33 Weeks 6 Days

Weight: 1165 grams (2 pounds, 9.5 ounces) Her feedings are currently fortified to 28 cal/ounce and she is taking 24 mL every 3 hours. Her doctor says that even for a 24 weeker, she's still pretty small, so hopefully she'll get her act together here in a few days and really start packin' on the, umm, ounces...

Eyes: She was examined again last week for ROP (Retinopathy of Prematurity), and we haven't seen a significant change yet. She should get an eye exam again either today or tomorrow. ROP is the reason why Stevie Wonder is blind. Just an FYI. (Don't worry though, they have done a lot of research since then and have significantly changed the outcomes for preemies with ROP).

Lungs: CA is "crackly" at times and is still getting albuterol as needed. She's requiring anywhere from 50-70% O2, as she has been for the past few weeks. The doctors think that they need to give her a little bit of a push to get her to breathe more effectively, but we should have a plan in place in the next week or so. Currently, the oxygen saturation in her blood only needs to be from 84-92%. At 34 weeks (tomorrow) she will be required to maintain O2's of 92-95%. For perspective, a healthy adult should have O2's of 98-100%. At 90%, an adult (even a child) would be admitted to the hospital and would not be allowed to go home. Previous NICU thinking was that a neonate should have 100% O2 as well. However, they have since determined that too much oxygen is caustic (the reason why we need anti-oxidants) and can cause damage to preemie's eyes and other organs.

Heart: Still fast, but working. That's how we like it. Charlotte Amalie is getting some blood work done tomorrow, and they'll see if she might need another blood transfusion. We were hoping that her last transfusion (about 3 weeks ago) would be the last one she needed, since every time blood is transfused it shuts down the recipient's ability to make blood on their own. The ability to make blood comes back, but we'd much rather see her make her own blood than consistently need transfusions. However, CA loves her some blood, so if she needs it, she'll get it. Amazing what you can do with a few red blood cells...

Digestive: Since this would not be a blog about a baby if I didn't talk about her dirty diapers, here it goes. The nurses are all very impressed with her stooling ability. One nurse in particular is convinced she has the largest "stools per capita" of any baby in the NICU. Yes, I know, per capita doesn't make sense there, but you get the idea.

Medicine: This changes every 3 minutes, I swear. However, I think the latest update is this: Sodium, Phosphate, one dose of Lasix (today), 2 other types of diuretics daily, albuterol as needed, and vitamins (those stinky ones that babies get-- poly-vi-sol). They have discontinued her caffeine. I think that covers it.

My brain is shutting down, so that's all you're gettin'. I think I'm going to get me a bed in the NICU-- constant care, food every three hours, heated beds and blankets, massage therapy...

Now that I think about it, it doesn't sound so bad!

Impressive

I was just going over old posts and I realized that Charlotte Amalie has gained 400 grams in 3 weeks. That's 14 ounces-- almost a whole pound. Gotta celebrate the small (or large, as the case may be) advances!

Same Same

Charlotte Amalie's about the same medically, (they have changed they way they are giving her caffeine-- only once a day instead of twice) but the big, huge, fabulous news is:

CHARLOTTE AMALIE HAS DOUBLED HER BIRTH WEIGHT!

She was born at 560 grams, and now weighs 1135 grams. We're so excited that she's been able to grow and put on weight, as this can be a HUGE struggle for preemies. It feels good to be able to say a prayer of thanks-- I feel like all we do anymore is ask, ask, ask.

Diva

I have been saying for a long time that this little gal is a total diva.

Here's the proof:

I mean, check out those booties! And her hat?! It has a button on it. (the hat is still a little big, so we have plenty of time to use it!) Charlotte Amalie's nurse and I couldn't stop laughing as we got her all dressed. Something about dressing a baby makes me smile.

And those "poofballs" on the booties?

I. love. them.

In less important news (because, what's more important than fashion?!), here's her actual medical update:

Weight: 1080 grams. That's right folks, she's over a kilo. That's 2 pounds, 6 ounces. We're about 30 grams away from doubling her birth weight, which was 560 grams. She'll be weighed again on Sunday night, so we're pretty sure she'll have hit 1120 grams by then!

