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.
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!
*Message from Tara Surrency via the "HLHS Heart Hugs for Mia" facebook group*
So as I sit here tonight after spending endless days and nights at the hospital I have no clue where to start. Have you ever looked at your child and wondered if you would ever see them again? Well I have, last Wednesday to be exact. When we met with Dr. Spray that morning it was all doom and gloom. He said she was small and the larger babies generally recover better. 1 and 1/2 hours later there he was in front of me telling me she did exceptionally well and her heart anatomy looked great. He said he decided to put a sano shunt instead of the b-t shunt for Mia. He said he felt better about the situation and that he felt it would benefit her condition in the long run. As i took my first look at her, I was completly heartbroken. These babies are born fighters. The night before Mia's surgery Ray and I went to get some dinner to clear our minds before we were faced with the surgery and to just spend some good quality time with Cole. While we were waiting for our table, I overheard a couple behind us arguing over who was going to change thier babies diaper. I wanted so badly to yell and scream at them. How dare they...I wish I had Mia there to change her even if it was a million times. I see differently now. I can see that people fail to realize how fortunate they really are and how the lord has blessed them in life. Dealing with Mia's condition has changed me 360 degrees as a person. I use to take everything for granted. Every minute with Mia gives me the strength I need. God has truly blessed Ray and I with this child. I feel in my heart she is here to make a difference because he knew I would fight it straight on for her. As I roll down the hall to the Operating Room, a million thoughts crossed my mind. When I heard her cry I knew she had been sent here for a reason. I want to spend every minute with her because already I feel like she is such an amazing person. We are one week post op today. They have already moved her to the step down unit as of yesterday. Just looking at her gives us hope. We have met and became so close with some of the bravest and nicest people you would ever want to meet. I have gotten to meet all of my heart moms from facebook that guided me throughout my pregnancy. They were actually trying to discharge us tommorrow. I told them I was not ready. I feel like I need a few more days to get to know Mia. After all I was not taking care of her full time. There is so much to learn. They keep telling us that she truly is a rockstar and she looks great for a baby with hlhs. The pregnancy was so hard on us because we really had no idea what to expect from her. It was a huge blessing to be able to have our family here for support as well. The people we have met remiend us just how strong we are and how strong we have become. So when I sit here and think of Mia as I type this update, I remember that god has sent us this miracle for several reasons that are clearly identified. I am so nervous to take her home but at the same time I am overjoyed because we were unsure if that would ever happen. So as I sit here tonight thanking god for everything he has given us I remember just how powerful prayer is. If you get a chance take a look at the pictures on facebook under the group hlhs heart hugs for mia or under my personal page jennifer cordes marrone. Please continue to pray for her through this complex journey.
I hope everyone enjoyed mother's day! Hope you got to spend it with your mother and/or children! My heart goes out to all of the heart moms, mother's of children with special needs, & single mommy's who have to work extra hard! I have a couple of messages for you all from Jennifer that she asked me to share with you all...
May 5, 2010 So I wanted to officially thank everyone for the outpoor of such kind words and prayers for our family. The past week has been very trying for us. I wish I could thank each and everyone of you individually for all you are doing. Please know how much we appreciate all of your support. On behalf of Mia, I want her to know how much she is truly loved by all of you. Thank You.
May 8th, 2010 She is still doing well and recovering and resting but she had an issue throughout the night with some SVT"s. It is called Subventricular Tachycardia. Her heart rate reached 185 bpm and stayed there for over 20 minutes. They started her on a medicine called digoxin for heart function and strengthening. The doctor said that this is not abnormal but could pose a problem so we are praying it stays away. He said most children have some sort of arrythnias due to surgery or trauma from surgery so hopefully that was the case. She has had all of the lines removed from surgery so all she has is her IV for fluids but they have been decreasing that and trying to get her to eat. As all heart babies have issues eating and it may take her some time to learn to suck, swallow, and breathe all at once. For the time being she is proving us wrong everyday and doing what she is supposed to be doing. She is able to start wearing clothes and being held today so we are super excited. Please ask everyone to continue to pray and to have a look at her pics, as this is the evidence that God does exsist and truly how powerful prayer really is. We love and miss everyone and appreciate everything that everyone is doing. The outpoor of prayer and support has been so emotional during such a trying time. Everyone else is well. Please eat some seafood for us! Please let everyone know how much we appreciate the support but we are unable to respond to all of the messages we are receiving because there are so many. You can send mail to Mia through the hospitals website if anyone is interested and if anyone would like to send mail to the RMH for her I can get that address let me know.
