Happy 4th

Happy 4 month birthday little one.

Currently you are:

* Getting better at having regular wake/sleep cycles
* Very, very chunky
* Being weaned off of CPAP
* Loving your chupi
* Wrapping Daddy around your little finger
* Tracking things with your eyes
* Tolerating noise
* Rocking your daily Physical Therapy
(which includes range of motion exercises and stretching routines)
* A champ at paci dips
* Successful with 1 hour/day on nasal cannula

But most importantly,
you're our little girl.

Our little fighter.

You Know Us, Always With the Favors

The NICU brings so many bittersweet relationships. Love the nurses for taking care of our child, hate that they are the ones putting your angel to bed at night. Love the machines for keeping your child alive, hate that your child needs them.

Love the people you meet in the NICU, hate that you had to meet in such a nasty, ugly way.

Tonight, we need some prayers for a family-- a wonderful, beautiful, new family. Their son, Bobby, is a little over 1 month old. He was born at 26 weeks, and weighed just a little bit more than Charlotte at birth. He's been a real fighter-- but this weekend, he's facing one of those infamous "NICU Roller Coaster Set Backs."

Bobby's mom celebrated her birthday yesterday as her son went back on the ventilator. Charlotte did that to me on Mother's Day, and let me tell you, there's no other way to put it, it just sucks. Plain, ol', sucks.

So tonight, tomorrow, the day after, and all the days after that, say a prayer, think a positive thought, whisper their name to the universe. Mom, Dad, and Bobby can all use a bit of a lift this week.

Thank you so much for being the angels that lift us all.

6'ers

Charlotte is currently:

*6 pounds .75 ounces (2743 grams). That's 4.89 times larger than she was at birth.

*On a CPAP peep of 6

*Still on the ND tube, but getting 16 mL/hr every hour. (I think I need an ND tube of chocolate.)

*Nasal Cannuling (made that word up) everyday for 30-60 minutes, as tolerated. Last night she did a full 60 minutes AND she didn't desat once AND she went to breast (still non-nutritive suck).

There's still a lot to do to get ready to come home, but this past week has at least felt like we're again moving in that direction. July 28th will be 150 days in the NICU, a milestone we'd really rather not reach, but one that we're probably going to see. Despite her long stay, we know she's getting stronger and stronger and she is fighting hard to make her way home. The next big thing will probably be a move to high-flow nasal cannula, and from there, we're hoping her lungs will be strong enough so she won't aspirate any feeds. When her lungs look strong enough, they'll move the ND tube to an NG tube (just goes straight into her belly) and see how she does for a bit. Once she proves she can handle food in her belly, then they'll start with oral feeds.

Phew. Lots to do. Plenty of time to do it.

Thanks for checkin in!

Nasal What?

Nasal Cannula. Charlotte Amalie gets to spend 30 minutes a day on nasal cannula while we are holding her. Her oxygen requirements cannot increase more than 10% while we're holding her before she has to go back on CPAP.

Last night was the first trial run of this. Peter was able to hold her, since I have the lovely fortune of having a cold.

In June.

Seriously.

The gods are laughing at me.





I never thought a baby on oxygen would look so good.

Pre-Op

The night before Charlotte's eye surgery we were able to go in and give her a bath before holding her. I know, I know, five months from now, I'll be willing to let anyone, ANYONE, give her a bath, but for right now, it's really exciting to "do" something. We were able to get some pictures after the bath, before they had re-assembled the CPAP mask and such. Check out her fuzzy hair.

6/20/10
Charlotte's chupi is about as big as she is.

6/20/10
Look, Mom, no mask!

On a random note, Charlotte sneezes like crazy when you take the CPAP off. It must feel so good to be able to sneeze and not have it blown right back in your face. Ahhh, the simple things in life.

6/20/10
Do.You.See.Those.Legs?!?!

6/20/10
Naked baby shots= totally inappropriate,
but the only way to show you her chunkiness

6/17/10
Caleb picked out this outfit in the store.
"Aww, mommy, for baby Charlotte. She look so cute! She so tiny!"
You think he hears that a lot?

