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Wednesday, April 28, 2010

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.

Monday, April 26, 2010

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.

Tuesday, April 20, 2010

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.

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

Here's to another 50 days.

Saturday, April 17, 2010

This and That

I know we've been neglecting the blog recently (five days between posts??!!) but really, this is a good thing. It means there's just not as much to report. She's growing and just trying to keep her lungs working. She still doesn't have alveoli (the tiny sacs in her lungs that allow for gas exchange) so her lungs have to work A LOT to function "normally". This wears her out, so she has her good days and bad days, but pretty much, we're just waiting for those darn alveoli to grow. Her weight as of last night was 888 grams (1 pound, 15 ounces) but she has an IV in, so it kind throws her weight off. BUT... we're getting realllllly close to 2 pounds!!

In other news, Charlotte Amalie was a victim of the housing crisis and had to move to a new home. (In reality, the humidity function of her previous isolette stopped working, so they had to move her to a new isolette so they could fix the fancy dancy one.)

Her new home.

Grandma Knickerbocker holding her for the first time on 4/14/10

Meeting Great Grandma Ford for the first time. GG Ford came all the way from Ontario, Canada to meet her.

Monday, April 12, 2010

6 Weeks

Our little baby girl is 6 weeks old! This puts her at 30 weeks, 2 days (gestational age) and means we have approximately 10 weeks left in the NICU. Two more weeks and we're half way there!

Here's the latest and greatest:

Weight: 738 grams (1 pound, 10 ounces)

Feeding: Currently, Charlotte Amalie is taking 15 mL (.5 ounces) every three hours. This is considered full feeds! She is no longer on TPN (an IV nutritional supplement-- it provided her electrolytes and proteins and such when she wasn't eating) and her feeds are "fortified" to 24 calories/ounce. They hope to have her up to 28 or 30 calories/ounce, but they increase the fortification slowly. The fortified breast milk provides a high concentration of calories/ounce, but it also adds salts and protein to the milk. This helps her to get larger, of course, but it is also critical for her lung development.

Lungs: She's currently on a wean of Decadron (the hefty steroid), and will be off of that completely in a few days. She's on the SiPAP machine again and her O2 requirement this morning was only 35%! (You may remember that room air is 21% O2. Since she's not very efficient at breathing yet, a lot of the air from the SiPAP machine "escapes" through her mouth. For her to be able to keep her own O2 saturations up on only 35% O2 is great!) We're crossing our fingers that she doesn't "rebound" when she is off of the steroid completely-- meaning her lungs would become inflamed again and she would require more respiratory support. We'll see in a few days!

Medications: CA is officially IV free. She is getting all of her medication through her NG tube and all of her liquids from her feedings. Such a big, big girl :) She's still on caffeine (to help with her respiratory function), morphine (to help with the irritation from the steroids) and she is being weaned from Decadron.

Random: CA is loving her pacifier. I cannot believe they have one her size, but they do and she LOVES it. Which is awesome, because it means she has a good suck reflex. (That'll be important when they try to bottle feed). Also, CA is a totally Daddy's girl. Peter was able to Kangaroo Care with her yesterday and her vitals were PERFECT. I held her for about 10 minutes and she was not as excited. Dad definitely wins. It's pretty cool though that she's starting to recognize us.

Friday, April 9, 2010

From Peter

The really tough part about having a NICU baby is dealing with the constant ups and downs. One day is great and the next day is a real fight. You can't really get too excited about progress because there is a good chance you will be taking a step backwards tomorrow. There is this unsettling feeling that the ground is constantly shifting under your feet

With that in mind, she has had a really good week.

Lungs: On Monday night they took her off of the ventilator and put her on CPAP (Continous Positive Airway Pressure). CPAP helps keep her lungs open after she breaths out and decreases the effort needed to take a breath. She had a little trouble on this machine keeping up her oxygen saturation. They went back to the same ventilator as she was on before, but this time used a different mode of ventilation. She is on IMV (Intermittent Mandatory Ventilation) through nasal prongs/face mask. SO I guess technically, she is not off the vent, but she is no longer intubated. IMV is a vent setting that allows the patient to control more their own breathing and is often used to wean patients off the vent. She has done really well with this setup. She has gone up and down on her oxygen requirement (has to keep it interesting I guess) but she has been hanging in there.

Heart: Seems to be doing really well in this respect. She throws a fit when the nurses mess with her to change her diaper or come into her space to do anything. This serves to greatly increase her blood pressure, but it comes back to normal quickly after closing the doors on her plastic box.

Feeding: She is currently on 10 ml of breast milk every 3 hours and seems to be doing really well. They started fortifying her breast milk today. Normal breast milk and formula is 20 cal per ounce. They add a packet full of goodies to her breast milk to increase the caloric content to 22 cal per ounce. Her stomach can only hold so much liquid, so you have to concentrate the amount of calories per ounce of fluid that she receives. They said today that she is getting to the feeder grower stage in the next few weeks. I can't wait!!! That just means that all of her medical/ organ problems will be addressed and she will just be sitting around eating and getting bigger. She already looks bigger to us.

Thanks for all of your prayers!

Tuesday, April 6, 2010

Big Girl

Lots of Big News to Report!

