I'm feeling better today but I didn't think I was totally well yet so I didn't go see Gaines today either. Beau got to go twice. I HATE not going but I know its the best thing for him. I would die if he got sick and it was because of me. I had a little fever this morning but nothing now so I should be good for tomorrow. I bet he's grown.
Gaines didn't have his best night last night (probably because he missed his mom). His oxygen was between 75-80% so his nurse checked his blood gases and they didn't come back great so they did a chest x-ray. The nurse practitioner didn't see anything on the x-ray to cause her to change things so they waited until the doctor saw him today. Keep in mind that (according to our doctor) 75-80% is not much more than 60% on cannula because he breathes in room air around his nasal prongs.
So...when the doctor saw him today she made some changes. Basically, she thinks that Gaines was just getting tired and she wants him to rest for the next 24-48 hours. Right now he's at 100% oxygen at 3 liters. Obviously, his sats are great. The new plan is to leave him at 100% and in a day or two, start to wean the flow. This makes sense to me because when we take him home on oxygen, he'll be at 100% just hopefully less flow. They aren't trying any bottle feedings for 24 hours because they really want him to rest.
Also, he's back on the lasix and on a higher dose. He had an eye exam today and passed with flying colors. I'm not exactly sure why he needed it since his last one at GW was great but whatever.
I'm coming to terms with the going home on oxygen deal. I think I was a little sad about it because through this whole deal I'd been focusing on the "prize"...getting to take a healthy Gaines home. I just feel like now I'm not getting the prize. I'll be taking a not totally healthy Gaines home. Beau says that's still the prize, we just have another step before we get there. I know that he's right and I'm warming up to the idea...I guess I'd better. I just hope that he's home by labor day.
I guess that's about it for now. Beau and Reed are watching cartoons on the couch before bed I think I'll join them.
Love to all,
Brittany
6 comments:
Try to take one day at a time and not worry about when goals happen, because they will! When my child was in NICU I felt just like you did, and I wanted him to hurry and be completely normal when he came home. However, now he's 8 years old and it seems like so long ago that he was in NICU, and all the worries about his daily progress seem so small. We had to come home on a heart monitor that he wore 24 hours per day, and that stressed me out because he couldn't attend daycare while on it. It was not fun to have him on a monitor that kept waking us up at night, but it was only for 4 months. At the time, I let all the small setbacks get me stressed and depressed. I wish I could have seen the big picture more and realized just to take it one day at a time and that it would all be normal again one day.
Having your family of four under one roof is a wonderful prize (the rest will come)!!
Hang in there my dear...better days are definitely ahead. God bless.
Kelli in Grand Bay
Hang in there. Your little one has come so far already and I am amazed by it. We have such an awesome God!
Having that precious baby in your home at last will be the most amazing moment for you! The oxygen will not take away from that AT ALL. Seriously, even though it seems daunting at first, you really do get used to it. And our doctors always said that once a baby comes home he makes rapid improvement because he's with his parents 24/7 in such a comfortable, loving environment. This was totally the case with our son, and he was off of oxygen just 6 weeks after being home.
Praying for Labor Day!!!
Hang in there...yall are doing great. You are going through many of the emotions I went through and they are all normal. Until Gaines is home and safe your emotions will continue to spiral up and down. I was so ready to take my baby home and it hurt so bad to see everyone around me go and then some. I hope you know that you two are so incredibly strong and admired by many. My prayers continue to be with yall.
In regards to the eye exams...I can't remember but I think he will have 4 before he leaves. Since he is a preemie he can develop whatever they are looking for up to a certain point. He will then go back at a year to get a follow up. If nothing is wrong then you will not have to do it again.
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