Ugh.
To make things short....
Doc wanted to run some tests to see if a respiratory infection could be a partial cause for failing on the CPAP. Coming back positive, but they don't know for what yet. The culture should come back sometime Monday. So she had to get another IV for the antibiotics. Not fun to watch.
Bronchoscope still planned for later this week. Under full anesthesia.
And 5 freaking shots today. Even more fun to watch! Joy oh joy.
Sunday, May 31, 2009
Friday, May 29, 2009
Today sucks
Reintubated. I'm pretty much devastated. She was working really hard, and the nurses were needing to physically stimulate her to get her to come out of her bradies and desats. When the neonate reintubated her, he noticed that there was a narrowing of her windpipe just below her vocal cords. Could be mucus, could be scar tissue.
Sooooooo....that means she has to go under anesthesia AGAIN so the ENT can look and see what the deal is. And if it is scar tissue, it could lead to another surgery. But we won't know much until after the bronchioscope, which will probably be some time next week. At least the ENTs that they use are some good ones, not the quacks that we used to deal with for Jameson.
And I found all this out while at my dad's retirement party. So I pretty much managed to ruin everyone else's day too. Yay me.
Sooooooo....that means she has to go under anesthesia AGAIN so the ENT can look and see what the deal is. And if it is scar tissue, it could lead to another surgery. But we won't know much until after the bronchioscope, which will probably be some time next week. At least the ENTs that they use are some good ones, not the quacks that we used to deal with for Jameson.
And I found all this out while at my dad's retirement party. So I pretty much managed to ruin everyone else's day too. Yay me.
Thursday, May 28, 2009
May 28
Geez, I feel like I'm being attacked by a vampire again. 3 more vials of blood given to my doc today. And that's after the 4 from yesterday. At least, if I'm going to be attacked like this, can someone make the vamp look like E.C? :)
Jaime is a crazy kid. As ever. Tried to help Nana with her ice cream sandwich. Too cute.
Sent my parents to the neighbor's garage sale this afternoon. $40 for a white crib. NICE! Too good to pass up, so at least Maryn has a place to sleep once we get to take her home. And yes, we checked the slats and all.
And the Princess was put on CPAP this afternoon. Around 2:15. She did pretty well with the switch. Now if she would just leave the prongs in her nose. About ever 15 minutes she manages to wiggle at least one of them out. When they were in though, her sats were still pretty good. The neonate is crossing his fingers. ME TOO!
Jaime is a crazy kid. As ever. Tried to help Nana with her ice cream sandwich. Too cute.
Sent my parents to the neighbor's garage sale this afternoon. $40 for a white crib. NICE! Too good to pass up, so at least Maryn has a place to sleep once we get to take her home. And yes, we checked the slats and all.
And the Princess was put on CPAP this afternoon. Around 2:15. She did pretty well with the switch. Now if she would just leave the prongs in her nose. About ever 15 minutes she manages to wiggle at least one of them out. When they were in though, her sats were still pretty good. The neonate is crossing his fingers. ME TOO!
Wednesday, May 27, 2009
ARGGGGGH!
Ok, so I'm trying to stay sane. But this just sucks. I've been fighting panic attacks for a few hours now, and news, although not that bad or anything, isn't helping. It feels like a cross between being terribly nervous, wound up on high levels of caffeine, eating rocks, plus being stepped on by an elephant. But not in the good way, like it was when I was young and dumb.
Found out that Maryn's caffeine level was on the low side, so no CPAP today. They bolused her and increased her daily dose in the hopes of trying it Thursday. Of course, she wasn't cooperating. She bradied at least 2 times that required bagging. Heart rate in the 60s and she wouldn't/couldn't get it back up on her own. Yeah, that doesn't help. Now tonight, come to find out that her head circumference went up a full 1/2 cm. The goal is 1 cm per WEEK. Oy. So now I'm worried that she needs to have her reservoir tapped again, and that they aren't going to notice or do it until after they try to get her on CPAP. And she WILL brady when they tap. And I don't know what nurse will have her Thursday - I know one of our favorites is definitely off. I wish I could just live at the hospital. With Jaime.
