Faith chilling out in her chair watching the game with Dinger. :)
Not much to report on today so we thought we'd update you on the general progress of Faith.
NUTRITION: Faith is still unable to take anything by mouth. She receives about 4.5 ounces of breast milk (that is fortified with extra calories) every four hours through her g-tube. Occupational therapy works with her everyday on oral stimulation. At this point they have advised us to back off trying to give her anything by mouth because it will contribute to her already significant oral aversion. While she is getting her feds through her tube we dip her pacifier in the milk and give her little "tastes." She does not like this very much- but if we can get a 1/2 of a ML then it is a success. We strive to keep all feeding experiences positive.
DEVELOPMENT: Faith really seems to have taken off in this area lately. Just last week she started really reaching for things- and just this morning we caught her looking at her hands!!!! This is a HUGE success! She has also been putting her hands to her mouth. A few months ago Faith's arms were so stiff you couldn't get them above her shoulders- now she lets us play with them. She is reacting more positively to touch. Everyone that comes to visit comments on what how she looks like a "normal baby." :) We've also been working on keeping her head up. Ever since she was trached she hates being on her tummy- she always coughs and gags. We've been working with physical therapy on this one. Everything that comes natural to other babies is difficult for Faith because she has tubes hanging out everywhere. It is also difficult for her to move her head around because the trach gets in the way. Nevertheless she is a trooper!!!
EYES: As you know we've been concerned with Faith's vision for quite sometime. The good news is as she gets healthier the more it seems she can see! She did have an eye exam a few weeks ago with a new eye doctor who confirmed that her vision in her left eye is next to none, but the right eye looks ok. Faith amazes us everyday with how much she is looking at things. Just the other day she started following people as they walk across the room! This is huge! Although she still does not make direct eye contact she smiles when we smile so we know she is looking at our faces. She has also been tracking objects!
TRACH/VENT: A lot of people have asked us about how long Faith will need her trach and the vent. While Faith could be weened from the ventilator that is not the point- the point is to make her comfortable and allow all of her energy to be used for growing. Like we've said before when babies are around 18-24 months (corrected age) their tracheal malacia can be managed without receiving positive pressure from a ventilator. As for the trach Faith's upper airway is still very swollen. A few weeks ago she had another bronch- her airway was so swollen the docs couldn't fit the smallest sized catheter they have down her airway. SO basically Faith will need her trach for a couple more years. This sounds like cake to us- if we can get her off of the vent in the few years the trach will not be a big deal!
So that just about sums it up! If you have any questions about Faith please do not hesitate to ask!
We appreciate all of your prayers and support!
Brian and Jen
PS: We forgot to add that Faith is now 12.5 pounds. :)