The address is; Jennifer Marrone & Family 550 Mickle Blvd. Room 203 Camden, N. J. 08103
PS, just a reminder... there will be a benefit fundraiser for Mia on May 15th, 2010 called "Darts for Hearts." There is a link in the group to the event invite where you all find all of the info or you can contact Jennifer Mince via facebook or email at email@example.com We still do not have a date for the carwash that had to be rescheduled due to the weather but I will let you all know as soon as that is!
Thank you for your continuous support to Mia & the Cordes-Marrone Family!!! Tara Surrency
CONTINUE TO PRAY FOR MIA & ALL OF THE HLHS BABIES... Jacob, Jilly, Abby, etc. HELP RAISE AWARENESS FOR THEM!!! :)
*Message from Tara Surrency via the "HLHS Heart Hugs for Mia" facebook group*
Since the last update Momma(Jenni) and baby Madden were released from the hospital and are staying at the Ronald McDonald House. Mia is still in the CICU at CHOP. Mia and Madden are going to be tv stars!!! Tomorrow on Philadelphia's local news and "The Today Show" are coming for Mia's surgery, 5/5/10! Jenni shared all of her fellow HLHS heart moms names with the tv crews! Hopefully this be some HLHS awareness that these families have been looking for! HLHS (hypoplastic left heart syndrome) is one of these rare heart defects that unless it happens to you or someone close to you's baby, you know nothing about it! Families with babies/children with HLHS have a nickname for themselves and fellow mothers with children with HLHS called "Heart Moms." These mothers find some answers to HLHS along with strength and courage knowing their children have been and are going through these surgeries and treatments! Heart Moms are one of a kind and very special, I truly admire these women and their families for being so strong for their own families as well as a support system for fellow heart moms! What is so special about the tv crews being there for Mia's surgery is not just bc it's for Mia, it's bc hopefully this will let people know that there are heart defects out there but there are support systems and specialist and the ways to handle this type of situation and not feel alone! There are people out there more then willing to take you in to their special group and give you some comfort and assurance! If you can, watch or record the Today Show tomorrow morning! See what the Marrone Family and others are going through, and while you are looking at your healthy children, think about the ones who are a little less fortunate! Think of how can you help them raise awareness or money! Spread the word... forward on the benefit fliers to your friends & coworkers and if you can, volunteer at a fundraiser!!! The little things you do have such an impact, if only you knew!!! I hope everyone gets a piece of mind of HLHS, & Mia, Jenni, & the fellow Heart Families get some well deserved recognition! PLEASE pray for a successful surgery tomorrow for Mia & speedy recovery! She goes in for surgery at 8am, PRAYERS NEEDED!!! ♥ Also, please send us your email addresses to HLHS.HeartHugsForMia@yahoo.com so you can help us spread the word of Mia's benefit fundraisers to help raise money for Mia's surgeries & medical expenses! Don't forget, this is childhood stroke awareness month... educate yourself on it and the signs to look for! PRAY FOR THESE HELPLESS BABIES & BE THEIR VOICES!!! ♥
*Message from Tara Surrency via the "HLHS Heart Hugs for Mia" facebook group*
On 4/29/10 around 2:30pm, Jennifer went to CHOP (children's hospital of philadelphia) believeing she was in labor. After being admitted and looked over by Dr.'s she indeed WAS in labor! They prepped her around 3:30pm for her c-section & shortly after Mia & Madden were welcomed into the world. Thanks to a fellow heart mom, Danna Sanders who had just given birth three days prior to baby girl Abby w HLHS (like Mia), Danna & her husband entertained big brother Cole so Ray could be with Jenni in the delivery room. Danna is at CHOP's in the room next to Jenni and baby's Mia & Abby are roommates in NICU. Madden was sent to the NICU to be watched for a while to make sure everything was good with him. He is a perfectly healthy 6lbs 1oz baby boy! Mia was born at 5lbs 7oz and was stable at birth! Which is a very good sign for a baby with HLHS. She also isnt blue like most HLHS babies, she is a normal pink color. Since she is staying stable the Dr's say she will be able to have her first heart surgery on May 5 or 6. We will find out soon. Mia and her brother Madden are doing well in CHOP with their older brother, Cole, there by their side. Continue to pray for Mia she still has a long hard journey ahead of her.
Thank the Lord that she is doing well now! Jennifer Mince
*Message from Tara Surrency via the "HLHS Heart Hugs for Mia" facebbok group*
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."