Found out that Maryn's caffeine level was on the low side, so no CPAP today. They bolused her and increased her daily dose in the hopes of trying it Thursday. Of course, she wasn't cooperating. She bradied at least 2 times that required bagging. Heart rate in the 60s and she wouldn't/couldn't get it back up on her own. Yeah, that doesn't help. Now tonight, come to find out that her head circumference went up a full 1/2 cm. The goal is 1 cm per WEEK. Oy. So now I'm worried that she needs to have her reservoir tapped again, and that they aren't going to notice or do it until after they try to get her on CPAP. And she WILL brady when they tap. And I don't know what nurse will have her Thursday - I know one of our favorites is definitely off. I wish I could just live at the hospital. With Jaime.
May 27
We have a 3 pounder! When she got weighed Monday night, she was up to 1350 grams, so 3 pounds exactly. And she actually gained one ounce last night too. Her cheeks are actually starting to get a little chub on them. Although you couldn't tell from the rest of her. Darn princess has absolutely NO butt, and her arms and legs are still the size of Barbie's. I got enough butt to share with both my kids, but NOOOOOOOOOO.
Today we may be trying CPAP again. Just waiting to hear results from her caffeine labs from yesterday before the decision is made.
Jaime is still a monkey. He'll stand and bounce on the couch, then literally launch himself face-first onto it. Then he laughs uncontrollably. It's so cute. Until he landed on me yesterday, hitting the spot where my PICC line was. Not so much fun for mommy.
Off to get ready for appointments, then scrapbooking and seeing my princess. Hey, anyone have good recommendations for good books? I'm about to finish the Twilight series and will need something to help me out of the vamp stupor.
Today we may be trying CPAP again. Just waiting to hear results from her caffeine labs from yesterday before the decision is made.
Jaime is still a monkey. He'll stand and bounce on the couch, then literally launch himself face-first onto it. Then he laughs uncontrollably. It's so cute. Until he landed on me yesterday, hitting the spot where my PICC line was. Not so much fun for mommy.
Off to get ready for appointments, then scrapbooking and seeing my princess. Hey, anyone have good recommendations for good books? I'm about to finish the Twilight series and will need something to help me out of the vamp stupor.
Friday, May 22, 2009
Yeah, yeah, yeah
Just for you Heather! :) Even though you already know most of this stuff since I talked to you yesterday!
Ok, so I know I didn't update for several days. 20 lashes with a wet noodle. I was in a bummer mood, all down and dumpy. So I didn't feel like updating. Nothing with Maryn or Jaime. Both are doing well. And I think I'm doing better.
Jaime is a monkey. Jumping on everything and everyone. Happy as a clam. He recently has discovered the joy of "stepping" to the window to check things out outside.
Maryn has officially gained one full pound since she was born. 1270 grams. 2 pounds 12 ounces. She's still vented, but they did that on purpose. Trying to give her a little bit of a break this week. If she does well over the long weekend, we may have another (and hopefully FINAL) try at CPAP as early as Tuesday.
Off the topic. At least of my kids. There is a family in the NICU that could use prayers too. I know prayers can work miracles because look what y'all have done for Maryn! Logan is just down the hall. He's the cutest, chubbiest thing. But he has some liver/intestinal issues. And his parents are 2+ hours away. They took off as much time as they could, but they had to go home. They only get to see him on Wednesdays and weekends. I can't even imagine. So if you wouldn't mind keeping him and his family in your prayers as well.
Ok, so I know I didn't update for several days. 20 lashes with a wet noodle. I was in a bummer mood, all down and dumpy. So I didn't feel like updating. Nothing with Maryn or Jaime. Both are doing well. And I think I'm doing better.
Jaime is a monkey. Jumping on everything and everyone. Happy as a clam. He recently has discovered the joy of "stepping" to the window to check things out outside.
Maryn has officially gained one full pound since she was born. 1270 grams. 2 pounds 12 ounces. She's still vented, but they did that on purpose. Trying to give her a little bit of a break this week. If she does well over the long weekend, we may have another (and hopefully FINAL) try at CPAP as early as Tuesday.
