Every Heart Parent Needs One

Mia Marrone Heart Charm

Mia grace Marrone was born on April 25, 2010 with HLHS. Sadly Mia passed away on July 25th, 2010. Although her time on the earth was cut way to short Mia continues to inspire hope and create awareness.

Mia's parents, Jennifer and Ray Marrone, have made it their mission to continue Mia's fight and fight for other families affected by congenital heart defects. They've founded the Mia Marrone Heart Foundation. One of their first, of many accomplishments, is the Mia Marrone Heart Charm. Mia's Charm is a beautiful reminder and awareness piece for heart families and those affected by CHDs.

The Mia Marrone Heart Charm comes in blue or pink. You can also purchase a toggle chain to wear with your charm. The best part (other than its sheer beauty) is that this charm is a great way to help spread awareness. Everytime someone asks about your one of a kind piece of jewelry you can share Mia's story and help create awareness for congenital heart defects.

If you love the Mia Charm as much as we do, you can check it out in detail through The Mia Marrone Heart Foundation, print an order form here or by emailing a request toHLHS.HeartHugsForMia@yahoo.com if you do not have a Facebook account.

Pink Heart

Blue Heart

Heart detail on back of charm

Every Heart Parent Needs One

Mia Marrone Heart Charm

Mia grace Marrone was born on April 25, 2010 with HLHS. Sadly Mia passed away on July 25th, 2010. Although her time on the earth was cut way to short Mia continues to inspire hope and create awareness.

Mia's parents, Jennifer and Ray Marrone, have made it their mission to continue Mia's fight and fight for other families affected by congenital heart defects. They've founded the Mia Marrone Heart Foundation. One of their first, of many accomplishments, is the Mia Marrone Heart Charm. Mia's Charm is a beautiful reminder and awareness piece for heart families and those affected by CHDs.

The Mia Marrone Heart Charm comes in blue or pink. You can also purchase a toggle chain to wear with your charm. The best part (other than its sheer beauty) is that this charm is a great way to help spread awareness. Everytime someone asks about your one of a kind piece of jewelry you can share Mia's story and help create awareness for congenital heart defects.

If you love the Mia Charm as much as we do, you can check it out in detail through The Mia Marrone Heart Foundation, print an order form here or by emailing a request toHLHS.HeartHugsForMia@yahoo.com if you do not have a Facebook account.

Pink Heart

Blue Heart

Heart detail on back of charm

An Arranged Friendship by Stacey Lihn

Most of you have heard of an arranged marriage, but Zoe was in for an arranged friendship. Fair? Perhaps not. But don't "moms know best?"

Shortly after learning of Zoe's diagnosis, in utero, I went straight to the internet. I researched HLHS and found other heart moms online. Through the wonders of Facebook, I met a handful of heart moms close in gestation and delivering at the Children's Hospital of Philadelphia. Before we actually met in person, Mia's mom, Jenn and I felt like we already "knew" each other. As our friendship grew, so did Mia and Zoe's...they just didn't know it yet.

Mia was born on April 29, 2010. Zoe was born on May 11, 2010. Both born with one functioning heart ventricle. Mia, the older of the two friends, led the way. She underwent her Norwood first and set the bar high, very high. Mia was a "rockstar" at CHOP. She recovered in record time (no joke) and discharged in 3 weeks time.

After Zoe's surgery and discharge, Jenn and I communicated often (via email, texts, phone, you-name-it.) Heart mommy support knows no boundaries!

Growing up as a child with only half a heart was not going to be easy. Jenn and I realized that, and hence, Zoe and Mia's arranged friendship was born. Mia and Zoe were already being booked for Florida beach vacations and annual trips. We knew they'd need each other as they grew and faced similar experiences. They were destined to be BFFs.

On July 25, 2010, Zoe lost her friend. I met Mia on more than one occasion, but Zoe never had the opportunity. Sure, they laid in the same hospital just a few hundred feet from each other; but they were busy battling HLHS.

