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.

Skyler is still at the NICU in Oklahoma recovering from her g-tube and fundoplication surgery. Even though she’s been in the NICU since she was born, we can still participate in her care. Every four hours we like to help in changing her diapers, taking her temperature, changing/removing her hand and foot splints and giving her hands, feet & legs a nice massage with some stretching. This is something we always look forward to, makes us forget that our circumstances are different from other new parents. In this video, Skyler’s Dad is changing her diapers. Before she always has seizures or spasms during her four hour routine, but now at 6 weeks old, she doesn’t seem to mind and appears to enjoy a little bit of activity.

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This video was taken just two days after Skyler’s g-tube and fundoplication surgery. Due to Skyler’s frequent muscle spasticity and seizures it’s very rare to see her smile. We were very lucky to finally catch her smiling and fortunate to be able to share it to the world.

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Because of Skyler’s lissencephaly, she is at high risk of asphyxiation.  To minimize the risk and also help with her reflux,  Skyler got her g-tube and fundoplication surgery at five weeks old.

The nurses in this video are placing a binder around her abdomen to protect the incision and g-tube area.  As her parents, it was difficult to see her like this.  But at the same time we are fortunate to have access to the best people to care for her. Skyler’s doctors, nurses and therapists from AR and OK are just wonderful.

In order to be strong for our daughter, its essential for us to focus on the good things. In times of crisis, especially if it involves a loved one, it’s easy to forget how fortunate we really are.  Having faith, family, friends and keeping a list of things to be thankful for are what you need to remain strong. This is probably why God chose us to be Skyler’s parents, and we thank Him everyday for giving her to us.

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