Off the topic. At least of my kids. There is a family in the NICU that could use prayers too. I know prayers can work miracles because look what y'all have done for Maryn! Logan is just down the hall. He's the cutest, chubbiest thing. But he has some liver/intestinal issues. And his parents are 2+ hours away. They took off as much time as they could, but they had to go home. They only get to see him on Wednesdays and weekends. I can't even imagine. So if you wouldn't mind keeping him and his family in your prayers as well.
Sunday, May 17, 2009
May 17
Ok. I'm tired, so I'm gonna try to make this quick and to the point.
1. a little blood in stool, or so they thought. 2 xrays showed nothing, but they are watching just to make sure. Pray for nothing.
2. still on vent. Satting pretty well with low support levels.
3. Still on diuretic, thus also still on sodium and potassium.
4. Gaining weight a little at a time. She's 2lbs 8oz right now (1150 grams). And on full bolus feeds.
5. bath time today with a princess rubber ducky. she then proceded to poop in the tub.
6. Jaime is a serious mexican jumping bean. And wanted to throw his train in church.
7. I still have a cold. Maybe brandy will clear it up.
1. a little blood in stool, or so they thought. 2 xrays showed nothing, but they are watching just to make sure. Pray for nothing.
2. still on vent. Satting pretty well with low support levels.
3. Still on diuretic, thus also still on sodium and potassium.
4. Gaining weight a little at a time. She's 2lbs 8oz right now (1150 grams). And on full bolus feeds.
5. bath time today with a princess rubber ducky. she then proceded to poop in the tub.
6. Jaime is a serious mexican jumping bean. And wanted to throw his train in church.
7. I still have a cold. Maybe brandy will clear it up.
Friday, May 15, 2009
May 15 still
Just got back from the hossy. Maryn is doing fine back on the freakin' vent. Just seeing the damn thing is starting to piss me off. Very low support - room air and 20 breaths a minutes. Low pressure settings too.
She's a little on the warm side, so they are keeping an eye on her. Oh God, please don't let my little girl come down with an infection! If that happens, will someone please just push me into the river?
Repeat brain ultrasound today came back stable, so the docs are thinking that wasn't the problem.
She was down to 2lbs 7oz last night, and she's the same now. She probably has a little more fluid to work off. And since she's on the diuretic, they are giving her sodium and potassium supplements again.
And I'm about to need a supplement of my own. Till tomorrow...
She's a little on the warm side, so they are keeping an eye on her. Oh God, please don't let my little girl come down with an infection! If that happens, will someone please just push me into the river?
Repeat brain ultrasound today came back stable, so the docs are thinking that wasn't the problem.
She was down to 2lbs 7oz last night, and she's the same now. She probably has a little more fluid to work off. And since she's on the diuretic, they are giving her sodium and potassium supplements again.
And I'm about to need a supplement of my own. Till tomorrow...
May 15
Yeah, yeah, yeah. I missed yesterday. Just shoot me now.
Maryn was put back on CPAP yesterday, as her vent settings were really low. Of course, that didn't last. Reintubated early this morning thanks to apnea and brady spells. I finally had to ask the doc if she's ever going to get off the vent. He says he's positive she will, but she may just need to be a little bigger. He is doing another brain ultrasound to see if the ventricles are bigger, which could also be interfering with the "remember to breathe" portion of her brain. I'll quiz them later today when I go in on the results.
And now I'm fighting the same freakin' cold that my dad and Jaime have. Oh joy. Like I said, just shoot me now.
Maryn was put back on CPAP yesterday, as her vent settings were really low. Of course, that didn't last. Reintubated early this morning thanks to apnea and brady spells. I finally had to ask the doc if she's ever going to get off the vent. He says he's positive she will, but she may just need to be a little bigger. He is doing another brain ultrasound to see if the ventricles are bigger, which could also be interfering with the "remember to breathe" portion of her brain. I'll quiz them later today when I go in on the results.
And now I'm fighting the same freakin' cold that my dad and Jaime have. Oh joy. Like I said, just shoot me now.
