Learning to Juggle - Feb 5

I'm not sure where to even start with today's update so we're just going to go with a head to toe recap of everything.

First: She's got one less tube wrapped around her head! Baby Girl is officially off of all assisted breathing devices and doing great. This was the first thing I saw when I got there this morning:

Sleeping peacefully with a clear face (almost)!

Second: We had the swallow study this morning and the results weren't what we hoped for. The diaphragm plication surgery did exactly what it was supposed to - made it easier to breath. Unfortunately, now that she's breathing easier, she's not having to concentrate as much when she's eating by bottle. When the liquid is to thin (like breast milk is) it goes down her throat before her muscles have a chance to fully contract and send it down the right side into her stomach. But due to her anatomy (small throat makes everything a bit crammed together) if it's too thick (I.e. Formula with rice cereal or something similar) it gets hung up in the back of her throat and she can't swallow all of it making it an even higher risk for aspiration if she takes a deep breath all of a sudden to clear her throat. SO.... Not good results from the swallow study.

Next steps: Our next (and last) option is the surgery to insert a feeding tube into her stomach - as much as we were trying to avoid it (especially after the last recovery experience). Dr. G is working to get the anesthesiologist that was there for her extubation on the schedule since she's familiar with her case and the ENT will also be present - hopefully this will help eliminate the problems we had last time so she won't have to be intubated for nearly as long after this surgery. We will continue to work with her on bottle feeding - as she grows it's possible that she'll figure it out and we'll be able to remove the tube, but the more likely scenario is that she'll have it until she's eating enough solids to sustain her (up to a year). The only plus side to this option is that it will allow us to start planning for her to come home. 

Moving on: her feet casts were removed today to make them in to splints. She tolerated them well and they seem to have made a little bit of a difference in her foot / ankle area. We're planning to cast her hands tomorrow morning and turn them into splints tomorrow afternoon or Friday morning, then set up a rotation so that three of the four extremities are splinted while the fourth has one of the monitors we can't do without.

Needless to say, I've had a tearful day and could use some prayers for peace (and patience as we're starting to get bills and insurance claims to deal with) - and Baby Girl can always use prayers for healing.