Happy 3 Months!

Happy 3 Month Birthday!

Charlotte in her party dress (5/24/10)
(newborn size dress)

Charlotte's Web
aka-- her crib
Pink blanket with name made by Peter's Aunt Jenny
Quilt made by Amanda

Today is Charlotte's 3 month birthday. This means she has been in the NICU for 89 days, (12 weeks, 5 days), is 37 weeks old (gestation) and will be home in (approximately) 4-6 weeks!

Heart: Still fast, still regular. Still just watching things.

Lungs: We looked at an x-ray of her lungs today and even I could tell they were looking great. Her doctor described them as "healing lungs" which almost made me cry. Her lungs are healing. We're praying for no more pneumonia because as long as she continues the path she is currently on, all is good. They've changed the way they want to wean her off the SiPAP, so we'll see how it goes today. SiPAP works by having a high pressure burst of air every so often (in Charlotte's case, it is 10/minute) and then having a steady stream of low pressure air constantly. To wean her to CPAP (which is a constant flow of pressure) they will wean her high pressure setting down to meet her low pressure setting. This wean should take about a week or so and then she'll be on straight CPAP. Do I make any sense anymore? I can't tell.

Feedings: Charlotte is taking 35mL/hour and is rocking it.

And the best part is, this is all we have to report. Each day things get better and better and we just wait for her lungs to grow and get a bit stronger.

Happy birthday little girl!

Lung Update

Today the doctors have started to wean Charlotte from SiPAP to CPAP. Every 12 hours, they give her a try at CPAP and they keep her there until she swears uncle. Today she lasted 2 hours and then had to go back to SiPAP. But each try is a move in the right direction.

For her to come home, she has a series of machines she has to concur, but this is her first step. The long road looks something like this: SiPAP to CPAP to High Flow Nasal Cannula to Nasal Cannula to plain ol' generic room air. She can come home on nasal cannula, but we're hoping she doesn't need it.

And she weighs 1825 grams (4 pounds, 0.3 ounces).

Blog Update

I'm posting this in the "What Can I Do" section as well, but I thought I would put it here, too.

Our NICU is in need of some items, and as wonderful as they have been to us, we thought we would try to help out in any way.

First, they can always use preemie sized clothes. Clothes are easiest when they have snaps and can go on from the bottom (instead of being pulled over the baby's head). These could be gently used or new.

Second, they need swings and vibrating bouncy chairs. These need to be new. Batteries are not needed. (I think they have stock in Duracell).

Third, they need a new crib. Try pricing on of these hospital cribs online and you will be shocked. A NICU crib can run as much as $5,000 or more. We're going to make a donation to the NICU in Charlotte's name in an effort to help them purchase a crib. The new crib will be inscribed with Charlotte's name so she'll always have a place there. :) If you would like to donate for this crib, please contact either me or Peter at afarr04 {at} gmail {dot} com or peteknickerbocker {at} gmail {dot} com. Any little bit can help.

We sincerely appreciate all the help that people have given us, and we don't want to make people feel like we're constantly asking for things. But we also know that there are people who want to help, and want to feel involved, who haven't been so far. So here's the information, do with it as you please.

We love you all. Your support (by simply reading this blog) is genuinely felt and desperately needed. We can't do this without you, and no matter how you show support, we feel it. Really, truly and honestly.

Cheesy or not, it's true.

12 Weeks, 1 Day

Wearing her Sunday best. 5/23/10
Dress on loan from Aubrie Dawson and her baby doll.

Weight: 1814 grams (4 pounds)

Lungs: Off the vent! Charlotte's doctors were able to take her off the vent Sunday morning. She's been doing really well since then and everyone is very pleased. Her poor face gets so scrunched up when she's on CPAP, but it's so much better for her lungs than the vent was, so we'll adapt.

Heart: She continues to have moments where her heart rate jumps to over 210 bpm, but for the most part, her heart rate is about 170-180. I even saw it as low as 160 the other day. So we're making progress.

Digestive: Charlotte's little belly was distended today (she also threw up all over a pretty pink dress) so they decreased her feeds to 24 mL over 2 hours (from 34 mL/hr) and they're giving her a suppository. Probably more information than you wanted to know, but stimulating bowel movements is a big deal in the NICU, so you'll just have to deal with it. :) She also had a larger than normal residual after her feeding, so we're hoping that it was just a random hiccup and she'll be back at it again in no time. {A "residual" is what is left in her stomach after she is done with a feeding. Before each feed the nurse suctions her NG tube to see what is left in her belly. It can be kinda gross, but it helps to measure how much food she is digesting. They also check the pH balance of her residuals to make sure the stomach acid in her belly is at the right level.}

Eyes: She had her eye exam today (finally) and so far, everything looks good. This is the time when ROP typically manifests itself, so we'll continue to watch it, but we're pleased that nothing of any significance has shown up yet.

