small update on Jennifer (Mom) and M&M (Mia and Madden)

Sorry it has taken so long for the update. There has been ALOT going on in the Marrone Family in the past few months. Since the fundraiser on March 26th the Marrone Family has been in process of moving from their home to a bigger one and packing for the move to Philli. As of April 5th Jennifer has been living in Philli at the Ronald McDonald House. She has poor cell service and we hare barely able to get in touch with her. As far as I know she is doing well, few contractions here and there but she is doing fine. Last time I spoke with Jennifer she has been to the doctor the day before and both Mia and Madden were weighing in at over 4 pounds each. Mia a little smaller than Madden but she is still a solid 4 pounds. Which is very good for her situation. She has been scheduled for a c-section for May 10th 2010 if the babies will stay in that long. Like I said before sorry it took so long for the update but its so hard to get in touch with her. As soon as I (Jennifer Snyder Mince) or Tara has spoken with Jennifer we will update more. All the prayers and support are much needed for this part of the journey. It is very close and we are all waiting to meet Mia and Madden.


*Message from Tara Surrency via the "HLHS Heart Hugs for Mia" facebook group*

I know I am slacking, yet I promise to be better!

Well it has been quite a while since my last blog entry. I apologize for being a slacker but please do understand. Remember, I am new to this. Not to mention the one million things that are spinning around me like a whirlwind. Since my last visit to Philly I have been doing a lot of thinking. I had created this blog as an open journal to share with my friends and family as well as other families that are experiencing the same scenarios in life. As I was sitting back thinking the other day I realized something. I want everyone to understand that I am doing this to share an experience with you. I do not want you to feel bad for us in any way at all. The main reason I chose to start this blog was because I wanted everyone to be able to follow our journey while I am away. I have been getting a few mixed feeling regarding this so I just wanted to clarify. If I am not able to help Mia than maybe I can help another child or parent that needs support.

