Super quick update...
Last week, Connor was switched from 22-calorie formula to 24-calorie formula (Special Care). He'd been on this formula once before, prior to his last infection. Back then he started having super frequent and runny stools, which they attributed to his amoxicillin. Then he got sick, and once better, they started him up on the 22-cal formula (NeoSure). Early last week, his weight was beginning to fluctuate, so one of the neos decided to put him back on the 24-cal formula. And... he started dumping, again. Of course we brought this to everyone's attention, every time we changed his diaper it was mentioned to either his nurse or a doctor. We were told he just needed some time to adjust to the higher calorie formula and all would be well.
On Thursday night, after losing 7 ounces within 24 hours, we knew our dreams of a Good Friday homecoming were dashed. Connor felt lighter to us, his face was more gaunt, and his eyes were bulging a bit. This rapid weight loss greatly concerned the neo on duty, so Connor's electrolyte levels were checked, and sure enough - way off - and he was extremely dehydrated! Replacement fluids were started. After a lengthy conversation with his doctor, he agreed with us that the 24-cal formula was no good for Connor, and he was switched back to the 22-cal formula. (Moving forward, any adjustments to Connor's menu will be determined by his pediatrician and his GI doc.)
Hallelujah!
This latest curveball has been frustrating as all get out... not only because we had our hopes up for the Good Friday discharge, but we also realized that had his formula not been changed, he would have come home on Friday. We're so tired of celebrating his first holidays in the hospital.
The good news is that Connor's gained 6 oz. back since Thursday night. (Currently at 8 lbs., 5 oz.) He's still on fluids, until his sodium levels are back in check. He's eating like a champ, burping well, spitting up a bit, and his stools are normalizing. He will need to come off the fluids sometime tomorrow and gain weight tomorrow night to be ready for his "planned" discharge on MONDAY.
Luckily for us, Connor's had the A-Team of his primary nurses assigned to him now and through the weekend. It helps so much when the person taking care of him knows his cues, understands his parents, and seems to genuinely care about him.
Connor has follow-up appointments like you wouldn't believe (a few more specialists have been added since my last post), and I must admit, I'm feeling very overwhelmed. He has 9 different prescriptions, with a dose of something due every 2 hours - except for at 6pm and 4am. (Yes, Mom, we will be using timers.) We want him home so desperately, and yet I feel I will have no time to get everything medical-related properly organized. We're so ready to be his full-time caregivers... we've been ready for months. It's just all of this extra medical stuff that makes me want to find a padded room.
I know we can do this... mostly because we have to... but I'm feeling a little paralyzed at the moment.
(So I'm using my free time to write a blog post??)
Baby steps.
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6 comments:
Aimee - you are one of the most organized and put together people I know!! You will do great at keeping Connor's medications in order. Make a list or a calendar - I'm sure it won't be the easiest thing at first, but like you said you have to, and after like a week at home doing it, I'm sure it will just be second nature to both you and Brian. Connor is in good hands with you and Brian and looking so cute, might I add! Fingers crossed for a homecoming tomorrow. HAPPY EASTER to you and your cute family. :)
That advice about making a med list is a good one... each med will have a time and a box to check off when you have given it - it's much easier to keep track that way.
I know you can do this exciting and scary thing - that's why Heavenly Father sent him to you :)
That exact same thing happened to us our last week. Bumped him up to 24 k/cal against my desires, stooled out, lost weight, had to start over and get delayed back on 22 k/cal. Slow and steady wins the race, people! Keeping fingers crossed for a WONDERFUL Monday!
Your NICU rollercoaster is finally coming to an end. Now your at home rollercoaster begins. You will do great!! It sounds like you have a great support system to help. I have learned to not be afraid to ask for it. We are soo excited your time has finally come to take your baby through those doors to the outside world and enjoy yourselves as a family!
You can do this! When you get home you know you will have all kinds of people checking your blog for updates, but your first priorities are taking care of that little boy and taking care of you (making sure you don't have to have the padded room...)so just require the bare minimum and add to it as you feel you can. How exciting!!
Erin and I just read your blog and we're sending you big hugs and lots of hope that things are going well today.
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