Week 7

Wednesday morning, I got a phone call that scared the hell out of me.

Our nurse for the day called to tell me that Stephen’s head swelled significantly over night, and they had paged the neurosurgeon to come take a look at it because they were concerned. They expected him to be there within an hour.

That was my first real test of remaining calm since the end of week one.

It took every ounce of control I could muster to not run straight out the door in my pajamas and crazy morning hair.

I took a deep breath.

And then I took a shower.

And while I showered, I prayed.

I prayed for peace in my heart.

I prayed for the strength to receive the news without my husband at my side.

I prayed for a clear mind, one that could listen and comprehend what I was being told so I could fully inform my husband.

And I sang the chorus to one of my favorite songs; Greater is He by Blanca

And greater is He living in me
Than he who is in the world
Whatever may come, His strength is enough
My heart is at peace, for greater is He

I walked out of the apartment ready to embrace whatever was coming my way.

I didn’t have to wait long.

The neurosurgeon arrived and took a very brief look at Stephen.

And he told me he was pleased with what he was seeing.

I wanted to throw up.

I wanted to smack the nurse.

I wanted to hug the neurosurgeon.

I didn’t.

But I wanted to.

Let me backtrack a minute.

Before and after Stephen’s surgery, the neurosurgeon explained a lot of stuff to us. We’re constantly being given new information with lots of big words and acronyms, and it’s a completely different language. I’m not always able to store all the information given to us because I really only have so much room left in my brain, and all the lyrics to every Backstreet Boys song ever Algebra equations I learned in high shool seems to be a file that I can’t delete to free up some memory.

Sometime during all the discussions of the VSG shunt (explained in my Week 4 post), they had mentioned that there could be swelling. The doctor actually said something along the lines of, “Don’t freak out if you come in one morning and it looks like there’s a big bubble under his skin.”

I was very vaguely remembering that minutes before he came in the room.

And then when he was all pleased, that’s when I decided I was mad at the nurse.

Not really mad.

Just like, really?

But I was too relieved to even act irritated. She did explain that they don’t typically deal with this type of shunt. They deal with the permanent ones 99% of the time. And when there’s swelling with THOSE, it’s a big deal.

The swelling in Stephen’s head came from the CSF draining out of the ventricles and into the reservoir. That’s what it’s supposed to do. They can then tap the reservoir to remove the fluid without sticking a needle into his brain.

With the permanent shunt that he’s probably going to have at some point, it would drain out through a tube that would be under the skin and goes all the way to his stomach. Then the CSF would be reabsorbed into the body that way.

So after he did a quick recap for me of what the shunt was supposed to do, he tapped the reservoir to remove the fluid.

The procedure was very quick and appeared to be painless. They poked a teeny tiny needle into his skin and removed 20 cc’s of CSF. The whole thing lasted maybe a minute.

During the procedure, the nurse and I were geeking out together. Not that it was enjoyable or anything. But it was very fascinating.

After the doctor left, the nurse told me his red blood cell count was up from a few days ago. That’s fantastic news! That means his body is beginning to make up for the blood he loses during blood draws on its own. Hopefully, it also means no more transfusions.

It’s also been decided that Stephen will soon begin the process of weaning from the isolette and begin sleeping in a crib. He runs warm, and he’s been pretty consistently on (or close to) the lowest heat setting.

They’ll start by dressing him in clothes (!!!) and swaddling him.

Then at each care time (when we change his diaper, take his temp, start his feeds, etc.), they’ll decrease the isolette temp by .5 degrees.

Once he’s at the lowest setting, he must maintain his body temp for 24 hours.

If he can, they’ll move him to a crib.

I’ve read that it’s very common for preemies to fail once or twice once they move out of the isolette in the beginning.

So I’ll keep that in mind when the time comes so I don’t get discouraged.

We haven’t discussed exactly when this will happen, but I expect it’ll be this week or next week.

Even though our Huskies lost, Saturday was a lot of fun.

After 47 days, our son got his first bath!

He was much less dramatic than I remember our daughter being.

Sweet little love pooped right in my hand.

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Thanks dude.

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Look at that beautiful, chubby face sans tubes!

The nurse we had that day is a big UW fan, and she knows we are too.

So she made this for him to wear after his bath.

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How sweet was that?

[Garret thinks he looks like he just escaped from an insane asylum.]

And after his bath, his daddy held him for the first time.

And they watched the game together.

Sunday he had his first eye exam.

They were checking for Retinopathy of Prematurity (ROP). This link gives a really good explanation of what ROP is.

The doctor determined that Stephen’s retina’s blood vessels were actually more developed than he would expect at his age. So we’ve been given the all clear for now and we’ll see him again in 2 weeks for Stephen’s next exam.

It really was an excellent week.

At 50 days old, Stephen already has a strong opinion.

He loves his paci.

Even though his vitals are really good when he’s swaddled and on his tummy, he prefers having his arms free and up above his head.

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He gets red-in-the-face mad when you disturb his slumber.

And gosh darn-it he will one day rip those tubes right off his face.

He also looks for me when I talk to him.

He turns his head to each side really well.

He has AT LEAST twice as much hair as his sister did when she was born.

He is gaining weight like a champ.

3 lbs 10.9 oz and 15” long

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Look at that little smirk! I’m so thrilled that I got it on camera.

I’ve always loved the saying, “Babies smile in their sleep because they’re listening to the whispering of angels.”

Grandpa Gary’s telling him stories about the trouble his daddy got into when he was younger.

Great Grandpa Eddie is telling him the story of how his daddy got his bear rug.

Great Grandpa Gordon is telling him about the first time he and Grandpa Tom took his mama fishing.

And all three of them are telling him that everything is going to be okay.

 

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3 thoughts on “Week 7

  1. He is so beautiful Ashley! I love his little smirk. I was really excited when they let us put clothes on Mara. It felt like a little piece of normal. Congrats to Stephen for reaching that milestone! I also wanted to tell you if you ever need a break, the ram down by the water has the best happy hour from 4 to 6 Monday thru Friday. Really cheap food and drinks. Robby and I loved going there for short breaks. Also there’s a Greek food place somewhere up there by the hospital that is amazing and cheap. Are you going to be at the Nicu on Friday afternoon? I have a care package I’d like to bring you and maybe buy you a cup of coffee if that’s OK?

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