My Sweet baby Koa was born June 20th by emergency c section at 37weeks the surgery took over two hours to get his stubborn butt out and I could feel it all it was a very traumatic experience. My Dr. was trying to attend to me and another mother in the labor room. Koa had many complications with his breathing and temperature control, after he was delivered he was immediately taken into the NICU. Hes been on oxygen for most of his time from Cpap to off oxygen completely then was put on a ventilator, Koa was discharged July 10th and not even 24 hours later stopped breathing at home I called 911 firefighters came gave him oxygen and he then was readmitted back to the nicu when he’s stopped breathing 9 times which resulted in the ventilator. He has a very rare disease called Sotos Syndrome there is no treatment, He silently aspirates, has a floppy air way he got fluid in his lungs during birth and during a aspiration “episode” and got pneumonia had to have antibiotics for a longer amount of recommended time he wasn’t recovering, He has very little to no muscle tone, Koa has extra fluid around the brain. He has had a 24 hour EEG, multiple swallow studies X-ray after X-ray, MRIs, CT scan. And now waiting for the next step, the next thing is unknown doctors don’t really have answers leaving it up to me to decide on a GTube , and other various medical decisions. It’s hard as all this is new to me and not really being communicative, he don’t have much of a plan for his stay we’re going back and fourth on decision making. Unfortunately I live a hour away from his hospital and have trouble with cost of gas back and forth, finding a babysitter for Koas Siblings due to care cost and family not being so supportive during this hard time. As i’ve been trying to stay with koa and bills are behind my landlord has been trying to work with me and has been very supportive. The commute back and forth hasn’t been easy. Any support and any prayers during this time would be greatly appreciated. I’m blessed to have my baby getting healthy by the day and slowly recovering. Any support is a blessing. Lord, wrap your protective arms around my baby. Protect my child from illness and various types of threats. I believe and pray in Jesus name, Amen.
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