Saturday, November 13, 2010

I'll take that medical degree now, please...

Before we get too heavily into the NICU part of our NICU journey, Casey and I thought it best to do a "vocabulary" lesson on NICU terms. Now, let me preface this list by saying: We are not doctors, nurses or any sort of medical professional- we just play one on the interwebs. So, don't go writing us when we inevitably get a definition wrong; or screw up a term. It'll happen; trust me.

Let's start with the biggies first...

NICU: Neonatal Intensive Care Unit. UNC Children's Hospital calls their unit the Newborn Critical Care Center (NCCC) and Rex Hospital calls their unit, which is really not a NICU but we'll get into that later, the Special Care Nursery (SCN). Whatever you call it, it's all the same- a place that cares for and treats babies of all shapes and sizes. The NICU isn't just for preemies. Often times, full-term babies who are born with medical complications are taken to a NICU for treatment. These babies, for us preemie parents, looked like toddlers but our hearts went out for their parents nonetheless.

Kangaroo Care: A sweet way to say "Skin-to-Skin contact". Developed in 1978 by Dr. Edgar Rey Sanabria because of a lack of caregivers and hospital space, mothers in a NICU in Bogota, Colombia were asked to hold their preterm infants skin-to-skin to provide warmth and easy access to breastfeeding. This in turn, freed up overcrowded incubators and nurses. Since then, it's been proven to successfully improve survival rates of preterm and low birth weight babies as well. Casey will do an entire post about Kangroo Care later; but Beatrice Kate and I did this everyday she was in the hospital (aside from one). There's a lot to say about it; as we are firm believers in the power it had in Beatrice Kate's early discharge from the NICU.

CPAP: stands for Continuous Positive Airway Pressure, though it's normally heard as "nasal CPAP" or "bubble CPAP" for the noise that the machine makes while in use. This machine delivers a little pressure to a baby's lungs to help them stay inflated. Often, preemies are born with weak lungs which can get "stuck" after each inhaling breath. The CPAP helps deliver air to their lungs via small (and we're talking really small) nasal prongs and tubing. Here you can see Beatrice Kate displaying her nasal CPAP fashion:

De-sat: Just a quick, fancy way to say that your baby's oxygen saturation level is decreasing. NICU babies are hooked to a lot of alarms and bells. A small fuzzy cuff usually found on a preemie's foot or hand is one of them. It's important to keep baby's sat levels just right because while too little oxygen can cause brain damage (something to avoid, obviously),  too much oxygen can have a damaging effect on eyes. In fact, did you know that Stevie Wonder wasn't actually born blind? Nope- he was given too much oxygen (because even he was a preemie!) and it caused him to lose his vision. Interesting tidbit. Typically, an "acceptable" oxygen saturation range for the tiniest of preemies is anywhere from 85% to 92ish%. Of course, as they get older, you expect their sat range to increase to near 100% before their allowed to come home.

A's and B's: We heard this term everyday. Literally. A is for apnea. B is for bradycardia or "brady". Apnea is when your baby stops breathing for a short period of time, often times causing a brady or a slowing of the heart rate. Trust me, the first time you see your baby do this (and it will happen in the NICU) it scares the beejezus out of you. See, preemies. because their born too soon (duh). have immature brains. These brains need time to develop the mechanism that signals to their body to keep breathing or to breath regularly. Often times a preemie will "forget" to breathe, causing their heart rate to drop suddenly. Usually, older preemies will recover on their own, and will suddenly remember to breathe again (thus, causing their mother to breathe again) with a large gasp. For some though, a slight touch on the foot or back will sort of wake them up as if to say, "Hey, tiny baby, remember you have to breathe". In some rare times, a more aggressive stimulation is needed or even a little oxygen to the nose can help. The thing to remember is that it's called "Apnea of Prematurity" for a reason and usually, the preemie will grow out of this habit as they get more mature. In the interim however, a daily dose of a small amount of caffeine (seriously) is started to keep baby breathing regularly.

