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.

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.

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!

Big Girl

Lots of Big News to Report!

Weight: 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.

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"

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.

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.