The day I heard the news of Mia's passing is forever etched in my mind.

Can you imagine your best friend dying? It's heart-breaking to even think about. Someday, I'll have to break the news to Zoe that her friend, Mia, died, just shy of her 3 month birthday. Despite this, Zoe will know Mia and will grow to know her twin brother, Madden.

Many of you know of Mia, or have seen this picture of Zoe, honoring and remembering Mia on her 3 month birthday, just 3 days after her passing.


Mia's parents, Jennifer and Ray Marrone, have made it their mission to continue Mia's fight and fight for Zoe and all other families affected by congenital heart defects. They've founded the Mia Marrone Heart Foundation. One of their first, of many accomplishments, is the Mia Marrone Heart Charm. Mia's Charm is a beautiful reminder and awareness piece for heart families and those affected by CHDs. Zoe already has hers which she loves (and apparently they taste good too.)




Zoe (and I) will wear Mia's Charm with pride - to honor and remember Mia and all of the CHD angels and warriors.

If you love the Mia Charm as much as we do, you can check it out in detail through The Mia Marrone Heart Foundation, print an order formhere or by emailing a request to HLHS.HeartHugsForMia@yahoo.comif you do not have a Facebook account.

And a few more from Zoe's photoshoot...




And, of course, all of this, in remembrance of Mia Grace Marrone. We miss you little one.

Give Back and Light the Way

Ask any heart parent about the moment their child was diagnosed and they can tell you, in great detail, exactly how it happened, who was in the room, how they felt, what else happened that day. One of the most difficult aspects of the heart parent journey is that moment of diagnosis - the moment when your life changes forever. There is so much to process at that pivotal point and in the days and weeks to follow. Most newly diagnosed heart parents turn to the internet for answers and information about their child’s heart condition. Hypoplastic Left Heart Syndrome (HLHS) is, in particular, an extremely complex condition and much of the medical information available online is out-of-date and speaks of hopelessly outdated survival rates and lack of quality of life for single ventricle children. As a result, many newly diagnosed parents are left feeling hopeless and very much alone, forced to make critical decisions about their unborn child without a true understanding or complete picture of how well many of these children actually do.

I, along with nine fellow heart moms, would like to reshape the outlook for HLHS infants and children. Over the last few months, we formed Sisters by heart - an HLHS support group - to provide support and resources to newly diagnosed HLHS parents. It is a way for us to give back and light the way for another family following behind us on an otherwise very dark path. We want to give hope, to give love, to give support, and to give practically. We provide care packages for newly diagnosed parents which includes many items we’ve found useful to us along our journeys (pacifiers, mini-notebooks, specialized baby clothes that allow for tubes and wires, etc.), bio sheets on our children (there is nothing to give you hope quite like seeing an older child with your child’s same condition who is flourishing) and informational booklets and fliers providing current information on HLHS and options for newly diagnosed parents.

I know many of you who read my blog have been touched by Mia’s story and the stories of so many of her heart friends and are eager to find a way to help. Here is your chance.

Sisters by heart is comprised of 10 heart moms from various cities around the United States. We are seeking help with our initiative, either through donated items or financial assistance. (Please understand that we are not yet incorporated as a 501(c)(3) – we have not ruled this out, but it is not yet something we have pursued – so any financial contributions will not be tax-deductible at this point.) We hold Sisters by heart dear to our hearts, as we realize there is a significant need and lack of direct support to newly diagnosed HLHS parents. To help Sisters by heart or to learn more about our mission, please visit our blog at www.heartsisters.blogspot.com or email sbhmoms@gmail.com with any questions.

Please, join us in giving back and lighting the path for newly diagnosed heart parents.