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

2560 Miles Later

We are home! Yippie! Riding in a car for over 22 hours each way is no fun pregnant. I have to admit it was so worth it. I felt like we actually got something accomplished. The doctors in Philadelphia were fabulous and the most brilliant people I have ever met in my whole life. Maybe I am being quite partial due to the fact that my precious Mia's life is in her hands. We left New Orleans Wednesday Morning and arrived in Philly Thursday night after sitting in traffic through Washington DC, Baltimore and more for over three hours. I cannot believe the way people actually drive in the northeast. I think I really would need lessons. It is scary. So I know you are all dying to hear about the visit. We have gotten so many phone calls, e-mails, letters...etc on how we are doing and the latest information so here it is. It has been confirmed our precious angel does indeed have Hypoplastic Left heart syndrome. However, the delivery of the message was quite different in Philly. We had some very extensive testing done on both babies. Our day started out at 7:30am and lasted until 5:30pm that evening. We first had a fetal echo done on both babies which gives measurements of each part of their hearts to check for median growth. Madden still looked great! Mia not so great, but we already knew that right. However, God is with her and I know he is. In New Orleans we were told that they were not sure how severe the defect is or what was involved or what if any her life expectancy was. So with that said we went through two more tests. We then had a level two ultrasound in which both Mia and Madden passed with flying colors! It appears that all of Mia's other organs look great. With HLHS most children have some organ defects as well that run hand in hand with the syndrome. Then I had a fetal MRI (quite interesting) and neither one of them liked that at all. Let me tell you I have never been kicked so hard in my entire life. It is over and we are thankful it went well. Once again, good news all looked great on M & M! We then sat down with the cardiology team and met Dr. Jack Rychick. He is a world renown pediatric cardiologist. He was able to tell us that there are two parts of Mia's heart that are affected. The Left Ventricle and the Mitral Valve. He told us he believed that Mia developed HLHS due to the fact that the mitral valve became sealed or leaky, and there was not enough blood flow to support the left ventricle's growth. Her aorta was measuring about 3mm and they were happy with that. They said at 27 weeks gestation they hoped it would continue to grow larger. In her last echo, which was only 2 1/2 weeks ago the aorta was only measuring 1.5mm, so all the prayers are working. I asked if there was any hope that the left ventricle would continue to grow and he told us that he did not think that would happen due to the fact that he though she had the mitral atresia. I am still praying and hoping for a miracle. It can happen I know it. Positve thinking=positive improvement, healing and recovery. I have another appointment on March 17 in philly for all of the same tests again to see if there has been any improvement. For those of you that are not aware of what HLHS is here are a few things for you to know so that you can compare Mia's scenario: In HLHS the left side of the heart does not develop normally. All of the structures are usually small. So it is like being born with half of a heart. If untreated, shortly after birth the baby will die. The syndrome varies in child to child. No child is the same as another. It is the most serious CHD due to the fact that there is no permanent fix. They can re-route the heart and make it work but there are no definite outcomes. At CHOP, they are working every day to help make that come true and to be able to cure these children. The affected structures: The Left ventricle, the mitral valve, mitral atresia, the aorta, aortic atresia, coarctation of the aorta and sometimes an intact atrial septum (this makes it a bit more complicated). They can also have other CHD's on top of this as well it is very common for such to happen. They told us that in Mia's case all of the structures were present and that they were not small, just not working as good as they wanted. That is why they were led to believe the mitral valve was closed. He also said that the left ventricle was not that small but it was not strong enough to support the heart at this point. We are so glad that we went they were able to answer each and every question we had and they put us at complete ease. He told us that about 20 years ago all cases of congenital anomolies were classified as fatal and they have all come a very long way. He also told us there was no need to be negative because they were having such great success with HLHS. Every five or so years they make break through strides with this defect and hope to have it permanently fixed in the future. Now with that said, some children do not do so well but how do you know if you do not try. We can only pray that she is going to be with us a long time. I know she will, we wanted her too bad for that not to happen. I talk to her every night and day and tell her that she is being taken care of and it will not be long when she is born until she comes home with us. On our next visit we will meet Dr. Spray, who is the world renown pediatric cardiothoracic surgeon. He has saved the lives of many. For those of you that do not know much about CHOP is that the Norwood procedure was actually pioneered at this hospital by Dr. Norwood. I actually learned there is a movie about HLHS and how it has evolved. It is called In God's Hands. I intend on renting it. I want to learn so much about this so that I can be an advocate for other parents, as my new heart friends are doing for me. On March 14, I will be relocating to Philly for good til the two angels are here and little miss Mia is well enough to come home. So at the end of the day, they told us she statistically scored a 9/10 on surviving the first surgery. Every hurdle becomes better and better. I will deliver them by a planned c-section in the special delivery unit at CHOP so I can see her anytime I like. Her first surgery is supposed to take place a few days after she is born. They want her to transition smoothly and keep her as stable as possible. At birth they are going to give her a medication called prostaglandin to keep the fetal circulation physiology. This will enable her to remain as stable as possible. The only risk factor they forsee is that she is a twin. They need her to be as big as possible. Please play that they will stay in my belly and be as comfortable as possible until about 36 weeks. Madden measures 2.5 pounds and Mia is 1.15 pounds. They said that looked good. It is very acceptable for twin ratio about 15%. I just wish she was the bigger of the two...she needs it. So with a full day of fun at an end we left Philly on Saturday morning and drove back in to New Orleans. I have to tell you though, as we were passing through Virginia I happened to see a billboard on the interstate that read: "Jesus heals broken hearts". We drove by it quickly and I was unable to get the bible verse under it but I am almost sure it was Luke. If anyone knows please let me know. Coincidental? Well lets hope...that is the way I will end today. Keep praying. We love you. Jen, Ray, Cole, Madden and Mia.

Freezing Friday

So waking up to rain and ice here in New Orleans is no fun at all. I kept Cole home from school today just because the weather was horrible this morning. As many of you know it is Mardi Gras or "Lombardi Gras" as the city of NO has been calling it. It is gonna be a long drawn out weekend with all of the parades going on. In fact, I am trying to decide if I want to drag myself out into this miserable cold to take Cole to the parades. Keep in mind that this week is Congenital Heart Defect Awareness Week. Everyone should take a minute to educate themselves on the facts about CHD's. No one really becomes interested unless it happens to them and maybe I was one of those people but now I try to tell everyone to educate themselves. I am having some anxiety due to the anticipation of going to Philadelphia. I hope they give us long awaited good news. Everyone please continue to keep our family an your prayers.