Saturday, April 30, 2011
Sunday, April 24, 2011
Flies in the vaseline, we are.
Sometimes it blows my mind...keep getting stuck here all the time.
Yes, that's right. I've gotten to the point where I need to steal Stone Temple Pilots lyrics and use them to write my crappy blog. It's not going to get better any time soon. We're going to be doing this NICU thing for a while.
The spinal stenosis surgery went well. She was clearly in pain before the surgery, and she actually cried for three days straight before she had it. This is what she was doing before: curling herself up, almost into a C.
After the surgery, she came back on vapotherm and managed to keep herself extubated. And for a while, she seemed to be doing pretty OK. Breathing a little slower, a little less labored. Keeping her oxygen levels up with just a little bit of help. Awake and pleasant.
That surgery was April 8th. And then on April 15th, she had surgery again, this time to get a g-tube. Another surgery where she was able to eek by without being intubated. It was all very encouraging.
So naturally, the doctors decided to lower her vapotherm since she was doing so well. And then as per usual, she went from doing pretty OK to pretty dismal. Back up on the vapotherm.
And then the thought was maybe that she hated the vapotherm and would do better on a low-flow nasal cannula. And that was going pretty well for 4 hours, until she had a good loud cry over a bath and then couldn't catch her breath and was turning purple. Back to the vapotherm.
The next big thing for Ainsley is a tracheostomy. A tracheostomy. So that she can be on the ventilator full-time without being intubated. A ventilator. All the time. She can come home on a ventilator if she has a trach. It sounds extreme, though, doesn't it?
This baby works like she's running a race...just to breathe. She lays in bed and forms beads of sweat on her forehead because she has to exert herself...just to breathe. She breathes fast, sometimes 120 or 130 breaths a minute, and if you don't understand what that means then you should take 2 breaths a second for as long as you can stand it and then you will realize how Ainsley feels 24 hours a day.
She is almost 17 weeks old. Or, 9 weeks adjusted. She weighs 6 pounds 4 ounces and on a good day she gains 15-20 grams. Sometimes she loses. She's on formula that is fortified to help her gain weight. She burns most of her calories by working to breathe. She needs to grow new lung tissue, which means she needs to grow, and she can't grow because she uses all of her energy to breathe.
Basically, she's getting nowhere.
.
The ventilator will do all of the work of breathing for her so that she can relax. She can grow. She can use her mouth to eat. She won't have a nasal cannula taped to her face, which means that she won't claw her own face out of frustration. She will develop. She can come home...eventually.
It's up to us. We can let her go a while and see if she improves. Maybe she'll turn around...but my gut tells me she won't. It's like this every month - good, then bad, then really bad, then better, then great, then HOLY SHIT SHE IS INTUBATED, then better, etcetera, ad nauseam.
Our consult with the surgeon will be ordered tomorrow. The same surgeon who saw her the night she was born to remove her tongue from her cleft palate, and who did her PDA Ligation, and her emergency intubation, and her g-tube surgery. He knows her history and we like him. We're going to do it. I can't sit here and let her work like this anymore.
The thing about coming home on a vent is that she is going to be in the NICU for a long time. A loooooong time. She has to weigh 12 pounds minimum, and "they are usually much bigger" when they go home on a vent. She's got to at least double her current weight before they can think about sending her home.
This exhausting routine is going to go on and on and on and I don't know how we are going to do it but we will. Because she's alive, and unfortunately we know from experience that being alive is what really matters the most. As long as she's OK, we can do anything she needs us to do.
Yes, that's right. I've gotten to the point where I need to steal Stone Temple Pilots lyrics and use them to write my crappy blog. It's not going to get better any time soon. We're going to be doing this NICU thing for a while.
The spinal stenosis surgery went well. She was clearly in pain before the surgery, and she actually cried for three days straight before she had it. This is what she was doing before: curling herself up, almost into a C.
 |
| I'm just pretending to be a croissant. |
 |
| le neurosurgery aftermath. |
 |
| What? Were you excited about my progress? Idiots. |
So naturally, the doctors decided to lower her vapotherm since she was doing so well. And then as per usual, she went from doing pretty OK to pretty dismal. Back up on the vapotherm.
And then the thought was maybe that she hated the vapotherm and would do better on a low-flow nasal cannula. And that was going pretty well for 4 hours, until she had a good loud cry over a bath and then couldn't catch her breath and was turning purple. Back to the vapotherm.
 |
| Claw my own face off? Yes. Yes I do. |
This baby works like she's running a race...just to breathe. She lays in bed and forms beads of sweat on her forehead because she has to exert herself...just to breathe. She breathes fast, sometimes 120 or 130 breaths a minute, and if you don't understand what that means then you should take 2 breaths a second for as long as you can stand it and then you will realize how Ainsley feels 24 hours a day.
She is almost 17 weeks old. Or, 9 weeks adjusted. She weighs 6 pounds 4 ounces and on a good day she gains 15-20 grams. Sometimes she loses. She's on formula that is fortified to help her gain weight. She burns most of her calories by working to breathe. She needs to grow new lung tissue, which means she needs to grow, and she can't grow because she uses all of her energy to breathe.
Basically, she's getting nowhere.
.
The ventilator will do all of the work of breathing for her so that she can relax. She can grow. She can use her mouth to eat. She won't have a nasal cannula taped to her face, which means that she won't claw her own face out of frustration. She will develop. She can come home...eventually.
 |
| I know a few people who are ready to have her home. |
Our consult with the surgeon will be ordered tomorrow. The same surgeon who saw her the night she was born to remove her tongue from her cleft palate, and who did her PDA Ligation, and her emergency intubation, and her g-tube surgery. He knows her history and we like him. We're going to do it. I can't sit here and let her work like this anymore.
