We are really hoping for some good, long sleep tonight, and here's why:
Emma ate at 7:00 this morning, and she stayed awake the whole way to, during, and from her pediatrician's visit. Then we got home, she ate, and she slept for about an hour. Then she ate again and stayed awake the whole way to and from the visit to Dr. Troup. She napped for about 20 minutes at Dr. Troup's office. Then we got home, and she ate and went to sleep at about 5:30. That's a whole day without sleep! It's totally off of her schedule, which is a little alarming when we're trying to get a 2-month-old to follow a different schedule than the one she's been on for the first 2 months, but hopefully it won't haunt us later...like tomorrow. When our sweet Aunt Kathey is coming to help me.
All this awake time and Emma was SUCH an angel. I can't imagine her being any better than she was today. She weighs 11 and a half pounds now and is 21 and 3/4 in. long. She's in something like the 30th percentile for her height and 70th for her weight...so basically she's short and fat. The pediatrician did tell us to start mixing Emma's Neocate formula with either Alimentum or Nutrimagen to see how those formulas do for her. It looks like maybe she does have a milk protein allergy, like some of you have suggested, and it's nice to finally be able to rule out other things so that we can determine that one fact. Hopefully she'll grow out of it in a year or 2 like most babies do. Emma's first day out in public...and she pooted loud and stinky ALL. DAY. All day. She never does this. Until her first public appearance. And she squeaks a lot because of something going on with her trachea, but a lot of babies do that and grow out of it. So she was the stinky, noisy baby in the waiting room. At least she wasn't crying!
Dr. Troup's visit went really well, too. He said, "Marvy," about her shunt incisions and the way it's draining. That's his funny way of saying that he thinks they look marvelous. Then he was shocked when we showed him her wound and how small it is. He was even MORE shocked with something he didn't expect to see - movement of her legs! I think in his mind, he had an idea of how much movement she would have, so when we flipped her on her back (the first time he'd ever seen her on her back and awake) and she started moving those legs around, he was visibly and audibly excited. He started telling his nurse all these types of movement to document in the computer. We've been seeing this movement all along and didn't realize that his expectations were lower than what she's been doing. So that's encouraging! The bad news is that she has to have a CT scan in a month, and we have to do "natural sedation." That means getting her so hungry and tired that she's screaming crying, then giving her a bottle and letting her go to sleep. Then she has to just be still for 2 minutes while they do the CT. I'm going to be worried about this visit for a month because Emma doesn't sleep after a bottle during the day. She just doesn't. So we might be there for hours. There's no alarming reason to have the CT scan; it's protocol for his shunt kids.
We got one of many medical bills in the mail today. This one in particular was for the NICU doctors. Essentially, they got paid a minimum of $846.00 per day to come by and see us for 10 minutes. If I had known that, I would have had them waiting on us hand and foot. You just let me know if you can find another job where you get paid $846 for working 10 minutes. Multiply that by however many babies a day...wow. And some days were more expensive than that. Probably if they had to actually handle a child. Anyway, the NICU doctors charged a total of $46,799.00 for 43 days in the NICU - there are still 7 days that haven't been billed yet. That doesn't include nursing staff, medicine, and the actual use of the hospital facilities. I'm interested to see how much her stay was. I'm very fastidious with our personal records, so I'll have a number one day. Insurance will cover some of this, but I've heard that it won't cover it all. I know we'll be ok, though - God has always taken care of us, and there's certainly no reason He's going to stop now. For one thing, no child care costs. My sweet mother is retiring from her paid, part-time job and is beginning an unpaid, full-time job. I really hope that baby hugs are payment enough.
Today Emma found her fist with her mouth. She's not quite sucking her thumb, but I would appreciate it if the fist would do when I don't want to get out of bed to put the binky back in her mouth when she's going to sleep.
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Mary Beth,
ReplyDeleteEmma is beautiful! Glad the day of appointments went well. I too was amazed at the price of the NICU! Thanks for keeping us posted with news and pics. Virginia
mary Beth, I am glad the appts went well. It sounds like everything is progressing in a positive way, if in a "stinky" way! It is a sin what meducal bills can be, however, God will take care of ya'll! Love you all.
ReplyDeleteHolly
Emma is so precious! I am so glad that all of the appointments went well. How funny that she was a stinky girl today. Babies have no shame. :)
ReplyDeleteLesli Porter
Hi Mary Beth,
ReplyDeleteSo many blessing in your latest post sans the medical bills!! Emma is beautiful. Can you now pick her up pretty normally, or do you still have to tiptoe around the incision?
Praying every day. Both Hannah and Elizabeth pray out loud for Emma every night.
Janie
found your blog today. My son was born with spina bifida and hydra cephalus so has a shunt too. He wasn't born to me I adopted him when he was three. So I had no experience of those early difficult months. he is nearly 38 now and live independently
ReplyDeleteShe is a beautiful little girl
I wish you all the best and will pray for you all.
Hi. I found your blog through my Mom, who also works at Bryson. My daughter was born at 26 weeks and spent 89 days in the NICU back in 2002. Anyhow- has anyone told you about Medicaid coverage through TEFRA? It is for medically fragile kids, and they are eligible for it irregardless of income. We have private insurance, but anything that private insurance does not cover, TEFRA will pick up. I am surprised that a social worker has not told you about it. It seriously saved us thousands of dollars. Feel free to email me if you want more information- amylarosa@bellsouth.net
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