written by, Heart Mom Brooke
Our sweet Kaison was born seemingly healthy in August of 2015. He was the happiest little thing, but around two months old he started having some struggles that were extremely concerning to me. He started having trouble breastfeeding and would get restless, crying and not his normal happy self. I brought him in to have his latch checked, looking for lip and tongue ties. The doctor assured me nothing was wrong, that he wasn’t concerned about his weight yet and sent us on our way. I kept in touch with my doula and lactation consultant, still convinced he had a feeding issue. Then everyone got colds, and Kaison really struggled to get over it. I brought him into the emergency room on a Sunday because he was retracting. They did chest x-rays and sent us home with a diagnosis of a respiratory infection and a prescription for breathing treatments.
The following morning, I received a very anxious phone call from his pediatrician telling me to get into the emergency room immediately. He thought Kaison may be in heart failure. We rushed in and were put on a med flight from our rural town to Billings, MT where it was confirmed that Kaison was in heart failure. Kaison would need corrective surgery for a very large VSD. From Billings, we were sent to Seattle, WA where Kaison received his first heart surgery. The doctor’s placed a Pulmonary Artery Band to help him get bigger for the open-heart surgery that he would need at a later time. The goal was to have a blood transfusion free surgery, which the surgeon in Seattle was confident in, as long as Kaison got to a goal weight. We went home to Montana after surgery with an NG tube for feeds and Kaison needing constant attention for feeds and all of the medications he needed to keep his heart and lungs in good condition. Kaison struggled to gain weight because of having gastroparesis, a side effect of his heart condition. Through much trial and error, we ended up needing to get a NJ tube and bi-passing his stomach completely. This helped him finally start to gain weight.
Six months after Kaison’s first surgery, we were on our way back to Seattle. The second open heart surgery and repair went fantastic. The surgery was completely blood transfusion free and he started to recover beautifully. The difference was amazing to see, his color, breathing, how he moved and he took to drinking and eating right away. We are so grateful to everyone who prayed for him; the doctors, nurses and all the medical staff.
He’s now four and is the spunkiest most energetic boy. He’s obsessed with superheroes and loves to show off where his heart was ‘broken’.