Trust me...There are 2 sentences you never ever ever want to have to say.
#1- My son has a life threatening heart condition.
#2- My son had open heart surgery at the age of 6 days old.
Miller Brian Moore was born on December 8th, 2011 weighing 9 lbs. and measuring 20.5 inches. He was big and beautiful! He scored a 9/9 on his apgar tests and I remember specifically asking the nurse what he scored, and when she told me, breathed a sigh of relief. You don't really fully know they are healthy and normal until they are born, and at that point, I knew Miller was OK...or so we thought.
The hospital stay proceeded like any normal hospital stay post delivery. Lots of pain the first night. Lots of nurses poking and prodding. The second day they discovered Miller was jaundiced so we had to put him under the bilirubin light. Same thing happened to Maggie, so we knew the routine. The 3rd day, Dr. Parvin, our pediatrician came in and said he would recommend us stay a 3rd night to keep Miller under the bilirubin light a little longer. His levels were getting better, but still not where they need to be. So we agreed. Third night went just like the rest.
On the 4th day, we were packed and ready to go home. We got a new nurse, Helen. She was warm, friendly, and an angel. She noticed Miller's color was starting to get a bit dusky and called Dr. Parvin and he came to take a look at Miller. He immediately noticed his color was off, and after listening to him, said he had a heart murmur that was not there the 2 days before. He then ordered a chest x-ray and a heart echo for Miller. The rest is blurry. I think that was around noon on Sunday, December 11th. And before we knew it, Dr. Henderson, the neonatalogist, came in to tell us life changing news.
Miller has a congenital heart defect called Hypoplastic Leart Heart Syndrome, which means the left part of his heart did not form correctly and does not work. He then told us that Miller would be airlifted to UMC in Jackson for his first of three open heart surgeries. He goes on to tell us the success rate on this first surgery is 88%. In anything else in the world, 88% is pretty darn good odds. But not when you are talking about the life or death of your son, I needed 100% success rate!!! He raved about the cardiovascular surgeon, Dr. Salazar, and promised we would be in excellent care.
Brian and I waited for the transport team to arrive, said our goodbyes to Miller, and went home to pack for an undetermined length of time. I think we both just threw our entire dressers in our suitcases, said a painful goodbye to Maggie, and got on the road as quickly as possible.
We arrived in Jackson sometime around 8pm Sunday night, December 11th. I honestly cannot remember if we went to check into our hotel room or went straight to the hospital. It is all kind of blurry. I was still in a lot of pain from my c-section and the drive to Jackson was NOT fun, physically or mentally.
Miller had his open heart surgery on Wednesday, December 14th, and it was a success! He had to have a revision to the surgery on Friday, December 16th, which was even more of a success. So in his first week of life, my sweet little boy had 2 open heart surgeries that saved his life. They basically re-routed his cardiovascular system so that the right side of his heart now does the work that the left side should do. We were told it is the most complicated surgery known to man. The doctors were AMAZING. GOD was so faithful, and listened to our prayers and the prayers of hundreds that week. He wrapped his arms around us so tight that day, and I will never forget the peace I felt knowing my little boy was going to be ok.
After 4 weeks in the PICU, we are home now and he is doing wonderfully. We wait patiently until his second surgery, which is not scheduled yet. There are many factors that play into the timing, so it will be sometime between April and June of this year. In the mean time, we are turning him into the Bubble Boy trying to keep him well and healthy and free of any setbacks!
Words cannot explain what we have been through, but I did my best to give the big picture. I am now happy to say I have a faith that is not altered by my circumstances. I have a faith that is bigger and better than anything else I know, and it is the ONLY thing that got us through all of this, and will continue to do so. God is so amazingly good!
So his diagnosis is...Hypoplastic Left Heart Syndrome. 3 surgeries and he will be fixed. However, there is no guarantee how long his heart will last. These surgeries have only been done for 30 years, so survivors of this are less than 30 years old. Basically, his heart will always be working harder than yours or mine. So logically, if it works harder it might tire out easier and not last as long. There is always the option of a heart transplant down the road, but that's just an option. We pray Miller lives a long and glorious life with the half heart that God gave him.
I started thinking about this diagnosis, and how it really is no different than your kids, or yours or mine. We all have no idea how many days on this earth we have. It has taught me just how precious life is for all of us. I've learned to pour my heart into what really matters, because what really matters can be taken away in an instant. Believe me, I am forever changed because of this.
I am sure you can guess, but I am not going back to work. I will devote every last second I have on this earth to raising my sweet babies.
The Birth...
The PICU post surgery...
The Cardiac Step-Down Floor
Going home!!
Look how happy this girl was!!!
HOME SWEET HOME!
He's already watching Dora...
If you want to follow our journey, our caringbridge site is http://www.caringbridge.org/visit/millerbrianmoore.
"We know that ALL THINGS work together for the GOOD of those who LOVE GOD." Romans 8:28