908 grams (2.00 pounds) We expect her to lose a bit of weight in the next few days since they had to stop her feedings, but we know that she's capable of packing it on when she's eating well. Yay! We plan on having a 2.5 pound party, as that will be double her birth weight :)

Gastro-Intestinal: They have increased her feedings to .5mL every hour, running continuously. We're hoping that we'll be able to increase this each day, as her feedings are really the best medicine for her at the moment.

Lungs: Last night, Charlotte Amalie was taken off the vent! On Sunday she was switched back to the regular ventilator, as she was requiring way too much oxygen on the Oscillator. (At one point, she needed 100% oxygen and she was consistently requiring almost 90%.) The same time they switched her ventilator, she was also given a dose of hefty steroids to help her breathe better on her own. Previously, we had discussed giving these steroids to get her off the ventilator, but by Sunday she was relying on the vent so much that they had to give steroids just to bring down the vent settings. The steroids worked really well, and within hours of requiring nearly 90% O2, she was down to only needing 50% O2. By last evening, she had developed an air leak around her tube and she's not quite ready for the larger sized tube yet, so they decided to try and see how she would do on the SiPAP. So far, so good! Last time they extubated her, she struggled, tiring herself out. So far, the doctors and nurses seem pleased with her efforts and she doesn't appear to be struggling. We really didn't think she would be able to be extubated for another week or two, so we're really excited, even if it only lasts a day or two.

Heart: When she went on the Oscillator, they had to give her a medicine called versed, which is a sedative. Often babies get agitated on the Oscillator, since the machine shakes them so much, so they give a small sedative to keep babies calm. CA had a nasty little reaction to the versed and her blood pressure plummeted. She was put back on the hydrocortisone to increase her blood pressure and has been doing well ever since. (Yet another reason to get her off of the Oscillator).

So in summary, she weighs a whopping 2 pounds and is off of the ventilator! A big day for a big girl.

Sunday, April 4, 2010

Happy Easter

Too tired to write a post. Here's some pictures.

Checking out Daddy. I love when she opens her eyes!

So peaceful. Somehow, with all those tubes and IV's she rests so well.

Family picture, minus C-Bear.

Best of all, today, siblings met for the first time! In a very older sibling like manner, Caleb was completely unimpressed with his little sister. He kept asking for the other babies. Don't worry little man, she'll be like the other babies soon enough and you'll wish she was tiny and quiet again!

Showing Daddy that Baby Sister has fingers.
When we ask what his sister's name is, he says "Baby"

Saturday, April 3, 2010

Lazy Bones

Good News:
Yesterday, the doctors were watching her for NEC (a condition that causes intestinal tissue to die. This can cause the bowel to 'tear' and dump contents into the abdominal cavity-- it's really, really not good) but luckily today, they have ruled it out. Phew.

Bad News:
Charlotte Amalie is requiring a lot of support on the ventilator. Currently the Oscillator Ventilator O2 levels are in the high 80's but hers are still in the low 80's. We're waiting for the results of a blood culture (should get them back tomorrow) to make sure she doesn't have a systemic infection (an infection is considered systemic if it enters the bloodstream). If she is clear of infection, they will probably start her on a steroid, not to help her get off the ventilator, but to help her have a little more strength so she doesn't rely on the ventilator so much. It looks like she'll be on the vent for awhile longer.

I think she's just gettin' lazy.

Friday, April 2, 2010

She Wants to Impress Uncle Aaron...

Uncle Aaron will be impressed with how young our little one is as she begins forming a relationship with Physics. She's currently taking a hands on course in Brownian Motion.

Uncle Hiram, Uncle Nick, Uncle Soren, Uncle Tracy and Aunt Katie will also be impressed. CA is rockin' things Star Wars style.

(I just realized how nerdy our entire family is.) Let me explain.

Yesterday, Charlotte Amalie was switched to a different kind of ventilator-- called a High Frequency Oscillator.

St. Joseph Mercy Health System in Michigan explains the Oscillator like this :

When a conventional ventilator fails to provide an adequate amount of breathing support or when we become concerned that the conventional ventilator may be causing additional harm to the lungs we may change to a special type of ventilator called a high frequency oscillator. This type of ventilator also requires that a tube be placed in the infant’s windpipe. The oscillator ventilator provides constant pressure to the baby’s lungs that keeps them inflated with air. It then vibrates very rapidly which can often be seen by watching the infant’s chest wiggle.

Here's the beast itself:
She's totally got her own R2D2! Am I right, or am I right? This thing has 1977 written allll over it.
Actually, I think George Lucas might have invented it.

This Oscillator might be totally old school, but so far, she seems to be pretty happy on it.

Waving hello. Measuring tape for reference.

CA has been relying more and more on the ventilator and the doctors and nurses had to keep increasing her settings on the standard vent. Yesterday afternoon, they decided to try the Oscillator and see if it would give her a break. The Oscillator works through a whole bunch of boring physics, (thus the mention in Brownian Motion previously) but essentially, babies who are on it can stop breathing all together.

And it's OK for her to just go ahead and stop. Crazy, huh?

The high frequency vibrations oxygenate the lung tissue and the blood so she doesn't actually have to move her lungs back and forth. This will allow her to take a bit of a 'rest' and hopefully build up her reserve so she can get off these silly breathing machines all together.

That's the latest. Ciao.