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Nākoa - Our Heart Warrior

Kailua Kona, CA


LINK TO NĀKOAS TSHIRT FUNDRAISER⤵️  We were blessed with our Nākoa 8 weeks early on July 6, 2020. He was born with a rare heart defect that required him to be sent to Kapiolani Medical Center hours after being born. A heart defect classified as PDA and Anomalous Origin of the Right Pulmonary Artery (RPA). A rare condition where his RPA was branching from his ductus rather than his Main Pulmonary Artery like it would in a normal anatomy. He would need surgery to re-implant his RPA to the correct spot, on top of needing re-implantation - his artery was extremely narrow which increased pressure to his lungs and restricted blood flow. This condition is so rare that there are only 112 cases ever recorded worldwide. On July 15th, we were transported to Lucile Packard Children’s Hospital - Stanford Children’s Health in Palo Alto, California for Nākoa to undergo heart surgery. Two weeks later on July 30th - Nākoa went into the operating room for his intensive surgery that required heavy anesthesia and a bypass machine. By the grace of God - Nākoa came out 6 hours later 🙏🏼 He spent another 6 weeks (3 in the cardiovascular intensive care unit and another 3 in the neonatal intensive care unit) in recovery. It was a long, tough road and the hardest thing to witness but through prayer and praise, Nākoa overcame every obstacle and so did we. Nearly two months after being in the hospital, he was discharged on September 5th and we had plans of coming home the following week.  Unfortunately, at what was supposed to be his last follow up appointment, his cardiologist scheduled him to do a “cardiac cath scan” to examine how well his heart was working. The procedure revealed his heart was working harder than it should be and would require another heart surgery. It was totally unexpected because Nākoa has been with us out of the hospital and had been doing fine. So here we were - with our bags packed ready to come home only to hear that our warrior would find himself on the operating table once again. His next surgery is scheduled for October 27 and expected to require another month or so of recovery. As of right now, Nākoa is with us at the hotel until surgery and for that, we are so grateful. We were told to expect to be here for 8 weeks but we have been in California for 3 months and will be here for another 3 months. I am not looking for sympathy and I don’t want anyone to feel sorry for Nākoa because he is the bravest, strongest, most resilient baby I know who is covered by God’s healing loving hands. He’s meeting all of his milestones and progressing as any 3 month old baby would but ultimately his heart still needs some repair.   He has fought, endured and made such good progress. We praise the Lord for his miraculous works in our baby, for guiding the surgeon, the nurses who took great care of our baby, for revealing what needs to be seen to the doctors and most of all his unconditional love and faithfulness. I’ve said this before and I’ll say it again - HE WILL NEVER LEAVE US NOR FORSAKE US and I believe in Him with all my heart and soul. It’s easy to have faith when you’re comfortable and everything is going great but it’s another thing when you’re desperate, lost, and broken... begging for God to save your child. This was by far the hardest season I’ve gone through but I’d weather it a thousand times more for my Koko Bear. I have never been more humble and closer to God. Through the fire we are being refined! I find comfort in His promises that he’s our shield, our rock; to be strong and courageous because he goes before and beside us. I was reminded by a fellow heart warrior mom that this battle was not mine, David’s, the doctors or even Nākoas. It was for the Lord to fight - we only need to be still. He has gotten Nākoa this far and he won’t stop now. I receive Nākoas complete healing, he is a child of God. Before he was formed GOD knew him. Before he was born GOD set him apart. He has the power and authority over all of this. I can admit that this journey is painful to share and put into words but I have shared our testimony and will continue to do so to share the greatness and faithfulness of our GOD. We are humbly asking everyone for prayers for complete healing, comfort, protection and continuous strength over Nākoa. We believe in the power of prayer and the Bible says “Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.” We have set up this fundraiser to show Nākoa that his fight is our fight and he is supported and loved by so many! Thank you all for the prayers, support, love and encouragement. God bless you all, always ❤️ [Back story] 1 in 100 babies are affected and diagnosed with CHD and we want to spread awareness and stand up for all heart warriors who are so strong and resilient. Up until one week after Nākoa was born, we still didn’t decide on a name. I didn’t want to settle on anything because I wanted him to have something with meaning. Then a couple days before we were being sent to California, one of his nurses at Kapiolani said “even though his heart is sick - he’s so strong, look at him - he’s fighting” , then one of his cardiologists left a note for us “Hang in there, your baby is a fighter”. It was settled undoubtedly - our baby is a fighter so we decided on Nākoa which means warrior in Hawaiian. He truly lives up to his name. He’s our fighter and a brave heart warrior.

Special Notes

If you would like to donate directly via Venmo - donations may be made to @sllanesfuller