From our hearts to yours,

A Million Things To Say...Everyone wants to know....Miss you Little Lady

So....I am not even sure where to begin. I have been asked several times over the past few weeks if I was going to "talk" about what happened on that sad Sunday. So here goes....We woke up that morning like any other day. She was sitting in her bouncy...playing I might add. She was actually okay the entire weekend. I had been on the phone with all of her doctors in the past week...discussing the Glenn and her reflux situation. They all told me I seemed a bit anxious and she continues thriving so let it be. On Friday, they had changed her formula to Elecare, which is a prescription to see if it would help in the healing of the esophagus from the terrible reflux. It's strange because in the week before her death I kept telling ray that we could not let her sleep through the night that she had to eat. Ray kept insisting that I not bother her and to let her get her rest.
So back to Sunday....She looked okay and I went to change her pee-pee diaper and she started to cry, well she sort of had a raw diaper rash from the new formula that was causing her to have diarrhea. So I did not think anything of it. She cried maybe 2 minutes and then stopped but I noticed she was a bit grayish and she looked terribly weak in that instant. I called for ray and told him that I wanted to bring her in just to be safe. No crazy breathing ...NO NOTHING!!!

We got to the hospital and there was really no rush. They basically took their time registering us and doing the normal routine...Sat's ( that were 86) weight and height. They were walking us down the hall to the kids ER and she was up on my shoulder kicking around. We got into the room I flipped her to the cradle hold, she looked at me and coded. I screamed for the nurse and just then the doctor made the corner. They tried to resuscitate her but were unable to do so. A regular and cardiac autopsy is being performed.

So there it is. I hate to replay those events in my head. In fact, I cannot even remember the funeral...that horrible experience is the last vision that I keep playing over and over. I just cannot believe that for doing GREAT one day it is all gone. In that moment I felt so helpless. I am sure you have no idea what I am saying and all you can do is say "I feel terrible" but the truth is No one should have to endure the pain of loosing a child. I guess some people never know what to say and they always end up saying the wrong things.

"you should be thankful you have Madden", okay well she was my child too. "Luckily she was a baby and you did not have to bury your five year old", okay but that still does not make it easy.
There are so many more that I could say but it does not make a difference. It does not make me any happier to release the pain.

Everywhere you go there is always a reminder. In Madden...every time I look at him I see her. God I miss her. All of the stages of grieving hit me all at once. I get so angry to sit here and watch my 3 year old cry and ask us why we gave her away...there is no easy explanation. He does not understand..in fact I do not understand. I can still hear her cry, see her laugh. It is just hard. It seems that every time I see a baby girl around her age it tugs my heart. I know they say it is not supposed to be easy but there is no words to even begin to explain.

For the 87 days she was here she was my everything. My hope, My dreams, my inspiration and strength to go on. I would continue going every night on no sleep if I had to. She taught me so many things about life. Life is so short for fighting and selfishness. It is hard to imagine in that moment that God already had a plan from the time she was conceived. I hate that plan but maybe in time I will See why. I just think about who she could have become and who she really looked like. It is all just gone in the blink of an eye.

I am very proud of the things I have done and the awareness that has been raised for congenital heart defects. She came into this world with me and left with me. As the priest said during her service, "Ray and Jennifer are not angel makers, they are Saint makers. Mia Grace touched more lives in 87 days than many touch in 87 years. For in my eyes she is a Saint. She brought together a community and taught many about hypoplastic left heart syndrome and the importance of congenital heart defects. In my eyes she is a saint."

It makes me incredibly happy to hear him say that but my heart is broken and I want her back. There needs to be more hearts like Mia's to bring awareness in this word and help people to realize they should live for today and HOPE for tomorrow.

We miss her so much it hurts but hopefully in time the hurt will heal and we can understand. Ray and I are going to keep the Mia Marrone Heart Foundation open and do an annual fundraiser for parents who's children have congenital heart defects and need assistance. I feel this is what she would have wanted. I plan to change the blog up a bit and discuss events with the heart foundation and to talk about grief and living through this complex journey.

We have had so many messages, cards, phone calls and we are happy to see how many people have reached out in support for us. It means so very much. We just need time. Time to cry, time to grieve, time for our other 2 wonderful kids, time for one another.

