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.

Love Letter

Oh Charlotte. Oh Amalie.

Someday, you won't have tape and masks and tubes on your face and we'll pick a name for you. I promise.

A little boy, Maximus, became your roommate today. He was due June 21, 2010, but he came a bit too early for his mom and dad. They sat by his crib and cried today. They cried because he couldn't come home with them. They cried because he isn't able to latch on, because scary things happened, because he's in the NICU. Mostly they cried because just a few days ago, they weren't sure if he would survive. But there he was. Breathing on his own. In an open air bassinet. With his eyes wide open and without any IV's. His parents were able to reach down and simply pick up their son. They didn't need a nurse to hold their baby.

For a moment, I was angry. {I know, you're shocked-- your mother is not perfect.} June 21, 2010 was supposed to be your due date. June 21 was supposed to be the time that I met you. These parents had 11 weeks of pregnancy I didn't have. These parents have a baby that can breathe. A baby who can take a bottle. A baby who's heart is whole and who's time in the NICU will be a fraction of your stay.

And I was angry about it.

Until I wasn't.

I was angry because they didn't appreciate what they had. And I realized, I didn't appreciate what I had either. That instead of resenting them for their "good fortune" I should be focusing on all that we have. Because we have so much.

Yes, I can't wait until the day that we can walk into the NICU and just pick you up. Sigh. I can't even imagine what that would be like. I cry just thinking about it. (Seriously, I'm crying right now. Your father thinks I'm nuts). But despite that desire, I love your ventilator. It keeps us from holding you but it gives so much.

I love that machine-- the one that keeps your lungs moving, keeps pushing air, in and out, in and out of your tiny {but getting larger} body. I watch the air flow on the monitor and it sings to me, calming me with its gentle rhythm and soft melody. In and Out, In and Out. Up and Down goes your chest. Up and Down. In and Out. Forty times a minute.

Instead of yearning for a baby yet to come, or clinging to the memory of a baby lost, I get to stay by your side, while the ventilator sings me a lullaby. There's nothing sweeter than that.

I love you. And your ventilator. {But anytime you'd like to get off of it and start breathing on your own would be OK by me. Just sayin'}.

I love your strength and your courage. I don't know that I would keep going, but you do. You keep going. You always keep going.

You're resilient. You're constant. (You're a tad bit needy, but you get that from me). You bring genuine smiles to those who interact with you. You have so far to go, but you have come so far. You believe in yourself. When the odds said you wouldn't make it, you laughed at them and said, "Watch this."

We're watching, baby girl. We're always watching. Thanks so much for puttin' on a show.

No Funny Stuff Growing Here

CA's blood culture came back today without anything gross or fuzzy growing in it. (That's a good thing).

They're still treating her with antibiotics (for 7-10 days total) and they'll just go by her clinical showings to decide when to take her off the ventilator.

I swear, I'll post something real when Peter finishes boards. Until then, we're all running around with our heads cut off... (actually, we're not running anywhere, more like slowly meandering through life without certain direction).

So yeah, next Tuesday. I promise. Until then, all you have are these silly little updates.

But, just to keep you interested, CA has hit 3 pounds! 3 pounds, 2 ounces to be exact. However, that will probably prove to be untrue once she comes off the vent (some of that weight will be attributed to the vent and IV's and such). But for now, vent and all, she weighs over 3 pounds. She's pretty much huge. Just like the weights I use at the gym :)

The "P" Word

Charlotte Amalie has developed pneumonia. Yuck. We're waiting to get the blood culture results (they'll be back in 48 hours, Wednesday morning) to see if it is bacterial or not, but the doctors have already started her on antibiotics, just in case.

It's crazy, but after 10 weeks of being infection free, we really started to think that maybe she would beat the odds. (Edit: by "beat the odds" I mean, beat the odds of getting an infection. I just re-read that and realized that might be interpreted differently. TY). Silly, silly us. It's not unheard of to get pneumonia when off of the ventilator, but it's definitley more likely to get pneumonia on the vent than it is off, so who knows how she got it.

We've been saying all along that the one thing that could really set us back, could really hurt her would be an infection. So for those who are worried, yeah, pneumonia can beat her up. But most likely, they have caught the pneumonia early enough to avoid any serious problems. She'll take antibiotics for 10 days and hopefully, by then, she'll have kicked this darn infection and it will only be one of the many stories we tell of her time in the NICU.

In better news, Charlotte Amalie is weighing in at 1295 grams (2 pounds, 13.6 ounces). The good thing about being on the vent is that she'll be able to use all her energy to grow, instead of using energy to breathe. Gotta look on the bright side, right?

Repeat Steps 1-3

It's been a long day, but we just wanted to let people know that Charlotte Amalie is back on the ventilator. She had to be intubated today for a lot of reasons, but mostly because she just got too tired and breathing on her own got to be too much work. The Nurse Practitioner was hopeful that she won't be on it for too long, and we'll find out more regarding the plan of action tomorrow when we see her doctor.

That's all.

Happy Mother's Day.

PS--

I do just want to mention how incredibly grateful we are to be dealing with Charlotte Amalie's ups and downs. While, of course, we wish she wasn't on the vent on Mother's Day, we also recognize how many people don't have a child at all on Mother's Day. As we've gone through this preemie experience, we've met so many parents who gave birth to babies, many who were much "older" than CA, and have buried those same babies. Our hearts break for them today as they celebrate being parents, but cannot celebrate with those angels that made them so.

So yes, we are ever so grateful that our daughter can be on the vent today. Because it means she's here. And we can't ever take that for granted. Hug your children today an extra time. There are some parents who can't.

Told You She Was A Star

Charlotte Amalie is the focus of an article in the NY Times Blog, The Motherlode.

Head on over and check it out.

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.