Primary Closure

What a whirlwind few days!  Sunday night I packed up the bags, put her to bed early, drank a lot of wine so I could sleep, and then tried to wrap my mind around how her world was about to change...again!  Of course I had moments where I fretted about losing her and over reacted about everything that could go wrong, but I woke up ready and calm on Monday morning.

Day 1

We got her to the pre-op room early, early (she was second surgery, only after a suture removal), and began our wait.  She hadn't eaten and I had to keep saying no to her drink requests but she was in such good spirits.  She was wonderful and happy and only a little hesitant when they took her away.  We moved to the waiting room.  My biggest concern was if there was going to be a reaction to the anesthesia - we would know about that right away.  About 20 minutes later the ear surgeon comes out and tells us the tubes are in and they were starting the cleft - well, I guess the anesthesia was okay!  When it hit the 2 hour mark I started to get antsy... the surgeon had estimated 1.5 - 2 hours.  I had to remind myself that it was 2 hours starting AFTER the anesthesia and tubes.  I resolved to sit patiently still.  I looked up and the surgeon was walking out to us and said it had all gone well.  He said her muscles were strong and moved well, which should help her speech development, and that everything closed over like he expected.  They had to cut the tissue up into the hard pallet so that he could stretch it enough but he had said that might have had to happen too.  He assured us again that it was all good, kept asking if we had any questions, and said they would call us in an hour or two when she was ready to be taken to her room.  Mike and I heaved a big sigh and finally felt safe to go eat lunch!  Almost as soon as we walked back into the waiting room (30 minutes tops) the surgeon came back and said he had just checked on her and they would be calling us soon!  He said she was reaching for her mouth so they had to put the braces on her arms, but we expected that since she sucks on her fingers.  I was surprised that they were calling us now.  The phone rang and we went back to see her in recovery.  She was hyperventilating and clearly very upset.  The nurse said she thought we would calm her down better than anything else.  She saw me and said "hiii" like she does from her crib every morning, and then she started wailing - it was a strange, stuffy-sounding wail, but it broke my heart.  The nurse told me to sit and she handed her to me and I just began singing and talking.  She stopped crying and just did the big, racking sighs.  She eventually drifted off and Mike and I sat there holding and petting her for over an hour.  She was attached to IV fluid and a morphine infusion and was swollen and slightly bruised around the mouth.  My poor baby.

At around 2:30pm, the nurse came and took us to our room and we moved her to a crib.  She looked at Mike and asked, 'up?' in that same stuffy voice but that made me feel good that she is still in there and not traumatized.  She slept and we waited for her to wake up again.  She would wake up and be upset that she couldn't touch her hair or wipe her eyes and the tubes clearly bothered her.  She would reach for us and we did our best to console her.  I even climbed into the crib for 4 hours and held her.  When she woke up again, she asked for something to drink!  Good sign since she was on IV fluid and finally feeling thirsty!  She tolerated a little water and then Mike took her and held her until the morning. 

Day 2

The resident surgeon came in with his entourage and checked her mouth.  He said the wound looked dry and intact and that they would take her off the IV this morning.  He also said our primary surgeon would be in later.  Once the IV was out she ate a LOT compared to all of our expectations!  Another good sign!  Then the diapers started needing to be changed.  Yeah to fluid passing through her no problem.  She was still receiving morphine every 4 hours with her acetaminophen but being off the infusion made her so much more herself.  She did get really fussy just after lunch but we could tell it was because she was tired and angry that things felt different. She didn't seem to have problems swallowing food or water though!  It was the new sensation of suction that was hurting her.  She kept sucking her tongue to the new roof of her mouth and causing it to hurt!  After her much needed nap she asked for Elmo (which we had packed) and wanted to go for walks.  We went to the activity room and the play room, where the clown and her entertained each other, and she was so much herself that it felt amazing.
Now, I say she was herself personality and spirit, but there are things that are obviously different.  The first big thing, which we never had even considered, is that the tone of her voice is different!  She is even higher pitched than before.  She is nasally, more from the blood and swelling, but there is a definite 'Minnie Mouse' quality that was not there before!  She already had such a girly sing-song voice that it cracks me up to hear her now.  She also snores now, which I had never heard before.  It makes sense if you consider that they do surgery to make the soft palate smaller to reduce snoring and she didn't even have one before!  hahaha!  It is also refreshing to not see food come out her nose right after eating - although the blood right now is not so fun.  It keeps scabbing over so she can't breathe!  (The bath when we got home cleaned a lot of that though!)
At the end of this day she went to sleep in the crib by herself.  She was fussy because she knew we were right there but she did eventually fall asleep after spending the day with limited pain medication.  Success!

Day 3
After a visit from the resident and his students, we were told we were clear to leave today if we felt comfortable with that.  He was happy with what he was seeing and hearing of her progress.  The primary surgeon came in after that and said very much the same thing.  I told him that we wanted to try her without the morphine this morning just to see if she could tolerate the pain, and then we would be comfortable taking her home.  She had a good morning eating and reading books.  She went about 6 hours without morphine and then she through another fit  (again, I think it was because she was woken up every four hours so she never really got a good sleep) and eventually I think it was hurting her in her throat and mouth because she was crying so much.  We called for the morphine to help her sleep.  The nurse brought the magic and she fell asleep not long after and woke again in good spirits.  The surgeon came in while she slept and I said we were ready because I think being in her own home will do her better and he agreed wholeheartedly.  He said that all they were doing was pain control and we can do that at home as long as we felt okay with that.  He was still very assuring that everything was going well and made sure all of our questions were answered.  He wants to see us in 3 weeks for followup.  When she woke up, we ate lunch, packed, and were officially discharged.  She was quite dopey in the car but perked up when we got home.  She ate a small dinner, played a whole lot, and started to crash early.  We gave her a bath, which seemed to make her happy, and gave the ears a chance to be 'cleaned.'  I use quotations because the amount of scabbing in there doesn't allow for us to really go in and clean and know we won't hurt anything, so we just let her lay underwater and then I removed what scabs I could from the outer opening.  Poor kid.  So full of scabs.  Anyway, she is at home now and asleep in her crib.  She has only had two doses of morphine today and will hopefully have a good sleep - her first in three days.  Hopefully, Mike and I will too!

Kid is an incredible survivor.  She proves it again by blowing all my worries out the window for the newest giant upset in her life!  

Before! 

After!