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.
Well, what can I say. Sleep was more important to me than this blog, but since the sleep strike is showing no signs of abating... well, life goes on. Or at least, that's what they say.
The main Halloween costume:
Yes. She is a Star Trek captain, specifically, the command gold form the original series. I believe that by the time she is old enough to be the next captain of the Enterprise, they will switch back to gold because it is flattering for her skin tones.
There was also this costume:
Because it was cute, that's why.
In sequence: Finding candy, grabbing candy, results of candy being taken away.
Lastly, greeting people at the door:
She's either going to be just like us, or need years of therapy.
Brace Yourself: The Night Before / The Day of Surgery.
Lis couldn’t eat past 1:30 am. You better believe we made sure that she was sucking down the last drop of her bottle at 1:29:59 am. When the doctor told us she wouldn’t be able to eat for about six hours beforehand, I laughed at her and said, “So, what you’re telling me is that you want me to transport a wild grizzly bear in my car to you with no tranquilizers?” She laughed, and said yes.
It actually worked out okay. We slid Lis out of her bed and into her car seat with a paci, and she went back to sleep for the car and for the walk up to surgery. [Bonuspoints if your hospital has wagons, because you will have a ton of stuff with you] Once we were there, there was so much activity that when she woke up, she was fascinated by all the people and sounds that she never got too grumpy.
Lis got weighed in, vitals signs checked, doctors came by to check her out, do last minute informational sessions with us, have us sign things, etc. All that took about an hour or so. Mama Vor was with us, helping corral Lis while we took care of documents, etc, [NOTE having a third person there is super helpful, but chose wisely! Pick someone who can keep it together and not be an extra burden on you. Mama Vor was awesome] and when we saw it was getting close to go time, she said her goodbyes to Lis, and went out to the waiting area so that we could be alone.
I will never, ever be able to erase from memory the moment the head anesthesiologist nurse came and took Lis away. She was kind. She stayed in the room for a few minutes, letting Lis get to know her, playing with her, letting her play with her surgical mask and her scrub cap. After a few minutes, Lis went happily into her arms, we gave her last kisses, and they walked away. Lis looked at us over the nurse’s shoulder for a few minutes, but then wanted to look around at where she was going. The back of her little head was the last thing I saw, and I completely lost it. So did Vor.
That was the worst moment of my life, and I hope I never find anything to top it. I think if there is a worse moment out there, it will completely break me. Just to warn you.
Waiting Waiting Waiting.
They told us it was a six hour operation. That’s true, but not true. Be ready for that. Perhaps, from the time the knife touches her skin to when they stitch her up is six hours, but she is out and you are away from her for much much MUCH longer. We last saw Lis around 7:00 am. We didn’t see her again around 5:30 pm. She was out for most of that time. Lis’s surgery took a bit longer as well, because Lis had some minor complications that caused much hmmmm-ing when they opened her up, and plans were revised on the fly. [NOTE I never again want to hear a doctor come out of surgery on my daughter, and say, “Well, that was interesting.”]
We were in a very nice open air waiting room with comfortable chairs and couches. There was a nurse we checked in and out with so that she always knew where we were and how to reach us. That being said, we always made sure that one of us was in the waiting room at all times. I brought work and book to distract me. People from work made up goodie bags for us that had applesauce containers, spoons, granola bars, trail mix, gum, puzzles, magazines, cards, a stress ball, and lots and lots of tissues.
There was a nurse solely dedicated to scrubbing in and out of Lis’s room to give us updates. She came out every 45 minutes to 1 hour to give us updates. I basically lived and died by that schedule for nine and a half hours. She would talk to us for ten minutes, I would send texts and make calls to give people updates, and then I would watch the clock, counting down until she would come out again. I CANNOT DESCRIBE how grateful I was for the constant updates. I have heard some people went hours without an update and I think I would lost my mind.
Recovery Room, aka, The Cry Fest.
Eventually, we got word that Lis was in the recovery room, and they brought us down to the individual waiting rooms outside surgery. Our doctors showed up and gave us the rundown of how it all went, and described the minor complications she had. They told us again what to expect for the next few days, and then sent us in with the anesthesiologist to see her.
Bring tissues. I kept it together, but I could not stop the tears from just falling. I was okay, but my tear ducts were completely independent of me at that point.
Lis was asleep, snoring loudly and making the nurses laugh. She always snores, so that was good to hear. Her little face was not bruises or swollen yet, though she looked a little pale. She had only needed one blood transfusion, though, so that was good. Her head was completely bandaged. Once the anesthesiologist signed off on her, we wheeled her over to the ICU and got checked into our room.
It's 1 am. Lis is screaming, just like she does every night. Not sleeping, still. We're going on 4 months of this nonsense (bonus! 4 months since surgery & she's doing great!). I'm so tired, and I'm angry almost all the time. I have a new case on my docket that is so public and sensitive that I won't even breathe a word of it here, but rest assured I was working on it all night until the screaming started.
I give up. I really do. I love Lis, but something has got to change.
Okay, fine, you can email me at graceandpressure [at] yahoo [dot] com. Don't all flood me with emails at once, you know. If you're emailing about craniosynostosis, put it in the subject, and I'll respond quicker. Deal? Deal.