Kyler was born on August 2, 2020 at 36 weeks. We were so excited to finally see him and hear his cries. He was our rainbow baby and after many years of trying we were finally blessed with him. After laboring for a few hours he finally arrived a little after 11Pm. When Kyler was born he came out screaming like most babies do. They put him on my chest for a minute so dad could cut the cord and whisked him away to check him. 20 mins passed and they were still checking him and decided to call a NICU doctor up to our room. Before I knew it an hour had passed and they decided he needed to be taken to NICU. Kylers saturation levels would not come out of the low 70’s. They were trying everything they could and his cries I heard when he came out turned into little grunts instead. He was taken to NICU with his dad by his side and I was taken to recovery. Around 5AM Monday morning a NICU doctor came in and told us they believe Kyler was born with a rare heart condition called TAPVR which stands for Total Anomalous Pulmonary Venous Return. Kylers heart anatomy wasn’t formed correctly. His good blood and deoxygenated blood were mixing together causing him to not get the adequate oxygen he needed from his blood to his lungs and his brain. We were to be flown out of Honolulu via Air Ambulance Tuesday morning. I was discharged and sent home 18 hours after giving birth to pack and get everything I needed to fly to San Jose, CA to Lucile Packards Childrens Hospital Stanford for Kylers life saving open heart surgery.

Tuesday morning we get a call saying Kyler was not stable through the night and they had to push back the flight. When I arrived to the hospital that morning they were deciding to do a chest tube due to an air pocket in his left lung. Or if they would chance putting him on ECMO (Extracorporeal membrane oxygenation) bypass to keep him stable for the flight. Since he needed to be flown out ASAP they did the chest tube and waited to see if he stabilized. We cancelled davids flight to SFO since now we were unsure when we were leaving. An hour later we get news that he is stable and they wanted to leave NOW! So we rebooked davids flight and me and Kyler was sent into the ambulance with his transport team. We arrived to California around 8PM and finally got to the hospital around 9PM and everyone got to work transferring him from his incubator to his new hospital bed. After what seemed like an eternity watching everyone work on him a doctor came up to me to tell me Kyler needed to be taken into surgery in the next 15mins. It was just past 12AM David was on his way to the Hospital and he wasn’t going to make it to see his son off before heading to surgery and I stood over my son and cried. I was unsure of what was about to happen and how it will all play out. All I could ask them was to please let me kiss him before they take him. They were more than happy to offer me time with him before taking him to the OR. I said my goodbyes and prayed over my son and he was taken down to the OR. David arrived 5 minutes after and we waited all night for news on his surgery. We got a call around 6am saying surgery went well and they are cleaning up which would take another hour or so. That time came and went and by the time we looked at the clock it was already 11AM and he was not brought up yet. We were called to have a meeting with his surgeon to go over the surgery around 2PM. We were told he did well and everything went fine. However, for the surgery they needed to put him on the ECMO machine which is procedure for this type of surgery but he was unable to come off of the ECMO after the surgery. That’s why they took so long because they attempted and watched him and realized his body needed to rest and recover and this machine was gonna help him do that. We finally come back up to his room and see him for the first time. A giant machine with tubes everywhere running directly into my sons open chest. This machine runs better when using blood thinners.

After couple days we were told his brain showed signs of bleeding and swelling. They decided to stop blood thinners to prevent any more damage to his brain. Then they put sensors on his head to watch for seizure activity. After a couple days the ECMO started to have clots build up and They needed to do a change out. He was brought a new machine with new lines and was changed out within an hour. This is when we started to notice Kylers hands and feet were always ice cold. But being on ECMO required his body to be cool but the machine warmed the blood just right for his body. Then his hands and feet started to get purple spots that eventually started spreading. This was called micro emboli. Since Kyler wasn’t on blood thinners tiny clots passed through his cannulas and lodged in his tiny blood vessels in his hands and legs. If that wasn’t bad news already we were told he was starting to show signs of seizure activity on his scans. He was given medication for seizures and they continued watching him.

On Wednesday August 12th we had a meeting with all the doctors involved in his care from head to toe. Basically we were told his heart is slowly recovering and we were making good progress even if it’s a little at a time. His lungs still needed time to heal and his seizures stopped after given the medication and his kidney function was coming back and he was able to Pee more and more. Then his neurology team told us that they believe that during the time from him being born to getting here for surgery his brain suffered from lack of oxygen. He also had the bleeding and the swelling and on top of that they believe the tiny blood clots made its way to his brain also. With all this happening they believe Kyler will not be able to live a normal life. He will not be able to walk, talk or feed himself or possibly need a feeding tube. News no parent wants to hear. But all we wanted was for Kyler to get better so he can come home where his big brother Kaleb is waiting to meet him. It was a hard pill to swallow but we needed to take it in and move on because We needed to stay strong for Kyler.

The night of August 12th they decided to do a 4hr clamp trial to try to remove the ECMO machine in hopes to help save his limbs. He did well until the last hour where his body showed it was having a hard time getting rid of the CO2 in his body. So they held off on removal. The next morning talking to the surgeon she said she wanted to try again and just needed to tweak some numbers on his ventilator to help his body as he comes off ECMO. Around 3PM they started a 2 hour clamp trial and by 5PM that night my son was ECMO FREE! As he recovered the next few days we were told his bleed was stable in his brain and no changes. They decided to start blood thinners again to help the clots in his limbs in hopes it will break them down. Slowly we are seeing some of the dark purple in his skin fade away. His wound care team are seeing progress but it’s still too early to tell what will need to be surgically removed. Only time will tell what our next step will be for him.

Kyler continues to fight everyday. He continues to make progress even if it’s small progress we are so happy with how far he has come. We kindly ask to please continue to pray for Kyler as he has such a long way to go to start healing. We’re humbly asking for donations to help with medical bills and other costs for Kyler’s living arrangements for when he comes home.  If you are unable to give please know that your prayers are truly appreciated just as much.  

We will post the updates of Kyler’s Heart Journey.