Seven Quick Takes: NICU Normal

These days, when people ask me how I'm doing, without thinking, I give them an update on Isaac. That's what moms do, I guess? For the record, I'm doing well. Mostly, Mark and I are learning to adjust our expectations for what's typical in the NICU. Slowly, we are learning just what "NICU normal" is. But enough about me; wouldn't you rather hear about this sweet baby? Also, for the non-medically inclined, the human interest stuff starts around Take 4, but there are baby pics throughout :)

So snuggly, this is from when he was just a week old

-1-

Updates on Isaac usually include a medical vocabulary lesson. I like learning the lingo; here are some fun ones.

H and H-hematocrit and hemoglobin, low levels could indicate anemia, which is common in all newborns, but especially in preemies

Bands- levels of young white blood cells in a CBC (complete blood count) that could indicate infection. As wikipedia explains, white blood cells that have just been released from the bone marrow look like bands, hence the name. These are looked at separately, and in addition to the white blood cell count. Even if the WBC is normal, an elevated level of bands could mean an infection.

KUB- short for kidneys, ureter and bladder, but really its just a basic abdominal x-ray
OG and NG tubes- orogastric (mouth to stomach) and nasogastric (nose to stomach),
PICC line- I had heard of this one when I was in Antepartum, a peripherally inserted central catheter is like a heavy duty IV. It is inserted in the arm (like an IV) but goes all the way to the superior vena cava next to the heart. PICC lines last longer than IVs, so it means less pricks for Isaac and can also be used when the medicines given intravenously could be too irritating to the skin and smaller blood vessels.

Apnea, Bradycardia, Tachypnea, Desaturations - respectively, not breathing, heart rate dropping, breathing fast, and low oxygen levels in the blood stream, all terms you've probably heard thrown around on medical dramas I'm sure, and all very common for preemies.

-2-

Like all preemies, Isaac has had his ups and down. His first big hurdle seems to be learning to tolerate breast milk well, something that technically, he shouldn't be doing anyway. Since, you know, he should be gestating. The nurses use a syringe to feed him via an og tube. At first, babies only are given a tiny amount of milk, around 1/2 tsp every 3 hours. As they tolerate it, each day they increase the amount. If a baby isn't digesting milk well, his belly will get swollen and a KUB (see above) will show air in the intestines. When that happens, the feedings stop until the baby can recover. Doctors run tests to rule out infections or any other more serious complications, and we start all over again. His first go round, Isaac made it all the way up to full feeds, which for him, was 20 ml, before he started to show signs of intolerance. So they stopped his feeds, and when they started them up the second time, he made it up to 8 ml when his belly started to get swollen. They restarted his feeds 2 days ago. Since he's had such a hard time with it thus far, at first, they would only give him about 1/4 tsp at a time. As of last night he had worked his way up to 4 ml, which is almost 1 tsp. Hopefully, the third time is the charm.

It's hard to see, but I'm holding the syringe that's giving him milk

-3-

While Isaac is working on getting up to a volume that would count as a "full feed," (determined based on weight) he is also being given nutrients via a PICC line. One of Isaac's IV bags, called TPN, looks like neon yellow gatorade and is full of sugars, vitamins, amino acids, and electrolytes, so really, it kind of is gatorade, very expensive, tailor-made for him, gatorade. His other IV bag is straight-up lipids. It looks like crisco, and I have no idea how they get that to flow through an IV line, but I like to imagine that it's bacon fat. Is that gross? What ever it is, it's working; he has almost gained a full pound! And as of last Sunday, grown 2 inches. That puts him at 3 lbs. 3 oz. and 15.75"

-4-

The NICU is a curious blend of attachment parenting and high tech equipment. For all their love of gadgets, and monitors, the doctors and nurses are also huge fans of breastfeeding and skin-to-skin holding. Those two things are the best ways we (as parents) can do something to help Isaac. Preemies who are given breast milk rather than formula from the beginning are at much lower risk for some of the more severe, though common (and treatable!) complications of prematurity. Preemies given lots of skin to skin contact usually maintain their body temperature better (very important for when the time to go home is getting closer). They also encourage you to talk to your baby as much as possible. In the evenings, Mark will read to Isaac, and I throw in a lullaby or two. 

We like skin-to-skin

-5-

Here, Mark is reading Isaac Mike Mulligan and His Steam Shovel. This was a classic for both our families growing up, but in Texas, if you don't start kids on this story early it's completely over their heads. I read it to my first grade class years ago and they just didn't get it. Most of them had never even heard of a basement, let alone a cellar, and since the heat only gets turned on about 3 months out of the year, the need for a furnace didn't make much sense. Why should they care about digging the Town Hall cellar in one day? Why is it a good idea to turn Mary Anne into the Town Hall's furnace? The entire pathos of the story was totally lost on them.

-6-

Thus far, the support we have received has been wonderful, but I still think this article is very helpful. When friends and acquaintances are experiencing a crisis, illness, or even just a rough go of it, we can be at a loss for words, and the words we do say come out all wrong. Ring theory is the cure for that. Read it, you won't be sorry, I promise! And yes, I did already post it on facebook, so you might have already seen it there.

-7-

Let's be honest, most lullabies are weird. From boughs breaking and cradles falling in Rockabye Baby, to the very strange mercantile bartering of unsatisfactory commodities in Hush Little Baby, they just aren't my cup of tea. Thus far, I've found two alternatives that are our favorites. The first is "They Were You" from the off-Broadway musical, The Fantasticks. The song isn't a lullaby per se; it's actually about two not-so-star-crossed lovers being reunited. But the waltzing rhythm works, and the refrain, "they were you, they were you, they were you" reminds me of all the times we saw Isaac before he was born. That tiny blob on the ultrasound, that was him! All the kicks and the hiccups, those were him too! And now we really get to know him. You probably won't click on the Youtube video, so I'll just go ahead and tell you my favorite verse:

Every secret prayer, 

Every fancy free,

Everything I dared for both you and me

All my wildest dreams, multiplied by two

They were you, they were you, they were you

And my second favorite, which I've had on my iPod all along, is Wilco's My Darling. This one really is meant to be a lullaby. The lyrics are just so full of love and family, without being saccharine or sing-songy. Anyone who's ever been a NICU parent, and held their baby while the apnea monitor dings yet again, will especially appreciate the line about breathing. Again, in case you don't click through, the song is short enough that here are the lyrics in full.

Go back to sleep now, my darling

And I'll keep all the bad dreams away

Breathe now, think sweet things

And I'll think of all the right words to say

Because we made you, my darling

With the love in each of our hearts

We were a family, my darling, right from the start

Grow up now, darling

Please don't you grow up too fast

And be sure, darling

To make all the good times last

Because we made you, my darling

With the love in each of our hearts

We were a family, my darling, right from the start

-7-

Look who had his eyes open last night!

And now that this is all typed up, I realize it's entirely too long to be called "Quick Takes", but what're ya gonna do? What you should do is go see Jen for more!