8 weeks

Sophia Updates: Today makes our stay at Riley 8 weeks and we have yet to be told when could be heading home or what steps it will take to get closer. I have a Care Conference arranged for us to discuss the goals for Sophia, progress, expectations, follow-ups and future plans for Thursday afternoon. Of course, all of the questions I have dying to have answered will only come with time, but I will take what they can give me for now. Like I have said time and time before, the only thing in my control at this point in Sophia's life is making sure I do everything in my power to see to it see gets the best care, specialists, educations and resources she needs. As far as things go with Sophia lately, she has been doing wonderful. Except she has her days and nights a little messed up since being a sleep for several days after the surgery and then getting a fever. She was quite the night owl over the weekend. Monday was a good day. John and I took the first course in the Trach Care classes and then we got to practice on the real thing, Sophia:) Let's just say the doll was A LOT easier. We were able to change her trach ties and clean her site and change the gauze. It all sounds simple enough, but had in a very unhappy, swarming baby, a butt-load of secretions pouring out from every whole possible and two very anxious parents. It was enough to make all three of us want to curl up and surrender. Oh of course with time and practice it will become like second nature BUT do not underestimate the seriousness and stress level this trach business has on the three of us. In time we will (I HOPE) be able to do this in our sleep and in time Sophia will be able to sleep right through it?!?!? UGH!

Yesterday, I think I would have titled this blog "Fallacy and Frustration". Reason: I guess I had the false impressions that when and if Sophia comes off the vent we will be hose free...FALSE. I was told that she would need a Trach Collar to go home on, well to me COLLAR sounds just what it is a collar. I had no idea a collar meant it was a collar then attached to a hose for oxygen and humidity. Seriously! I just want to get rid of the hoses and wires. For crying out loud, I would like to pick my baby up free of HOSES AND WIRES!!! Is that so much to ask??? But to my luck and misperceptions, we will remain on hoses and wires and monitors once we come home. I am guessing you can see where the FRUSTRATION part is coming into play. Also, given the amount of equipment and level of care she is going to require around the clock, that term mobile is growing hazier and hazier. Today, the tried to ween her off of the pressure support for a few hours and that didn't go so well. She was quite fussy and once she got worked up she didn't settle into her breathing as they had hoped so they put her back on CPAP and PSV. We are going to try again tomorrow. This time I told them to wait until I was present so I could console her. She likes mommy to hold her better than the nurses:) So fingers crossed that is successful. They will keep her off for a few hours and then add it back and rotate every 4 hours or so until she has been successfully weened off the pressure all together. I hope this works!

Today, I came into the hospital with every intention of demanding ways to hold my child the way I want...well I got it (with little demands on my part)! Sort of... the nurses worked with me today with tips and tricks for being able to pick up Sophie, hoses and wires and all, by myself. At home, I will not have nurses to help me get her when I need and hold hoses in place while I move her about. So we worked on rigging up ways to fasten hoses to her and wrapping these wires there and grabbing her and everything at once and AAAGH. It works but I am not going anywhere fast again. I was like a spider. One hand on her, one on the vent hose, one on the feeding tube, one pouring in her formula, and my nose holding in her paci!! I will never underestimate the saying about mothers needing an extra hand. I literally could use about three more to handle all of the things I need to do with just moving, feeding, changing, and rocking my baby. Hmm... those simple things many consider the easy stuff. I also got to help with the Trach change today. I removed the trach while the nurse put in the new one. This is undoubtedly a two-three person job, literally. Lucky for John and I that only has to be done once a week, unless for emergency reasons. It was also the first time I was able to see the incision site completely. It was exactly as I had imagined seeing a hole in my child's neck:/ I am not quite sure that I will ever fully get use to that site. Some things are easier that others....The suctioning part is easy. Cleaning isn't too terrible. Changing the gauze makes us both sweat. And adjusting the trach ties while holding the trach in place will require a cocktail afterwards.... (kidding people). So today, I was able to do all of her care by myself with the nurses assistance. From here on out John and I will be doing more and more so that when we do get home and our completely on our own we won't freak out too much (that is the hope anyway). OT came to visit with Sophie today as well. I got some good tips on things to do with her to keep her moving forward so she can start reaching her milestones. Again, being in the hospital for two months and having 5 surgeries has put her a little behind; however, with the right help we will continue to work with her to meet her needs and goals.

ALL in all we have had a few more good days. It is so wonderful to see her smiling and comfortable. She is starting to get more and more personality and facial expressions. It about time she is able to act like the baby she is meant to be. So as I end, I continue to ask for prayers that we continue moving in the right directions and comfort and support along our long journey.