Saturday, November 24, 2012

For Cranio Parents, Part The Fourth

Intro    Part 1    Part 2    Part 3

The ICU—The First Night

Lis was not very swollen at first, and she even briefly opened her eyes, wailed, and went back to sleep. 

As far as medication goes, stay on top of it.  It’s really, really hard to wrap your brain around the fact that they are giving your baby Tylenol laced with codeine, and on top of that, morphine as well.  It’s okay.  Lis was in a lot of pain, so we made sure that she got the Tylenol/codeine dosage regularly the entire time she was in the hospital.  At first (the first night and the entire following day) we pretty much dosed Lis with the morphine close to the schedule of when she could get the enxt dose.  After that, we started using the morphine only as needed.  It works fast, so if for some reason her pain spiked, or the Tylenol wore off faster than expected (or she spit out the Tylenol), we would use the morphine.

As far as food for Lis went, we were really lucky.  Lots of babies get sick and throw up from all the drugs.  Lis was in the ICU around 5:30 or 6 pm, and we fed her for the first time around 7 or 7:30.  She took a couple ounces like a champ and never tossed it back up.  Don’t be surprised if they throw up.  It’s okay, and it will pass. 

Over the course of the night, Lis began to really swell.  It happened so fast that you could sit there and watch her balloon up.  Her eye lids turned purple as well, but her bruising was not nearly as bad as some babies’ can be.  They propped up the crib bed—they elevated her head A LOT, so that she was practically sitting up, and they elevated the feet a little, so that there was a nest for her butt to rest in.  We also corralled her in with a rolled up blanket under her butt, and rolled up blankets alongside her.  The nurses gave us was kind of looked like a gel ice pack, but was actually a soft squishy pillow to put kind of under or next to her head so that we could keep her facing forward to reduce the swelling.  During the night, depending on  Lis’s temperature, I alternated a heavy blanket and one of her lighter ones. 

The ICU would let two people sleep overnight with her.  We had a couch that folded out into a bed, which Vor took because he is really long, and a reclining chair that reclined all the way down into a bed.  I took that.  We had tons of pillows and blankets from the nurses, but I really missed my pillow.  I took the night shift.  I fed her every couple hours, and I set my alarm to when it was time for either a Tylenol or morphine dose so that I would be awake for it and I could talk to the nurse.  As it turns out, I didn’t need the alarm, because as soon as the meds started to wear off, her heart rate would shoot up from the pain, and an alarm would go off, waking me up.  The nurses were really good about explaining signs of pain and helping me decide on medication.  The first night and day, they kind of nudged us in the right direction, until we got the hang of it, and then they deferred to us. 

The ICU—The First Day

Having survived the night, I woke Vor up and mentally checked out for awhile.  I went down and got us coffee and breakfast.  Vor’s mom came, and at some point, I went to the hotel, showered, and slept. 

The swelling kept getting worse and worse, and they slowly started cutting slits in her head bandage t make room for the swelling.    She had very brief periods of time where she was kind of awake and obviously not happy.  She had IVs in both arms and both feet (they tend to go bad fast in babies, so it is best to have one in every place, so that when they fail, you can just take them out and not worry about trying to put another in), and monitors hooked up all over the place.  Pretty late in the day, they unhooked her and let us hold her briefly. 

The ICU—The Middle Days

The days were Lis’s eyes were still swollen shut and she was still really out of it were… okay.  I mean, they sucked, but she was really tired and out of it, so she just wanted to sit there and listen to us.  We read to her a lot, and made sure we touched her and let her smell us.  We kept up on the pain meds, and we even gave her bath.  The bath was a disaster—she apparently (I was asleep at the hotel and I am grateful I wasn’t there) screamed bloody murder the whole time and was frantic afterwards.  So, that sucked, and we resorted to washcloth baths for the rest of the time in the hospital. 

At some point, they gave us a stool softener for her, because narcotics make things, um, difficult for babies to pass.  OMFG.  You would not believe the diaper that we received.  Just warning you.

For the most part, I took the night shift, and Vor slept.  When morning came, we would eat breakfast and drink coffee, and his Mom would show up.  When his Mom showed up, I would hang around for a little while, then I would go to the hotel and sleep for about four hours or maybe more.  I would pick up food for dinner on the way back, and his Mom would go home, and repeat.  Visitors did come, but I usually missed them.  That’s probably good, for me, because I tend to not want company when I’m tired and scared. 

Feel free to tell people not to come.  If you are exhausted, or the baby is freaking out and in pain, having an extra person there will only cause problems.  Which remind me, about two to three days post surgery is the peak pain and swelling day.  Don’t have any visitors then.  It’s just an awful day.  Lis looked her worse and just had this low whimper all day.

We played music a lot for her.  She loves music, so this seemed to help.  Music and reading to her.  We read Harry Potter.

Oh! And! Note: During this time, Lis figured out how to game the system on medication.  Lis likes water, and formula.  She does not like flavors—juice, Tylenol, etc.  After awhile, she began refusing formula when we put the Tylenol in it, so we had to switch to syringing it in.  this worked for awhile, until she figured out how to hide it in her cheeks for, I kid you not, up to a half an hour before spitting it back out at us.  The little stinker.  Ask your nurse for what tricks to use to get them to take it and actually swallow it.


Reluctant Grownup said...

Grace -

I have, so far, sent two friends to you whose little ones have a cranio diagnosis. They are so incredibly grateful for this write up - I can't even tell you - and also to see the pictures of Lis in all her (non-sleeping!) glory today. I know it just happened and perhaps you may have wanted a little more distance before undertaking this - but oh, what a blessing it's been to my friends, and countless others. On their behalf, I give you many thanks for being willing to go back over this painful experience. I hope maybe it proves a little healing for you as well . . . lots of love and appreciation -

Gill (RG)

Grace said...

Thank you, friend!