I haven't mentioned a whole lot about what K is up to over the past couple of weeks. I've been a bit distracted. Let me take a moment here to point out a couple of things.
She hasn't done well with all the craziness of the past week. She's hanging in there, but her schedule's off and she's had grandparents here a lot. Greg has been home, which is weird for her, but we were gone for three days at the hospital and since then we've been coming and going a lot. This is not part of our normal routine, to say the least. She had gotten to where she loved going to school and would basically kick me out of the classroom if I stopped to chat with her teacher when I dropped her off. The past couple of weeks she hasn't wanted to go and this morning she actually cried and clung to me for dear life (which, of course, set me off as well). Hopefully we'll be able to get her back into some type of routine and provide a little more consistent environment over the next few weeks. She needs it.
Meanwhile, she's starting to scare us a little with her crazy intelligence. I can't speak to what two year olds are supposed to do, but she seems to be making some pretty big leaps with her abilities. In addition to figuring out that she can climb just about anything, including the wall, she has suddenly started coloring in a more focused manner (scribbling over individual objects instead of just across the entire page) and drawing "people." I wouldn't have known they were people if she hadn't pointed to them and told me they were Mamaw and Papaw. She's also started asking to watch Mickey Mouse Clubhouse - but requesting specific episodes. And the kicker - she can use our Android tablet. Things we never taught her, like how to turn on the video player and watch MMC. I downloaded a few toddler games for her a few weeks ago but she's had trouble playing some of them, like the letter puzzles. Then one day this past week she started doing them with very little trouble at all. Now she can find the aps, start them, select which game she wants, and play them. Then she'll exit it and turn on a tv show. Seriously. I'm a little freaked out by this. Partially because it seems weird to let her use our phones and tablet, but she's pretty careful with them and I figure in her world using electronic devices is a skill she's going to need early on anyway.
I read a thing in Parenting Magazine the other night that said the average two year old should be able to make simple two word sentences. Ummm. My kid is making 5+ word sentences and combining them into conversations. She's very opinionated and likes to share those opinions verbally. She's also learning multiple-syllable words. Like chandelier. She learned that one in the lobby at the hospital. She also remembers songs, loves to sing them, and sometimes makes up her own songs and dances. And did I mention she's reading books to me? She can look through several of her favorite books and recite them to me, especially if they are rhyming books. The magazine also said she should be able to count up to three objects. She can get to ten, and sometimes higher although she tends to stall around 14. One of the toddler games she likes is connect the dots, and she can complete the ones with up to 23 dots.
This afternoon she had been playing puzzle games on my phone and apparently figured out how to send a text to my dad and emailed Greg...
And in the time it's taken me to type this she's taught herself how to adjust the volume on the videos on the tablet and downloaded two games from the market. Sigh. Hope they were free!
Anybody out there with a two year old know if this kind of stuff is normal? I really don't know...
Friday, January 20, 2012
A Brief Update on Luke
I know most of you have followed the updates on Facebook, but I wanted to post something just so I'll have the info later.
Luke's done great over the past few days. Wednesday night he got moved into one of the "private" little rooms in the NICU. Can I just take a moment and have appreciation for the fact we're at Baptist where they have private little rooms in the NICU, along with an awesome staff, calm atmosphere, and respectful policies? I love that we can visit any time around the clock except shift change (6:30-8 morning and night) AND that they will close the NICU to visitors if they have a new admission or any serious problem with one of their babies. A couple of times we've gone up there right as they were closing for an admit, and my mother-in-law had to leave once because they were admitting a baby. I'm ok with that. And if they have a serious complication they need to deal with, I totally respect the fact that they don't want visitors back there getting in the way. I'm sure we disrupted things quite a bit the day Luke was born and I'm glad they closed it so there weren't distractions while they got him stabilized. If it inconveniences me a little to have to wait or come back later, I'm ok with it.
Sorry for the little detour there. Anyway, since they put Luke in a room we were able to let Kaycie back to visit with him for a minute. She wanted to hold him but had to settle for holding his hand and helping me hold the bottle to feed him. Then she wanted to go back to the waiting room to play, because that's just way more fun. :)
He had an MRI on Tuesday and the word from the neurosurgeon was that he wasn't concerned by the size of the clot and didn't think it would have any long term effect. He couldn't tell if there was any subdural bleeding (inside the brain instead of on the perimeter) but if there was it was minimal and shouldn't cause any additional problems. He wants to do a follow up MRI in a month and will be seeing Luke for additional visits after he is discharged. I feel good about that.
