We went to the NICU follow-up clinic yesterday. I just love Dr. Daily. That woman is one of the most intelligent, compassionate, informative & calming people in Vanderbilt. I love these appointments so much so that we choose to go every 6 months when we only have to go once a year. She tells us what we need to know & how to get it. It was from her that we first learned of Lane's hip displacement. Nobody else bothered to let us in on this. This go 'round we found out that we need to have his blood pressure monitored at every doctor's visit, regardless of who the doc is. The boy's BP has always had a tendency to be a little high. We discovered this back in the NICU. Yesterday it was 170. OK that is totally unacceptable! Surely that can't be right so they try again, 150! That's way too high, even for him. Before we left Dr. Daily made them take it one more time, 125. OK this is more like it, still high, but that's what we're used to with him. She wants an accurate record of his BP over a period of time. If it continues to run on the high side, and it probably will, then we may have to see a nephrologist (a kidney dr. in case I spelled it wrong). We saw one in the NICU but it was decided then it wasn't a renal issue. I guess we'll see what happens with this. I foresee medication in our future. I pray this is all that it leads to.
His weight was still a concern for the good doctor. Anyone who has picked Fatboy up lately would agree. So it's back to the dietician. Dr. Daily hopes that we could go to a normal 20 calorie formula. We've been on 26 calorie since the get go. Increased calories means decreased volume. This is what we had to have back in the day. Now we're bigger, older, and hooked back up! Maybe, just maybe, we could tolerate something that isn't quiet so elemental. I worry he might not be able to handle more volume but if it's done VERY slowly it might work. Drastic changes backfire on us everytime. I will be conceited for a moment and say that I am a Lane expert and they will have to take it one baby step at a time or it won't work. It would be nice to get away from the continuous nighttime feeds. This is where the weight gain comes from I think. You'd gain weight too if you ate for 9 hours straight. The purpose of this was to make up for the volume he supposedly can't handle during the day. We'll leave this to the dietician. After all she is the one with the degree, not me (at least not in that). All I know is something's gotta give. He's 2 and weighs 34 lbs. For now I can manage him but that could change one day. People ask me all the time how I do it. My answer is always the same. By the grace of God. He has given me the strength I need, not just physically, to walk on this path He's chosen for us. I know God won't desert me. He will provide for us just as He always has, but in His time and in His way. He's not going to let Lane live and then not give me a way to care for him here always. Of this I am certain. Naive? Denial? Nope. Faith, pure and simple. This whole journey is about nothing but faith. And hope and strength.
So for now the game plan is to monitor his blood pressure and tackle this food thing again. Why do I see myself learning to take his BP? Just another thing for Susan or Will to teach me. One step closer to that "honorary nursing degree" that I so deserve. :)
I would like to thank everyone for reading CaringBridge. This is just an easier format to use. I typed this entry on CaringBridge twice and it got sucked into cyberspace each time. For those of you that have seen my temper, you can imagine it was not pretty. Tech support pasted what was left of it here. He's so smart! He's going to put my entire CaringBridge site on this one. I hope you enjoy my ramblings on here. It's just a way to look back one day and see how far we've come. A way for me to remember. There is so much loss in forgetting.
His weight was still a concern for the good doctor. Anyone who has picked Fatboy up lately would agree. So it's back to the dietician. Dr. Daily hopes that we could go to a normal 20 calorie formula. We've been on 26 calorie since the get go. Increased calories means decreased volume. This is what we had to have back in the day. Now we're bigger, older, and hooked back up! Maybe, just maybe, we could tolerate something that isn't quiet so elemental. I worry he might not be able to handle more volume but if it's done VERY slowly it might work. Drastic changes backfire on us everytime. I will be conceited for a moment and say that I am a Lane expert and they will have to take it one baby step at a time or it won't work. It would be nice to get away from the continuous nighttime feeds. This is where the weight gain comes from I think. You'd gain weight too if you ate for 9 hours straight. The purpose of this was to make up for the volume he supposedly can't handle during the day. We'll leave this to the dietician. After all she is the one with the degree, not me (at least not in that). All I know is something's gotta give. He's 2 and weighs 34 lbs. For now I can manage him but that could change one day. People ask me all the time how I do it. My answer is always the same. By the grace of God. He has given me the strength I need, not just physically, to walk on this path He's chosen for us. I know God won't desert me. He will provide for us just as He always has, but in His time and in His way. He's not going to let Lane live and then not give me a way to care for him here always. Of this I am certain. Naive? Denial? Nope. Faith, pure and simple. This whole journey is about nothing but faith. And hope and strength.
So for now the game plan is to monitor his blood pressure and tackle this food thing again. Why do I see myself learning to take his BP? Just another thing for Susan or Will to teach me. One step closer to that "honorary nursing degree" that I so deserve. :)
I would like to thank everyone for reading CaringBridge. This is just an easier format to use. I typed this entry on CaringBridge twice and it got sucked into cyberspace each time. For those of you that have seen my temper, you can imagine it was not pretty. Tech support pasted what was left of it here. He's so smart! He's going to put my entire CaringBridge site on this one. I hope you enjoy my ramblings on here. It's just a way to look back one day and see how far we've come. A way for me to remember. There is so much loss in forgetting.
No comments:
Post a Comment