That's the update.

36 Weeks

Can you believe it? Charlotte is officially 36 weeks. Crazy.

Weight: She's also huge. 1701 grams (3 pounds 12 ounces). She has more than tripled her birth weight of 560 grams. She's putting on weight very well right now, partly because she's on the vent, so she's not wasting energy breathing and partly because she's still drinking a protein shake every three hours. Currently she's getting 30 mL/3 hours, fortified to 28 cal/ounce.

Heart: Her heart is pretty much the same as always. She's can get a pretty high heart rate going when she's upset, but resting, her heart rate is much better. Still not sure why she runs so high, but Peter thinks she's just high strung like her mommy. Probably right :)

Lungs: Still on the blasted vent. The one I have a love/hate relationship with. We love it, because it keeps her alive (a big bonus point) but hate it because every moment she is on it, her lungs become more and more damaged. She's had a few days of really wet lungs, but she responds well to her diuretics and they haven't posed a significant problem. Hopefully, she'll be off the vent sometime next week. Hopefully.

Eyes: I wish I could tell you, but they haven't done the eye exam yet. It's like doctors have their own lives and don't work precisely on my schedule. Weird, huh?

Random: The doctors have started to talk about Charlotte coming home. Not for awhile yet, but it looks like she'll be there for sure, until her due date, and quite possibly for a few weeks after her due date. So we're looking at early July for her home coming. It also looks like I will be home bound for the next year. Woohoo. Not. But because her lungs are so fragile, any little cough or bug could really damage them, so we have to keep her from germy people (like you, kidding! But really...). Don't know yet what we are going to do about Caleb-- our plan had been for the two of them to share a room, but we'll figure it out. Also, we're planning on having a coming home party for little CA, but we'll probably throw the party the weekend before she comes home, so she doesn't catch anything. We'll let you know.

Chao!

Drumroll...

Since I know you've all been anxiously waiting, barely able to move on with your lives, we're going to let you off the hook. Waiting for what, you might ask? Waiting for CA's official name, of course.

The little one shall be officially called Charlotte. Of course, nicknames might arise, but in the debate between Charlotte and Amalie, Charlotte has won. One might ask what tipped the scales at this late game, and here it is:

"Charlotte" means small, strong female.

Could there be a better name?

I think not.

Yes, I know, some mothers might have taken the time to see what a name means long before this point (she's what, only 11 1/2 weeks old...) but I just got around to it. Since we named her after the town in St. Thomas that Peter lived in on his mission, the meaning of Charlotte didn't mean much to us. But there you have it.

Hopefully we don't find out that Caleb means something like "dog". Oh wait, yeah, it does. Our bad.

80 Days

Weight: 1579 grams (3 pounds 7 ounces)

Feeding: 28 mL/ 3 hours, fortified to 28 cal/ounce. (Pretty much, she's drinking a protein shake.. yumm, yumm)

Digestive: Just sayin', this girl can poop like nothing I've ever seen. It's pretty incredible.

Lungs: Charlotte Amalie is still on the ventilator. The current plan is to take her off the vent (extubation) after her eye exam on Thursday. She's still on higher ventilator settings, so we don't want to take her off the vent until she is really ready. They've weaned her respiratory rate down from 40 to 20 over the past few days-- meaning the vent will give her 20 breaths a minute and the other breaths she takes are all on her own. She should be down to a vent setting of 15 before they'll take her off, as well as a PEEP of about 5 (currently, her PEEP is 9). This all gets pretty technical, so I'll save it and just wrap it up with this: she needs to come down on her ventilator settings before they'll extubate.

Heart: Charlotte Amalie got herself a nice little blood transfusion Sunday and Monday. The doctors had tried to avoid giving her a transfusion, since she was making blood on her own and transfusions stop the body from producing its own blood, but her heart rate started to get pretty high again (about 200, resting) and she was getting pale. Like always, CA perked right up once she got the blood and has been doing much better since. Amazing what a little pack of red blood cells can do for you.

Favor: I have a friend who has a friend, (you know how these things go) who finds herself in a very similar situation, except about 3 months behind. Right now she's sitting in a hospital room, hours away from her family and is wondering when her baby is going to make an appearance. She's about 25 weeks along and her water broke a few weeks ago. Please, when you pray for CA, please keep Hillary and her family in your prayers as well. They have a long road ahead of them, and whether they know it or not, they need any help they can get. Hillary has been keeping a "gratitude journal" for the past two weeks, writing everyday about something for which she is grateful. You can check it out on her blog: http://bhcalaway.blogspot.com

Thanks for checking in.