Wednesday, May 13, 2009
May 13
I need to find some creative way to title the posts. I suck.
Jaime definitely has a cold. Poor buggy! He only wants to eat yogurt-type stuff. At least it's not complete junk. If this cold lasts as long as it did with my dad, he should be feeling better by Friday. But for now, I have one serious cuddle-monster.
Maryn is doing well. She gained a bunch of weight again last night, so they are putting her back on the diuretic since a decent amount over the past few days is likely due to fluid retention. Remind me over the next several days that I just want her to stay 2lbs 5oz or more. I'm destined to freak even though I say I won't.
Brain ultrasound was stable. The ventricles are about the same size.
They weaned her vent this morning. They'll try to do a little more tomorrow morning (like 4AMish). If her blood gas after that is still good, we'll have "a serious discussion" about getting her off the vent and back on to CPAP. Hopefully for good. And yes, that was a quote from the neonate that called me this morning.
I did get to help give her a bath this afternoon. Of course, just as we were getting her wrapped in her blankie (we do swaddled bathing), she decided to poop in it. Great. She's such a stinker. Literally and figuratively. She really likes her baths, and she conks out shortly thereafter. Daddy is at the hospital now, probably holding her.
Ok, off to feed the munchin. Ta-ta.
Jaime definitely has a cold. Poor buggy! He only wants to eat yogurt-type stuff. At least it's not complete junk. If this cold lasts as long as it did with my dad, he should be feeling better by Friday. But for now, I have one serious cuddle-monster.
Maryn is doing well. She gained a bunch of weight again last night, so they are putting her back on the diuretic since a decent amount over the past few days is likely due to fluid retention. Remind me over the next several days that I just want her to stay 2lbs 5oz or more. I'm destined to freak even though I say I won't.
Brain ultrasound was stable. The ventricles are about the same size.
They weaned her vent this morning. They'll try to do a little more tomorrow morning (like 4AMish). If her blood gas after that is still good, we'll have "a serious discussion" about getting her off the vent and back on to CPAP. Hopefully for good. And yes, that was a quote from the neonate that called me this morning.
I did get to help give her a bath this afternoon. Of course, just as we were getting her wrapped in her blankie (we do swaddled bathing), she decided to poop in it. Great. She's such a stinker. Literally and figuratively. She really likes her baths, and she conks out shortly thereafter. Daddy is at the hospital now, probably holding her.
Ok, off to feed the munchin. Ta-ta.
Tuesday, May 12, 2009
May 12
Ok, priorities are shifting. I didn't do my scrapbook page today. Instead, here I am. Hopefully our social worker will think this is appropriate as well! I promise to do the page tomorrow. :)
Well, Jaime's coming down with a cold. My dad had one the past few days, and now Bug has it. Joy. Only thing we could get him to eat tonight was ice cream. At least that's not too bad considering how skinny he still is. Add tylenol to the mix, and I'm hoping he has a good night.
Maryn has had a busy day - mostly good. But lots of medical jargon to wade through.
First, they are taking her from constant feeding to bolus feeds. So she'll be getting 3 hours of food in 2 1/2. Then 1/2 hour off. Lather, rinse, repeat.
Her hematocrit number (something to do with red blood cells) were still a little low today, so she got her 2nd transfusion in 2 days. Yesterday, it was 31. Today, it was 35. So hoping the transfusion helped and tomorrow she'll be 40. Fingers crossed. But of course, then I start worrying that she'll gain too much water weight from the fluids. AAAAAAAACK!
Her blood gasses looked good, so they weaned her to a vent rate of 20. They did up the pressure support a touch, but it's still a good thing. The new neonate on our case is hoping for another try on CPAP (an improvement from venting) late this week. AKA tubes in nose instead of mouth. But her right upper lobe of her lung is looking a little congested with fluid. Something called atelectusis. Say that three times fast. But they are watching it and treating it. We'll probably have to do some diuretic stuff in the next several days, but the docs and RTs are good about making sure she's still doing well.
