So Far So Awesome

Sometimes it seems like I can never put Avery down without her vocalizing protest.  She will usually last 10-15 minutes talking to herself on the floor or in her bouncy chair, but that's hardly enough time to accomplish the most basic of daily things such as showering.  Also, my arms are tired. 

In an effort to free my aching arms a little longer during the day, my mom helped us get a swing.

We took this one for a test drive in Target.  She seemed happy enough for a few minutes so we packed it home and prayed she'd like it.

So far so awesome.

She's already spent an hour in this thing and is perfectly content.  It's a miracle!

I love to hold this baby but sometimes my arms need a break.

Now what do I do?!?  Take a shower?  Eat a hot meal?  Paint my toenails?

So much to choose from!

(Thanks Mom!)



One Month and Rules Please?!

My baby is one month old!

Well technically one month and one week today but I took this picture last Wednesday when her one month mark was official.  I just sort of guessed that probably I should be documenting monumental milestones like that.  Is that what you're supposed to do?

You see the problem for me with motherhood is that there is no rule book on how to do it all right.  If you know me like Kyle knows me then you know that I like rules (pretty much all of them made up by me).

"THIS is how you load the dishwasher the best way."

"THIS is how you wash your whites"

"THIS is how you make your bed with hospital corners."

I thrive on knowing how to do things the best way.

This is not a particularly agreeable personality trait, by the way.  Because you know what?  There are a lot of things that don't have a right way to do them and that drives me crazy.  I'm always on the hunt for the fastest route, the most efficient use of time, the best way to blah blah blah.

Let me tell you one thing, this is the best way to annoy your husband because if you are me then you married a man who does not thrive on rules as such.

But I had a large cranberry limeade from Sonic tonight and oh man, it was so good.  I crave cranberry like it's my job.  And I'm not even pregnant anymore.

And anyway, motherhood.

I realized today that I have no idea what I am doing.

I mean I know the important things like change it when it's dirty, feed it when it's hungry, hold it when it cries...

But here's where I get lost: what do I do with a 5 week old baby all day?  Aside from feeding and changing, I spend a good deal of my time staring at her cuteness and watching mindless reality television.  Thanks to football season, cable has reappeared in our home.  Hello Kardashians!  Hello Project Runway!  Hello America's Next Top Model!

Can someone please make me a freaking schedule for crying out loud?!?

Or an instruction manual?!?!!

Or lend me Baby Einstein?!?!

As much as I love Kim and Kourtney and Tim and Tyra, I hardly think these are good role models for my infant.

Of course all of this is to say that again, there are no rules.

I know this.

But seriously, it drives me crazy.

Thanks!

I just wanted to say thanks for the warm response to my post about PKU. We have received so much love and support!  I didn't mean to be such a downer, but it was important to me to be honest and real about my process in dealing with this news.  Now that PKU is going to be part of our lives, I wanted to get it out there because I'm sure it will come up here again in the future.

I feel a little selfish for having felt the way I did about it because I know there are so many out there who struggle with things which, in comparison, are probably much more difficult.  But the reality is, this really sucked for us and has been difficult in it's own right.  At the same time I already feel this experience has strengthened our marriage and made our family stronger.  It has also led me to have more faith and to look to God for strength when we had none.  I'm now even more grateful for God's plan and purpose for us in this life and I believe that my broken heart was mended through a lot of tearful prayers.

See more about what I believe here

My Turn

I know, I know, there's a whole lot of baby up in this blog lately.

But can you blame me? :)

After years of enduring friends' stories of baby poop and sleep schedules when I had no idea what they were talking about (nor did I probably care too much), I figure it is now my turn.

My turn to tell you (whether you like it or not) about how this sweet baby face was responsible for spitting up in my face.

Twice.

Maybe she did not like all those kisses?

My turn to share with the world that Kyle's secret talent is getting this baby to poop.

What can I say, the man has a gift!

And my turn to confess that I never slept better than with this baby in my arms.

Our new reality

We had only been home from the hospital with Avery for one whole day when three stupid letters changed our lives forever: PKU.