Sadly, her pink nightgown bit the dust the next morning. It had to be cut off of her before surgery, since it couldn't fit around the IV in her arm. Oh well, not a huge deal because, believe it or not, she's getting too big for some preemie clothes! Carters preemies are getting a tad small on her. Most other brands still fit, but Carters is on its way out.

Yay for getting to be a big girl!

PS--

The blanket on her bed was made for her by Aunt Amanda.

All Better

Charlotte's surgery went well yesterday. They only had to laser her right eye, as her left eye is showing signs of regression on its own.

The eye doctor will continue to f0llow her, to make sure the ROP is regressing properly in both eyes, and we're hoping that she won't need a follow up surgery.

Her next eye exam is scheduled for Friday.

In other news, Charlotte is weighing in at 2609 grams, or 5 pounds, 12 ounces. She's almost 17 inches long now, and is taking in 12 ounces a day of breastmilk + fortifier.

She is still on CPAP. Her settings had to be increased after the surgery, so we're hoping that she will be back on a pressure of 7 today, but we know, yadda yadda yadda, "it's all up to her."

Currently, she's on track to be home in the next 5-7 weeks (end of July, early August).

At this point, as long as she's home by Halloween, we'll be happy :)

Doing it for the Drugs

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.

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.

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!

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.

Updates Galore

6/14/10
She 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.

6/14/10

Slow 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.

6/10/10

Can 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 :)

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.

Image via Wikipedia

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.

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.

39 Weeks

Today I should be calling my mother, complaining that I'm not any more dilated than I was last week.

I should be gasping for air as my baby takes up the space my lungs used to inhabit. I should be in pain because this.baby.is.just.too.big.

I should be begging to go into labor, trying to stay indoors or hide out at the mall just to keep cool in this weather. I should be crying because even maternity clothes don't fit. I should be anxiously timing every.single.{false}.contraction.

I should be filling the internet with personal details about how I cannot urinate and what's happening with my cervix.

I should. I should. I should.

But I'm not.

If the NICU teaches anything, it teaches "I should" doesn't exist.

Instead, the wise NICU encourages me to let go. To let go of expectations. To allow time to be time and events to be events, without there being a clear relationship between the two. I've learned that there's so much more to learn.

I should be pregnant right now.

But there are women who should be mothers, and there are babies who should be alive and there are problems that should have plagued our NICU stay. "Should" doesn't mean much.

And if I am to accept our blessings, I have to accept our challenges. If I am to praise Charlotte's progress then I have to deal with her unexpected presence.

I cannot ask to be carried, and then complain about the route we've taken.

I shouldn't complain. But sometimes, I do.

5'ers

5

Pounds

I've never been so happy about a 4 pound weight gain in all my life.
Way to go little girl, way to go.

(Officially, she's now 2273 grams, or 5.01 pounds, or 4.05 times her birth weight of 560 grams)

Baby Baby

6/8/10 Taken while some tubes were being changed on the CPAP machine. So nice to see her face.

Charlotte is 2220 grams (4 pounds 14 ounces) and her CPAP settings are currently at 7. It took her 3 days to move from an 8 to a 7, so maybe this time next week she'll be on nasal cannula. They've changed her feedings to 42 mL/ 3 hours over 40 minutes (previously over an hour).

Some of her tubing from the CPAP machine fell on the floor last night, so the respiratory therapist had to change out a whole bunch of stuff (technical, I know). For about 15 minutes, Charlotte was on blow by (air was being blown past her face and she would breathe that in on her own) and it was amazing to see her face.

We were able to check out her hair (it's growing!) and much to my dismay, everyone thought she looked like Pete. Darn kids and their Knickerbocker genetics. I know we keep on saying this, but she really looked like a BABY. Weird, huh?

We're going to try to see if they will allow her to be on nasal cannula while we hold her, since she did so well on blow by. We'll see... it's a stretch and I don't want to get too set on it, but we'll make the suggestion.

We'll let you know!

Shiloh

I had a long poignant post ready for you all, and then I read Hillary's blog (I posted about her situation a few weeks ago).

Her son was born yesterday, and they had one hour together before he left them.

Nothing I have to say seems quite right.

Please say a prayer for this family tonight. They have an angel looking down on them, but I think they'll need a few more angels here on Earth to help them get through this time.

http://bhcalaway.blogspot.com/

Thanks.