Lungs: CA has been a super star this week. On Monday she wasn't doing so well and her doctors tried putting her on a different machine to help her breathe. She decided that was definitely NOT her thing and has promised to behave in an effort to avoid the vent. So far, she's been doing really well and we're not sure how to respond to this. We keep waiting for something to happen, but so far, she's riding along just fine.

Heart: Heart rate is still elevated. Resting heart rate is about 195, and she hits about 220 when anyone touches her or when she is being held. Sometimes she'll drop to 170 or so, but 195 is her average right now. The doctors are trying to hold off doing any testing, since everything else is working so well. They don't seem worried. Peter isn't worried. I'm a nervous wreck. Par for the course.

Adrenals: CA is officially adrenal sufficient. Her fake cortisol was discontinued this week and she has been rockin' it.

Digestive: Charlotte Amalie is taking 22mL every 3 hours, and her food is fortified to 28 cal/ounce. She's taking her feedings really well and her bowels have been looking and sounding perfect. Her poor little tummy is extremely distended, but that's because of the CPAP machine that is helping her breathe. She can't control where the air goes, and a lot of it ends up in her belly. They try to vent her NG tube after each feeding, which helps a lot, but she still has a lot of air in the belly. It should resolve on its own once she can get off the CPAP (probably another 4 weeks or so).

Medicine: It's torture time for CA. She starting getting vaccines. Poor baby. She's still on caffeine (that's for you, Grandpa Knickerbocker), diuretics, and sodium.

Birthers Beware

(Should that be Birther's? Birthers'? Who knows...)


You can't doubt the citizenship of this little one. We have a birth certificate. A real one. And it says that Charlotte Amalie is 2 months old today. 2 MONTHS?!?!

In other news, Charlotte Amalie has been doing really well with the whole breathing thing (sometimes she's not such a fan...) over the past two days. They've been able to wean the air that the SiPAP is pushing down to 40% O2 (room air is 21% O2) from highs of 100% O2 just a few days ago. We're aware that at this point, she probably won't stay at this level of O2, but we'll take as many hours as we can get.


Also, yesterday CA was a body temperature rock star. She did so well maintaining her own body temp that they turned down the heat in the Isolette and put. a. shirt. on. her. Holy dang-- does this mean I can buy her clothes? Doll clothes?



Rock on little American citizen, rock on.

Happy Birthday.

Our Girl

We've been hanging out with family all weekend, celebrating Charlotte Amalie's great-grandfather Knickerbocker's 80th birthday. So here's the catch up.

(I'm trying to hyperlink medical terms so that I'm not constantly explaining things poorly.)

Weight: 994 grams (2 pounds 3.2 ounces) She's just REALLY trying to avoid hitting "1 kilo" (1 kilo is usually a benchmark used in medicine. ie Babies weighing less than one kilo do such-and-such, babies weighing more than one kilo do this-and-that, etc.).

Lungs: Her lungs have been pretty wet lately, so her doctors have put her on a few different kinds of diuretics to help clear the fluid. She's also been wheezing so she's now getting treated to an albuterol dose every 6 hours, as long as her heart rate is under 180. She's still experiencing atelectasis but she really likes the SiPAP machine, so they are leaving her on it and hoping that she is able to wean herself. They tried a different machine to help her breathe today and it was a very definite no-go, so the SiPAP it is. We assume she will be on SiPAP (or CPAP) for at least another month.

Heart: Charlotte Amalie's heart is doing really well. She has shown us that she is capable of getting irritated and usually uses a rather high heart rate to express such irritation. However, as with everything CA does, a high heart rate affects her differently than it would an adult. So they just watch her and hold any medications that would increase her heart rate if it's getting too high and we hope that she just learns how to control herself sooner or later. They'll start getting worried if she starts having a hard time eating or her O2 requirements go way up and her heart rate stays elevated all at the same time.

Adrenals: CA's starting to make her own stress hormones, so they are going to decrease the amount of artificial hormones that she is getting. Yay!

