Skyler’s Mom took the day off from work to visit Skyler at the NICU in Oklahoma. It was a good visit. Skyler is already 6 lbs and 1 oz and doing well with her continuous feeds of 15 ml per hour. Now that she is able to tolerate full feeds, she is all set to be discharged and return to her NICU in Arkansas. As soon as she is back in Arkansas, we are a closer to bringing her home with us for the first time. If only she can be discharged from her Oklahoma NICU and come home with us, sadly we know we aren’t ready. For us to be able to bring her home, Skyler will need a monitor for her breathing and a g-tube pump. We don’t have any experience using this equipment or caring for an infant with critical needs. So her Arkansas NICU will help us get ready for her arrival by having someone from Home Health train us on using the equipment. That will be followed by visits at home to make sure we’re doing everything we need so that Skyler is comfortable.

It’s a new chapter in our life as a family, but none of us will hide from challenges ahead. All we want is to be complete as a family and finally have our little girl home with us.

This video is the latest clip of Skyler. Her Mom recorded this before she drove back to Arkansas. There’s a brief moment in this clip when she is starting to have spasms. Skyler’s Mom managed to stop the spasms by applying gentle pressure to relax her. If you look closely, she even smiles for a brief moment at the end.

It’s been a five days since Skyler had her g-tube surgery, yet you can see how fast she recovered. Having family and friends who continuously support and pray for Skyler definitely helps. Speaking of family, Skyler’s Grandpa traveled nine hours to see our little angel. In this video, you’ll see how Skyler is very relaxed while her Grandpa strokes her head.

Due to Skyler’s disorder (lissencephaly), she has frequent muscle spasms and seizures. We often apply firm but gentle pressure on her shoulders to calm her down. But we also discovered she likes having her head stroked gently. It doesn’t completely stop the spasms or seizures, but stroking her head relaxes her and the spasms are milder.

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