Day 100

One hundred days ago, we walked (I was rolled) into the NICU and met this little baby girl:

Today we held this one in our arms:

There just aren't words.

We're Still Here

What a week! I'm not going to assume anyone was biting their nails waiting for me to post, but I'll apologize for keeping you all hanging anyway.

This week has been great for Charlotte. She has been successfully weaned from the SiPAP machine, and is now preparing for a wean from CPAP. She's currently at a CPAP pressure of 8 and they want her to be at a pressure of 5 before they'll try nasal cannula. The current plan is to take her down one pressure at a time every other day (Monday-7, Wednesday-6, Friday-5). We'll see what she thinks of that :)

Charlotte is currently taking 40 mL/3hrs and is still fortified to 28cal/ounce. She's weighing in at 2075 grams, or 4 pounds 9 ounces.

**Warning: Discussion of breastfeeding follows. If that makes you uncomfortable, don't read, but I will remind you: this is a blog about a baby...**

We've also started non-nutritive sucking exercises, on which she has most likely missed the memo. For NNS, I pump and then take her to breast, to give her the idea that she is supposed to breastfeed, but not overwhelm her with something to swallow. Currently, she rolls her eyes and goes back to sleep. Oh well, we'll get there eventually.

We've also started talking about bringing her home!! Scary, and exciting and OH-MY-GOODNESS-I-CAN'T-WAIT-TO-BE-DONE-WITH-THE-NICU!!

Charlotte has two requirements to come home:
1. Be on the nasal cannula w/o any significant consistent desat's
2. Be able to feed orally for 2-3 days straight.

Non-nutritive sucking is the first step in teaching her how to eat orally. Then she'll start "nippling" from a bottle and eventually, she'll *hopefully* latch on.

It's hard to stay focused on her in the NICU when I feel like we have so much to do to get ready for her to come home. We need to get a car seat, figure out where she's sleeping, move furniture, etc. And then, I need to find a happy medium between people who take their babies out in public right away and people who don't let their babies out of the house until they're three (yes, there are NICU mom's who do this. Many of them).

So it's weird trying to figure things out. Is it worth it to sign up for a race? Will I be able to go running? Is it worth it to get the car seat adapter for my stroller? Will I even have a use for a stroller with her? Will I go ANYWHERE? Can I go hang out with friends? When can I go grocery shopping? Can you tell I'm freaking out a little bit?

Having a baby in the NICU? Not so scary (she has nurses!). Bringing one home? Terrifying (she has me!).

Phew. That's all.

2 Kilos

Sitting in the bouncy chair, where she watches "TV" aka, the mobile.
(5/27/10)

That's right, ladies and gentlemen, Charlotte Amalie has hit 2 Kilos. Specifically, she is 2010 grams, or 4 pounds, 6.9 ounces, or 3.5 times her birth weight of 560 grams.

Her SiPap pressures are 10/8 (hoping to have that down to 8/8 by Friday), she's using about 40% oxygen and her hair is the fuzziest thing ever (think baby duckling fuzz dyed brown). Her heart rate is even sitting at about 170. Perfect? Yes.

Pretty much, she's rockin' life. She's more awake, still doesn't cry (technically, she can cry, she just doesn't very often. When she does, she's super raspy from being on the vent) and is using her hands to self soothe (she cups her cheeks with her hands-- way too cute).

(5/27/10)

Her head is still a little "toaster head"-ish but hey, nothing a helmet can't fix (just kidding... sort of). And seriously, when you're problems can be fixed by a helmet, not so bad. We'll take it.

And, to top it all off, her great-grandma Barbara left her a gift of the most adorable dress I have ever seen. I'll post a picture, but just believe me, it's so dainty and cute (when did I become a mom of a girl?!?!). If she's big enough for it, she's totally wearing it to her "Thank you for keeping my mommy sane" party on July 3rd. (If she's home by then. Which we hope she is, but we're not too, too set on it.)

So yes. Life is good. Thanks for celebrating these good days with us. We're having more and more days to celebrate and we're so grateful you're all here so we can share the joy. That was sappy.

But true.