The funeral and burial were so nice, if that is even crazy to say. She looked so beautiful. You just never think you are gonna end up in an office at 30 years old buying a family tomb.

So in darkness there is light and it makes me happy that I was even able to have her for 87 days. I just wish I had her for a lifetime. It was always in the back of my mind that things could go wrong, as with any CHD child but I never thought it would be me. Guess no one ever does.

I just hope she knows how much we love her and miss her. It makes me proud to be able to show Cole and Madden how much of a hero and an inspiration their sister was. It brings tears to my eyes that I know this will be the last blog entry about her. It also makes me sad how quickly everyone will forget her. Not me....never. I have to tell you that I have gotten so many e-mails and messages telling me how I was an inspiration to them and they were so proud of the journey I decided to create for Mia but in retrospect...what parent would not have. The decisions I made were what any courageous mother would do for their child.

I miss your smell and your sweet smile in the mornings and the way you and Madden laughed at each other. But mostly, I miss who you were and I know you could have done great things for the heart community and the wonderful compassion I know you would have shown others for just simply being alive. Mia Grace I promise to keep your legacy alive and take care of others through your foundation. I am even going to try to get a job with LOPA because I value the importance of organ donation. Without you I would have never known. You have opened my eyes to a whole new world, one with a lot more compassion and selflessness and I thank you my love. It is so strange how the greatest song can turn terribly sad in an instant. I think of you everytime I hear Temporary Home.

So with a heavy heart and my closing entry about Mia...I love you baby girl and I miss you dearly I know your doing big things in heaven. Take care of all of your heart buddies and keep them free from hurt. We love you so much...Mommy, Daddy, Cole and Madden.

Pink for Mia!

Please wear pink tomorrow in memory of Mia Grace Marrone - it is her 3 month birthday.

...She fought a courageous battle against HLHS in her short 87 days of life.

You can easily participate in making this memory for her parents.

Let's show her parents, Jennifer (Cordes) & Ray Marrone, how many lives a 3 month old can touch!

Take a picture of yourself wearing pink (shirt, outfit, headband, tie, etc) - include your kids, dog, cat, entire family! You can choose to hold her name written on a piece of paper or you can get creative and spell it out however you like... take a picture of that, too! Please just participate!

Please email all photos to PinkforMia@gmail.com

{All photos will be assembled in a photobook}

Please invite ALL of your friends, regardless of whether or not you know this family personally - let's make this HUGE! Post it as your facebook status, tweet about it, blog about - just get the word out!


*** If you're on Facebook, here's the event ***

Thanks for helping create a memory!

Mia Grace Marrone

Mia Grace Marrone
April 29, 2010 - July 25, 2010

[this is L, Jenni's friend, posting on behalf of the Marrone Family]

It is with a very heavy,
aching heart that I tell you

sweet Mia
earned her
angel wings

on Sunday, July 25, 2010

She now rests safely in the arms of Jesus

Her once
broken-heart
is now whole

She has a
perfect heart

Please pray for the Marrone family in the coming
days, weeks and months.

Please pray for Jenni and Ray
as they grieve the loss
of their sweet daughter

Please pray for big brother Cole
who is only 3 and having a very
difficult time understanding what
has happened to his
"Mia half-heart Macaroni"

Please pray for her
twin brother Madden.


Mia's Celebration of Life service
will take place on

July 31, 2010
9am - 1pm
Jacob Schoen Funeral Home
3827 Canal Street
New Orleans, LA 70119

Please contact
PinkforMia@gmail.com
if you want to send your love to the family
via mail carrier

Diagnosis of Congenital Diaphragmatic Hernia - The Children's Hospital o...

