We a word from the NICU doctors and nurses we had not heard since Julie’s birthday… home!
Julie was promoted to the low-flow nasal cannula this past week. She went from 6 liters/minute of air to 4, 2, 1.5, and 1. She is now on 0.3 liters/minute and 100% oxygen. This is a “go home” setting; meaning that she could go home like this. She has been tolerating this very well and only sets off the alarm when she wiggles more than the sensor can withstand. We would like to have her come home without needing any breathing support, but this equipment is fairly easy to deal with.
Julie also reached another milestone this weekend. She is now over 8 lbs. Her 6-8 lbs sized clothes are getting really tight. She is eating 70 cc every 3 hours. Instead of taking 1 hour, the machine now pushes through her feeding tubes in 45 minutes.
That leaves just one more major issue to resolve, Julie must be able to feed off a bottle before she can come home, otherwise she will need a g-tube (feeding tube) installed in her belly. The g-tube is major surgery and will extend her stay in the NICU by up to 4 additional weeks, to say nothing of the maintenance for the next 6-12 months.
An occupational therapist worked with Julie last week and was able to get her up to 5 cc via bottle. But Julie completely failed with a different OT Monday. Sarah and I have several different exercises for Julie to help her get ready for her next attempt with the OT on Thursday.
We’re hoping that Julie will outgrown the cannula by the time she is ready to bottle feed and we’re praying that this happens quickly. Thanks for all your continued prayers for Julie.
Andy & Sarah Horn
PS Sarah had a good weekend. First, Sarah played some of her piano compositions at the
Ritz-Carlton in downtown Dallas for the Haitian Flag Day Gala (a fund raiser for the victims of last year’s earthquake). A man who has worked with several big name stars (including Beyonce) was very interested in her music. He is eager to work with Sarah to help her develop her composing and performing techniques.
Sarah also had her first baby shower on Sunday. To cap off the weekend, Sarah was able to perform sign language to an old-fashioned hymn sing on Sunday night.
This week marked the end of Julie’s respiratory problems. The doctors took the tracheostomy off the table.
Julie just needs to finish a whole meal by bottle in order to lose the feeding tube and avoid the g-tube. Unfortunately, the new OT is hard to work with. She doesn’t write up her reports in the NICU log, doesn’t show up when she promises, and doesn’t call Sarah to reschedule feeding times. So, Sarah has only caught a couple of feeding sessions.
Still we look forward to a good week of feeding and hope that Julie will come home by the end of May.
RT now includes a new feature. Julie inhales a medicine to clear her pathways and prevent mucus build up. The apparatus produces a fine mist which looks like smoke. Nothing better than a relaxing smoke after a good beating!