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.