Today is John's due date, so it's essentially his birthday for the next few years, since they'll base his development off his age from today. When we got to his crib this morning he decided he was ready to be a real boy and ripped his cannula off his face. The nurse was going to get him another one but got distracted, and we didnt remind her. His oxygen saturation has been in the 90s for the last two hours and we couldnt be more excited. I expect him to get tired sooner or later and will need to get back on a little oxygen, but this gives me so much hope!
Up until today we've just been working on feeding to get him home. Unfortunately this morning they discovered a hernia so he may have to have surgery on that before discharge. Hopefully that doesn't set us back too far.
With feeding he's been doing better. He takes around 50% by bottle each day when he needs to do 75% before he comes home. We had been working on nursing for 5 weeks until he stopped eating one day. We switched to bottles since we have more control of milk flow, and now I'd have to start all over again if I insist on nursing. He needs to come home more than anything, so we're going to see if he has any interest once he gets home. If he doesnt, at least I gave it my best shot!
He is still having sensitivity issues and plays possum so well he has many nurses fooled. If anything bugs him he closes his eyes and pretends to sleep. He still grasps my finger so hard his fingertips turn white, and opens one eye from time to time to make sure I'm still there. Nurses who dont have him regularly say, "I dunno, he looks pretty tired, lets just feed him through the tube and try again later", and this makes me crazy! He's not sleeping, he's in there somewhere and just wont participate because something is bugging him (bright lights, noise, gassy belly, it could be anything). He's also old enough to recognize his parents and favorite nurses, so he won't take bottles from someone new that he doesn't trust. This weekend we're hoping to take him in a private rooming-in room where just John and I will take care of him to see how he responds with better rest and fewer distractions. I hope it does the trick!
Lets see....other than that he's now a chubby 6 lbs 10 oz and cuter than ever. He has had high blood pressure for a few weeks so he's on bp meds and has been referred to a Nephrologist to see how his kidneys are doing. The ultrasound shows that one is bigger than the other, possibly because of scar tissue from his infection, or because they formed that way in the womb. So far tests show his kidneys are functioning well, but we're waiting for results from one last test to see if the kidneys are causing the high bps. His eyes are still doing well, and just have a little left until the blood vessels are fully grown out. If he has to go home with oxygen, he can't be discharged until the growth is done. They hope that will happen at by his next eye exam this next Wednesday.
He can be coming home anytime in the next week or two as long as the hernia doesn't set us back too far. I first had the goal of getting him home by his due date, which sadly didnt happen. Then I set the goal of getting him home before Easter, and that is getting less likely as each day passes. I should stop setting goals...I think he's just trying to ruin them. It's not really his fault, isn't that what all kids do to their parents? :-p
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