each on her way into surgery. She was to receive a procedure called the "Norwood Procedure" This would be a series of surgeries (three major surgeries) over the course of months and years. So far Everly has undergone the first two procedures. We consider these procedures the "major" procedures because the truth is Everly has undergone more operations than this. Everly was also born with a severe case of acid reflux which would not allow her to keep anything in her stomach. We had to have another procedure which would bypass her stomach and place the food directly into her intestines where she was less likely to throw the food back up causing aspiration (food going into her lungs). So about a month in a half in the hospital Everly was given an operation in which they placed what's called a GJ tube (Gastrojejunal) in her stomach. (To see what this tube looks like just type in "GJ Tube" in the Google search engine and click on images) In short, after the tube goes into her stomach it splits off. One portion of the tube goes into her stomach (this is where the meds go via a syringe) and the other portion of the tube went into her intestines (this is where the food from a pump Liz and I carried went, bypassing the stomach). To make a really long story short Everly has gone through countless operations and procedures. Recently she has gone through a procedure that has allowed us to remove the GJ Tube and replace it with a Mickey button (you can also type this into Google to see what this looks like) Mainly, the Mickey button is like the GJ tube only it is not permanently hanging from her stomach and it does not split and go to two different places within her. The Mickey button allows food to go directly into her stomach and is much like the top of a water bottle, you are able to close it when your done. In addition to the Mickey button, she received a surgery called a "Nissen Fundoplication Procedure" which is supposed make it impossible to reflux anything. She has since made the motions as though she want to throw up but is physically unable to due to the surgery. Everly has been quite the trooper over the course of this year. If Liz and I were to type all that has happened to her and us we would be able to publish a small book (I'm serious). Everly has been given many shots, taken many meds and is involved with different therapist in order to help with the integration of food to her mouth and walking and crawling. We would mainly like to thank Dr. Gayner who operated on Everly for around ten hours when the operation was supposed to only be around four hours. We owe him a great deal of gratitude amongst many of other Doctors as well. We have come to love the people at CHOP who pretty much know our daughter by name. They have treated us well and we are grateful that God has positioned us right here in the Lehigh Valley so we are close to one of the best Children's Hospitals in the country. Liz and I truly believe that there are no coincidences with Jesus and that all that is done is for our strengthening and encouragement and for his will and plans (James 1:2). Some of our family, friends and co-workers have come up to me and said "how do you guys do it?" "how do you stay so strong?". My answer to that is an easy one. "We can do all things through Christ who gives us strength" We would really like to also thank much of our family and mainly my Mother and Father in law. They have been there with us through the entire thing. Liz and I would not have been able to do this without their help. I want to thank my mother in law Graciette for all the wonderful home cooked meals she brought over or made in my home while I was sleeping because I work night shift. It is truly a wonderful blessing to wake up to all those wonderful smells. And also for the countless times she has baby sat for us at the drop of a hat when we needed her. And for taking the time to learn how to provide for Everly such as medications and feedings. It is a great work preparing all of this for Everly on a daily basis and we would never expect anyone to be burdened by it, yet she has taken it upon her self to learn these things. I want to thank my father in law John who is always fixing something in my home or making a wonderful improvement to the house. I'm learning a great deal from him and hope to continue to learn more. I want to thank him for always taking the time out to explain something to me as he is fixing it. I thank God for you both for all the giving you do on our account, we are truly grateful. Again, I, Liz, Tyler & Everly would like to thank everyone for taking the time to read this and for all those who have supported us a great deal along the way. We thank you all for keeping us in your prayers and look forward to sharing our updates of the family with you. We love you all.