Our love for each other and our faith has grown to levels we didn't know were possible. I cannot speak for April, but I know in my heart and mind that I would not have been able to go through what we have gone through if it wasn't for her and our Heavenly Father. For those of you that are not married... be patient. The right person will enter your life. I pray you will find someone that makes you has happy as April makes me. For those of you that are married... don't take that person for granted. Life is precious and short. Enjoy the little things in life with your spouse. We often times hurt the one we love the most..... which makes no sense, but we all do it. We all should really try hard to change that.
For those of you that are new to this blog I would like to fill you in so you don't have to go back through our past posts. In July 2009, we found out we were pregnant with our first daughter Maddy. April carried Maddy 40 weeks and 4 days. They day before April was going to be induced, April woke me up with contractions. After arriving at the hospital we found out that Maddy had not survived. After the longest day of our lives and 13 hours of labor, Maddy entered our world on March 7, 2010. At the time she was delivered we saw that the umbilical cord was wrapped around her little arm twice, cutting off her life support. She was 7lbs. 13oz., 21 inches long, beautiful normal baby girl. Nothing was wrong with her body. Our faith was tested. I don't need to mention how devastated we were and still are. After a lot of prayer, we made the decision to try to get pregnant again. We became pregnant immediately after trying, around the first part of September 2010. We were absolutely scared to death. The only thing we knew was we had carried our first daughter full term and we lost her. On December 28, 2010 during an ultrasound, we were informed that Ellie's stomach was on the opposite side of her body. We were told to come back 2 weeks later and the doctor was going to have a different senograper perform the ultrasound. We went back, had the ultrasound and were told the initial findings were accurate. Plus, they saw a leison on her lung. We were absolutely hearth broken. Skip ahead past the first few maternal fetal medicine specialist appoints in our home town, we were encourage to go to Cincinnati Children's Hospital for further imaging. Our first trip to Children's was on February 2, 2011. What a day. We were told that Ellie had Situs Inversus Totalis - all of her organs were reversed, she had 2 VSD and 1 ASD - holes in her heart, CCAM/CPAM - lung leison and one of her kidneys could not be found. Devastated. Our faith tested yet again. In the middle of May, after a fetal MRI at Children's, we were informed that Ellie's left lung had not developed. Our faith tested again. We thought, why God, why is this happening? Skipping ahead we made the decision to relocate to Cincinnati prior to Ellie's arrival so we would be close to the Children's Hospital in case Ellie was born prematurely. Ellie was born on May 25, 2011 and was very sick at birth. Three days after birth, Ellie was going on Extracorporeal membrane oxygenation (ECMO). This is a heart and lung bypass machine that completely takes over full functions of her heart and lung. She ended up not having to go on it. While the machine was setup and ready to go, she started to improve. So, Ellie's main problems since day 1 has been her ability to oxygenate and ventilate. Genetics studies were completed and there is no problem genetically with Ellie, or us, just an absolute "fluke" (I suppose that is a medical term because that is what we have been told). Statistically, two abnormal outcomes of pregnancies like we have been through is unheard of. We also found out that Ellie has pulmonary hypertension. For her this means low flood flow and high pressures to the pulmonary artery from her heart to her lung. A few weeks after she was born, a pulmonologist performed a bronchoscopypulmonologist and ENT doctors both recommended Ellie to have a tissue expander procedure. This is where they surgically insert a bag and then fill it with saline to push the heart over, freeing up the pressure on her bronchus caused by the aorta. The CT surgeon that was going to do the surgery said that he didn't think it would help. After a period of time he changed his mind and said it would help and that he would do it. Later he said again that it wouldn't help and he didn't want to do it. After 12 weeks on Ellie being in the NICU, we were told last week that based on the CT Scan that Ellie's lung has gotten worse and she will not be able to sustain life. Our faith yet again, tested. While we still don't understand why we are going through all of this, we continue to trust of Heavenly Father. I won't lie, I have cried out to God many times in frustration. But, He was been with us through the last 19 months and has blessed us in numerous ways. We hope that Ellie's life and her story will in some way touch hundreds, if not thousands of people. We pray that the Holy Spirit will work through Ellie's life to spread the good news of Jesus Christ. We know with out a doubt that Ellie was given to us for a reason, besides to bring us incredible joy, happiness and life long memories from these short few months. We know that some day in the future our family will be together. We know that Eternal Life in Heaven with our girls is going to be a much longer period of time than our time her on earth. And, Heaven is going to be that much sweeter knowing that our family will be whole!
Also, a couple of weeks ago April and I made the decision that we were not going to be satisfied with only one hospitals medical opinion regarding our daughters life. We ordered medical records and imaging and UPS'd it to Children's Hospital of Philadelphia (CHOP - the #1 overall rated children's hospital in the country, Cincinnati is #3). We know that CHOP received all the information last week and we are still waiting on them to get back with us. We pray that they will be able to help our Ellie. We will be sure to yet everyone know what they say.
During the post entry, Ellie has had another episode. She is well medicated and is not in any pain or suffering. She is currently not oxygenating as well as she has been. We have no way of knowing what the next few days or weeks will be like, but we ask that you pray for our family. I turned 35 a few weeks back and I am on the verge of burring my 2nd child. Please pray that God gives us strength and peace. We were told last week that we will most likely have to make the decision to remove Ellie's ventilator support at some point in the near future. Please pray that we know when the time is right and pray that Ellie doesn't feel pain.
Thank you all so very much for your prayers and support over these last 4 months since April started this blog. We will continue this blog into the future if you would like to keep up with us.
God Bless you all!
Matt (Ellie's proud daddy)
The 3 following pictures were taken by our wonderful friend Megan. She is a world famous photographer that was generous enough to take her time to visit with us and take some professional pictures of us. Check out her work at http://www.meganwphotography.com/index2.php?v=v1
The rest are from me.... amateur photographer
