Thankful, Sad and Excited...
We just returned from a Riley visit. It was a good visit. We saw surgery and Speech Therapy today. Bricen has a little granulation tissue coming up around his button and I was concerned that they were going to have to burn it off in the office today with silver nitrate but the Dr. said we could try some steroid creme first.
We had some down time before the appointment with Speech Therapy so we decided to go visit our favorite NICU nurses. Walking back down the hallway that I walked over and over for over a month when Bricen was first born was so emotional. Simply put, I was and continue to be overwhelmed with my blessing known as Bricen Lane. We learned that two of the babies that were in Bricen's module and that had been there four and five months when we left did not make it. These poor parents. I can not imagine going through that anguish for four or five months and then losing your child in the end. One child's health deteriorated so much that his body made that decision for him. The other child, the parents had to make the decision to withdraw care because it became apparent that the child was not going to get any better and have no quality of life. I am a nurse and I've seen families make the decision to withdraw care in elderly people but I can not imagine being a nurse and seeing this in these babies or God forbid, being a parent and having to make that decision. I am just so sad for these parents. I don't know how long ago the parents had to make the decision to let the one baby go but I know from experience that when someone loses a loved one they continue to need prayers not only on the day or week or month it happened but for months to come. I know from experience that when you lose someone that has been ill and you have been their caretaker it is even harder to let go and learn knew routines in life that don't completely evolve around them. I certainly will be remembering to say a prayer for these parents and I encourage any of you that feel led to do the same.
Again, and I know I sound like a broken record but today more than ever I'm so thankful. As we were walking out I was noticing kids in wheelchairs, on trach vents, Down Syndrome babies, a kid on a vent going into the outpatient clinic on a stretcher. I would have taken any one of these situations and been just as proud and thankful for Bricen's small accomplishments had he been in any of these situations but I'm so thankful that Bricen's conditions will get better. Love this little guy!
Now for that excited part. :) It is always so good to see Speech Therapy. I've said it before and I'll say it again. Sarah just makes me feel better about things. (I trust Sarah.) We concluded and or confirmed that Bricen is going to skip over the bottle. We added some new things to our "exercises" such as working with a sippy cup and eating cheese puffs. This is not the typical hand a kid a sippy cup and move on. We use thickened smoothies and give it a little squeeze to help him work his mouth and eventually start to suck on it. He will be eating the cheese puffs himself and then I will be breaking off a little piece and putting it in the side of his cheek so that he uses that tongue to move it around and get it down. We will continue with the syringe and thickened baby food as well. He did great in the office and was doing exactly what Sarah wanted to see him doing. So proud of my Little Mister! At this rate he should be ready for Turkey Day before we know it! ;0)
Oh, I almost forgot...11 lbs 11oz today!! Very Good weight gain! :)
................I keep coming back on to update this particular post. I can't help but reflect on my mom today. As I've mentioned before, I had a sister with Cerebral Palsy. When I think about all the good and bad, up and downs, surgeries and little victories that my mom had with Bridget I can't help but marvel at not only Bridget's strength but especially my mom's. Brianna can recall a little more detail with Bridget's medical stuff because of the age difference but I do recall being excited when Bridget learned to drink from a straw and how proud she was when she was able to feed herself cheese puffs. Here I am, working with these same issues, same cheese puffs :0) with Bricen. God sure does work in mysterious ways....
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