Monday, March 28, 2011
April? Maybe?
It's been an eventful weekend and so I'll give you a quickie update.
Ainsley went back on Oxygen on the 21st, Vapotherm on the 23rd, and the ventilator on Thursday night, the 24th.
It was a constant struggle to breathe for her, and she wasn't even breathing properly on the vent. SO...she went to surgery on Friday, the 25th, to be intubated with a larger tube. It seems to have helped. That, and they found some nasty infection in her lungs that is now being treated.
The cultures are still growing, but we think she is aspirating her reflux. Which isn't really all that shocking and while a lung infection is a really big fucking deal for a preemie, at least we know now why her lungs are getting so much worse instead of so much better.
Today she has a GI consult. They are going to try to decide for sure if she is aspirating reflux, and if she is she will have ANOTHER surgical procedure called a nissen to help prevent reflux altogether and at that time she will have a g-tube placed.
They have her sedated, because she's an Old Hag in NICU terms and knows that the vent shouldn't be there and it stresses her out. Sometimes? She starts gagging on the tube then refuses to breathe and turns blue.
This kid cannot catch a break!
Ainsley went back on Oxygen on the 21st, Vapotherm on the 23rd, and the ventilator on Thursday night, the 24th.
It was a constant struggle to breathe for her, and she wasn't even breathing properly on the vent. SO...she went to surgery on Friday, the 25th, to be intubated with a larger tube. It seems to have helped. That, and they found some nasty infection in her lungs that is now being treated.
The cultures are still growing, but we think she is aspirating her reflux. Which isn't really all that shocking and while a lung infection is a really big fucking deal for a preemie, at least we know now why her lungs are getting so much worse instead of so much better.
Today she has a GI consult. They are going to try to decide for sure if she is aspirating reflux, and if she is she will have ANOTHER surgical procedure called a nissen to help prevent reflux altogether and at that time she will have a g-tube placed.
They have her sedated, because she's an Old Hag in NICU terms and knows that the vent shouldn't be there and it stresses her out. Sometimes? She starts gagging on the tube then refuses to breathe and turns blue.
This kid cannot catch a break!
 |
| What? Anna Wintour swears that blue is "in" for spring. You people have no fashion sense. |
Saturday, March 19, 2011
In which I try to use you for your smarts.
Yesterday? We got our first whiff of homespeak. Ainsley is off of vapotherm. See?
So here is where she is at with the whole going home checklist:
1. Off Vapotherm/Normal Breathing : Donesky-ish!
2. Maintain Temperature in Open Air Crib : Donesky!
3. Eat From Bottle : Shitsky!
Eating is intimidating to me for several reasons, the biggest of them being her cleft palate. She has a cleft soft palate, so there is essentially nothing between her mouth and her nasal cavity. Add to that the whole Preemie Never Had A Bottle Yet thing just sounds like disaster to me.
And apparently, it sounds like a disaster to the doctor, too. Because they were throwing out the idea of a g-tube. Not yet, mind you. It was more of a Just The Tip, Just To See What It Feels Like conversation. Except, about a g-tube and not about penises and sex in case you weren't clear on that. But, ya know...
Doctor: She can go home with an ng tube, but the g tube might be better, and she's an old lady now and we need to start thinking of ways to get her home.
Jennepper: ** shits pants yet tries to act cool** Right...right...uh huh...right
So here's what I need (because I'm needy): I need to hear about your experiences with teaching an old hag NICU baby - she's been here 11.5 weeks - to eat from a bottle. Bonus if your baby had a cleft palate...because you have to take a win where you can get one, right? (Charlie Sheen?) Or, even if it wasn't in the NICU, tell me about your experience with a cleft.
Don't blow smoke up my ass here. I need to have a realistic idea of what we are in for. I want tips and tricks and whatever. I'm not against a g-tube, but I want to make sure that we are giving her a fair shot at bottle feeds before we get there.
Here's a picture of Olivia, who is a giant huge monstrous toddler who now says YOGURT instead of YOGIE and who will be attending Harvard in the fall to pursue her studies in everything Disney, with a minor in Tantrum Throwing.
