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The Kouns Family

Baby Koa

Scroll down to see updates as the Kouns family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Koa was born 2/22/22 at 4lbs 7oz with his CDH being a defect level D. He was on ECMO day 2 through day 9 of life. Koa spent a total of 122 days in the NICU at Children’s Memorial Hermann Hospital in Houston. Koa struggles with two grade 2 brain bleeds and hydrocephalus. We are being closely watched by his team for any changes. Koa’s CDH re-herniated before and seems to only be able to go 3-4 weeks without needing to be hospitalized for something else. He is currently NPO due to aspiration. This grant helps us focus on the care that he needs by taking some financial stress off of our shoulders.

Update 2/1

Koa had his 23 hour eeg this week. No results back from it yet but we are hoping they can find some normal brain waves and figure out what is going on with his pupils changing sizes and the fluid in his head. We are hoping we can leave in MARCH!!! 

Update 2/23

Koa had his one year CDH appointment. We got good news from all the doctors!! We are watching a couple of things: his weight, lung volume, an area on his right lung, and a dip in his chest. For his weight he had just plateaued, so we are changing his formula and calories. For his lung volume we are just waiting on the test results to come back. Our goal is to be in the mid-20s! If we are lower than we will have to do some interventions to help increase the blood flow to his lungs.  There is an area in his right lung that they are not happy with. They are going to give it six more months before having an intervention . The space that I am talking about in the lung is just stuck together for a lack of better words. So we are just hoping that it opens up on its own. Finally, then the dip in his chest. I forget what it’s called but we are just watching it for now. If it becomes more prominent, then we will have to do interventions. He is 7 KG which is about 15lbs 8oz and 29 inches!  We are still required to be within 30 minutes of the hospital. 

I just got approved for a 3 bedroom apartment 12 minutes away from the hospital so we are going to be moving out of the Ronald McDonald house! His treatment plan is just too long. I think it’s best for him if we move here.

Update 4/1

Koa had his CDH appointment and everything looks good! He’s going to continue to be followed closely because he is displaying signs of cerebral palsy, as well as scoliosis. He is still unable to get off of the G-tube feedings, because he is still aspirating. We also have a new issue that has a riser anytime he changed positions he is throwing up so we are watching that as well. We have officially moved into our apartment near the medical center so we are officially out of the Ronald McDonald house! So it kind of feels like a discharge. I’ve been out for about two weeks now! Koa is going to a daycare in Bellair that is ran by RNs and CNA’s! I am now doing this as a single mom, which has been a total curveball, but I’m handling it very well considering.

The Kouns Family
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