Feedings: Charlotte Amalie is up to 20 mL/3 hours-- that's 2/3 an ounce! Her feeds are fortified to 26 cal/ounce (regular breastmilk and formula is 20 cal/ounce).

Eyes: Preemies can develop a problem called Retinopathy of Prematurity (ROP) which basically causes the blood vessels in the eyes to go haywire instead of growing in a nice, orderly manner. Charlotte Amalie has started to be screened for this disorder (which is usually treatable). This week, the doctor said that he couldn't see any symptoms of it yet, but that her eyes look "hazy" so he is going to keep checking her weekly. 80-95% of micropreemies develop ROP, it's just a question of what stage she will get. ROP is only treated if it gets to Stage II with PLUS disease, or Stage III, IV, or V. So far though, so good. We'll take anything we can get.

Other: CA is starting to handle being touched A LOT better. We've been able to start helping with her physical therapy now and she loves it. The nurse was able to get a picture of her the other night when CA was being weighed, so here is the first picture we have of her without anything on her face. What do you think? Does she look like a Charlotte? A Molly? A Mollie? We need serious help here.


And just because she refuses to cut me a break, it looks like we've got another spitter. And yes, pictures of her spitting up are totally necessary, I don't know why you would even question something like that.
Her birth mark changes on a day to day basis, but on this day, it looked like a heart. It is right below her scar from the PDA Ligation (the surgery to close the duct in her heart).


Our first family portrait. Charlotte Amalie's not looking at the camera and Caleb is scratching his head. I guess that's going to be standard practice for family photo shoots with two kids.


Caleb was much more interested in her this time. She doesn't have any lines in at the moment, so she's not so scary looking. Caleb kept asking to see "all the other baby Charlotte's." We informed him that there's only one Baby Charlotte and he was rather confused by this. He also kept on pointing to her Isolette and saying, "That's Charlotte's house where she sleeps!"


And that's about it these days! We're just trying to keep her growing.

Day 51

Dear Charlotte Amalie-

You've been here for 51 days. For 51 days, I have left your bedside time and time again, knowing the nurses would take care of you, would love you, since I could not. They spend more time with you anyway.

For 51 days I've read blogs and journals, medical books and "How to Parent Your Preemie Baby." For 50 nights, I've gone to bed without worrying that your cry would wake me in the middle of the night. Instead, for 50 nights, I've worried I'd get that phone call in the middle of the night. I've worried that I would get any phone call in the middle of the night.

Over the past 51 days, I have pumped approximately 400 times. I have dialed the NICU about 100 times. I've whispered your name in prayer an uncountable number of times.

For the past 51 days, I have seen your father fall in love every time he sees you. I've watched him watch you, as if he would heal you with his eyes if he but could. I've witnessed his hands cover your body, holding you with every ounce of love that he has, willing that love to make you whole. I've held him as we both cried. Your father is not an emotional man, nor would I call him "warm and fuzzy", but girl, he has the warm and fuzzies for you.

For the past 51 days, I've wondered how to tell your big brother about you. He's interested, and scared. He knows that things just aren't quite right. He prays for you. He really just wants to go outside and ride his tractor. Or grandpa's tractor-- either one, but preferably, grandpa's.

For 51 days, we've wondered why you came early. We've cursed our Luck and thanked our Father in Heaven for our Blessings. We've been jealous of pregnant women, hurt by unkind words, and grateful that your tiny heart continues to beat. Oh, how we love that heart of yours.

We've prepared (can you prepare?) for what-if's. We've had talks about funerals and coming home parties. We'd really rather have a party, if it were up to us. That's just how we roll.

For 51 days, I've loved you-- I've loved the idea of you. But mostly, I love how you make everyone around you a better person. I love how people are kind, and for the most part, understanding. I love how concerned people are. I love how your very presence reminds people of the important things in life. There aren't many things in this world that can get people to do that.

By the way, in 51 days, we still haven't managed to figure out what your name is really going to be. Any preference? Charlotte? Charlie? Amalie? Molly? Charlotte Amalie? Charlie Molly? Let us know. People are starting to ask.

Love,
Your Totally-Clueless-but-I'll-Never-Admit-That-To-You Mother

PS-
Here's to another 50 days.