My Little Guy High in The Sky/Random Things

So First I am dedicating the month of July to my nephew Brian Mince Jr, who would have been turning 4 this month. Jennifer's pregnancy with Brian seemed normal until the day he was born. He was born blue and had to be resuscitated to breathe. He fought very hard. Unfortunately, Brian was born with CDH. Congenital Diaphragmatic Hernia. It is a very serious complication when children are born with this type of defect. So when he was born blue, and the team began CPR they ruptured his only lung that was working correctly. When a child has CDH, which ever side of the body it occurs on, the lung usually does not develop and pushes the other organs around it upward. So this month I am dedicating to him and his family. His mother Jennifer has been so strong and such an inspiration in my life. When we found out about mia she was there with us. Supporting us at 110 percent. I want to take up a collection so that this year we can add something special to Brian Jr's resting place. Please contact me if you are interested. It would mean so much to Jennifer and the Snyder-Mince Family as well. I found this poem and I thought it fit perfectly, so this is what I want to get:

These are my footprints, so perfect and so small. These tiny footprints,never touched the ground at all.
Not one tiny footprint, for now I have wings. These tiny footprints were meant for other things.
You will hear my tiny footprints, in the patter of the rain. Gentle drops like angels tears, of joy and not from pain.
You will see my tiny footprints, in each butterflies lazy dance. I’ll let you know I’m with you, if you give my just a chance.
You will see my tiny footprints, in the rustle of the leaves. I will whisper names into the wind, and call each one that grieves.
Most of all, these tiny footprints, are found in Mommy’s heart,cause even though I’m gone now, we’ll never truly part.
Mommy, Daddy, Manda and Austin please don't be sad at all, I fly high in the sky standing so tall.
This view of you is much better than from my hospital bed, until we meet again, I think that is enough said.

We love you guys so much and as death looks us into the face everyday know with Mia we truly know what you went through.There is not a day we do not think of him.

Sweet Dreams Brian Nicholas Mince Jr.~

Random Thoughts of this week:

I am actually knocking on wood as I tell you this!! I think the Zegerid is actually working! She has started to eat way better. Not sure if it is the formula, medicine, the nap nanny but who cares. She seems to be making a turn for the better. We have a cardiology appointment on Thursday so I will update on that later.

Since the twins were born, Ray and I got to have our first night out with no kiddos!!! Yay! Even though I missed them dearly. Aunt Stacy came and watched them. I truly enjoyed myself and realized that I do need to get out more often. Being a recluse does not help the situation with Mia. I Enjoyed meeting my new friends!

This weekend is such a fun filled weekend for us! We have my dear Amanda's 7th birthday and my Little Diva Evie's 3rd birthday also followed by a Cooper get together. I am so excited! I cannot wait to catch up with all of my friends and family. This will be the first time since about March i am seeing all of them!!! I really miss all of them so very much.

Well I was able to sneak out awhile last week to get my hair done along with a mani and pedi and go see Eclipse. I am so mad that they have not started filming breaking dawn yet. DEPRESSING. I do believe that the movie, which I heard is broken into 2 movies is going to be filmed in New Orleans..well some of it anyways. I did enjoy myself very much though it would have been better to have had some company but it was not planned.

I wanted to talk a bit about the Nap Nanny. If your baby is having reflux related issues or colic this baby is awesome. I have only had it since Saturday morning and I have no idea how I have made it these past few weeks without it. Thanks so much April, you are a lifesaver! Everyone NEEDS one. They are a bit pricey but sooooo worth it.

Well we have been receiving bills almost everyday from CHOP. I bet you would not believe the prices of some of these things. Some of you have been asking where the fundraiser money is going so here goes: When the government decides that your family income is too high...I am being sarcastic as I say this...you gets NOTHING!! So we are on our own. My bill alone after insurance deductions is 13,042.98...nice huh. We are so very fortunate to have the friends we have that have been throwing us little fundraisers here and there to help out. You really have no idea what it is like to be placed in that situation until you are. Mia's bill came in at a whopping 245,000 and Maddens after insurance is 7,000. So Mia needs her glenn coming up in September and we will have to be making a large payment for that to happen. Yes, We made about 24,000 at the big fundraiser at metro however, you see how far that will take us.

