Our 3rd Cardiology Visit/Carwash Fundraiser

So Friday was Mia's 3rd visit to see Dr. Young at Ochsner. I ran into Thalia, who is a heart mom from New Orleans that we met in Philly. Her and her husband Curtis as such nice people. Thier first daughter was actually born with HLHS and was send home undiagnosed. She became extremly ill and was brought back to the hospital. She only lived five months. She had another baby...baby curtis who was also born with HLHS and had his surgeries in philly and seems to be doing well. Mia had an echo, ekg and we met with Dr. Young. He said mia looked great. The echo was great and she is gaining weight. The little chunker weighs 8.3 pounds. He actually said she was boring and that usually kids with HLHS has things adressed at each and every visit. Lets pray she continues to stay boring...lol! Her sats were in the 90's and I questioned that because I know they are not supposed to be high but I am assuming that each child is diiferent from what Dr. Young explained and each child is assessed differently. So I am glad she continues to shine. We see Dr. Young again next week. on another note, today was Mia's carwash that was thrown by Tara Surrency and Megan Kniooer. Great Job girls. It was a huge success. We has so many generous people show up to have thier cars washed and just to give a donation. A huge thaks for all the friends and family that were there today to help ( you know who you are). Well my birthday is today...as of midnight so I am off to bed so I can get up and have a family day. Thanks again...Love the Marrone's

Shame Shame Shame

Ok so I know it has been a long time. I really have a few good excuses this time: Moved into a new house with NO internet connection, has TWINS, have a THREE year old and last but not least enjoying every minute with the babies. I wanted to start off todays blog with a few quotes. My fellow heart moms post them and they find dear places in my heart: Strength....What is strength? Strenth is knowing your child may gain her wings at anytime and never show your fear, Strength is holding back tears when the worst happens, Strength is getting through everyday and hoping its
not your childs last, Strength is supporting others who are going through the same no matter how much it hurts that they remind you of where you are in your journey and
what you have been through too ♥♥♥ Strength is smiling when others don't understand that you are crying inside. ♥♥ and "When God takes something from your grasp. He's not punishing you, but merely opening your hands to receive something better. "
When I see these it helps me put my life into perspective. When I first came home with Mia all I did was cry every time I looked at her...I still sometimes do because I cannot imagie my life without my kids. It helps me to know that my fellow heart moms feel the same. I just wonder sometimes how I was "picked" for this position. They claim God does not give you more than you can handle however, I am not sure if he sees me dying inside. Mia is still doing well and we have been home now for almost three whole weeks and moved into our new house!!!! We are settling in as much as we possibly can and loving every minute we have with the duo. It is extremely hectic with two babies and a three year old but I would not have it any other way. Mia has seen the pediatrician, who cannot believe how well she is doing and that she was dicharged after only 15 days in the hospital. We have aslo seen our cardiologist Dr Young at Ochsner who we love! We are seeing him every week. He said that children with HLHS do better under observance from the Norwood to the Glenn since the mortality rate is so high. We finally got the pulse ox machine thanks to Kacie Belanger and John and Kristie McDonald with Allstar Medical who donated it to Mia on loan for as long as she needs it. Dr. Collins, who is our pediatrician said that Madden looks good but we did have a formula change. He is having severe stomach issues poor little guy so her is now on Zantac every 8 hours. Mia on the other hand has been taken off of all her heart meds except for the aspirin every other day. She was also put on Zantac twice a day. All of her echos have looked good and so has her ekg's. Big brother Cole is doing well and loving his new siblings. We are looking at the Glenn being in September. We hav the carwash this saturday for Mia...please come out and support her. Megan and Tara worked so hard on it!!! We cannot wait for everyone to meet our miracle! Continue praying...Love, Us

