Wednesday, June 13, 2012

Benjamin's Life: Mumurings

Today I got to put Benjamin's outfit on. It's one that I picked up at a clothing swap and thought about giving to DI but ended up keeping...just in case.

It's so tiny! It's smaller than the other premie clothes that we've been given (which I haven't washed yet) and when I held it up to him today I didn't think there was any way that itty-bitty onesie would fit on that great big boy! With much difficulty (it's been a while since I've tried to dress a newborn) I got him into it...and it practically drowned him!

I ended up rolling his sleeves down so that he could have access to his hands (should he suddenly decide to do something miraculous like suck his thumb).

This baby is tiny! His arms are about as thick as Andrew's fingers. His legs aren't much fatter. We took pictures yesterday to show how small he is...people keep saying how big he looks...but that's because there's nothing to scale him by. Everything that surrounds him is miniature— miniature cannulas, miniature blood pressure cuffs, miniature outfits.

Today was another big day for Benjamin. He's 35 weeks old today (they count his gestation age instead of the days he's been alive) so they've weaned him off of caffeine. They put little babies on caffeine to limit episodes of apnea and they felt confident taking Benjamin off of it since he hasn't struggled with apnea. He finished his round of antibiotics and they removed his IV line in the wee hours of the morning. So he's off of all medicines, which is a good thing.

He's been rather spitty-uppy so they've changed his feedings. He now is eating less milk over a longer period of time. He eats for 1 hour every 3 hours, which means he's eating 1/3 of his time in the NICU. Part of me wonders how he'll ever get hungry enough to really try to breastfeed if he's eating almost constantly. But, he needs to keep his food in his tummy. They're hoping that taking him off of caffeine will also help soothe his tummy since lots of his spit-up is pink (and I guess the caffeine medicine they give him is pink).

On Monday we were told that they'd detected a heart murmur. This was the first we'd heard of it, though they originally detected it when they admitted him. I don't know why they didn't tell us about it. Or maybe they did and we...forgot...but I'm pretty sure that hearing the words "Your baby has a heart murmur" isn't exactly something you forget. They went a couple of days without hearing the murmur so they thought it had corrected or that they'd misheard but they started hearing it again so they ordered an echocardiogram for him, which revealed an atrial septal defect.

Basically, there's a hole in Benjamin's heart that hadn't gotten the chance to close before/after he was born. Wikipedia explains it better than I ever could:
During development of the fetus, the interatrial septum develops to separate the left and right atrium. However the foramen ovale allows blood from the right atrium to the left atrium during fetal development. This opening allows blood to bypass the nonfunctional fetal lungs when the fetus obtains its oxygen from the placenta. A layer of tissue called the septum primum acts as a valve over the foramen ovale during fetal development. After birth, the pressure in the pulmonary circulatory system drops, thus causing the foramen ovale to close entirely.
Or, in Benjamin's case, not entirely. It should correct itself but it might not. If it doesn't it's not a huge deal; there's a relatively simple surgery that can correct it. But they're thinking that it should correct itself in the near(ish) future. We'll have to meet with a cardiologist a couple of times while we're here and then find a new one when we move.

Just another thing to worry about. *sigh*

He seems to be doing well, though. He's been off his cannula for a couple of days now and he keeps his oxygen levels up while we try to breastfeed. 

Breastfeeding. Oi. That's a process. 

We've had over a dozen nursing sessions and so far Benjamin can latch on. That's about all. Sucking and swallowing seem to be beyond his grasp. It's getting rather discouraging even though everyone keeps assuring me that his not doing much is normal and expected for his (gestational) age.

I get to try to feed him twice a day. We spend 15–20 minutes trying to stimulate his sucking reflex. And then we give up and I hold him skin-to-skin while he is fed through his NG tube...for an hour. And then when we're all finished with that I pump so that I don't explode. My milk supply is through the roof! 

Yesterday I expressed around 75 ounces. My goal is to work down to between 24–36 ounces. 

I. Am. Drowning. In. Milk.

Fortunately, Benjamin isn't suffering for want of milk but they've started to fortify my milk since they'll be giving him less of it each feeding—not only because of his proclivity to regurgitate his meals but also because they tend to feed premies the maximum amount of fluids their little bodies can handle and they're worried that they're making his heart work too hard to pump all that extra fluid around. 

We don't know how long we'll be here but Benjamin seems to be making progress. We just need him to learn how to eat (oh, and for his heart to finish developing)!


  1. So glad to hear he's doing better. It's a slow process, and I know that sometimes a feeling of helplessness and not being able to take control will cause frustration, especially with all the hormones flying around! But you are getting through this so well. He is absolutely gorgeous! (My brother was cute like that - smaller than Benjamin - when he was born, and now he's a 6 foot tall, 200Lbs Swede :) Still cute.) Oh, and if you have extra milk, I know there's someone out there that you can donate it to.

  2. Wow, that is a thing to worry about. I'm hoping everything will take care of itself as you are being assured.

    As much as I enjoyed breastfeeding---I hated the constant leak I seemed to have. drowning in milk is a good way to put it

  3. I'll pray for his heart, too (just saw the "bless his heart" facebook comment). I remember them telling us Matthew had a heart murmur and freaking out about it, and then everyone was like "oh yeah, it's really common and usually goes away" (his did). So maybe that's why they didn't say anything at first.

    I drown in milk too when I've been breastfeeding. Those first few weeks are miserable! I can't imagine only pumping to calm it down... I hope it regulates quickly for you!

  4. Replies
    1. Yes, Cait. 75 ounces. I make a lot of milk.

      One morning this week I filled up TWO 8 ounce fifteen minutes.

      I am a milk cow. I always knew I made a lot of milk...but this is the first time I've been pumping and measuring how much milk I make.

  5. Sabrina has a heart murmur. Weird thing is they only detect it some of the time, they figure she will eventually out grow it.