Bilirubin and Bili lights: After a day or so in the NICU, I was shocked to walk in and see my new baby glowing blue, relaxing with sunshades on her face. I was worried that perhaps she had taken a sudden interest in the Jersey Shore but no, the nurses assured me- she was not a juice-head-in-training. She was developing signs of jaundice (scientifically known as "hyperbilirubinemia"), and the treament for this is phototherapy or exposure to "bili lights". Jaundice in newborns occurs when excess bilirubin is built up in the baby's system. What's bilirubin? That's the "waste" of broken down red blood cells that are normally pooped out by the baby (we're very technical here). In preemies- this can take longer than normal because their not typically feed very much (if at all) and thus, don't have a lot of waste to well, excrete. The Bili lights help the baby's body break down these old cells and get them out of their little bodies. For some babies though, like Bea, a simple one-light-up-above for a few days isn't enough. That's when they introduce the "bili blanket". That's a glowing blanket that the baby lays on so that she's receiving lights from top and bottom. Here is a photo of our little alien baby with her Bili lights:
Catchin' some rayzzz...
PICC line: Peripherally inserted central catheter or a really, really long lasting IV. Beatrice Kate received hers on Day 2. What is it? A PICC line is a small catheter that's inserted into a main, peripheral vein (like in an arm or thigh) and snaked (snuck?) up through larger veins towards the heart. Most long-term NICU babies will wind up receiving this little gem shortly after they are admitted so they can receive total parenteral nutrition (coming up next. Why? Because it's really hard to stick a hand that's smaller than your thumb every, single day. It's also very stressful for the baby and NICU babies do not need any added stress to their lives.It's certianly great to not have your baby stuck frequently; but every time we held Bea while she sported her PICC, it was like handling a porcelain doll. Whatever you do- you do not want to rip that thing out accidentally. Not to mention, Beatrice Kate's PICC line (and the three other attempts to insert one) left a sizable scar on her arms and legs.

Total Parenteral Nutrition (TPN): Remember how I mentioned that most NICU babies don't receive a lot of milk for a while (or any at all)? No, they're not starved to death. Instead of filling premature stomachs with milk (which most likely aren't ready to begin digesting yet), NICU doctors and nurses supplement a baby's nutrition with an intravenous mixture (given through the PICC line) of lipids (fats) and electrolytes (not dis-similar to Gatorade). As the baby grows and their body is capable of digesting larger and larger quantities of milk, then the amount of TPN administered is decreased until the baby is solely relying on milk intake.

Necrotizing Entercolitis (NEC): Oh, how I cried when this term was even just mentioned in relation to my daughter. NEC, a condition of inflammation and infection of the intestines,can cause destruction of the bowel or part of it.NEC typically occurs within the first 2 weeks of life, usually after milk feeding has begun. Preemies are really susceptible to it because their intestines are so weak anyway, and any small amount of irritation can have terrible consequences. Unfortunately, at some point during your NICU stay when (not if) your baby "gets sick" NEC will most likely be brought up. Fortunately,  like 90% of the time, it turns out to be something else. This was the case for us. I'll write more about the day that Beatrice Kate got sick in the NICU because it was HORRIBLE for everyone; but it was only made worse when the doctors threw out the phrase, "It could be NEC, but we won't know for sure for a few days". What? Nooooooooooo! Anything but NEC. Babies who do develop NEC (about 10% of babies who weigh less than 1500 grams or 3 lbs, 5 oz.) often have long lasting complications including future feeding problems. I was comforted by the fact that NEC seems to usually develop in formula fed preemies, and Beatrice Kate was receiving breast milk. One of her doctors said that some research showed the breast milk may coat the intestines with antibodies that can help fight off NEC. Of course, breastfed infants can still develop it; but the risk is much lower.

Small for Gestational Age (SGA): A medical term to say "your baby is the small kid in class". My baby was SGA. At just 993 grams, 2 lbs. 3 oz., she was technically the size of a 27/28-weeker, not a 29 weeker. This meant that she could potentially encounter some of the problems a baby of that gestational age could face in the NICU. Of course, she did not- but it was not pleasing to hear at the time. When you're in the NICU, you live and die by the daily weigh-ins. We celebrated every, single gram she gained. I quickly learned that 30 grams is an ounce and could easily convert any metric weight into pounds and ounces. For a SGA baby, doctors may say things like, "She may just always be a little smaller than other kids her age." If you've seen Beatrice Kate or her chunky thighs recently... well,staying small is obviously not always the case.

Retinopathy of Prematurity (ROP): ROP is a condition that premature babies are a risk of developing because of a random growth of blood vessels in their eyes. This can lead to a detached retina or scarring. Mild ROP usually clears up on it's own; but more serious cases can lead to blindness. Remember the Stevie Wonder story? Yep, his blindness was caused by ROP. To screen for this disease, all preemies are given an eye exam or two before they're discharged. No, they are not asked to cover one eye and read the top line. Instead, a pediatric ophthalmologist uses a (wicked looking) speculum to take a peek at their retinas. Beatrice Kate had these screens (one at UNC and one at Rex Hospital) and after getting the all clear, we were told to have her eyes examined at age 3 and a half. Seriously, the doctor said 3 1/2 (who says that?).

Anyway, like I said- I am not, in fact, a doctor or any kind of trained medical professional. So, don't get huffy with me if I've mis-defined a term or explained it incorrectly.

If we've left any out and when you're reading our blog you stop and say, "Huh?", leave a comment and we'll define it for you. We sometimes forget that not everyone has a preterm baby (thankfully) and got so familiar with hospital speak, it's practically our second language (third for Casey).

1 comment:

  1. Thank you so much for joining the Fight for Preemies! Your vocab lesson is perfect. It is frightening those first few weeks in the NICU with new terminology being bantied about.