--
One Year Ago: Help Me Settle A Dispute
Two Years Ago: I Think Someone Stole My Baby!
Three Years Ago: Dear Tylenol
 |
| HAI! I'm learning to breathe and eat, and I'm wide awake at 6 a.m. Shouldn't you be doing something more productive than reading blogs? Lazy whores. All of you. |
3. Eat From Bottle : Shitsky!
Eating is intimidating to me for several reasons, the biggest of them being her cleft palate. She has a cleft soft palate, so there is essentially nothing between her mouth and her nasal cavity. Add to that the whole Preemie Never Had A Bottle Yet thing just sounds like disaster to me.
And apparently, it sounds like a disaster to the doctor, too. Because they were throwing out the idea of a g-tube. Not yet, mind you. It was more of a Just The Tip, Just To See What It Feels Like conversation. Except, about a g-tube and not about penises and sex in case you weren't clear on that. But, ya know...
Doctor: She can go home with an ng tube, but the g tube might be better, and she's an old lady now and we need to start thinking of ways to get her home.
Jennepper: ** shits pants yet tries to act cool** Right...right...uh huh...right
So here's what I need (because I'm needy): I need to hear about your experiences with teaching an old hag NICU baby - she's been here 11.5 weeks - to eat from a bottle. Bonus if your baby had a cleft palate...because you have to take a win where you can get one, right? (Charlie Sheen?) Or, even if it wasn't in the NICU, tell me about your experience with a cleft.
Don't blow smoke up my ass here. I need to have a realistic idea of what we are in for. I want tips and tricks and whatever. I'm not against a g-tube, but I want to make sure that we are giving her a fair shot at bottle feeds before we get there.
Here's a picture of Olivia, who is a giant huge monstrous toddler who now says YOGURT instead of YOGIE and who will be attending Harvard in the fall to pursue her studies in everything Disney, with a minor in Tantrum Throwing.
 |
| BYE BYES! BYE BYES! BYE BYES GODDAMNITNOW! |
--
One Year Ago: Help Me Settle A Dispute
Two Years Ago: I Think Someone Stole My Baby!
Three Years Ago: Dear Tylenol
Thursday, March 10, 2011
What's Ainsley doing? Winning! Duh!
 |
| Little girl in a big crib. Like fat guy in a little coat, only smaller and less funny. |
Wednesday, March 9, 2011
Day of Life: 71
My first full week of work went by in a total blur. And the only thing that I know for sure is that I'm doing a million things right but I'm not doing any of them well. Work...mom...wife...citizen...life in general...suck at them all.
(Unless you have anything to do with my employment status or the amount of my paycheck, in which case I am, in fact, doing a million things and I am totally rocking all of them.)
You know how sometimes? There's a bunch of shit going on? And you're all, fine. I can handle this, but this is all. I can't handle one more thing. If one more thing happens? I'm going to jump out the window/poke out my eye/pull out my hair/drink ten kegs of Christmas Ale.
It seems that I have added that One More Thing by going back to work and now I pretty much feel like I'm in a tailspin. Get up, get ready, get Olivia ready, get to work, go to the hospital, go back to work, go home, go back to the hospital, go to bed. It's been a week and I'm staring down the tunnel at next week and wondering where is the light? Ya know?
--
I had been trying to get up the nerve to talk to the charge nurse in the NICU about getting a primary nurse for Ainsley. It's getting a bit old to hear, over and over, "well, she's doing * this * but I don't know her so I'm not sure if that's typical." Which...OK. I'm sure it's in the novel of notes in the computer but damn if it wouldn't be nice to have someone with her consistently who would just know. Because I'm at work, being all worky (and kicking ass at everything in life, in general) and I'm not here.
And nobody is here with her all the time who knows her. Which is annoying but not really anyone's fault, either. She's pretty much another baby in another isolette that needs fed and changed and can't really breathe. Blah blah blah she's just little and needs to grow and basically we really just need to wait and see.
So I finally asked to talk to the charge nurse and apparently it's voluntary. Being a primary, I mean. The nurse has to want to do it, which makes sense. And guess what else? You need to ask. I need to ask someone, "hey, wanna take care of my baby? Since, you know, I can't and everything."
