Saturday, November 24, 2012

Living With Sister


Lydia just turned two weeks old and she has brought many changes and challenges for Naomi and the rest of us.  The new baby is very different from the way Naomi was as a baby.  Naomi was "too good".  She never cried, she would lay for hours seemingly content.  We didn't know that wasn't normal.  We thought we were lucky and didn't get a fussy baby.  Lydia seems very normal.  She fusses and cries.  She wants to be held all the time, especially by her mommy.  It makes us feel like " how could we have not seen it sooner?"  And every normal thing the new baby does echoes the fact that Naomi did not act the right way.  Everything is bittersweet and the sad truth is that we will never experience pure joy with anything Lydia does.

However, Lydia has given us hope for the future as well.  With Naomi having a fatal illness, the future was filled with anxiety, fear, and sadness.  Those are still there; the shoe is always ready to drop.  Now there is something positive to look forward to.  God willing, Lydia will walk and talk and grow up.

Naomi is starting to adjust to her little sister.  She doesn't cry nearly as much when Lydia cries.  She has gotten a lot of extra attention - riding the train at the mall, going swimming, a lot of one on one time with Daddy.  Here are some pictures.

The Girls Napping

Relaxing on Santa's Train

Watching a show with Lids
I still love to swing - check out my corn bin!

Fun with daddy

My own personal show machine

Maybe Lydia isn't so bad

I am still prettier

Daddy you are so funny

Saturday, November 10, 2012

Naomi meets Lydia

Today Naomi met her baby sister for the first time.  She brought Lydia a gift




Naomi was not sure about Lydia




And unfortunately cried everytime Lydia cooed or cried which is going to get old fast,  but she still hammed it up for the camera






Friday, November 9, 2012

Lydia!!



This blog is about our family's life with Naomi and today Naomi's life got a bit more complicated.  She now has a baby sister - Lydia Eleanor Caughey.  Born at 9:48 am, she weighed 7 lbs 12 oz (compared to tiny Naomi at 5 lbs 6 oz) and was 20 inches long (compared to 17.5 inches).  She cried when she was born and cried when she got her first shot which Naomi didn't do.  She doesn't have single palmar creases, she has good tone and is very active unlike Naomi was.  She got a clean bill of health from pediatrician and does not have hip dysplasia.  In short, she appears to be completely normal for which we are so thankful.  

Naomi did not come to the hospital today.  She is going to meet Lydia tomorrow.  Anne and I Facetimed today and I showed Lydia to Naomi on the IPhone.  She has never touched the iphone before and when she saw Lydia she reached down and swatted her away.   I think this is going to be difficult.






Waiting before the C-section

Getting ready!

Happy Birthday Lydia!

You were mad!

Holding Daddy's finger in the nursery

So Cute

I don't like shots

Mommy and Lydia

Daddy and Lydia



She is chubby!

Time to burp




Wednesday, November 7, 2012

Naomi's First Haircut

Naomi got her first haircut this week.  I know, 4 is awfully late for a first haircut, especially considering that it isn't really that long or that thick.  She didn't need a haircut until now because she didn't even start growing hair until she was two, and then it was just a Baby New Year curl on top of her head for the longest time.  It had gotten unruly, however.  That Baby New Year curl kept growing and growing and had become sort of a top knot of hair several inches longer than the rest with a tendency to try to dreadlock.  Minutes after brushing and styling, the back of Naomi's hair often looked like a nest for rats.  So it was time for a cut.  I thought about taking her to my cousin Bonnie at a real salon, but I feared that the sound of hair dryers and other people talking would scare Naomi so I decided, in the end, to do a home hair cut myself.  I figured, it's curly, so even if I do mess it up, it won't be that noticeable.  In honor of Naomi's first hair cut, I have compiled a retrospective photo display of Naomi's hair through the years for your (my) enjoyment.


One day old Naomi in her 'toaster oven', i.e. isolette.  Naomi was born a little on the early side and had some trouble maintaining her temperature and regulating her breathing, so she had to be in the toaster oven for a few days.  As you can she, she has a respectable newborn sparse covering of hair.  

Here is Naomi at one month old with Grandma and Papa and her cousins, from left to right, Margot, Grace and Grant.  Her  degree of scalp coverage has not changed.  

Naomi at three months old.  Still very bald.  

Naomi at six months old.  No obvious new growth.  

Naomi at 9 months old.  You will notice some increase in the amount of hair covering her head.  Her scalp is not  totally visible anymore, though clearly there has been no progress on the length of her hair.  

Naomi at one year.  I loved this outfit, by the way.  She seems to have stalled out on the hair density front and also made no progress on the hair length front. 

15 months.  Maybe a slight increase in hair length??

Naomi at 18 months.  Definite increases in both thickness (sort of) and length (definitely).    By this point, I was getting very desparate for ponytails, bows, barettes, ribbons, etc.  

Naomi chatting with her first old friend Eeyore at 21 months.  Continued slow, very slow, but steady progress on length and thickness.  

Naomi at two years.  The baby new year curl was growing but not quite long enough for any sort of ponytail or hair ornament.   In desperation, I had started putting  this headband on her. It never stayed on long, but I did enjoy while it was on.  

Naomi at 27 months.  A tiny pony on top, WITH A BOW!  That Baby New Year curl made me very happy. 

Naomi at 30  months.  Baby New Year c url on full display.  It ALWAYS stuck up like that.  And, she started getting some length on the back and sides too.  

33 months.  Length, fullness, beautiful curls, nice sized pony on top, cute little bangs growing in.  I am loving fixing her hair from this point forward.  

Naomi at 3 years old.  This is one of my favorite pictures of Naomi.  Lots of luxurious hair.  Okay, not really for a three year old, but for sure for Naomi, since one year prior she was nearly bald still.  

39 months.  Two ponies!  And nice corkscrew curls too.  So cute.   She hated getting her hair fixed at this point, and would only minimally tolerate if it she got to watch a show while it getting it done.  Sounds a lot like her eating, yes?

42 months.  All brushed out, but not styled.  Very silly.  

45 months.  Mommy's girl.

Naomi's first haircut at four years old, done at home by Mommy.  I went for a layered approach.  It seemed easier.  Naomi also no longer hates getting her hair styled.  She is very in to being a big girl, so everytime I have to work with her hair I tell her that big girls get this or that done with their hair, and she's a big girl now, so she has to have it done too.  It works every time.  She doesn't even need a show anymore, but we did put one on for the haircut.  No need to make a new experience harder than it needs to be with Naomi.

Enjoying her hair cut. 

Typical silly show watching behavior. 



The finished cut. 

The finished cut from the back.  We really should have taken a before picture.
I saved all of the clippings of her curls in a little plastic bag and have enjoyed looking at it.  I love her hair.  Then, as I was putting it away for safekeeping, it occured to me that, sometime in the foreseeable future,  those clippings of hair, or others like them will be all we have left to touch of her.  Because Batten's disease, horror that it is, is going to take the life of this beautiful, sweet, happy, innocent girl.  And then I a felt the lump in my throat, the hot tears in my eyes, the suffocating sensation in my chest and I wept.  This is what Batten's does even when the living is still good.  It wrings the joy and happiness out of so many ordinary things and makes them hard and painful.  I love my girl and most of the time I do a very good job of just not thinking about it, but days are long and in the 16 to 18 hours I spend awake most days it is very hard not to have those thoughts creep in and put a strangle hold on my heart.  My beautiful girl.