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!