Wednesday, January 9, 2013

I remember...

Next Monday will mark three years since Miss Sunshine had her palate repair.  Three years!  I can't believe it's been that long already!

I'm not sure where the time has gone.  I swear it seems like just yesterday we heard the words that would change our lives (and hers) forever.  "She has a cleft palate.  You are going to have a hard time feeding her."  Those words are etched into my memory.  As out of it as I was, having just undergone a cesarean section, I CLEARLY remember hearing the nurse say that.  She has a cleft palate.  She has a cleft palate.  She has a cleft palate.  Like it was ringing in my ears, over and over and over and over.  I remember urging Daddy Mac to his feet.  Go check on her.  See what the nurse is talking about.  What does she mean, cleft palate?  I remember him going to see Miss Sunshine, coming back to me.  "I don't see anything.  I don't know what she's talking about.  She looks fine."  I remember them bringing her to me, searching her face, checking her over.  It wasn't until we were settled in recovery (and I'd had an insulin shot - they pump you full of sugar water during surgery, and my gestational diabetes didn't appreciate that!) and I saw her cry for the first time that I actually saw her cleft.  As soon as she opened her mouth to cry, there it was.  Almost like it was staring at me.  Daddy Mac wouldn't even have known what it was had I not pointed it out to him. 

I remember trying, valiantly, to prove that nurse wrong about her feeding.  I could breast feed her.  The lactation consultants even said so.   They brought me some outdated information regarding only cleft lip, which all said the potential was there.  She latched perfectly.  Her latch was amazing.  I could feel her sucking.  But she couldn't suck hard enough to stimulate a let down.  I didn't want to give up.  The nurses offered to bring me bottles for her.  I refused.  They told me I could nurse her.  So I would.  Finally, after two days, I conceded defeat.  She lost too much weight, if I didn't get her to start gaining, they wouldn't let her go home.  I pumped.  Colostrum doesn't really pump well, and it was extremely painful.  I gave her formula out of a cup.  I was still hoping, praying that maybe once she got a bit stronger she could nurse.  I cried.  Ugly, sobbing, hysterical cries.  I hid it from everyone.  Daddy Mac stayed with us, so I cried into my pillow at night, while he slept.  Nobody seemed to notice, except our family physician.  But I lied, each time he asked how I was.  "I'm fine.  Things are great.  We're ready to go home."  He asked, over and over.  I shot him down.  I was afraid.  Afraid to admit how upset I was.  She was our miracle, our beautiful, precious, prayed for little girl.  How could I admit that I felt like something was wrong with her?  How could I admit that I felt like I had done something wrong to cause this?  I kept lying.  We went home, and I kept pumping.  After two days, I admitted that she had to have a bottle.  We tried everything we had in the house.  Daddy Mac went out and bought other kinds.  I enlarged holes, we dripped formula and breast milk into her mouth.  She HAD to gain weight.  My step mom went online and ordered us Mead Johnson nursers, and Habermans (now called Medela Special Needs feeders).  They came in and we started using them.  She didn't like the Mead Johnson nursers - I had to fight with her to get her to take them.  I kept pumping.  Finally, she took the Haberman.  She ate more than an ounce in an hour for the first time in her life.  Success.  I broke down to my mom, three weeks after we came home.  At 2 in the morning, when I couldn't take it anymore.  She worked second shift, and I called her to come over so I could sleep.  Only, I couldn't.  And when she got to the house, I just cried.  I held my beautiful, precious, perfect daughter, and I cried.  I couldn't even feed her, because every time she needed to eat, I had to pump.  I hated that pump.  It represented everything that was out of control about the situation to me. 

I remember meeting with the local plastic surgeon when she was two weeks old.  Being told that, since it was "only a cleft palate", he wouldn't recommend that she avoid having children of her own.  I remember being horribly offended by that, astonished by it.  Even as he said it wouldn't be an issue for her, I remember thinking, so what if it was?  I remember being told they would do nothing until she was a year old.  I remember being told about Shriner's.  I remember Daddy Mac and I agonizing over whether or not to apply, discussing it with our doctor, each other, our parents.  I remember turning in all the paperwork.  I remember getting the call that they wanted to see her.  I remember getting hearing tests done that she failed.  Going to the ENT.  Having tubes placed - her first surgery.  I remember thinking how hard that was, and how terrifying her palate repair was.  I remember flying to Chicago, meeting the cleft team.  I remember crying right there in the team meeting when they told us they were going to take her on as a patient.  I remember getting the call a month later to schedule her palate repair.  I remember agonizing over which date to chose - two weeks before Christmas or two weeks before her birthday?  We decided to wait.  I remember flying out for the surgery.  I remember being a bundle of nerves.  Staying with her in the hospital the night before, I think I slept maybe two hours.  I cried again.  I cried a lot then.  I remember them giving her versed in pre-op, then taking her back.  I remember walking out of pre-op and crying again.  I remember feeling lost - where should I go?  What should I do?  Daddy Mac was with me, so was my mom.  I remember them paging us that she was out.  The ENT came out first - they replaced one tube, the other they left.  Then the plastic surgeon.  Everything went great, they will come get you when she's ready in post op.  I remember seeing her for the first time in post-op.  I cried some more.  Saw the black thread they looped through her tongue, so that if they needed to work on her airway they could quickly get her tongue out of the way.  That was scary.  I remember her screaming, crying as she came out of anesthesia (she has never liked anesthesia).  I remember holding her, crying more.  Someone made me go eat.  My mom held her.  Daddy Mac held her, held back his tears.  Maybe he cried at the hotel.  I remember they let me feed her that first day with syringe.  She was much happier after she ate.  I remember the nurses telling me that babies rarely ate that well after surgery.  She drank 20 oz the first day.  I remember taking her down to the cafeteria for breakfast the next morning - she ate yogurt, applesauce, oatmeal, formula.  More than she'd ever eaten.  They let us go at lunch time.  By that night, she was back to herself, mad about the arm restraints.  I remember the stares in the restaurant we ate at that night, in the airport the next day. 

I remember every second.  I still cry about it, sometimes.  At night.  When I write these posts.  When we get good news.  When we heard she needs surgery again, she doesn't need surgery, she needs speech therapy, she doesn't need speech therapy anymore, she's normal.  Normal.  What is normal?  That always runs through my mind.  SHE is normal.  She is our normal.  She is perfect.  I remember that.

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