Thursday, February 10, 2011


We arrived at CHOA-Scottish Rite at 6 am. We didn't have any paperwork to fill out so we just sat around for a bit. Not too long, though. We were called back into our pre-op room. They told us the ear tubes would go in first, then the palate surgery. They said she would be knocked out before she even got her IV put in. The nurses asked the usual questions about allergies and the last time she ate. The surgeons stopped by to answer our questions. The surgery wont effect her molars in any way. The surgeon said we could solid foods, as it may be easier for her but definitely continue haberman feeding on an "all liquid" diet. Contradictory, right? Anyway, since our formula is so thick we've been squirting regular AR into her mouth. She has taken the nipple in and sucked, so that's amazing. We also let her drink some pear juice to keep her hydrated. We're going to water down our fortified formula so she can drink it. She is actually doing really well with pain management. The first day she had 2 doses of morphine and mostly slept- while I held her. The second day she was able to have a few squirts of pedialyte so they gave her tylenol with codeine. She had that twice I believe. This morning part of her packing fell out so we gave her another dose, and I think we gave her another one this afternoon but after that she's gone about 8-9 hours without it. She's sleeping most of the time. Still prefers to be held but getting better. I'm still exhausted so I apologize if this gets out of order and weird.

When they brought her back to us they had dimmed the lights, she was wrapped up in a ton of blankets, and pretty delirious. There wasn't a lot of blood, thank goodness, and very little swelling. That made it much easier for me to deal with the situation. She did want mommy to hold her, and only mommy, and all the time. Price you pay for having a baby. She had her no-no arm restraints on, which they called "welcome bands"- hahahaha. We eventually got moved down on the first floor into our recovery room. It was actually quite nice, the fold out couch wasn't terribly uncomfortable. As I said before, we were able to squirt some pedialyte into her mouth and that allowed us to give her tylenol with codeine (there has to be food in the stomach for the tylenol). She was a little cranky, but mostly sleepy. She kept her hands out of her mouth for the most part when her no-nos were not on her. She did not like sleeping in the crib, it was very tricky to get her to sleep in there so for the most part she slept with me/on me on the fold out couch. We are so grateful for how things have turned out. She also didn't have any night terrors from the anesthesia. There wasn't a lot of screaming in pain and agony. We were able to actually get some sleep- even though it was often interrupted and non-consecutive. Everyone was impressed with her, from the nurses to the surgeon. He also said her palate was wider than most but that meant we had to keep a keener eye out for apnea- which she did not develop. The nose trumpet was a pain but she was doing so well they were able to remove it before she went to sleep that evening. The surgeries were very, very quick. After they took her to surgery we walked to the cafeteria to get breakfast and when we walked back into the room the phone rang. The ENT was calling to tell us everything went fine- she had more fluid in her right ear than left, and we need to follow up in 4-6 weeks. I dont like that I have to wait 4-6 weeks to see if her hearing is ok. Someone suggested 2 weeks and I like that better. 45 minutes later the surgeon walked in to tell us about her wide palate but the success of the surgery. Another 45 minutes later she was brought into us. So if you count the time as from 6 am when we checked in and 10 am when she got back in our room it was 4 hours. If you count surgery plus recovery it was 2 hours. If you count surgery alone, only an hour.

By the way, the metal crib looks more like a steel cage. It says less of "a baby sleeps here" and more of either "I can protect you from sharks while diving in the ocean" or "grudge match Saturday night on PPV!" Further, the sheets on the beds gave her a bad facial rash. It's a children's hospital- how do they not have dye-free/detergent free extra soft bedding?!?!

Anyway, she has to be on nasal spray for the next month (twice a day), she had ear drops twice a day for the first 3 days there. She has to be on nystatin for 3 days, three or four times a day. I hate nystatin. It gives her diarrhea and makes her face itchy. She only has to be on it for 3 days though so we'll be done by Monday.

Her feeding really picked up the evening of the second day, she ate a number of ounces so they felt ok to let us go home the next morning. The next morning part of her packing fell out and scared me to death. It was a giant red booger/slug looking thing. I was terrified her stitching or sutures had popped and part of her mouth had fallen out. It really upset her as well, and seemed to cause her pain. We knew the packing would fall out, we were told so by the physician's assistant. We just thought it would be later, and for some reason I had assumed not painful. Plus it looked like her palate had come back. The packing and stuff was so low in her mouth that I had thought that was the palate. Of course logically I know the roof of your mouth doesn't begin at your gum line; it's up much further. All the same I was scared. In either case the nurses looked her over, said it was fine and let her go.

So in summation while in my head I had pictured a screaming restless infant in huge amounts of pain, I got a sleepy infant with pain being managed who was even able to eat a bit. I hope this makes sense to someone who is about to go through the same thing.

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