The next fundraiser is on July 24, 2010 at southshore tavern on Williams boulevard. Please come!!! It is being thrown by Pablo Sanchez, Tara Surrency and Megan Knipper...thanks Guys! It will be loads of fun! We need lots of help so please come out and help us!

The song of the day is "my Wish" by rascal flatts. Make sure to listen when I post the video! Love you guys and thanks again for following our journey! Pray!

BLESS THE BROKEN ROAD (with LYRICS) - RASCAL FLATTS

Carrie Underwood - Temporary Home

GI News

So yesterday was Mia's GI appointment with Dr. Morris. He put her on a new medication called Zegerid. It is Prilosec with a buffing agent. The buffing agent caused the medicine to go directly into the bloodstream. It can be given at mealtime which is an advantage. The medicine was developed because stomach medicine in children is not always absorbed properly because thier tummy's are never empty. He kept her on the Bethanechol. So hopefully this is it! PRAY!!! If not she may have to go on perscription formula. We will all know more in about 7 days. The twins had thier immunizations yesterday and they did well. No fever or side effects. You will also notice that I posted 2 music videos on the blog. My cousin told me about them and I feel like my fellow heart moms can relate to them. Jesus take the wheel is how I have learned to have to live life. It is hard to live life so uncertain. I am gonna post one more from carrie underwood...please watch it. It talks about how this is our temporary home. Great perspective for heart parents. Well the kids are screaming time to run. Oh I forgot....I wanted to thank all of my friends that reached out to us last week with all of the reflux advice. You saved me from insanity!!!

Celine Dion A Mothers Prayer Lyrics with pics

Carrie Underwood - Jesus, Take The Wheel

Reflux is ruining my life...oh and Mia's

So yesterday was our fourth cardiology visit with Dr. Young. She has echo's and ekg's every 2 weeks. The echo looked good with no change since sugery...thank the lord. Mia is having a complication caused by the norwoord with her tricuspid valve which is between the right artium and right ventricle. What happens is since the sano shunt was tacked into the right vent it puts a bunch of pressure on the right side of the heart which is what happens with hypoplast..kinda comes with the territory. The right side is working so hard that it expands to allow for more blood flow through the heart. Then normally with the glenn when the shunt is removed, it shrinks back up a bit so there is less backflow through the valve. So her tricuspid is termed "leaky". They claim from her echo after surgery there has been no change. Dr. Young said it is mild and he does not se a problem arising from this as we approach the glenn. If the glenn does not help the valve at all she will need valve work done during the fontan, which may cause her recovery time to be longer. This "could " potentially cause heart failure so it is being watched under a careful eye very closely. The heart function...squeeze everything else looked great according to Dr. Young. Thats great news for us. With a sano shunt around 8 weeks is where things start to happen. While we are battling this new enemy REFLUX...Mia continues to climb the growth chart...not sure how but is weighing in at a whopping 9 pounds 1 and 3/4 ounces...YAY Petunia Piggie!!! Not sure how you gain weight when you refuse a bottle at every feeding but okay I will take it. Dr. Young said as long as she is climbing the growth chart and not staying on somewhat of a level we will avoid any intervention. I hope they can find a medincine that will work quickly and give her some relief. When she eats, she takes a few sips then begins screaming then she pushes the bottle out of her mouth and refuses to eat any more at all. So stressful for us. Make me so sad to see her starving and not being able to satisfy her hunger she will only eat enough to settle herself and become content. Every once in awhile she is so hungry that she will just scream through the entire bottle (over an hour to eat) and eat all of it. A mere 2-3 ounces. It has been over 2 weeks since strting the prevacid and I see very little improvement. As long as she is gaining...maybe I should not complain. She is now in the 10th percentile for growth I laugh while saying this because Mia and Madden are still small in comparision to a normal 9 weeker. They are both still wearing newborn clothes!! I have a follow up with Dr. Morris (GI) on Wednesday morning. Today I want to ask everyone to say a few needed prayers. The first one is for Emma Scott, who Ray and I as well as my family had the pleasure of meeting at CHOP. Emma has lived in the CICU all of her life except 2 weeks when she was able to go home. Her mom christina is so strong. Emma was placed on the transplant list a few months ago and still needs a heart...like yesterday. She was placed on full life support yesterday as her heart needs major rest. She also has HLHS. Please pray that her heart comes soon so that she can begin her road to recovery and go home with her family. We love you Emma. The other is for Zoe who is one of Mia's heart bff's. At the cardiologist yesterday, her echo revealed that her heart function was mildly decreased. They were not sure if it was due to the heart muscle....pray that it is not or due to the srtain on the heart. They hope the function will resume back to zoe's nomal after the glenn...pray. They were unable to start her on any meds for heart function due to her low blood pressure. These two are true warriors in my eyes. Everyone knows how much I always talk about the heart babies and how they hold a special place in my heart. I also pray all the time for them and thier families. Well it's time to get a running start for today.

