Charlotte Amalie will be soaking up some rays this Monday. Laser rays, that is.
Her ROP has progressed to the point where she definitely needs the surgery in her right eye (Stage 2+) and she might need the surgery in her left eye (Stage 2).
They'll check her left eye on Monday and make the decision whether or not to do the surgery or wait on that eye, but the right eye is definitely getting zapped.
She'll be intubated, paralyzed, and sedated.
I think she's doing it for the drugs. And because she doesn't like this whole "breathing on her own" thing.
Kids these days. I'll tell 'ya.
Saturday, June 19, 2010
Friday, June 18, 2010
D Day
Charlotte Amalie-
Today, little girl, is your due date. One hundred and eleven days ago, you surprised us all with your grand entrance. But today, today my little one, was to be the anticipated day.
In reality, I no longer have any attachment to this day. It doesn't really mean anything, other than it comes after June 17th and before June 19th.
It marks what could have been. And you'll soon learn, that your mother loves to think on "what could have been."
I think about how my parents would have driven here to wait for your arrival. They would be sitting in the waiting room, talking on the phone to every family member, giving updates and keeping people informed. They would not have noticed the family sitting in the corner, waiting to go back, one by one with the baby's father, to see their grandchild in the NICU. They would not have noticed the mother missing, somewhere waiting in recovery. They would not have noticed that the family coveted my parent's joy, my parent's surety, in this moment.
How could they notice? We do not notice what we do not know.
I think about how we would have left the hospital. Never, ever thinking about the babies who are not going home with their parents. Never thinking that we were doing something special. We would have taken pictures of you in the car, we would have hugged our nurse goodbye and we would have driven off-- never noticing the mother or father walking by with tears in their eyes. Never noticing their empty arms, or their hurried pace on the familiar way to the NICU.
How could we have noticed? We do not notice what we do not know.
I think about giving you your first bath, and how I would have taken a million pictures of you with washcloths censoring your body. Your father would be telling me to stop blinding you with the flash. We'd pull fuzz balls from between your toes, and we'd gently caress your smooth belly. Never noticing how much your toes have grown, how strong your skin feels, how healing it can be to take care of your own baby.
I would be making charts of how often I changed your diapers and on which side you last ate. I would not have noticed what a miracle it was for you to eat on your own. For you to be able to eat the way nature intended.
I do not notice the things I do not know.
(I would give up on said charts in about 16 hours.)
People would greet us with, "Oh how sweet! Does she sleep well for you?" We'd answer yes or no, but we'd answer, never noticing that some parents sleep right through the night. We'd never realize that to be sleep deprived is something one would do anything for.
How could we? We do not notice the things we do not know.
How could anyone?
And so today, little girl, instead of celebrating your arrival, we celebrate your lessons.
We celebrate the way you've taught us to think outside the box, if only for a moment. We celebrate not taking things for granted. We celebrate miracles on all scales. We celebrate babies and families-- no matter how early they arrive, no matter how soon they leave us.
We celebrate the norm, we celebrate our desire to someday live within it. We celebrate our ability to live without it.
We celebrate the world you've exposed us to; the lives you've touched. We celebrate the people we've come to love, the people we know only because they have been forced to "notice" as well.
We celebrate you. We celebrate one hundred and eleven days of you. One hundred and eleven days too early.
One hundred and eleven days of lessons.
One hundred and eleven days of noticing the unnoticed.
Happy Due Date little girl.
Today, little girl, is your due date. One hundred and eleven days ago, you surprised us all with your grand entrance. But today, today my little one, was to be the anticipated day.
In reality, I no longer have any attachment to this day. It doesn't really mean anything, other than it comes after June 17th and before June 19th.
It marks what could have been. And you'll soon learn, that your mother loves to think on "what could have been."
