Tuesday, January 15, 2013

Three years (and 1 day!)...

Yesterday marked three years since Miss Sunshine's palate repair.  I would have posted yesterday, but I'm sick with the plague (not really, but I am really sick) and just didn't feel up to it.  Honestly, I don't feel up to it today either, so no promises on the quality of this post...

I think I touched on most of emotions regarding her surgery in my last post.  So, I thought I'd do a little update, and then give you all some pictures of her journey to date.

Miss Sunshine has FINALLY made it on to the charts - she's roughly 25% in weight and 40% in height.  It only took us three years to get here!  She's been done with speech therapy for a year now - and while she does still substitute W for R, she is getting better about saying it correctly when it is modeled for her.  We have no other developmental concerns - she's well above age in pretty much everything.  Including imagination, it seems.  She's got that in spades.  I can hear her right now having a serious conversation with her stuffed Bullseye toy and our cat, Dante, in the living room.  It's so great to watch her grow and flourish and turn in to this amazing child.  Her personality is BIG (Diva doesn't even being to do her justice), she is FULL of drama of all kinds (good and bad), she loves to sing, her favorite colors are pink and purple, and she is the princess of the house, no questions asked.
The day she was born - you can sort of see her cleft here.
My first glance of her!
Her cleft palate
Another Palate shot
Waiting for surgery (Sorry, I can't seem to get this to go the right direction!) That is a Haberman (or Medela Special Needs) nipple in her hands.
Post-op, right after she woke up.  You can see the thread through her tongue taped onto her cheek.
1 week post-op - the white patches are where they opened her palate around the gumline to meet it in the middle.
One year post op - she would NOT open her mouth.
Two years post-op (with her Monte's Bears for Clefts bear)
Three years post-op!
Three years post-op (she was surprisingly cooperative for these shots!)
Three years post-op (she was not so cooperative when I wanted to take a normal picture...)

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.

Monday, January 7, 2013

New Year, New Us

You know those pesky things called resolutions?  Millions of people pledge to change things about their lives on the first day of the New Year.  Generally by the first week of February, 99% of those changes have fallen by the wayside.

I generally avoid resolutions.  I don't like the idea of setting myself up for failure.  Resolving to make major changes generally results in failure.  You are much more likely to be successful if you start small and work your way up to big than if you jump straight to big.  This year I am going to make some big changes, hopefully by making small ones.

It's no secret I have struggled to lose weight.  I used to be skinny.  Age and kids and stress and life have added up to about forty extra pounds that I currently need to shed.  Last year, I tried.  I failed.  I lost about seven pounds and never got any further.  This year, I hope to change that.  But instead of making a resolution to lose forty pounds, I have chosen to make a change in my LIFE.  So my "resolution" is to eat healthier, and exercise every day.  It's easy to let yourself get caught up in excuses (as I have already done - however, in my defense, I have been sick for the last four days.  Like, don't want to get out of bed because your body feels like it got hit by a truck sick.).  I'm hopeful that, instead of having an end goal number in my mind, if I have a plan to change my lifestyle, I will see better results.

I'm also resolving to spend more time with my family.  The last two years have not been easy, for me or for us.  There is a LOT going on in all our lives, and sometimes it feels like I'm doing everything I can to just make sure I don't drop the ball, rather than actually playing with it.  I don't really know how I'm going to do it, what with work, and school, and activities, and work, and kids and, well, LIFE.  But I'm going to try.  We are going to designate "family night" every other Saturday, where we play games, or watch a movie together, or go to the park, or a ball game, or something.  We are also going to start doing "date night" between Daddy Mac and I once a month.  Even if it's just having the kids go to Grandma and Grandpa's and renting a movie, we are going to make an effort to have time for us.  Time we have struggled to make in the last two years.

The last thing we are resolving to do is to save some money.  We have a lot of necessary expenses, some rather large, which are unavoidable.  But at the same time, we need to start trying to budget more.  Or better.  I'm hoping this will resolve some of the stress in our lives.  We are doing the weekly savings plan - the first week you put $1 in savings, the second week you put $2, and so on.  By the end of the year we should have roughly $1300 in savings.  It's not a lot, but it's a LOT more than we currently have.

So, what are you resolving to change this year?  Oh, and HAPPY NEW YEAR from all of us!

Tuesday, January 1, 2013

Hello 2013!

I don't know where the time has gone. This year really zoomed by for me.

Monster Boy turned EIGHT last week. I can't believe he is already that old - it seems like just yesterday that he was born. He broke his wrist the middle of December. He fell off the vertical ladder on the play structure at his school. That was quite the adventure - but I am really proud of how well he handled the whole thing. We go next week for X-rays and hopefully cast removal. I know we are both ready to be done. He will have to wear a brave for a couple of weeks, but that will be much easier to deal with.

Miss Sunshine is coming up on the three year anniversary of her palate repair, followed quickly by her fourth birthday. My babies really aren't babies anymore, which makes me a little sad.

The holidays were quite busy and we are all still trying to recuperate from the craziness. It was a very nice year for us with family time. Just lots of running around. Our normal routine starts back up on Thursday. Of course, once we get settled in, the routine changes again when my classes start. But we are ready for it.

I hope everyone had a wonderful New Year's Eve! 2013 is going to be our year, I just know it!