Since then he's gone two nights without any major breathing episodes requiring oxygen, so today the doc said we could start the countdown. Today is Day 1. He has to have five good days before they'll send him home, so if all goes well we're looking at next Wednesday, exactly two weeks from when he was born.
I'm pretty excited about that.
Today he weighed in at 8lbs 13oz. He's a growing boy. :)
Earlier this week the we began discussing the financial issue of this little emergency detour. It won't be cheap, but we'll find a way to deal with it. The part of the discussion that hit me pretty hard was when Greg pointed out that it's a really good thing we didn't buy the house we wanted a year or so ago.
We were very, very, very close to buying that house. It was a little over our budget and it would have made things pretty tight, but we could have managed. It was a great house. Perfect for what we wanted, really. The layout. A big extra "office" area. Large living room. Big master bath. Awesome deck off the back. Great neighborhood... But we just couldn't get comfortable with buying it. When the guy who had a contract on our house kept having to delay because he couldn't get his financial records in order, we took advantage of the opportunity to back out of both contracts. It was so hard to do at the time, because we wanted that house and we really really wanted out of this one. But it just. Didn't. Feel. Right. I've never regretted making that decision, but it always seemed weird that it felt so wrong when everything was perfect. I think I'm starting to understand. Now we're facing some monster bills, but we have some extra savings and a little extra room in our budget. We also have a paid for house that we can refinance if we need to. Medical bills of this nature can bankrupt people. I know that too well. But right now it's not real high on our list of priority concerns. We will take care of it one way or another. I can't tell you how nice it is to not have to freak out about that.
Luke's done great over the past few days. Wednesday night he got moved into one of the "private" little rooms in the NICU. Can I just take a moment and have appreciation for the fact we're at Baptist where they have private little rooms in the NICU, along with an awesome staff, calm atmosphere, and respectful policies? I love that we can visit any time around the clock except shift change (6:30-8 morning and night) AND that they will close the NICU to visitors if they have a new admission or any serious problem with one of their babies. A couple of times we've gone up there right as they were closing for an admit, and my mother-in-law had to leave once because they were admitting a baby. I'm ok with that. And if they have a serious complication they need to deal with, I totally respect the fact that they don't want visitors back there getting in the way. I'm sure we disrupted things quite a bit the day Luke was born and I'm glad they closed it so there weren't distractions while they got him stabilized. If it inconveniences me a little to have to wait or come back later, I'm ok with it.
Sorry for the little detour there. Anyway, since they put Luke in a room we were able to let Kaycie back to visit with him for a minute. She wanted to hold him but had to settle for holding his hand and helping me hold the bottle to feed him. Then she wanted to go back to the waiting room to play, because that's just way more fun. :)
He had an MRI on Tuesday and the word from the neurosurgeon was that he wasn't concerned by the size of the clot and didn't think it would have any long term effect. He couldn't tell if there was any subdural bleeding (inside the brain instead of on the perimeter) but if there was it was minimal and shouldn't cause any additional problems. He wants to do a follow up MRI in a month and will be seeing Luke for additional visits after he is discharged. I feel good about that.
Since then he's gone two nights without any major breathing episodes requiring oxygen, so today the doc said we could start the countdown. Today is Day 1. He has to have five good days before they'll send him home, so if all goes well we're looking at next Wednesday, exactly two weeks from when he was born.
I'm pretty excited about that.
Today he weighed in at 8lbs 13oz. He's a growing boy. :)
Earlier this week the we began discussing the financial issue of this little emergency detour. It won't be cheap, but we'll find a way to deal with it. The part of the discussion that hit me pretty hard was when Greg pointed out that it's a really good thing we didn't buy the house we wanted a year or so ago.
We were very, very, very close to buying that house. It was a little over our budget and it would have made things pretty tight, but we could have managed. It was a great house. Perfect for what we wanted, really. The layout. A big extra "office" area. Large living room. Big master bath. Awesome deck off the back. Great neighborhood... But we just couldn't get comfortable with buying it. When the guy who had a contract on our house kept having to delay because he couldn't get his financial records in order, we took advantage of the opportunity to back out of both contracts. It was so hard to do at the time, because we wanted that house and we really really wanted out of this one. But it just. Didn't. Feel. Right. I've never regretted making that decision, but it always seemed weird that it felt so wrong when everything was perfect. I think I'm starting to understand. Now we're facing some monster bills, but we have some extra savings and a little extra room in our budget. We also have a paid for house that we can refinance if we need to. Medical bills of this nature can bankrupt people. I know that too well. But right now it's not real high on our list of priority concerns. We will take care of it one way or another. I can't tell you how nice it is to not have to freak out about that.