I think about how my parents would have driven here to wait for your arrival. They would be sitting in the waiting room, talking on the phone to every family member, giving updates and keeping people informed. They would not have noticed the family sitting in the corner, waiting to go back, one by one with the baby's father, to see their grandchild in the NICU. They would not have noticed the mother missing, somewhere waiting in recovery. They would not have noticed that the family coveted my parent's joy, my parent's surety, in this moment.
How could they notice? We do not notice what we do not know.
I think about how we would have left the hospital. Never, ever thinking about the babies who are not going home with their parents. Never thinking that we were doing something special. We would have taken pictures of you in the car, we would have hugged our nurse goodbye and we would have driven off-- never noticing the mother or father walking by with tears in their eyes. Never noticing their empty arms, or their hurried pace on the familiar way to the NICU.
How could we have noticed? We do not notice what we do not know.
I think about giving you your first bath, and how I would have taken a million pictures of you with washcloths censoring your body. Your father would be telling me to stop blinding you with the flash. We'd pull fuzz balls from between your toes, and we'd gently caress your smooth belly. Never noticing how much your toes have grown, how strong your skin feels, how healing it can be to take care of your own baby.
I would be making charts of how often I changed your diapers and on which side you last ate. I would not have noticed what a miracle it was for you to eat on your own. For you to be able to eat the way nature intended.
I do not notice the things I do not know.
(I would give up on said charts in about 16 hours.)
People would greet us with, "Oh how sweet! Does she sleep well for you?" We'd answer yes or no, but we'd answer, never noticing that some parents sleep right through the night. We'd never realize that to be sleep deprived is something one would do anything for.
How could we? We do not notice the things we do not know.
How could anyone?
And so today, little girl, instead of celebrating your arrival, we celebrate your lessons.
We celebrate the way you've taught us to think outside the box, if only for a moment. We celebrate not taking things for granted. We celebrate miracles on all scales. We celebrate babies and families-- no matter how early they arrive, no matter how soon they leave us.
We celebrate the norm, we celebrate our desire to someday live within it. We celebrate our ability to live without it.
We celebrate the world you've exposed us to; the lives you've touched. We celebrate the people we've come to love, the people we know only because they have been forced to "notice" as well.
We celebrate you. We celebrate one hundred and eleven days of you. One hundred and eleven days too early.
One hundred and eleven days of lessons.
One hundred and eleven days of noticing the unnoticed.
Happy Due Date little girl.
Thursday, June 17, 2010
Weigh In
Not much has changed, but Charlotte is doing much better on her weight gain than she had been over the last week or two. Since putting in the ND tube, Charlotte has gained nearly 4 ounces (she had been stuck at around 5 pounds for a little over a week).
She's currently weighing in at 2440 grams or 5 pounds 6 ounces.
She's getting chunky!
She's currently weighing in at 2440 grams or 5 pounds 6 ounces.
She's getting chunky!
Wednesday, June 16, 2010
Now That's the Stuff
Charlotte is already looking dramatically better since having the ND tube placed. She is down nearly 10% on her oxygen requirements and according to her nurse this morning, has not been having as many desat's.
We weren't expecting to see such a quick turn around, so we're very excited (and a little skeptical-- way to permanently ruin our excitement, NICU Rollercoaster). They'll do another X-Ray in a few days to see how her lungs are looking and hopefully the damage done by aspiration will have healed.
We weren't expecting to see such a quick turn around, so we're very excited (and a little skeptical-- way to permanently ruin our excitement, NICU Rollercoaster). They'll do another X-Ray in a few days to see how her lungs are looking and hopefully the damage done by aspiration will have healed.
Tuesday, June 15, 2010
Updates Galore
6/14/10She might look like a Knickerbocker, but she sleeps like a Farr
I feel like for the past few weeks we've done nothing but watch Charlotte Amalie get bigger. And suddenly, this week, BAM-- a million things to check and work out before she can get ready to get ready to come home (there's a lot of preparation involved here:))
Eyes: Charlotte had her eye exam today and the verdict is: wait and see. Her eyes are "stable" meaning, there has not been any significant progression or regression of the ROP from last week. We'll wait another week and see what her eyes look like then.