Lets Talk Craziness.......

So we all know how my updates have been lately...sporadic..hehe. Well Let's talk first about Mia who is still doing well but threw a curveball at us 2 weeks ago. Around June 13 Mia began decreasing on her feeds for quite a few days. After observing her for about a week I decided it was time to see the cardiologist. The cardiologist said her heart looked good from his perspetive but he thought we should spend a few nights in the hospital to be observed. Hypoplast kids have a tendency to turn for the worst very quickly. So we did. We stayed at Ochsner for 3 days and let them observe her and they found out that she had terrible reflux. Her eating had stopped due to esophagitis and they said it would be a progress and not a cure overnight. They put her on Bethanechol for espohageal sphincter spasms and prevacid solutabs 7.5 daily. It has been over two weeks and we are not seeing any improvement at all. Hopefully, we can get her the correct regimen of meds so she will eat better and have more precise weight gain. We ended up going on our family vacation this year to destin...very hesitant but we went and it was a great time. Ray and I barely saw each other because we had to take shifts in the room. It would have been better if we had more family that was willing to help. We kinda were under the impression that we were going to get more help..but boy were we wrong. I think sometimes people forget how good thier lives are and they tend to forget that sometimes some of us are going through something that could use a bit of downtime. This journey began 8 months ago for us and we have been running and banging our heads on the wall ever since. Does any of this scream vacation? People need to understand that our lives have enveloped a new sense of NORMAL...we and our family will never be normal any more we will have to become a new sense of normal that works for us. So the vacation...not so much. There were a few goods that helped us out so that Ray and I could go out and have dinner and re-group for round 2. So we are now back home living in our new normal reality and all is well. Mia has a cardiology appt on Friday and they both have thier first set of immunizations next week...whahhhh. So sad she has been through enough already. Everytime I turn around she is getting poked on. We are settling into our new house more and more. Just when we are completly comfy we will be back in Philly for Mia's next surgery. Which I hate!! I am getting those butterflies all over again in anticipation. Since I opened this blog as my "open journal" for friends and family I have a few things I want to discuss. Lately, I have really been realizing how different my life is and is going to have to be for the next few years. I am wondering if all of my friends and family realize how much we miss them and doing things with them. We were the family that never stopped always going and hanging out with everyone. I would never change this for anything...and I want to stress that this is not for pity it is simply how I am feeling. This has been a whole differnt ballgame...with 2...wait 3 kids and with mia's heart all together. I almost feel bad wanting to get away for a few hours I feel like i should be with her. Anyway enough sadness...i am super excited for the show Boston med coming on. They are having a show with a baby boy, sam who was born with HLHS and they followed his mom through her pregnancy. The awareness is bittersweet!!! If you have a friend or family menber on this journey...be supportive...talk to them. They are crying inside hoping that for one second they will wake up in reality and the word death will not consume them. I miss my life, my friends, my family...but I love Mia A lot and I am keeping this to show her when she is older how much I fought for her. I hope all my other heart moms are well and each one of your children holds a dear place in my heart. Enough for today...I need to buy my tissues for tonights BostonMed!

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*