Emotional Wrecks

So as I sit here tonight looking at my little diva, I feel that I am so blessed to make the decisions that I made. I could have easily listened to the maternal-fetal specialist but we didn't. Over the past three weeks, I have met so many awesome families at CHOP. You feel that they are family to you. The miraculous things I have encountered will stick with me for life. You realize how fast children can bounce back from huge ordeals that adults barely make a full recovery from. Have you ever looked at your children and wondered how long they will be with you? Most of these wonderful parents do but they try to block the memory that their kids have HLHS and spend everyday with them like it was their last. I give these families so much gratitude for the stories I have heard. These kids have had more trips to the hospital and more surgeries than anyone can have in a lifetime in their first few years of life. Tonight I think of my new family....Jake, Zoe, Curtis, Lucy, Abby, Jayden, Aryana, Jilly, and Sebastian and pray for their recovery that it is a short and uneventful one. I also want to say a prayer for a dear heart friend Laura Carpenter who was always worried about all of the babies. Her and her husband are such nice people, even though I did not have the pleasure of meeting them in person. They lost their sweet baby Gwen at just 8 weeks after open heart surgery. Tonight I saw that she had posted that it was not her heart that she had contracted an infection and became very sick very quickly. Please pray for her family, that they find peace in this situation. As I pack my belongings and realize that I will be back home in New Orleans I have so many feelings going through my head. Scared for so many reasons. I am leaving my comfort zone. I almost feel like I have known my new family forever. This entire process has put a special place in my heart. I want to be an advocate for these kids. They need help and guidance and a voice for the ones that cannot speak. I have found a new family in so many people at CHOP as well. Dr. Spray aka the man with the magic hands ...a million thank yous..words cannot express how much you mean to us. Joey McCool in PR...thank you for advocating for MIa and our family. Thank you for all you have done for us with the media coverage. Dr. Rychick...thanks for seeing something in our precious angel that you wanted to share with everyone. All of the nurses in the CICU that were so compassionate and treated our little lady bug as if she were your own...thank you. I know I am forgetting something and someone and I am sorry if I do I have been experiencing memory loss from the twins. I want to thank all of the family members that supported us through this, cried with us and took out their personal time to be here with us. For all this, we thank you. We will be home on Monday night in our new HOUSE! I cannot wait for family time. We are not going to be able to have visitors for awhile due to the risk of contamination. We will let everyone know when we are able to start having visitors. I feel badly for that because so many of you have done so very much for her and we cannot wait for you to meet her. In just the 3 weeks she has been here she has taught us so very much about life and how fortunate we are in life and as a family. She is a fighter. So for a change this is the start of our new life. Please continu to pray for her recovery at home. Before we know it her glenn will be here. Thanks for all of your support...Love The Marrone family.

rockstar MIA has left the building (hospital building) :)

FABULOUS UPDATE FROM MIA'S DADDY RAY MARRONE; Mia has been DISCHARGED FROM THE HOSPITAL as of 2pm Saturday May 15th, 2010!!! She is back at the Ronald McDonald House (in Philly still) with her Mommy and brothers, YAY!!! She has a check up on Wednesday so KEEP PRAYING bc its working!!! ♥ ♥ ♥

To all of the members of the HLHS Heart Hugs for Mia group, blog followers, & twitter followers; with out ya'lls (yes "ya'lls," we are from New Orleans aka N'awlins) support & prayers we truly believe that Mia would not have had such a speedy & successful recovery! Prayer really is powerful and Mia is living proof of that! Out of the other HLHS babies at CHOP's with Mia, she was healing quickly and reaching milestones that most HLHS babies do not at her rate! We really have a tiny little fighter on our hands so keep her fight fueled with your prayers!!! :)

We also had Jennifer Mince's benefit for Mia last night, the Darts for Hearts/Poker Run! Check out her post on the group wall to see how well they did!!! (for those here on the blog who do not have facebook, they raised $3,700.00) THANKS TO ALL WHO SUPPORTED JENNIFER MINCE'S BENEFIT & IT'S CAUSE!!! :)
Another great mini fundraiser took place last night as well! Local NOLA (New Orleans, Louisiana) cover band "Savin Face" was having a show last night and wanted to help out baby Mia so they raised $375.00 which they gave to my fundraising partner, Megan Knipper to give to Mia's father Ray! Pablo Sanchez, one of the band members, works with Ray and wanted to help out the Marrone family! He also told Megan that he wanted to help her & I with a second carwash (the first one is in the progress of being rescheduled & should be mid june for those wondering). Pablo got Megan set up with his friend from Southshore Tavern in Kenner on Williams Blvd. who will be loaning us his location for the SECOND carwash and Pablo has offered to supply Megan & I with ALL of the carwash supplies!!! THANK YOU SO MUCH PABLO & SOUTHSHORE TAVERN!!! We will keep you posted of both carwash dates as long as well as the other upcoming benefits!

As always, PLEASE KEEP PRAYING & help us spread the word of the benefits for Mia for her surgeries & medical expenses! She is one surgery down and two still to go so there will definitely be more fundraisers! Please send us an email to join our emailing list at HLHS.HeartHugsForMia@yahoo.com and help pass our flyers along!

Thank you!!!


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