Tuesday, August 10, 2010

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.

Wednesday, July 28, 2010

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!

Tuesday, July 27, 2010

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

Tuesday, July 13, 2010

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!

Thursday, July 8, 2010

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

Saturday, July 3, 2010

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.

Thursday, July 1, 2010

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!

Sunday, June 13, 2010

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

Thursday, June 10, 2010

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

Friday, May 21, 2010

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.

Sunday, May 16, 2010

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*

Wednesday, May 12, 2010

Mia Grace aka Rockstar Mia or the Little Diva.....

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.

Sunday, May 9, 2010

Messages from the mommy of the dynamic duo herself, Jennifer Marrone!!! :)

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 jennifer_mince@yahoo.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*

Tuesday, May 4, 2010

Mia's 1st Surgery

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!!! ♥

Thank you!!!


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

Sunday, May 2, 2010

THEY ARE HERE!!!!!


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*

Monday, April 19, 2010

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*

Wednesday, March 24, 2010

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

Monday, February 22, 2010

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.

Friday, February 12, 2010

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.

Thursday, February 11, 2010

The Beginning of our Journey

So the story begins whens I am 23 weeks pregnant and I go in for a routine ultrasound. I am having twins so they have been taking extra precautions seeing me and observing the babies every two weeks. Two weeks ago while I was there the ultrasound tech told us that she was not able to get a clear visual of Mia's heart for the past few weeks and she wanted me to be evaluated by a maternal-fetal medicine doctor. According to her and my doctor we would rather be safe than sorry. So without trying to be upset, I calmly walked next door to the doctors office where my Mom works and burst into tears. I just could not get past the part where there actually could be something wrong with one of my babies that I had asked God for so long to give us, which was a battle in itself. The maternal-fetal medicine doctor had agreed to fit us in that day so that I would not have to go home and wonder what if. On this day I forget to mention that my husband is at home with our 2 year old who is sick and needs to go to the pediatrician. With me being alone my mom says that she is going to take the rest of the day off and come with me so that I do not have to be alone. Well thank God because I do not know what I would have done had she not been with me! My appointment was supposed to be for 1:00pm. Well it was one of those hurry up and wait situations...you know the ones that you are like watching paint dry. Although, I felt so guilty to complain after they had been willing to fit me into their busy schedules. We finally went in at about 3:30pm and had a very extensive ultrasound that was performed by the tech and then the doctor. After it was all over he said four words that have made a huge imprint in my brain. Hypoplastic Left Heart Syndrome. Hysterically trying to pay attention all that I heard was fatal, death, termination, non life compatability. By the time I left the office I had no idea which way was up or down. You try so very hard to make sense of the situation or that there must be some kind of mistake. I still had to go home and explain this to my husband that was home all day with a sick baby and I really could not answer any of his questions because the specialist could not even answer mine. I called the pediatric cardiologist as soon as I walked in to beg them to see us ASAP. I was sure with all of this stress I would never be able to make it. He agreed to see us on Friday of that week and here we were on Monday. I must admit it was so very hard to absorb and I barely pulled myself out of the bed. So lets get to Friday....Here we are bright and early at Children's Hospital New Orleans with my supportive Mother once again in tow. Hoping to get better results. My husband had yet to have the days I have had this week.....once again I say yet. After the long extensive fetal echo, the doctor called us to his office and explained to us that he "thought" Mia was going to have HLHS. So with all of my medical background and all of the hours and hours I have spent on the internet for the past four days, I begin with a list of questions he CANNOT answer. I was so discouraged. I felt that I was trapped and could not make a move. I needed to know and NOW. I went home and researched again for hours and hours. I prayed to God and asked him if he wanted me to save her to guide me and help me find where we needed to be. On facebook, which has become my new life I admit I began meeting several families that have children with HLHS. These parents are such positive people and I have so much to learn from them. After speaking with several of them for a few days we realized the Children's Hospital of Philadelphia was the right place for us. We are taking the 20 hour journey next week. My appointment is on February 19, 2010. We hope that we can get some of the answers that we have been looking for for over 3 weeks now. I have not doubt in my mind that we will have that problem. This facility prides themselves on the survival rates of their patients with HLHS. We did have a second visit at the Children's Hospital here in New Orleans before making this drastic decision. Although they have had successful outcomes for children with HLHS, they only do about 8-10 surgeries a year whereas CHOP does about 100. Sorry my post is so long but i wanted to make sure you had all the demographics of what this was going to be about ahead of time. I will continue to post information up to date and hopefully it will be to the point now that I can talk one day at a time. Please keep our family in your prayers as we are hoping for a miracle. Which I do believe can happen. After all the saints did win the superbowl..haha! We love all of you and thank you for your Support.