Lungs: Charlotte's been pretty constant on her oxygen demand, but after some days of heavy spitting, she went up a few notches on her O's. The doctor following her this week was concerned that she might be aspirating some of the spit-up and ran an X-Ray today. Sure enough, the right lung looked gunky (that's a medical term, for sure). They are changing the way she is getting fed, and hoping that with this change in feeding style, her lungs will heal more rapidly and she'll be able to move to high-flow nasal cannula. It's a gradual healing, of course, so her doctor is hoping that sometime next week they'll do another X-Ray and it will look better. And a week after that, they'll hopefully be able to move to nasal cannula.
6/14/10Slow and steady wins the race, right?
Feedings: Charlotte is having an ND tube (nasoduodenal) placed today. An ND goes in through her mouth (or nose), down the esophagus, past her stomach, and past the first bend in the intestines. This removes all chances of her regurgitating her feeds and lowering her chance of aspiration. This is also going to make it more interesting to get her ready to come home, seeing as she has to be orally fed to come home, and oral feeding risks aspiration, but we'll cross that bridge when we get to it. ND feedings are done continuously, so she'll be getting 14.5 mL/hour and the doctor is hoping that by bypassing the stomach, she'll eventually be able to take in more volume. They'll also be checking the pH of her stomach content daily to see how much acid she is producing. If it is *really* acidic, they'll start her on Prilosec or something to that effect.
Vocal Chords: You might remember that when Charlotte Amalie had her PDA Ligation, one of the risks was damaging the recurrent laryngeal nerve (EDIT: previously posted as phrenic nerve-- Apparently I need a few more courses in A&P). Since she couldn't make noise at that point regardless, we weren't watching for anything. But she still hasn't developed a "voice", more of a raspy whisper. There are many reasons for this, not the least of which is the fact that for 15 weeks she's had a tube down her throat of one kind or another. Regardless, they will be checking her vocal chords in the next few weeks to rule out other possibilities, such as the phrentic nerve or acid reflux. She'll be evaluated by a speech therapist while eating so they can determine what damage has been done and how much is reversible. Might be a lot, might be nothing.
6/10/10Can you tell how much I love this state of limbo? :)
Heart: Probably due to the aspiration of spit-up, Charlotte's resting heart rate has been higher again (around 180's-190's). A routine Echo was done yesterday to check for stiffening of the right side of the heart muscle. Sometimes, because of long-term oxygen needs, the heart muscle stiffens and it can cause pulmonary hypertension. This echo was totally routine, not because they were worried about anything, and we should get the results back in a few days.
Misc: Since Charlotte is still on the CPAP, her belly becomes full of air pretty frequently. She can't burp yet, so usually her stomach is "vented" after a feeding by attaching an open tube to her NG tube and allowing air from her stomach to exit through the tube. Since her ND tube (through which she will be getting continuous feedings) does not vent the stomach, Charlotte will have one ND tube (for food, goes past the stomach into the intestines) and one NG tube (for venting, goes into the stomach). This situation will hopefully be resolved once she goes on high-flow nasal cannula.
If you made it this far, congrats. You win :)
Monday, June 14, 2010
Eye, Eye, Eye
Last week we got the news that Charlotte's ROP has progressed to a point where it *looks* like she will need surgery for it.
She'll be examined this week again to make sure, but the progress from two weeks ago to last week was pretty significant. For those of you who are familiar with ROP, she went from Stage 1 Zone 2 two weeks ago to Stage 2 Zone 3 with 12 clock hours (R) and 10 clock hours (L) .
The team is split on whether or not she'll need the surgery. Some say it might regress, and others believe that if the ROP was going to regress, she would have done it last week. The surgery is simple-- just a laser that zaps (do lasers do anything other than zap?) the crazy blood vessels and stops them from growing. She'll go back on the ventilator, but it will be a quick on-and-off ventilator situation. Good news is, baby glasses are not nearly as ugly as they used to be. :)
Either way, surgery or not, we could use your prayers, support, and encouragement this week. This whole driving to the NICU is really getting old and both Peter and I are wearing out. He's tired of her being there, and I'm struggling with this week being her original due date.
