Friday was a long day

Sophia is doing well after a long day on Friday. She now has a button style g-tube. But let me tell ya waiting for surgery is about as painful as waiting for paint to dry and water to boil. Especially when you are at a new hospital with doctors and nurses you don't know. Everything went very well and all of the people we encountered were very nice, but we definitely missed Cincinnati Children's. Prep for the surgery started at 4:30 am with Sophia's last feeding before surgery. The feeding ended at 5:30. We gave her a bath at 7 a.m. grabbed a quick bite to eat and headed to Saginaw. We arrived right on time at 10 a.m. Her surgery was scheduled for 11:15 but we did not get in there until around 12:15-12:30. Her surgery was literally 15 minutes or less but with recovery in post op and in a regular recovery room we did not get out until about 2 p.m. She got her first feeding at 3 p.m. She was pretty tired from the sedation medicine but did really well with the whole thing. The nurses also could not believe what a wonderful disposition she has and that she had such a rough start, because she looks so healthy.

Patrick and I were really excited about the new g-tube thinking that it would solve all of our woes with the malencot. What we learned is that there was quite a difference between the two and that we had a lot to learn. With three days past since surgery we have come to like the new set up but we have not worked all of the kinks out yet. Getting the new tube was kind of like getting a new car. You like it but you are not sure about all of the new features and you are nervous about breaking things. I once again have to reiterate to myself that Feeding is the hardest part. Sophia has been making baby steps with oral feeds, she has taken around 6ml in drops from a bottle, is accepting positive touches around her mouth and really sucks on the pacifier at night. We had our first visit with the Speech Therapist today and we showed her how we have been working with Sophia and she said to keep up the good work and also gave us some additional tips. Tomorrow we go to Physical Therapy (PT) and the home health nurse will stop in. Wed and Thurs are Dr appt free and Friday we go back to PT.

Sophia also got to meet amd spend time with her Auntie Jill and Unclie Chuck from Minnesota this weekend. It was really nice to see them and have them stop in while on vacation celebrating their 40th wedding anniversary.

g-tube

On Tuesday we went to the pediatric surgeon in Saginaw to have Sophia's G-tube swapped out (from a monocot(rubberized tube) to a button style). When we left Cincy we were told it was an easy fast 10-15 minute thing and that it could be done in the office. We found out that, that was not quite the case. We met with the Surgeon and he said that the g-tube swap needed to be done in the O.R. as an out patient surgery. Although the thought of her going back in an O.R. again rattled my cage a little it really is not a big deal. To make the G-tube exchange as easy as possible on Sophia they want to sedate her so she doesn't feel any pain. The surgeon said the anesthetic is like what they use when you have dental surgery. The procedure is scheduled for this Friday, July 9 at 11:30a.m.. We are to arrive at Covenant Medical Center in Saginaw at 9:30a.m. The procedure itself should take no more then 30 minutes.

Why are we having the tube swapped out? Well if you have ever used a rubber band time and time again you find out that the elasticity eventually wears out. Same is true with a monocot. The end that we use to attache her feeding syringe to is very rapidly loosing it's elasticity. Why is that a problem? With the syringe in the tube loosely you can easily have the syringe fall out of the tube while feeding Sophia. This causes her to loose valuable calories and also makes a huge mess. we currently have tape and rubber bands assisting with keeping the syringe and monocot g-tube together while feeding. We have also had the stopper pop out when she pushes against it also causing her to loose needed calories and also making quite a mess.

Other then that Sophia is doing really well, she continues to grow and has been enjoying many new things. Today she even went to her first concert at Dow Gardens and listened to Brett Mitchell (our favorite musician). She is also smiling more and more and is becoming increasingly active. She now grabs at her burp rag and rubs it on her face and also has really started sucking on her hands in the evening.

I'll give you all an update on the g-tube swap in the coming days.