The last few days have been very active and somewhat concerning at times. We had our visit from Grandma M and Uncle Ryan. They had a good visit, but limited time with Elias. I know they enjoyed what they had, but day to day you just never know what to expect from him. Saturday morning started off wonderfully. They had some time to hold (for the first time) and play with Elias. I should have the photos finished and posted in the next day or two, depending on Elias. We had a little bit of issue mid-morning where Elias turned very fussy and was at time inconsolable. He was having difficulties and it was hard to determine what exactly was the culprit. They watched as we worked on Elias and mom finally soothed him to sleep. This was another experience where we realized that you can never really comprehend all that is involved day-to-day with Elias until you experience first hand. It is a misfortune that at times Elias' visitors have to witness his down swings, but when you see it, it certainly makes you appreciate even more how much of a fighter Elias is and how hard he is trying with everything. Elias is AMAZING, we tell him this every time he does something wonderful. He always smiles when we say that word. We just want him to know that he is doing a marvelous job. Grandma M and Uncle Ryan brought Elias some new toys for Elias to play with also. He was having a good time checking them out and we look forward to many hours of entertainment. Unfortunately, this was a quick trip for them and they had to head back home. We knew they wanted to stay, but life doesn't stop or even slow down. We take our opportunities when we can and make the most of them. We are happy they were able to come and visit to spend time with Elias.
After they left yesterday, Elias began to have some spitting up issues again. This had happened after the last dilatation, but we thought we were in the clear this time since it had not started. It has come on with a vengeance and poor Elias is absolutely miserable. I just called the Surgeon on the phone and we are going to try feeding him at a slower rate for a few days. This is what we did the last time this happened in the NICU. I think our lesson here will be to have that alternative feeding plan in place for a few days post dilatation going forward. We are trying everything we can to keep him comfortable, but little seems to be working at the moment. Surely this will pass in a few days but that doesn't help poor Elias now.
While we thought we had a few weeks off from doctor appointments the calendar is starting to pop up with unexpected dates and we are still anticipating hearing from 2 other doctors on when they want to follow up with us. So what looked like a quiet couple of weeks looms more busy days and scheduling nightmares. Katharine and I are expecting to make a decision on what to do about the nursing situation this week based on what our case manager has to offer. Changing agencies is not out of the question, but we are tentative because we know the grass isn't greener on the other side, but there might be a few less cow patties to step in. Then again the cows just might have other issues. It is not the type of risk/reward counterbalance you would like to envision during a decision process, but it seems to be unavoidable. Well my short break for this update needs to come to an end. There are several things awaiting my doing! We hope everyone had a wonderful holiday weekend and are safe and happy the rest of the holidays!