Our Lil' Hero: Hanging In There

Sunday, October 31, 2010

Hanging In There

Our little one is still doing great. But I guess I should define what great is.... He is still in critical condition but stable and here that is great! His chest is still open but when they change the dressing they say his heart looks really good and is clean still so that means there isn't any bleeding going on which is good. I haven't gotten a chance to upload pictures yet but hope to soon. He has so many machines and pumps in his room but today they took him off one and it was SO exciting! They are still keeping him pretty sedated but today the nurse let us interact with him more. We have been able to touch and talk to him. He held my hand this morning and it made my heart melt, then after church he was awake when we went in and he looked at me while I talked to him! He really couldn't focus on me because he is on some pretty big drugs but it still was nice to see his big beautiful eyes! So they have a Primary Children's Branch here so there is sacrament every sunday, it was so touching to be in that room. I was pretty emotional in there because I felt the spirit so strong! Tomorrow is the big day when they will sew up his chest. They say 24 hours after that can get pretty rough again but I have faith in him and he is such a little fighter! Thanks for all the prayers that are being said and for everyones thoughts.

The opening song at church was I Feel My Savior's Love and it really hit home with me so I'm going to end this post with those lyrics.

I feel my Savior's Love in all the world around me, his spirit warms my soul, through everything I see. He knows I will follow him give all my life to him, I feel my Savior's love, the love he freely give me.

I feel my Savior's Love, his gentleness enfolds me, and when I kneel to pray, my heart is filled with peace. He knows I will follow him give all my life to him, I feel my Savior's love, the love he freely gives me.

I feel my Savior's Love and know that he will bless me, I offer him my heart, my shepherd he will be. He knows I will follow him, give all my life to him, I feel my Savior's love, the love her freely gives me.

9 comments:

brenda said...: So I am totally in tears right now. I am so glad you got to hold his little hand! That hymm is one of my favorites and it always makes me cry on a normal day, so I can't even imagine what the spirit down there in that setting would be. Hugs and Prayers your way!; October 31, 2010 at 1:31 PM
Anonymous said...: You made me cry. I would love to attend Sacrament meeting there. I am so sorry little M and you all are going through this. I pray for you guys. I'm glad things are looking positive. You are an amazing person Molly and I know that you will turn this whole experience into a positive one that will strengthen you and your family. Hang in there. You have a lot of support.; October 31, 2010 at 3:34 PM
Anne said...: Today I gave the relief society lesson and we talked about the healing power of prayer. I'm so glad that you have felt the spirit and feel comfort through that spirit. It's so great that the surgery went well! Your little family is on my mind always....keep up the updates. :); October 31, 2010 at 5:22 PM
thecannon5 said...: It is sooo good to hear he is doing so well. He is definitly a fighter and will continue to. Its good to have the gospel and feel our Heavenly Fathers love around us. We will continue to keep you in our prayers.; October 31, 2010 at 6:11 PM
brandib said...: Thanks again for updating us. You and your family are always in my thoughts and prayer. You made my heart swell when I read your post from today. Thank you for that great reminder of the Savior. It was well needed on my end. We love you guys and are thinking of you!!!!!!; October 31, 2010 at 10:30 PM
pmday said...: Hi Molly,
Your mom gave me your blog last night. I have been thinking of you guys so much and wishing I could do something for you. We are all praying hard for your sweet little baby. I hope you can have the strength you need to get through this tough time. I know so many people are praying for you and love you guys. Thanks for doing the blog. I will check it every day. Love and prayers, Kristin Day; November 1, 2010 at 6:50 AM
Jody said...: I am so glad the surgery went well! I am so glad yo are staying strong and feeling the spirit~that is so important~we love you guys~take care of yourselfs.; November 1, 2010 at 1:54 PM
David and Company said...: This last week the Savior and his Attonement have been on my mind. He suffered EVERYTHING for us. That meens he felt your pain and your worry and KNOWS how you are feeling. Feel of his love and know that he is with you through these tough times. M is a tough little guy and has many hearts praying for him on both sides of the veil. We love you so much!; November 1, 2010 at 9:43 PM
Stueller said...: Yep tears here too... what a little sweetie.; November 6, 2010 at 4:34 PM

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A little about Mason

This is a journey through Hypoplasic Left Heart Syndrome (HLHS). Mason was born on October 1, 2010 as what we thought was a healthy normal baby boy. At 3 weeks old we found out when he was life flighted to Primary Children's Medical Center that he was born with an Unbalanced AV Canal Defect that caused him to have Hypoplastic Left Heart Syndrome. He also was diagnosed with 2 Large ASD's a VSD, a CoArch of the Aorta, and a small leaky Mitral Valve. He had his first open heart surgery, the Norwood, in the end of October 2010. After surgery his chest was left open and they surgically closed it a few days later after the swelling went down. He had his second open heart surgery, the Glenn, in January 2011. He did great with recovery and got discharged 1 week later. We had him home for 1 day then he was rushed back to the hospital where they found he had a sternal infection and had to open him back up and wash out all the infection and he had a picc line placed for 6 weeks for antibiotics. He had a couple of heart caths during that time, and echo every 3-6 months, and eye surgery.
In February 2013 we sent his records to Boston to explore different surgical options for him. We found out he was a candidate for a surgery called the Staged Left Ventricle Recruitment to the BiVent. With this surgery it would grow his left ventricle to normal size and then give him normal circulation to hopefully avoid him having to have a heart transplant. (if we didn't go this route we have been told with his anatomy he would need a transplant in his teens). With the help of friends, family, and strangers we went to Boston where he had the first of hopefully only 2 surgeries. He had his 3rd open heart surgery in June and right now his heart is growing and conditioning to be able to handle the load of the work that a normal heart does. He is due to have his 4th open heart surgery in the first of 2014.