Waiting for surgery

A bit of an update, I know I filled in a few things in the last post, but here is a more technical update on Faith.

Her discharge train, which is just a tool for parents to monitor their baby's progress has turned from 3 red and 2 yellow, to 3 green and 2 red. Greens are good, reds are bad...right now, her greens are breathing, jaundice and growing, she is good to go in those areas, her red areas are feeding and tests. So, we are definitely heading to the all green stage...

Our meeting with the dr went well, he basically said that he totally respected our decisions and that we were not going to revisit the past at all...I wonder if he just didn't want to be yelled at like we did the other dr...more on that another time, if I haven't shared it already...

He told us that the best place for Faith to thrive is definitely at home, and then told us what our options are for bringing her home soon. He wants to know that the family is all together, and she is still safe to come home...but she needs to know and be loved by her siblings and extended families as well.

So, the only option that was set out for us was having the surgery to put in the g-tube. It is like a catheter that is placed into the stomach through a small hole. We would have the medical equipment here at the house to feed her properly, which would be a pump, it would pump her food into her stomach over 2 hours...that is what she is getting right now through the tube in her nose.

The tube that is in her nose, the ng tube, is not the best thing for a long term situation, which is what they are predicting for Faith. The problem with the ng tube is that it keeps the valve to the stomach open and can cause reflux problems. She is having these issues now, at the hospital and is on medication for that. Instead the tube would surpass the valves and just go straight to the stomach instead.

Her occupational therapist has been working with her, but is still noticing that she is not able to coordinate her swallowing and breathing the way she should. There is much concern with her aspirating her milk into her lungs (inhaling down the wrong pipes...) and that would affect her lungs and potentially her oxygen levels again...we DO NOT want to go down that road again, as that is what started all these problems to begin with...

So, while she is at home with the pump and g-tube, we will continue working with her to help with the bottle feedings and an OT will be visiting us at the house to work with her too.

We have been told that we live in a great area for support with these issues and really feel very fortunate. Things could definitely be worse then they are...

There are still a few other minor issues that we are watching and working with her on as well. During the delivery, because she was turned the wrong way and sat on an angle, they had to turn her to help her out. During that process there was nerve damage in her left neck/shoulder area, so she has a very slight, lack of movement in her left arm. It is very small though, something we had not noticed, but the OT did and she had someone from the development clinic double check and there is definitely a problem there.

The other problem is that Faith has her fists closed very tightly, the majority of the time, even while relaxed. Most babies do that in the beginning, however she keeps her thumbs inside her fist instead of on the outside. This is apparently a sign of the brain injury that she sustained and could potentially affect her muscles in those areas, so for both of these issues we are going to be given a stretching 'regimen' to help her keep the muscles loose and moving so they won't stiffen up.

Towards the end of the meeting, the dr told us that by having the g-tube in place, w are looking at approximately 2 weeks and she could be home...depending on her recovery, and she has proven to be a strong fighter through this all. We have heard that she may be able to have the tube put in tomorrow (Sunday) afternoon sometime, so we are praying she gets an appt to get this started.

We are asking for prayers and believing that she will come through the surgery fine and will recover afterwards really well. That she will come off the ventilator quickly and with no concerns, that her feedings will start and will be fine after the 24 hour period and that she will be home in 2 weeks.

We are preparing for our lives to change drastically. When we can go out and when we can't, scheduling feedings and appointments, being more aware of the cleanliness of our house and keeping it up daily, and so many other things that we all take for granted most of our lives...

But she will be home and we are thrilled to finally have a time frame. I may have forgotten some things, and will probably remember later on...I may just add it later...