Lots of craziness has been happening around here. We were approached right after we returned from Philly for our first visit about doing a fundraiser. At first I was very hesitant but I knew we needed it. I am that type A personality that needs a plan. I think this has been the hardest on me because I cannot plan anything. So the planning of the fundraiser has turned out to be a small wedding but it will be fine. I want to share a crazy situation with you....I went down to generations hall to book the fundraiser with my sister in law Bridget. Lately I had been having very strange signs happening all around me and I was not sure what to make of them. A friend of mine from high school had messaged me and told me about a book she read recently and it was dealing with signs from god and are they coincidental. The main objective of the book explains that there really are no coincidences in life they are signs from god and how to interpret them...pretty freaky huh. Well she had just read the book and she said she saw my last post about the billboard we saw on the turnpike coming home from Philly and she felt that it was a sign for her to tell me about the book! How strange. So with all this craziness happening I wanted to start telling people before they admitted me into the asylum...just kidding. So as Bridget and I make our way downtown to generations hall I tell her that last night I had a very strange dream about the girl we were going to meet. Her name was Gabrielle who actually has become a very good friend to me over the past few weeks that I have been working with her. The dream was that we were connected in a way that was strange. After two hours of event planning it came out and I felt compelled to tell her about my dream. The weird thing was that it was true. She actually has a baby named Mia. That is not all though. I am not going to go into complete detail but there was a huge connection between us. Bridget actually started crying because she knew I was serious I was and it had been really bothering me. Gabrielle's entire family has been a great help to ray and I with this event and I owe her so much more than I can give. It just goes to show the true value of a friend. She worked so hard for us and asked nothing in return. So the fundraiser is Friday, March, 26 2010 and God I cannot wait until it is over! Stressful.
I know you are all dying to hear about my last visit in Philly so here it goes. Well we decided to fly this time. Our tickets were generously donated by Anthony DeRio and family. The out poor of help has been so great that I almost am forced to believe that this is not really happening. I wanted to thank this family from the bottom of my heart. After all, you need to see what it was like pregnant with 2 babies in the back seat with two men for 22 hours! Wow do I even need to explain? So we arrived early this time in Philadelphia but still I have had no time to see the city. I recorded Man vs. Food Philadelphia to see what we needed to eat and see....lol! So I am a bit prepared for my move. So we had our appointment at CHOP on March 17 and had another fetal echo and an ultrasound. The ultrasound looked way better than a month ago! There is only a 4% difference between Mia and Madden. Go Mia!!!! We are all rooting for you and I think Madden has his own fan section on the inside. The echo went well too with Madden still in the clear. Dr. Rychick said there had been "some" growth in the vent and the aorta but take that with a grain of salt. It is not enough to support the heart by any means. Apparently, there is a threshold on median measurements and we are still under that. It is okay she is just a late bloomer...give her time. We discussed with all of my doctors, which by the way I adore. My High risk OB is Dr. Bebbington.....god I love that man. He is so sweet and has the best bedside manner ever. I am going to make sure that I bring my favorite group of people some good new orleans food..they beg me every time! I do not need to mention that I love Dr. Jack because he already knows that. We did not get to meet with Dr. Spray at this visit due to an emergency. I can understand...seriously. I am supposed to be meeting him when I move up for good which has been moved up from April 14 to March 29. I really have to be there before the 5th of April. I am going to spend time with my family as much as possible this week...I am going to miss them. The anticipation of moving to an unfamiliar place is scary but look at the cause. So many wonderful opportunities have presented in front of our families recently. It is still a secret...sorry to keep you in suspense it will not be long until you know! I know this is going to sound crazy but in such a terrible situation you have to look into the light and that is what happened. I have every reason to look around and see my blessings in life. I think I have found my passion. For everyone that knows anything about me, they know I love working in surgery and taking care of people. They also know I love children especially babies and how much I LOVE THE HEART!!!!! I have become so knowledgeable if I cannot help Mia I can help someone else. This journey has led me to so many wonderful people and places, I have no reason not to be positive. Although the anticipation is killing me, I also have a great sense of security knowing that my babies are going to be in the best place possible for them. In case you are wondering, I will be living in the Ronald McDonald house in Camden New Jersey until the babies are born and then once that happens they will move us into the Ronald McDonald house in Philly. Everyone look for the donation boxes at McDonald's next time you are there. These organization runs only on donations. Every penny helps. I am sooooo nervous looking forward to the day they are born, however I need to remember what I have prepared myself for these last few months. Even though I have had some really tough times during this pregnancy I would keep her inside of me as long as she needed because I know she is okay in there. I was thinking today about everyone that has terminated their pregnancy due to this diagnosis. I just want you to know that regardless of any financial burdens, insurance reasons or anything....this is very possible for everyone. At CHOP they guide you through every step of the way. They are not misleading in any way. Every bit of information is so real. They have been so comforting to my family in so many ways other than the diagnosis. They are always making sure other things are running smoothly. Just want you to know its possible. If you have any questions or need just to talk for support do not hesitate to touch base with me....I am here. So everyone continue to pray and I will update quicker...I swear. Keep us in your hearts...The Marrone Family
This blog is about our daughter Mia who was born with Left Hypoplastic Heart Syndrome. She has undergone 1 of the 3 open heart surgeries she will need to survive. She has a twin brother named Madden and an older brother named Cole. We are her parents Ray and Jennifer. Please read her journey as it continues to unfold. With Mia having open heart surgery at only 6 days old made me realize how quickly life can chage in the blink of an eye. Ray and I are so fortunate to be given such a precious gift to take care of. She is truly a miracle. I am happy to be who I am, to have the husband and friends and family that I have. Her smile can light up a room. She was given to us for a purpose in life and to think I almost did not get the chance to be her mom is heartbreaking to me. Thank you to everyone that prayed for us, cried with us and supported us on this very emotional and trying time that we have had so far. We cannot thank you enough....our emotions for you are beyond words. From the words of a dear friend "I do not have to figure out how God is going to solve our problem. We don't have to understand how he is going to bring it to pass....that's his responsibility. Our job is to simply believe that he will."
