Mummy's back!

It was great to see Emma again today. She looks good and has recovered from the surgery very well. They plan to take the button off on January 17, a little longer than normal as some of the stitches in her tongue came loose when they extubated.

Emma's canula was lowered to 2 liters high-flow from 3 liters this morning. No episodes today, but she only seems to do it at night! I asked the Dr when they would lower it more and he said it depends how she does tonight.

She is now over 7lbs and apparently filling out a bit. I can't tell because I see her every day, but this afternoon when Scott held her on his chest she kept lifting her head to look at him. Unfortunately because of the surgery physical therapy have not been able to work with her so her neck got tight again and we could not get her to turn it to the left today.

With the Moebius Emma has no lateral eye-movement, she can't move them side to side. She also has her eyes looking up most of the time, as if to look at the ceiling. Apparently if she does not bring them down more, she will have trouble looking down. It could be an imbalance in the muscles, so we are trying to encourage her to look down more, by holding her so she has to look down at us, or blocking her view above her head.

Because Emma had the tongue problem she has always been laid on her side, so her head is very narrow and long, versus flat at the back as many babies get! But because she gets lots of secretions in the back of her throat the nurses are scared she'll choke if she lays with her head mid-line! A nurse also said something about her having a large forehead, so now I worry about that too!

We (and by that I mean I) have to remember to take it one step at a time. I often worry that we will run out of time before she will have permanent damage, but everything is an ongoing process and babies change so much no-one can say what the future holds!

As I told one friend today, I place my hope in Jesus, and that there is more to existence than this short life on earth. Some days all the little things can seem overwhelming, and those are the times to remember that if you have love, you really have a lot to be glad about.