Tuesday, January 17, 2012
Rain, Rain Go Away
I'm listening to it pour down rain outside. Normally, a nice rainy (tornado-free) day is very pleasant for me. I like the white noise effect of it. Today it's just dreary, which matches my mood perfectly.
I talked to Dr. Miller on the phone this morning and didn't hang up feeling encouraged. The truth is, I'm running out of things to be positive about. Every day I've made a big effort to focus on the good things that happened - Luke started taking a bottle, he got a tube out, a test came back negative, he was taken off oxygen... There's been little things progressing each day, culminating with getting him off the warmer table and in a portable crib yesterday. But he still can't go 24 hours without an apnea spell.
Today Doc basically recounted what we already knew, what wasn't wrong, and brought up some things that might or might not be going on. The neurosurgeon he is consulting said he couldn't determine if there was any bleeding actually within the brain or if there was any brain matter affected. He said we wouldn't likely be able to see that until the clot around the brain dissolves. He also mentioned the possibility that there could be an unusual cluster of blood vessels in that area of the brain that caused the bleed. The neurosurgeon did request an MRI which they were going to try to schedule for today. They won't have results from that until tomorrow at the absolute earliest, since the neurosurgeon reading it is at another hospital.
The problem is, of course, he's still having episodes where he isn't breathing very well and his oxygen saturation levels drop dangerously low. And he doesn't always recover on his own. He can't go home while he's still doing that. I asked the big question today - are we looking at days, weeks, or months? The answer was what I expected - they don't know. BUT, he really didn't anticipate it to be months. Which leaves us at weeks. One? Two? Three? Dunno.
I talked to Dr. Miller on the phone this morning and didn't hang up feeling encouraged. The truth is, I'm running out of things to be positive about. Every day I've made a big effort to focus on the good things that happened - Luke started taking a bottle, he got a tube out, a test came back negative, he was taken off oxygen... There's been little things progressing each day, culminating with getting him off the warmer table and in a portable crib yesterday. But he still can't go 24 hours without an apnea spell.
Today Doc basically recounted what we already knew, what wasn't wrong, and brought up some things that might or might not be going on. The neurosurgeon he is consulting said he couldn't determine if there was any bleeding actually within the brain or if there was any brain matter affected. He said we wouldn't likely be able to see that until the clot around the brain dissolves. He also mentioned the possibility that there could be an unusual cluster of blood vessels in that area of the brain that caused the bleed. The neurosurgeon did request an MRI which they were going to try to schedule for today. They won't have results from that until tomorrow at the absolute earliest, since the neurosurgeon reading it is at another hospital.
The problem is, of course, he's still having episodes where he isn't breathing very well and his oxygen saturation levels drop dangerously low. And he doesn't always recover on his own. He can't go home while he's still doing that. I asked the big question today - are we looking at days, weeks, or months? The answer was what I expected - they don't know. BUT, he really didn't anticipate it to be months. Which leaves us at weeks. One? Two? Three? Dunno.
Monday, January 16, 2012
The Good, The Bad, and The Awesome
Sigh.
It's so nice to have Luke off the warmer table and into a crib. We can just grab him and pick him up and snuggle without a production of carefully detaching and reattaching tubes and wires and having to be careful not to pull anything out... I could have held him all day. Greg got to hold him for the first time (they took him so fast after delivery that I was the only one who got him, and only for a very few minutes) and my mom got to hold him. AND I got to change two diapers and feed him his dinner! A good day, indeed.
The bad - he had five episodes last night where his breathing got low enough to require significant oxygen intervention. The doc is concerned that he's still struggling at this point. He should be recovering on his own, and he does for the most part all day. He only appears to be slipping while he sleeps at night. We left a message for Dr. Miller to call us sometime tomorrow, since we'll never catch him doing rounds, to get an idea of where we are and what our expectations should be. People keep asking when he'll get to come home - no idea. We'd originally hoped for tomorrow, then Wednesday, then the weekend... We just don't have a clue at this point. He's doing awesome in all aspects except the nighttime apnea. I told him today that if he'd start breathing right and come home I'd give him a honeybun. I don't think he was buying it.
For a random Kaycie story today... two hours after I put her to bed she was still in her room jabbering about something. I went in and asked her what she was doing:
Me: What are you doing, baby?
Kaycie: Reading books.