We know that it's just a slight bump on the road, but we're tired from this journey and we'd like to stop traveling. Since that's not an option, we might need a listening ear or a comfortable shoulder for a moment or two this week.
Thank you so much for all you have done already. We sincerely appreciate your love and support.
She'll be examined this week again to make sure, but the progress from two weeks ago to last week was pretty significant. For those of you who are familiar with ROP, she went from Stage 1 Zone 2 two weeks ago to Stage 2 Zone 3 with 12 clock hours (R) and 10 clock hours (L) .
The team is split on whether or not she'll need the surgery. Some say it might regress, and others believe that if the ROP was going to regress, she would have done it last week. The surgery is simple-- just a laser that zaps (do lasers do anything other than zap?) the crazy blood vessels and stops them from growing. She'll go back on the ventilator, but it will be a quick on-and-off ventilator situation. Good news is, baby glasses are not nearly as ugly as they used to be. :)
Either way, surgery or not, we could use your prayers, support, and encouragement this week. This whole driving to the NICU is really getting old and both Peter and I are wearing out. He's tired of her being there, and I'm struggling with this week being her original due date.
We know that it's just a slight bump on the road, but we're tired from this journey and we'd like to stop traveling. Since that's not an option, we might need a listening ear or a comfortable shoulder for a moment or two this week.
Thank you so much for all you have done already. We sincerely appreciate your love and support.
Sunday, June 13, 2010
15 Weeks Actual
Charlotte is 15 weeks old today. Yay! for obscure and random milestones.
Weight: 2302 grams (5 pounds, 1.2 ounces)
Lungs: She's still on a CPAP pressure of 7, but she's pretty happy there. They'll keep her at 7 for about a week (unless she wakes up one morning OBVIOUSLY ready to be weaned) and then they'll try for 6. This slow wean off of CPAP makes us assume it's going to be middle of July before she comes home. But who knows. She could be a superstar and do everything really quickly. Haha. That was funny just writing it.
Heart: Lookin' good. She still hits over 200 (last night I saw her at 213) but she's resting more in the 170's and even the 160's at times.
Feedings: Charlotte is still at 42 mL and back to taking it over an hour. She had been moved to 44mL over 40 minutes, but she had a day and a half of some impressive spitting (projectile, stinky, baby spit--nasty stuff) so they backed her down. They are going to wait to see how she is doing later this week, and depending on what the prognosis is with the CPAP, they may begin oral feeds. This would be a bottle nipple filled with milk and then given to her-- not a full bottle-- we're still miles away from that. Baby steps.
Millions and millions of baby steps.
Weight: 2302 grams (5 pounds, 1.2 ounces)
Lungs: She's still on a CPAP pressure of 7, but she's pretty happy there. They'll keep her at 7 for about a week (unless she wakes up one morning OBVIOUSLY ready to be weaned) and then they'll try for 6. This slow wean off of CPAP makes us assume it's going to be middle of July before she comes home. But who knows. She could be a superstar and do everything really quickly. Haha. That was funny just writing it.
Heart: Lookin' good. She still hits over 200 (last night I saw her at 213) but she's resting more in the 170's and even the 160's at times.
Feedings: Charlotte is still at 42 mL and back to taking it over an hour. She had been moved to 44mL over 40 minutes, but she had a day and a half of some impressive spitting (projectile, stinky, baby spit--nasty stuff) so they backed her down. They are going to wait to see how she is doing later this week, and depending on what the prognosis is with the CPAP, they may begin oral feeds. This would be a bottle nipple filled with milk and then given to her-- not a full bottle-- we're still miles away from that. Baby steps.
Millions and millions of baby steps.
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