Simon Cake

That’s what I call him more often than anything… Simon Cake.  I really just think he’s so delicious.

This feeding didn’t go well… we mostly just stared at each other.

Simon had his lesion closure surgery on Thursday morning.  It was speedier than expected, and based on some kind of neural sensory monitors they used during the procedure, his nerve communication improved just a tiny bit from his brain to his feet.  I’ll take a tiny bit of improvement over a loss of communication any day.  I would’ve been happy with just maintaining his current communication.  His incision looks great… looks better than my incision, and mine looks pretty great.  Here’s a picture of my incision:

As I said last post, we were aware that Simon would most likely develop hydrocephalus after his lesion closure.  He fought it for a few days – getting a spinal tap on his head did help the pressure – but by Sunday, it was clear that his head was really bothering him.  The occupational therapist came in Sunday afternoon and sort of rolled him around a bit and played with his ankles.  She was pretty gentle, but Simon screamed bloody murder the entire time.  The nurses were running around trying to see if they could get him some morphine because they were convinced something was hurting him.

Then, yesterday, he threw up after a feeding.  Overnight last night, he had a heart rate drop.  Nothing extreme, but enough to write it down.  Bottom line, the top three symptoms of hydrocephalus are headache, vomiting, and dizziness.  His soft spot was full, and his skull bones had separated further than they should.  There was really no getting around the necessity of a shunt.

A head ultrasound and CAT scan confirmed this.  Going through another surgery just five days after his first one was heartbreaking.  But, seeing how much pain he was in made us much more accepting of the procedure.

I really can’t explain how difficult it was to see him in that much pain.

Someone would change his position, which would aggravate the pressure in his brain.  That would give him a massive headache, which would make him cry.  The crying also increased his intercranial pressure, which made the pain worse, and made him scream louder.

That’s all I have to say about that.

His shunt placement happened today, and was an apparent success.  He’ll need some time before the shunt makes a noticeable difference in his swelling, but his soft spot felt better just a few hours afterwards.  He was under general anesthesia (again) and had to go without food prior to surgery for 12 hours (again) and was still on the ventilator as of 6 hours after surgery (again).

He recovered beautifully from his lesion closure.  I am sure he will recover just as well from this surgery, because he is magical and perfect and I love him.  Those are just medical facts.

A little smile before we headed to the OR today.

I know that a shunt is a lifetime commitment to potential problems.  They usually last about 5-7 years before they malfunction and need their first revision.  I know that someday, maybe around the same time, he might need a cord detethering surgery.  I know he’ll need physical therapy to work on his ankle flexion.  I know that newborns don’t actually smile on purpose.

I just don’t care right now.  All I want is my baby.  We want to bring him home, snuggle him up, sing to him, feed him, and hold him… without a thousand IVs and monitors attached to him.

And maybe he is just smiling accidentally in all these pictures we have of him, but really, I do NOT care!!  He is so calm and content in our arms.  I tried breastfeeding yesterday, not expecting much since he had thrown up earlier, but he latched himself immediately and drank for 20 minutes straight.  Burped himself, and didn’t throw anything up.

HE’S A MAGIC BABY AND I WANT HIM NOW.

The goal now is to heal and work towards discharge.  They’ll keep an eye on the shunt, and do some follow up tests (ultrasound, etc.) to make sure it’s doing its job.  He’ll need to get back to eating regularly and breathing on his own.  Keep sending him your most positive energy.  I know he can do it, and he needs to do it on his own time… we just really want to get him the heck out of there!!

Hey mom, can you take this thing off my wrist so we can go home?!