Here's what I'm getting at: I'm afraid of rejection. Because if I ask someone to care for Ainsley, maybe a bit beyond the requirement of Don't Let Her Die, and they say no? I don't know if my delicate psyche can take it. I'm like one comment about my ass being fat away from confining myself to the house surrounded by Twix Bars and beer. Lots of beer.
--
When they do rounds, they start off by saying the baby's day of life. Today is Ainsley's 71st day of life.
Ainsley...is a bit of a grouch. We've been trying to bring up Olivia's intolerance to milk and soy protein to the nurses, because Ainsley has had the same irritability and terrible diaper rash that plagued Olivia's first few months.
(Oh, yes, and reflux. Of course reflux.)
And everyone is all YAY FOR BREASTMILK! But I think the breastmilk is making her ill because it is my frozen milk and I ate dairy. So I'm all YAY FOR NEOCATE! And finally finally! We got someone to listen to us, and she will be on Neocate after my milk runs out in a few days.
Don't get me wrong: the cute greatly outweighs the grouchy. I'm always shocked at how fast 4 or 5 hours can pass. Time flies when you're holding an adorable baybee.
(Unless you have anything to do with my employment status or the amount of my paycheck, in which case I am, in fact, doing a million things and I am totally rocking all of them.)
You know how sometimes? There's a bunch of shit going on? And you're all, fine. I can handle this, but this is all. I can't handle one more thing. If one more thing happens? I'm going to jump out the window/poke out my eye/pull out my hair/drink ten kegs of Christmas Ale.
It seems that I have added that One More Thing by going back to work and now I pretty much feel like I'm in a tailspin. Get up, get ready, get Olivia ready, get to work, go to the hospital, go back to work, go home, go back to the hospital, go to bed. It's been a week and I'm staring down the tunnel at next week and wondering where is the light? Ya know?
--
I had been trying to get up the nerve to talk to the charge nurse in the NICU about getting a primary nurse for Ainsley. It's getting a bit old to hear, over and over, "well, she's doing * this * but I don't know her so I'm not sure if that's typical." Which...OK. I'm sure it's in the novel of notes in the computer but damn if it wouldn't be nice to have someone with her consistently who would just know. Because I'm at work, being all worky (and kicking ass at everything in life, in general) and I'm not here.
And nobody is here with her all the time who knows her. Which is annoying but not really anyone's fault, either. She's pretty much another baby in another isolette that needs fed and changed and can't really breathe. Blah blah blah she's just little and needs to grow and basically we really just need to wait and see.
So I finally asked to talk to the charge nurse and apparently it's voluntary. Being a primary, I mean. The nurse has to want to do it, which makes sense. And guess what else? You need to ask. I need to ask someone, "hey, wanna take care of my baby? Since, you know, I can't and everything."
Here's what I'm getting at: I'm afraid of rejection. Because if I ask someone to care for Ainsley, maybe a bit beyond the requirement of Don't Let Her Die, and they say no? I don't know if my delicate psyche can take it. I'm like one comment about my ass being fat away from confining myself to the house surrounded by Twix Bars and beer. Lots of beer.
--
When they do rounds, they start off by saying the baby's day of life. Today is Ainsley's 71st day of life.
Ainsley...is a bit of a grouch. We've been trying to bring up Olivia's intolerance to milk and soy protein to the nurses, because Ainsley has had the same irritability and terrible diaper rash that plagued Olivia's first few months.
(Oh, yes, and reflux. Of course reflux.)
And everyone is all YAY FOR BREASTMILK! But I think the breastmilk is making her ill because it is my frozen milk and I ate dairy. So I'm all YAY FOR NEOCATE! And finally finally! We got someone to listen to us, and she will be on Neocate after my milk runs out in a few days.
 |
| 4 pounds, 10 ounces: I'm little and wee! My lungs are for crying, not breathing. Get over it. |
Don't get me wrong: the cute greatly outweighs the grouchy. I'm always shocked at how fast 4 or 5 hours can pass. Time flies when you're holding an adorable baybee.
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