The thing about coming home on a vent is that she is going to be in the NICU for a long time. A loooooong time. She has to weigh 12 pounds minimum, and "they are usually much bigger" when they go home on a vent. She's got to at least double her current weight before they can think about sending her home.
This exhausting routine is going to go on and on and on and I don't know how we are going to do it but we will. Because she's alive, and unfortunately we know from experience that being alive is what really matters the most. As long as she's OK, we can do anything she needs us to do.
 |
| Because she's the boss. |
Wednesday, April 13, 2011
Just go over there...
...and enter to win.
http://jenneppereview.blogspot.com/2011/03/i-have-seventeen-pizzas-in-my-pants.html
It's been a crazy week and I haven't had much time for Internetting. For all I know, it's turned into complete anarchy over there.
http://jenneppereview.blogspot.com/2011/03/i-have-seventeen-pizzas-in-my-pants.html
It's been a crazy week and I haven't had much time for Internetting. For all I know, it's turned into complete anarchy over there.
Wednesday, April 6, 2011
Ninety Nine
I was tempted to title this post "I've got 99 problems and a bitch ain't one." But I don't like to do my cussing in my titles because cussing is classy and should be saved for the meaningful body of the post. That, and I do most of my cussing on Facebook. And I don't sound cool like Jay-Z.
Ainsley is 99 days old today.
Or, day of life 99 as they say at the beginning of rounds. Which I miss nearly every day now that I'm back at work. But it's OK because I still have enough functional brain cells that I can manage to count to 100. After tomorrow, I'm not making any promises.
This girl can not win her way out of a paper bag. It's like one thing after another after another. She's off the vent but on vapotherm and oxygen. The newest thing is spinal stenosis. As a matter of fact, she is having surgery on Friday. On her spine.
It would be my pleasure to verbally crap all the details onto the Internet but I have no idea what the surgery entails and apparently the neurosurgeon (NEURO! SURGEON!) doesn't feel like it's all that important to call me. At all. Ever. He's probably all hey, let's just schedule it and these dumbasses will show up. (It's true, we will.) And we're all, whatever we are stoopid and easily intimidated by dokturs. (It's true, we are.)
The whole NICU song and dance is getting suuuuuuper old. I'm so exhausted that I swear to you, my hair hurts. My hair = totally hurty. I'm totally out of the loop on everything. I've had to stop getting my news from super reliable television sources (Stephen Colbert) and move toward more ridiculous radio sources (Howard Stern). I'm so fat. Seriously. I look at least 6 months pregnant. And I worked out on Monday but not since then because my body hurts and it's just so much easier being a fat lazy whore.
(I think you should know that when I'm saying whore in my mind right now, it sounds like Pauly from the Sopranos - Who-ore.)
(Why am I on a parentheses spree right now? Is it annoying? I bet it is.)
(I don't care that much Sorry.)
I did talk with the neonatologist and he thinks that this is the big issue that is causing all the little issues she's been dealing with. And apparently it can cause respiratory issues. I don't understand how and that's part of what I need to address with the NEURO! SURGEON!
Hey guess what! I have a two year old and I took her to the playground. Which pretty much proves that I'm a great mom. If that doesn't clinch it, I think the fact that I made an effort to cover her ankles with socks because she just grew out of ALL OF HER FREAKING PANTS IN ONE WEEK does clinch it. I like my toddler to be warm when I'm letting her climb up and go down the slide labeled ages 5-12.
I need to do a whole separate post to cover the cute that has developed at our house. Talking, dancing, complaining, learning. Age two is fun so far.
I can't wait to have both of my girls at home. Already a quarter of Ainsley's first year is gone. We've got catching up to do.
Ainsley is 99 days old today.
Or, day of life 99 as they say at the beginning of rounds. Which I miss nearly every day now that I'm back at work. But it's OK because I still have enough functional brain cells that I can manage to count to 100. After tomorrow, I'm not making any promises.
 |
| Has so many problems, I wouldn't be surprised if a bitch was one. |
 |
| Suspicious... "You assholes want to do surgery on WHAT?" |
 |
| Somebody fetch me Dr. Derek Shepherd! And another diaper as I am totally ripe right about now! |
(I think you should know that when I'm saying whore in my mind right now, it sounds like Pauly from the Sopranos - Who-ore.)
(Why am I on a parentheses spree right now? Is it annoying? I bet it is.)
(
I did talk with the neonatologist and he thinks that this is the big issue that is causing all the little issues she's been dealing with. And apparently it can cause respiratory issues. I don't understand how and that's part of what I need to address with the NEURO! SURGEON!
Hey guess what! I have a two year old and I took her to the playground. Which pretty much proves that I'm a great mom. If that doesn't clinch it, I think the fact that I made an effort to cover her ankles with socks because she just grew out of ALL OF HER FREAKING PANTS IN ONE WEEK does clinch it. I like my toddler to be warm when I'm letting her climb up and go down the slide labeled ages 5-12.
 |
| Nostradamus Knepper: The Flood Is Coming! Invest in socks! |
 |
| Making random conversation with this guy. She freaking loved him. |
I can't wait to have both of my girls at home. Already a quarter of Ainsley's first year is gone. We've got catching up to do.
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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