February 7th-14th is CHD awareness week! During this week many find ways to promote and generate Congenital Heart Defect awareness so that it will hopefully lead to more research and development for the heart community for the future. I am personally thankful for all the current available information on HLHS, it has all had a major influence on our journey with Cameron. I will be using much of the information we have found to explain where we are now with Cameron aka Baby Mogg.
Hypoplastic Left Heart Syndrome occurs when parts of the left side of the heart (mitral valve, left ventricle, aortic valve and aorta) do not develop completely. Cameron has previously had the Norwood and Glenn procedures which is two of the three heart surgeries needed in our situation. Stage III the Fontan procedure was definitely the topic of our appointment yesterday with Cardiology. Cam was scared and afraid during the testing for his Echo, but he did well after a discussion and sitting on top Momma. Cameron will be getting scheduled for the Fontan come July or August this year, I will post a date when it has all been confirmed.
Cam’s weight and age play an important factor in this decision. The Doctors would like to see Cam around 33lbs for surgery and that’s the goal. We are still giving came full pediasure to help with weight gain. Also, Cam eats well but I feel like I struggle with pushing on the expected pounds. I’m constantly on poor Cam… Do you want something to eat, Are you hungry, Do you want a snack, Please eat, Would you like to eat again? I feel like I’m going to encourage a serious eating disorder for this poor child! Anyway… they say the bigger the baby the more they have to work with for surgery and that’s best.
After the Fontan procedure, the baby is no longer blue (cyanoptic). I have seen Cameron with his lips very blue and a few times the entire area around his mouth. It mostly happens when he’s really cold or exhausted from playing too hard. I have had the question(s) asked ‘Is this the last surgery to fix it?’ Well we hope! However, some patients may need more surgeries in their 20s or 30s if they develop hard to control arrhythmias or other complications of the Fontan. If complications are too severe sometimes heart transplant is the next option and that’s always difficult to say or explain but it’s a possibility with these cases.
Again, there is so much information out there on HLHS and other CHDs that we could post for pages and pages but for now this is our focus. Even as a Heart Mom I still look up everything and will never assume I will fully understand it all especially when it comes to all the medical explanations. However, it’s always been more comforting to have some of the answers and expectations then to be running into everything completely unaware and feeling its unexpected when it’s come to handling this entire HLHS journey.
It was hard to hear that Cam will be going to surgery again even though I knew it had to happen. The idea that he will have to go through another heart surgery makes me mentally and physically sick as a Heart Mom. However, it’s all out of our control and the only thing we can do is be strong, Pray and be positive for Cam. We always appreciate the support and prayers for our family, I can never thank you all enough again and again and again!
Speaking of Happy Hearts… Cam got his heart’s desire to not only touch a big real monster truck but actually get inside one AND take a joy ride around the block! We are so grateful to all who were involved with giving this extreme experience to Cameron, the joy you could see in his heart was incredible! Daddy even said it’s an awesome experience for him too and he was all to happy to be put to work changing out the tires. It silly funny but Cam actually likes the broken Monster Trucks too, ones with the tires wheels off or the ones without the body and just the frames or skeleton. I cannot explain the fun and happiness for Cam but hope these pictures help! A Special Thank you: Sudden Impact, Shock Therapy, Chiller and Ground Pounder!!!