The pediatrician gave us very little information when he called to tell us we needed to go to Primary Children's Hospital for additional testing.  When Kyle asked him what PKU was, all he said was that it can cause brain damage.  You can maybe imagine how we felt.

We couldn't get in to the hospital until the next morning and I spent the whole night worried and scared.  We had no idea what PKU was but the thought that something could be wrong with my perfect, tiny newborn was absolutely devastating.  I kept praying that maybe it could be a mistake.

At the hospital we met with a geneticist and dietician who explained that because of her initial PKU test results, Avery was going to need treatment right away.  I thought we were just going in for additional tests, but that wasn't the case.  I totally lost it.  I cried the whole time we were at the hospital while trying to make sense of what they were telling us.  I don't think I've ever felt so heartbroken before.

She was only 5 days old and I felt cheated and angry and vulnerable.  I felt cheated out of enjoying every moment with our newborn without worrying about her health and her future.  She changes so much every day and instead of soaking in her 5 day old cuteness, I was emotionally shattered and cried pretty much nonstop.  I was so angry that this had to happen to her, and to us.  Angrier still that, because PKU is a genetic disorder, every child we have will have a 25% chance of having PKU.  Angry that everywhere I looked were people with "normal" children.  And I felt vulnerable as if now anything could happen.  As if something else could go wrong at any moment.  It was like we had a perfect shiny bubble of carefree happiness when we left the hospital and it was completely destroyed with the news about PKU.

Avery will have to deal with PKU every day of her life and that pissed me off.  I haven't been a parent long, but it's been long enough to understand that parents want to protect their children from everything possible.  There is enough out there already for her to worry about in life and the thought of her working every day to manage this disorder wasn't fair.  And it made me mad.

The pediatrician was right: PKU can cause brain damage.  But what we quickly learned is that it is also manageable through diet and that brain damage is totally preventable.  "Individuals with PKU cannot process the amino acid phenylalanine, which is present in most foods. Without treatment, phenylalanine builds up in the bloodstream and causes severe neurological complications, including mental retardation. The standard treatment consists of a strict diet very low in phenylalanine and daily consumption of special formula containing life sustaining nutrition. If the diet is consistently and strictly maintained, individuals with PKU will develop normally." from here

What this means for us is right now Avery alternates between a special (very expensive) formula and breastmilk every day.  When she starts regular food we will have to weigh everything she eats and record it.  She will never have foods high in protein like meats, fish, eggs and dairy.  We also have to prick her heel regularly (right now it's twice a week) and send blood samples to be analyzed to check her phenylalanine levels.

Avery is now 3 weeks old and I think I have come to terms with all this PKU stuff.  I expect that it will become difficult again when she starts baby food and again at other milestones and when she starts school and when she goes to a friend's birthday party and things like that.  But for now, I have accepted that this is our new reality and our lives will never be exactly the way I had expected they would be. 

Even if God had told me before I got pregnant that Avery would have PKU, we would not have changed anything.  We would have still had her.  We love her more than anything and wouldn't trade her for the world.  Some of my saddest moments in dealing with this are thinking that she will never have an ice cream cone or chocolate or a juicy steak or a hamburger.  It sounds so silly to even think that but food is such an important part of our culture (and especially my life!) and it is going to be very different for her.  How will it be when she gets invited to a pizza party?  Or to a friend's house for dinner?  Or gets asked on a date to a restaurant?  Or when she goes to college? 

In worrying about her future one night I had the impression that Avery was born with the strength and ability to deal with this and that we need her more than she needs us.  It scares me to think of the future and all the ways PKU is going to affect it, but the most important thing is that Avery will be fine.  She will be healthy and unlimited in anything she wants to do in life.  And as much as I wish I could take the PKU away, I am grateful she does not have anything more serious or life threatening and I am grateful it was detected before it could be damaging to her.  Most of all, I am grateful we have her.  She still is our perfect, tiny newborn and slowly our shiny bubble of carefree happiness is being put back together.  Even if PKU has to be a part of it.

More about PKU:

http://www.pkunetwork.org/

http://www.pkunews.org/

http://www.go-ipad.org/