Monday morning we got up bright and early....5 AM! Groan..... For those who know what night owl I am, this was no easy task. However, when I have to, I can rise to the occasion ( haha...even with the crow). We headed to Children's for a 7:30 AM check-in time. We got all checked in and waited to be called back. Before they would operate on her eyes, she was to have an MRI on her brain.
At a visit last month to Neurodevelopment, her RN ordered the MRI to see if they could get a better "picture" of what may be going on....why Summer's motor skills are still so far behind. She was assuming that Summer may have some scarring in the motor function area of her brain from an injury that occured while she was still very tiny and new...something a lot of very premature babies experience. I was more nervous for this than the surgery....anytime they have to look at her brain, it makes me nervous. Last year in two CT scans, they found some swelling in a few of the ventricles...it was not a concern, so they haven't followed up with any tests. Summer has been progressing, slowly, but surely, but she is still not as far along as they would like to see, so the RN wanted an MRI done. Summer would need to be sedated for the MRI, so it was a convenient time to do it now.
They took us to the MRI room and explained what would happen when they gave her the medication to put her to sleep. They were going to have me hold her....she would go limp from the drug and then we would lay her down and give her oxygen. At the time, I thought that I could do this.....fortuneatly, as they were setting up, the MRI machine broke and I didn't have to see her go to sleep. Talking to Tom later, I realized the potentially tramatic affect this may have had....since I held Brooke as she passed away....this would have been way too close to home! Thank you to whoever broke the machine!!
So, while they waited for a technician to come fix the problem, they sent us into a waiting room...about 15 minutes later, they came in and said they would go ahead with the eye surgery first and hopefully the machine would be up and running when she was done.
Here are a few "before" shots of our cute little cross-eyed girl :)
Summer has done so well, and her bum is still rash free, we got to turn up her formula again. We are still running TPN (IV) 5 days per week, but the nutritionist wants to see Summer in 2 weeks (from the clinic appt last week), and will drop down to 4 days a week if Summer is still gaining weight and looking good :) She is now at 85 ML's per hour....and can increase to 90 after this appt. too. Her goal per hour is only95 ML's per hour! We are SO close to getting rid of the IV....I can't wait :)
Summer's eyes look better each day....we went to a post-op appt. last Friday. Though her eyes are remarkably straighter, the surgeon was not happy with their allignment. Her left eye goes outward now...she wants us to come back in two weeks to asses how she is doing at that point. Summer may have to have the surgery again to bring the eye back in....we have to wait and see what happens....for now, look how cute she looks :)