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
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
This blog is about our daughter Mia who was born with Left Hypoplastic Heart Syndrome. She has undergone 1 of the 3 open heart surgeries she will need to survive. She has a twin brother named Madden and an older brother named Cole. We are her parents Ray and Jennifer. Please read her journey as it continues to unfold. With Mia having open heart surgery at only 6 days old made me realize how quickly life can chage in the blink of an eye. Ray and I are so fortunate to be given such a precious gift to take care of. She is truly a miracle. I am happy to be who I am, to have the husband and friends and family that I have. Her smile can light up a room. She was given to us for a purpose in life and to think I almost did not get the chance to be her mom is heartbreaking to me. Thank you to everyone that prayed for us, cried with us and supported us on this very emotional and trying time that we have had so far. We cannot thank you enough....our emotions for you are beyond words. From the words of a dear friend "I do not have to figure out how God is going to solve our problem. We don't have to understand how he is going to bring it to pass....that's his responsibility. Our job is to simply believe that he will."