Getting ready for Life Flight.
After PDA closure was inserted
After a very long day, first open heart surgery
Strongest boy watching the doctor as she pulled out his what seemed like a never ending drain tube.
After second open heart surgery
￼￼￼This week, Feb. 7-14, is officially congenital heart defect awareness week. I was thinking about doing a week long photo challenge but I have decided to go a different route.
CHD posts, stories, facts, etc are usually not happy or upbeat. I kind of don’t love always sharing downer stuff. I think it is important to raise awareness though and I want others to know that by us sharing our story (at least for our family and our warrior) we aren’t trying to have a “poor us” deal going on. We are trying to show our reality, a reality that could easily be many people’s realities, but doesn’t have to be.
I will start from the top. When our son was born we were unaware that he had any heart defects at all. In fact it was believed that he had an open PDA, which was discovered when he was born, despite the fact that we had 3 ultrasounds this was never seen. When he was having a harder times breathing the NICU called for an echo tech and they could also hear then that he had a heart murmur. The echo tech saw the open PDA but everyone was pretty hopeful it would close on it’s own, which is the case for many babies. When our son, Kenai, was just over a month old he started to have some pretty rough days. When I think about all of the times he had to be “bagged” because his tiny body didn’t want to breathe on it’s own it makes me weak. This was quite common durring that time for him unfortunately, and at the time I was kind of numb to the magnitude of it all. The PA would call me from the NICU every time it happened (I could not always be there with him, I had 3 other kids at home and my husband was in Hawaii working a lot of these times) or I would call at night before going to bed and sometimes find out before she had a chance to call. I would kind of respond with a “oh man.” It’s like I didn’t fully grasp how touch and go some of his days were until after the fact, I was being his cheerleader & focusing on the good. Anyway, when Kenai was about a month old the NICU repeated the echo and found that in addition to the open PDA he also had a VSD and pulmonary stenosis. We knew then that he would eventually be needing open heart surgery. Within about 2 weeks he was having way too many days of being bagged and his echo showed his heart needed immediate attention, he was life flighted 5 hours north to Primary Children’s Hospital to have a device inserted into his heart to shut his PDA. Between that time and his open heart, which happened at 11 months old, we had lots of doctors visits and cardiologist checks. Kenai’s heart was functioning very well on it’s own but they finally agreed on doing the repairs without waiting for him to go into heart failure, which is not uncommon in the “heart world”. Kenai had so many echo’s in his first 11 months of life but they still did not catch everything going on in his little heart. He ended up having VSD, ASD, RCAPA, & pulmonary stenosis all repaired, two open heart surgeries in a weeks time and a permanent pacemaker placed.
Kenai will always be a heart baby, CHD is not curable. There are times that get a little more nerve wracking than others but I am so grateful for this boy and the medical field who has given him life. He is a fighter but without their aid we would not have our boy, they saved him. We are not out of the woods but he reminds us to appreciate every single day. Smile through the battle and come out on top! Such a warrior this amazing boy is!
Now some facts… CHD kills almost 2x’s as many kids each year than ALL forms of childhood cancer combined, is 60 times more preventable than childhood cancer & childhood cancer research is 5 TIMES higher than CHDs. Nearly 1 in every 111 infants are born with some form of CHD, that’s roughly every 15 minutes a baby is born into this way of life. This is why I share our story. If this is a preventable life more needs to be done to prevent this from being such a common occurence.