About a week later, Tony & I noticed Kya didn't take 2 of her feedings which was odd because she loves eating! Right away that was a red flag. She was also whimpering which is not like her at all. She's usually very independent & can self soothe easily. Due to the whimpering I decided to hold & comfort her. When I went to put her back into her bassinet, I noticed the color of her face change to gray & her lips turn blue. I immediately positioned her to where her head & shoulders were aligned & held her upright (what we were taught in the NICU in case something like this happens) in the meantime I woke up Tony. He took over & held her upright. Her color finally came back but went right back to being gray. We were able to keep her stable where she was her normal color while my parents rushed over to watch Koah & Kalia & we went to the ER. In the ER, they hooked her up to the monitors, started doing blood work & swabs to see if she possibly had RSV or the flu. The results came back negative. The nurse gave us a syringe to try to feed Kya since she hadn't eaten. Tony only gave her about 10ML. I was holding her at the time & all of a sudden she turned gray & her lips turned blue. Tony ran out calling the nurses & all of a sudden about 20 people rushed in, they took Kya from me & started doing everything they could to revive her. "Code blue" was called out over the hospital intercom & I watched the monitors beeping like crazy & Kya's heart rate & oxygen going down. In that moment I was helpless. I couldn't do anything for my baby. I couldn't help her. I watched my baby slipping away. As a parent, I don't wish this pain on anyone. After what seemed like hours, they were able to revive Kya & we were rushed to the NICU.
In the NICU, while trying to put the feeding tube down her throat, she stopped breathing again. A whole new team of people rushed in & was able to revive her and keep her stable using the oxygen mask. The neonatologist decided to transport Kya to Stanford where she'd get the best care & a Dr. was on hand 24hrs.
Tony & I rushed home to pack and reach Palo Alto before Kya. It was heartbreaking to leave Koah & Kalia, not knowing when we'd be back, but we had to do it.
We got to Stanford and waited on chairs positioned right in front of the elevators so we could see Kya as soon as she arrived. About 3 hours passed & Kya should've already arrived. I finally got a call from the transport nurse saying that they just left Salinas because Kya stopped breathing. Again. This time they inserted a breathing tube to ensure she couldn't stop breathing during the ambulance ride. The anticipation & worry & anxiety just waiting and praying Kya would make the hour and half ride is inexplainable. The moment we saw Kya come off the elevator was both a relief but also tragic. She didn't look like herself anymore. They rushed her into the NICU in isolation and Dr's and nurses immediately started doing tests. They recommended that we go home because at that point there weren't any answers. They had no clue why in a short amount of time she went from being good at home to not breathing. We were fortunate enough to stay at my sister in laws house while Kya was in the NICU.
Finally we got a break. It was determined that there was bacteria in her blood and not a virus. The good news is it was treatable. In Salinas, they started antibiotics already just in case, and Stanford kept up with it. Tony & I consented to Kya getting a spinal tap to determine if the bacteria had already reached her brain which would mean possible learning disabilities. and physical disabilities. Kya rejected the spinal tap. She tensed up and got so mad that she stopped breathing.
The next couple days were a blur. Tests and more tests were being given and we watched our baby go through it all on her own. My 3lb baby was able to withstand all of the needles & tubes & wires. I could do nothing but cry & pray for her. They gave her morphine to accept the spinal tap. They noticed abnormal movement so she had a seizure mask & monitor attached to her. Once she was able to take the feeding tube, she was able to eat which was crucial because she was losing weight.
Then things started looking up. The results from the spinal tap came back & she didn't have any bacteria in her brain. The seizure monitor was removed because she showed no signs of seizures. The next day Kya showed the NICU staff just how strong she is. She wanted the breathing tube out! On the monitors it showed Kya was mainly breathing on her own again. Just the day before she was not breathing on her own at all. She got her way and got the breathing tube removed. She was starting to look like our Kya. Most importantly, that day we finally got to hold her. That night she surprised the nurses and fed from a bottle which meant, no more feeding tube! Once Kya started doing better we picked up Koah & Kalia. We just couldn't keep our family separated. Tony & I then started taking turns to see Kya in the mornings before Koah woke up.
Kya did so well that they moved her from isolation in the NICU to the intermediate care nursery. She responded really well to the antibiotics that by 2 weeks later, she no longer had the bacteria in her blood. We were finally expected to be discharged!
Then on discharge day we got a phone call. Kya choked while feeding and her oxygen and heart rate fell and she had to be stimulated by the nurse & get an oxygen mask used. Kya couldn't go home. Everyday after that was a waiting game. Kya continued to have heart rate drops randomly and during feeding both heart rate & oxygen levels went down. An occupational therapist went to see Kya and changed her eating positions and formula.
On one of the days in between Kalia had abnormal breathing. Tony and I decided it would be better safe than sorry and brought Kalia to the ER. They did a blood culture on her and it was determined that she didn't have a bacteria in her blood. Thank god.
We got a call that set us back even more. It was discovered that Kya has 2 inguinal hernias on each side of her groin area. It's common for preemies to get it and she was most likely born with it. Surgery is the only option to fix it.
I'm writing this as we wait daily for more progress from Kya, more answers from the Dr's, and possibly a surgery date. From the day I found out I was pregnant, & the shock of being told it was twins, I knew the risk. I've put everything in God's hands and we've received nothing but love and prayers from family, friends, & even strangers who have heard our story. Our medical bills are piling up and even with insurance, we're looking at costs to be high. We never ask for help, but in this case Tony and I know we'll need it. Any donation is greatly appreciated and even $1 helps. And if you can't, we would love a prayer. From the bottom of our hearts, we thank you.
Tony, Camille, Koah, Kalia, & Kya
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