Me: What?? (Walking to her bed)
Kaycie: Kaycie reading Green Eggs and Ham.
Sure enough. She was sitting up in the bed in the dark reading Green Eggs and Ham. Alrighty.
Saturday, January 14, 2012
What Day Is It?
I sat down at my computer last night and realized I'd started two different blog posts over the past few days but got interrupted so much I never finished either. I gave up on those and started over, although I only have a few minutes before I need to eat/rest/pump/go to the hospital/play with my toddler.
Meanwhile, we've had so many different up and downs over the past two days that I don't even know where to start. One question we've gotten a lot is about why we haven't been able to really touch Luke or interact with him. The bleed leaked into the spinal fluid surrounding his brain which caused serious sensitivity throughout his body. Not to mention that when you feel like crap you just don't want people messing with you. I can sympathize with that. The nurses said it's a lot like the preemies they get, they're just super sensitive in general. Light, noise, touch, any of it can agitate them. Being able to touch him a while yesterday afternoon was awesome, but the next visit he was very agitated and wouldn't let us touch at all. We were really discouraged last night because he wasn't tolerating anything. Today we went in and much to our surprise he was doing well enough for me to hold him. AND he took two feedings by mouth today, after having to have an NG tube put in yesterday because every time they tried to feed him he would try to stop breathing. I guess eating and breathing at the same time was too much for the little guy yesterday. Today he gobbled his food in no time.
I have no expectation for what we will find when we go back tonight. None. He may be awesome and let us hold him again, he may be upset, not breathing well, and not even let us whisper around him. Every visit is a whole different world right now. On the bright side, they took away the nasal oxygen tube. They're still having to assist him every now and then when his breathing gets shallow and he gets distressed, but he's done well without it so far today. If he can just start eating consistently and stop the shallow breathing and distress, we could bring him home middle of next week. I'm not harboring any real big hopes for that, he's got a long way to go, but anything is possible. This afternoon is the first time I've really though it might happen sooner rather than later.
Oh, and he's gained a couple of ounces. I know newborns are supposed to lose weight the first few days, but not my little guy. I call him the giant 8lb elephant in the room. His neighbor is 2lbs 3oz. The kid closest to him in size that I've seen so far is about 4lbs. Yesterday a lady was taking one home after 2 months that was less than 4lbs still. Seriously. I have a giant among tiny babies in the NICU. The nurse today said they were going to have to hunt him up some big boy diapers because he was quickly outgrowing the newborns one they had! Can't imagine they keep very many size 1's in stock!
Meanwhile, we've had so many different up and downs over the past two days that I don't even know where to start. One question we've gotten a lot is about why we haven't been able to really touch Luke or interact with him. The bleed leaked into the spinal fluid surrounding his brain which caused serious sensitivity throughout his body. Not to mention that when you feel like crap you just don't want people messing with you. I can sympathize with that. The nurses said it's a lot like the preemies they get, they're just super sensitive in general. Light, noise, touch, any of it can agitate them. Being able to touch him a while yesterday afternoon was awesome, but the next visit he was very agitated and wouldn't let us touch at all. We were really discouraged last night because he wasn't tolerating anything. Today we went in and much to our surprise he was doing well enough for me to hold him. AND he took two feedings by mouth today, after having to have an NG tube put in yesterday because every time they tried to feed him he would try to stop breathing. I guess eating and breathing at the same time was too much for the little guy yesterday. Today he gobbled his food in no time.
I have no expectation for what we will find when we go back tonight. None. He may be awesome and let us hold him again, he may be upset, not breathing well, and not even let us whisper around him. Every visit is a whole different world right now. On the bright side, they took away the nasal oxygen tube. They're still having to assist him every now and then when his breathing gets shallow and he gets distressed, but he's done well without it so far today. If he can just start eating consistently and stop the shallow breathing and distress, we could bring him home middle of next week. I'm not harboring any real big hopes for that, he's got a long way to go, but anything is possible. This afternoon is the first time I've really though it might happen sooner rather than later.
Oh, and he's gained a couple of ounces. I know newborns are supposed to lose weight the first few days, but not my little guy. I call him the giant 8lb elephant in the room. His neighbor is 2lbs 3oz. The kid closest to him in size that I've seen so far is about 4lbs. Yesterday a lady was taking one home after 2 months that was less than 4lbs still. Seriously. I have a giant among tiny babies in the NICU. The nurse today said they were going to have to hunt him up some big boy diapers because he was quickly outgrowing the newborns one they had! Can't imagine they keep very many size 1's in stock!
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