She did have an eye exam today too. She has what's called retinopathy of prematurity. All I know is it's something to do with blood vessels. They need to watch it, or it can get serious. But for now, her grade was better than I expected. Zone 2 and Grade 1. Yeah, she'll probably still end up with glasses, but she was already doomed to that with David and me as parents. Optho will come back in a week since she's at high risk for it getting worse. (If it did, laser surgery usually does the trick.)
She did have another brain ultrasound today, but we didn't have the results by the time I left. After holding her AGAIN for over an hour. Have I mentioned recently how freakin' adorable she is?
And if you have made it through my "short story," please go have a BIG shot of tequila for me. Extra salt.
Well, Jaime's coming down with a cold. My dad had one the past few days, and now Bug has it. Joy. Only thing we could get him to eat tonight was ice cream. At least that's not too bad considering how skinny he still is. Add tylenol to the mix, and I'm hoping he has a good night.
Maryn has had a busy day - mostly good. But lots of medical jargon to wade through.
First, they are taking her from constant feeding to bolus feeds. So she'll be getting 3 hours of food in 2 1/2. Then 1/2 hour off. Lather, rinse, repeat.
Her hematocrit number (something to do with red blood cells) were still a little low today, so she got her 2nd transfusion in 2 days. Yesterday, it was 31. Today, it was 35. So hoping the transfusion helped and tomorrow she'll be 40. Fingers crossed. But of course, then I start worrying that she'll gain too much water weight from the fluids. AAAAAAAACK!
Her blood gasses looked good, so they weaned her to a vent rate of 20. They did up the pressure support a touch, but it's still a good thing. The new neonate on our case is hoping for another try on CPAP (an improvement from venting) late this week. AKA tubes in nose instead of mouth. But her right upper lobe of her lung is looking a little congested with fluid. Something called atelectusis. Say that three times fast. But they are watching it and treating it. We'll probably have to do some diuretic stuff in the next several days, but the docs and RTs are good about making sure she's still doing well.
She did have an eye exam today too. She has what's called retinopathy of prematurity. All I know is it's something to do with blood vessels. They need to watch it, or it can get serious. But for now, her grade was better than I expected. Zone 2 and Grade 1. Yeah, she'll probably still end up with glasses, but she was already doomed to that with David and me as parents. Optho will come back in a week since she's at high risk for it getting worse. (If it did, laser surgery usually does the trick.)
She did have another brain ultrasound today, but we didn't have the results by the time I left. After holding her AGAIN for over an hour. Have I mentioned recently how freakin' adorable she is?
And if you have made it through my "short story," please go have a BIG shot of tequila for me. Extra salt.
Monday, May 11, 2009
May 11
Maryn did well today. She's up to 2lbs 5oz. Roughly 14 1/2 inches long. They didn't weigh her yet tonight, but still. She did need a little blood earlier today, as her hematocrit numbers were on the low side, but she's a trooper. I can tell that she HATES having that IV in her hand.
On a brighter note, we did get to hold her again today. Yup, that's right. I said WE. David went up to the hospital after we ran some errands to my work and held her for about 45 minutes. It was his turn, and I'm trying to be fair about it. I was taking the late shift today. But once I got there, Maryn's nurse JoAnn asked if I wanted to hold her too. DUH!!! She said she had been doing so well that we both could take a turn today. Over 90 minutes later, my Princess went back to sleep quickly in her bed. All snuggled up in her little outfit from our friends Amber, Jake and baby Marley.
On a brighter note, we did get to hold her again today. Yup, that's right. I said WE. David went up to the hospital after we ran some errands to my work and held her for about 45 minutes. It was his turn, and I'm trying to be fair about it. I was taking the late shift today. But once I got there, Maryn's nurse JoAnn asked if I wanted to hold her too. DUH!!! She said she had been doing so well that we both could take a turn today. Over 90 minutes later, my Princess went back to sleep quickly in her bed. All snuggled up in her little outfit from our friends Amber, Jake and baby Marley.
Intro
Ok, so I know lots of people have been wanting updates on the kids. So instead of creating a CarePage, which might end once Maryn comes home, I figured just go this route. It will take me a while to get the whole story down, as I'm still trying to come to terms with the situation, but I will.
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