Every heart has a story....

One of my blogger heart mom friends is hosting a special blog event today, "Every heart has a story". She is bringing the online community together to share our heart stories, read about other's journey's and provide inspiration and hope to those around us. You will find some awesome and extraordinary stories of courage, hope and strength within the posts and links she will be hosting. My hope is that we share our stories to encourage and enlighten, to get awareness out, but also to provide support and love to these incredible families.



Here is our story.

Many of you have been following Liam’s story from the beginning, but for those of you who do not know us, welcome to our journey. I hope you are filled with hope and joy by reading about our little heart hero who changed our lives forever.

Liam was born September 30, 2009. He was diagnosed shortly after birth with a rare congenital heart defect called Tetralogy of Fallot (ToF) with Pulmonary Atresia (PA). His condition went undiagnosed in utero, as I had no complications and his heart defect was not detected on any of the sonograms. In fact, pregnancy was great. We had a little trouble at first with getting the correct gestational age, but after that, it was smooth sailing. We chose not to undergo any genetic testing or fetal tests. I do not regret not knowing in advance of his condition… looking back, I am certain my pregnancy and Liam’s birth went exactly according to God’s plan.

The morning of September 30, I was 36 weeks 6 days. One day shy of full-term. It was Wednesday, and I woke up at my usual 5:00 am for work feeling a little funny contracting sensation. Then I got out of bed….hmmm…feeling the gush of water, I knew this was it. And on my dad’s birthday too, which we had just been teasing my dad that past weekend that Liam would sure enough come that day, just to make it interesting. And sure enough…he was coming!

My labor was pretty quick, the pushing part was not however, and Liam required assistance from the vacuum extractor to finally make his appearance. Because he was one day shy of full term (can anyone say God’s perfect timing??) the NICU team was on stand by to make sure he was ok and didn’t have trouble with breathing (as it is common for white males to have underdeveloped lungs when born premature). They noticed right away he was not getting enough oxygen and had a slight heart murmur….they assured us they dealt with this all the time and thet Liam just needed to be monitored for awhile on oxygen, and he should be fine….About 5 hours later, we got the news that changed our world forever.

A pediatric cardiologist, Dr. Verma, delivered us the news that no parent would ever want to hear…Your child’s heart is broken and he has to have surgery to fix it. My mind went into shock and my memory of the rest of the evening is a little fuzzy. I do remember going to see Liam before the whisked him off in the ambulance to transfer him to Medical City Dallas…I got to hold him while they hooked him up to all the monitors and prepared him for transport. But I was lost, and I didn’t even notice they cutoff our bracelets so they could take him without the alarms going off….(it hit me a couple days later that I no longer had my bracelet that linked me to Liam as his mom…it hit me hard, too). There I was all alone in the hospital, no baby by my side like I had expected. My only comfort, besides that of my wonderful husband and family, was a small, stuffed monkey some friends of ours had picked up for us at the gift shop. Little did they know how “monkey” would help me cope, sleeping skin-to-skin with me in the hospital and at home, as Liam should have been. Monkey has thus been there with us and for us from the beginning….

Liam underwent his first open heart surgery, to place a BT Shunt, when he was 5 days old. We were in the NICU for 23 days…released on my original due date, October 22. We have been through a lot since then, mainly feeding issues. Liam went home from his first surgery on an NG tube and 4 months later had to have a g-tube placed because of continuing aspiration issues that stemmed from a paralyzed vocal chord from surgery. We were lucky that he tolerated feedings fairly well, and we were able to keep him on a “normal” feeding schedule. I pumped BM for him the first 5 months, and we then switched to formula about the time he was ok’d to start solid foods. That was a milestone day for us, as we were finally able to start feeding our baby by mouth! He has progressed well, and recently passed his swallow study with flying colors and we can finally give him a bottle, or sippy cup as he prefers. He sees a therapist twice weekly for his eating issues and for upper body strength that he is needing.

His second heart surgery was June 3, 2010. This was our “big” surgery, as it lasted about 8-9 hours and repaired his heart so that in essence, it would function as a “normal” heart. They closed the hole between his left and right ventricles and placed a pulmonary conduit and valve, where he did not have one. They also removed the BT Shunt they placed during his first surgery. Our PICU stay this time was 15 days, as Liam had some issues with extubation. He had two unsuccessful attempts at extubation before the third one was successful. This surgery was hard on all of us, we dealt with a collapsed lung, weaning off narcotic drugs and low oxygenation. It took Liam a little longer to recover from this past surgery, but he is doing great now.

Liam’s status right now is stable from a heart perspective. We know that he will need another surgery between 3-5 years as an estimate, to replace the valve he will outgrow as he gets bigger. They are also monitoring some slight narrowing of his pulmonary artery, to make sure that does not warrant a surgery date sooner than the estimated time frame…but I guess it’s always a possibility. Anything is when you have a heart baby…we have learned to not take life for granted, as we may not be granted another tomorrow.

Liam is a perfect little boy…almost 1 years old and thriving. He is babbling non-stop, happy, healthy and loving life right now. I can honestly say, I wouldn’t wish my life to be any different. Yes, it is hard. Do we struggle – of course. Yes, I have been on the brink of insanity, depression and extreme fatigue. But I wouldn’t change a thing. Knowing the kind of love and miracles we have experienced, Liam has truly brought life to our lives. He brought God closer to me than I ever imagined He could get, and the love of a parent’s heart that only a mother or father could know. Liam's journey with his CHD will never end. He will have to deal with the effects of his condition each and every day of his life. We have found hope and can truly say we are blessed to have been chosen to walk this journey with him as his parents. Liam is our inspiration; his courage and strength amaze us each day - He is our JOY!

It has been a roller coaster of a year for us, but our faith in the Lord has carried us through. We have experienced God on a whole new level, as his miracles, faithfulness and sacrificial love have shown themselves to us each and every day through Liam’s journey, in unbelievably amazing ways. Our blog is a testament to a loving and merciful God. He is the source of our strength, hope and peace...for Jesus has been there before, and has been here with us every step of the way.

Everyone has a story, thank you for letting me share ours.