Friday, March 6, 2015

24 Hours Post Palate Surgery

Well, if the picture doesn't sum it all up for you...


then nothing will!  : )

They let us go a little early at the hospital because of some potentially bad weather headed our way.  I've never been more thankful for bad weather!  Truthfully, FL was doing really well, but everyone knows that once you get home you just feel better.  Going home was the best thing for her at this point.  She was willingly eating and drinking and her pain was under control.  Home we went!
C fell asleep about five minutes after we got in the car and slept until we pulled into our driveway almost two hours later.  FL slept on and off during our drive home.  With her new palate, she has to retrain her body how to breathe.  She did fine when awake, but when asleep her body tries to do it the old way (breathing through the hole in the palate) and panics and wakes her when it can't.
We had a pajama day at home and were so, so SO thankful for meals that were prepared for us by others so we could feed the girls and get them back in bed for naps.    They slept a full nap time (C even longer!) and a full night that night (and then some!).  We were all SO tired.  I was really surprised that I didn't bounce back from a lack of sleep like I used to...  does that mean I'm getting old?!

Some Post-Op Thoughts for Families Like Ours:

-  Wear dark, comfortable clothing in the hospital and the first few days home.  You will get a lot of discharge on your clothes from your child's mouth and you will be holding and feeding your child most of the time.  I had spit, blood, serum, medicine, pudding, urine, juice and who knows what else on me by the time we left.
- Prepare your child's sleeping space for stains.  Blood was everywhere in her crib after her nap.  Thankfully, we covered her sheets with an absorbent, soft beach towel and changed out her pillowcase to one that could handle stains.  There is so much drainage that comes from her nose and she sleeps all over her crib at night.
- Have soft tissues, cloths available all around the house.  Boogers happen anytime, anywhere.  And these are no ordinary boogers!  Another cleft mom suggested "Boogie Wipes" to me, which are soft, moist saline wipes that do a great job of gently cleaning gummy noses.  My daughter does NOT like to have yucky anything on her, so her runny nose really distresses her.  I had her carry a baby wash cloth with her and had some soft, dry ones scattered around the house in addition to her "boogie wipe."
- Prepare for food to be ready when you come home.  I was so, so, so tired from mothering my girls while in the hospital that I had no energy left and almost fainted at one point while helping the nurse with FL.  You will be drained, even if just one night!  We had help set up to come for the farm and ended up not cancelling it because we were so tired.  We didn't even do that when we came home from China with jet lag!  We were TIRED!
- Bring lots of healthy snacks for you and your family.  Snacks saved us from meltdowns and having to run here and there trying to find food.  We could just focus on waiting during FL's surgery and recovery because we had plenty of snacks.  I even had a few things for FL that we used when in recovery.
- For us, the hospital had everything that we didn't have.  I never stressed about packing the right cups, syringes, etc. for FL post op.  The hospital even had soft food for FL to try, though I did bring my own.  They even had no skid socks for my barefoot Alabama girls to put on their feet as they paraded down the halls in the early morning!!!  However, our hospital is a very nice children's hospital.  Everyone did everything they could to help us out.  The general attitude of the staff was postive, helpful and upbeat.  Things were designed for ease of the patients and their families.  If you don't think your hospital is like ours, then make plans to do what you need to do to take care of yourself.
- Hospitals are not comfortable to sleep in.  Period.  Get rest before you go, and if you have a blow up mattress or a fold-up camp chair that you can prop your feet up in, bring that!  Otherwise, rest up!  You're in for a long night, and your child needs you.
- I brought lots of quiet toys that required little thinking to entertain C while we waited and for FL to do while in bed.  Stickers were a big hit again, our Chinese magnadoodles were a favorite and some cars that go on a lacing string were also popular.  My sister's old Memory game from our childhood also kept both girls enertained.  C has a princess playmobile set that I let her use from time to time.  That kept her busy and calmed her after FL went back for surgery.  They had gloves and masks available for those worried about getting sick or that might be sick.  C had a great time playing doctor in her mask and cleaning with her gloves on.  Be creative!  Fun is hiding everywhere!
-  Our surgery was Wednesday, we went home Thursday, stayed home Friday and had the weekend to recover.  It was fantastic to have my husband with me the entire time!  Having another set of hands to help enabled me to get rest and be a better mama.  Along with all of the food people brought to us - SO helpful!
- We were not in a stage of attachment where we felt it best to leave C with anyone.  Bringing her with us brought certain challenges, but I wouldn't have done it differently in our situation.  She distracted me from worries during surgery, brought comfort to her sister and the whole experience brought us closer together as a family.  If you have a child that is reasonably well behaved, what we did might work for you.  It wasn't a piece of cake and required more planning, but it was what was best for our family.
- Originally, we planned for Sam to stay with FL, as they are closer and C to stay with me at Aunt Sally's during the night.  C has been needing me with her almost all of the time, so this seemed the best plan.  We were told C could not spend the night at the hospital.  Well, that wasn't true, and I realized the first moment I saw FL in recovery that I wasn't going anywhere.  We hadn't planned for clothes for C and myself, so that gave us a challenge when we decided to stay together as a family.  Especially when I got doused in urine in the middle of the night!  We were creative and flexible, though, and made it through just fine.
- I have had trouble getting close with one of my daughters.  This experience helped with that.
- When we needed something, we asked for it kindly.  When things didn't go as planned we were flexible and not grumpy about it.  It just made everything better. : )
- Though we definitely set our children up for success and gave lots of grace, we parented the same in the hospital as we would have at home.  I'm sure I made some mistakes!  : )  My girls and my husband give me lots of grace, too!
- We talked about this day in advance in simple language.  We do our best to always tell our children the truth ahead of time in simple language so that we can build their trust.  Our trust "bank account" was empty the day we met them and we try to make deposits when we can!  Having the simple "story" of what was going to happen helped C and FL connect things and realize that we were telling them about this for a long time.  It was a deposit in the trust bank account!
- That's all I can think of for now!  : )  If you're a family getting ready for cleft palate surgery, please feel free to comment with questions.  I'll try and answer.

2 comments:

  1. You all did a wonderful job as a family unit. (And I love the picture!)

    ReplyDelete
  2. Amazing. I love the picture.

    ReplyDelete

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