Journey through the NICU Part 3: Doctors visits and concerns for the future after going home

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After losing one of their twin boys at just 11 days old and spending four months in the neonatal intensive care unit with the other, the Thompson family from Bath is finally able to go home. But transitioning from life within the NICU to life outside comes with it’s own struggles.

“There’s so much anxiety that comes with taking a baby home after being in here, you worry if they are breathing, you worry if something is going on that you can’t see because there aren’t monitors to tell you that they’re ok, there aren’t nurses there to rush to their aid if something is going to happen,” Megan Thompson said. 

About 4 months after giving birth, Megan Thompson was finally able to take her baby home from the NICU, and while nothing could compare to what the family experienced during their time there, Megan says making the adjustment from the NICU to home came with it’s own struggles. 

“We can’t have him around a lot of other people. We have to keep him kind of in a bubble just because he doesn’t have the immune system he should and because of his lung condition. We just have to be really careful because if he gets sick it could be really bad,” Megan said. 

There’s also concerns for little Kase’s future. When babies are born as small as he was they often continue to deal with health issues down the road. Developmental delays, chronic lung disease, and vision issues are common.  

“I worry about his eyes, I worry about his lungs, I wonder if he’s going to be able to play sports, or if he’s going to grow the way he should, if he’s going to learn the way he should because he was so early,” Megan said. 

“Today is his six-month birthday. It’s made me think a lot about how far we’ve come and where we started. Coming into the doctor’s office today was a good thing, getting his shot… but also we got to find out that he’s 11 pounds which means he has come so far since his 1 pound days,” Megan said. 

Weekly doctor’s visits have become apart of the Thompsons’ life. 

“We have to come back for shots, we come back to make sure that he’s gaining weight and just to make sure that he’s healthy so we know that moving forward it’s going to be something that we’re going to be living with for a while,” Megan said. 

And while they hope to spend less and less time at the doctor’s office as time goes on, there’s one part of the hospital the Thompsons say they’ll always have a special connection too. 

“I knew people who had experiences in the NICU but you don’t understand it until you’re there and once we were there and we started talking about it we realized just how many people the NICU touches,” Megan said. 

The Thompsons visit the NICU often, thanking the nurses who helped keep their son alive and donating to the place that made it possible to bring their little guy home.

“You don’t want to take any time for granted with him, even now at times when he frustrates you as normal babies do you just remind yourself of how things were just a few months back and it puts it all into perspective,” Ryan Thompson said. 

And while Kase continues to grow and get stronger everyday, the Thompsons cant help but think of their baby who wasn’t able to come home…Colson James…A constant reminder of just how much their family has been through. 

“We remember him everyday, we talk about him, he will know about him, and it helps us to be able to talk about everything to keep his memory alive,” Megan said.

Watch part 2 and 3 of this special series by clicking here. 

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