Wednesday, January 18, 2012

One week after surgery

Sleep?  Where have you gone?  My perfect sleeper has moved to Night Terror City.  Ugh.  I don't think he ever sleeps.  He cries half the night.

We are still having to (force) feed him with a syringe.  It takes 2 adults.  It is going better now, because Matt and I are getting better at it, and because on Sunday, we discovered that he had a raging case of thrush, and that is clearing up now.  I don't think that feeding is such a huge issue for most people after cleft surgery, but since the Panda has food aversions, oral aversions, and will only eat formula from a bottle, and bottles aren't allowed after this surgery, it is a big issue for us.  If this is your situation, though, we bought syringe feeders at  http://www.snugglewraps.com/    And, just in case anyone has a baby with thrush, I'm going to mention that in my kids, Nystatin has never killed it.  Gentian Violet killed it in one of my kids.  Probiotic powder for infants (kept in refrigerator case of Whole Foods and health food stores, or non-refrigerated Tummy Tune Up from beeyoutiful.com) dissolved in water and squirted into mouth kills it in 5 days, but you get relief in about 2 days.  Use it 3 times a day.  Take it yourself too.  Your baby will infect you.  It also helped my stomach flu symptoms to be much less, probably.  That was a fun addition to surgery week.

The good:  God provided prayer-ers, ladies who brought soup, ladies who took away other kids, and even a friend to help me clean.  I'm feeling better.  The Panda will go to the doctor on Monday, and we are praying he'll be allowed to use a bottle again.  Praying that the repair looks successful.  We've watched him every minute, but he did worm his way out of a "snuggle wrap" (arm brace) at night once.  Surely thrush in his mouth isn't promoting healing...    What you have to understand is that this Panda is a trooper.  Sweet, but so strong and resilient.

If you are going to go through cleft surgery with your child, it is hard.  Hopefully only 2 weeks of really hard.  You have to block off time to watch them constantly, feed them specially, clean them up, etc.  Make sure you only have front loading outfits- you can't put stuff over their heads...  Really pay attention to how the nurses clean the stitches- we keep getting clots there that we can't seem to clean off.  Keep up with pain medicine on time.  Remember that whatever you are doing, you want to keep from stretching against the stitches....   Be prepared to stay home a lot (unless feeding isn't such an issue for you...)  Be prepared for at least 2 nights in the hospital.  I hate hospitals, and I was glad to stay a second night- I didn't feel able to care for his needs at 24 hours post-surgery.

Today is the first I've felt human, cleaned anything, felt like parenting other kids, etc.

In other news, in less than 2 months, my husband is deploying for a one year tour.  I'm still in denial about this.  Too much to handle.  Too little sleep.  There's a picture from today in the previous post.

Psalm 69:1
Save me, O God, for the waters have come up to my neck.




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