Happy Thanksgiving!

This was a very special Thanksgiving for us because it was Annabelle's first Thanksgiving and our first Thanksgiving back in the U.S. after five years celebrating in Korea.

Ready to eat!  (Annabelle napped through approximately my first three sips of soup before requiring attention.)

I am thankful for big things:

• Being back in my home country, with my family.
• Having two amazing daughters.
• Annabelle's feeding tube and our ability to really feed her what she needs to grow.
• Having Keegan's support and help every day.
• Having my family's support and help so often.
• Having an amazing group of new friends in Williamsburg.
• Having an amazing group of cyber friends who care for children like Annabelle and understand firsthand the ins and outs of clinic visits, scary diagnoses, and feeding tubes.
• My parents moving to Williamsburg in just over a month.

I am thankful for small things:

• The chance to run in the Williamsburg Turkey Trot this morning, despite a killer side stitch that developed after the first mile.
• Pumpkin bread, green bean casserole, stuffing, and cranberry sauce.  We have some good cooks in our family!
• A walk around the neighborhood on a beautiful, chilly day.
• A fireplace to sit around with good cooks and the kids.
• Movie night with hot chocolate.
• Kids in bed, a cat in the lap, and a few free minutes to myself.
• The promise of three more days before the daily grind starts up again.

Now, off to raid the fridge for some leftovers...

Together again

Annabelle's Seven-month Update

Annabelle is seven months old!  It seems like we just got out of the NICU - time is definitely speeding past.

This was a big month for Annabelle since she had her surgery this month.  We have been slowly adjusting to life with a feeding tube again, but thank goodness we have it since Annabelle's oral feedings have been pretty poor lately.  She is getting plenty during the day as well as a long, continuous feed at night, which is wonderful since we don't have to wake up to feed her AND she is even getting more to eat than when we did get her up to feed her!

It's hard to say exactly where Annabelle is in her development now since we've been struggling with nutrition and feeding so much and since she has been recovering from her surgery for the past week or so.  But I am encouraged by what we've seen over the past few days.  It seems like since Annabelle has stopped spitting up and having "silent" reflux (that doesn't make it all the way up and out), she is much happier, more relaxed, and so much more interactive.

Oh, good one Foxy, that was hilarious!

She is reaching for toys more than ever before and has learned how to grab the sun shade on the top of her bouncy seat and pull it forward and back, an activity that she obviously enjoys and finds fascinating.  She is stronger and stronger at sitting supported and is quickly and easily rolling to her side after being on her back.  We've taken a break from the much-detested tummy time while the tube site heals.

Just chillin' with my sheep.

Annabelle still loves bathtime.  After her surgery we spent about a week filling the tub about halfway to the normal amount and then carefully sponging her to avoid getting the surgery wounds wet.  After our follow-up appointment on Wednesday, I got the go-ahead for regular baths, and you should have seen how excited and happy Annabelle was to be back in her full tub.  She and I have a game we play. If I tell her "Annabelle, show me how you splash!" she will smile devilishly and with much concentration, kick her little legs or slap her arms into the water.  She was very happy to do this again on Wednesday night in her real bath.  She loves having her face washed and is getting better during the dreaded getting-out-of-the-tub operation.

Annabelle's fascination with lights continues.

Mommy, schmommy, there's a sunlit window over there!

I was so happy that she was able to come with us to Christmas Town at Busch Gardens last night.  For those of you who haven't been, Busch Gardens is a huge theme park which at Christmas is decorated with elaborate light displays and tons of Christmas decorations.  I knew Annabelle would love to see the lights, and I think she really enjoyed riding in the stroller past the elaborate displays.

Annabelle also continues to "talk" all the time - our bevy of doctors and therapists always notice her constant commentary.  She has a few new sounds - when she is hungry she will cry with a "maaa-maaa" wail or a "waaa."  She particularly likes to complain indignantly when she is put through terrible medical procedures like being weighed or being laid down upon an exam table.  Even after such ordeals are over, she has to vent her frustrations for a while afterward, until she is satisfied that the message was received.

Annabelle loves having her arms moved to play patty-cake or "How big is Annabelle?"  She likes to "dance" when I hold her hands and move them around.

I think Annabelle's vision is continuing to improve.  She is much quicker to look for the source of a new voice or sound, and she is getting much better at tracking toys and people.  I've even noticed that she is looking at the pictures when I read to her.

I'm encouraged by how things are going post-surgery so far.  I'll let you know how we do in the coming weeks.

Home Again!

We left the hospital this afternoon around 1:00. Annabelle has been sleepy and content as long as she has a steady dose of Tylenol. I think she is still sore, but she is a trooper. Thank goodness for a Grandma willing to snuggle for hours so that Keegan and I could spend some time with Sophie, who didn't want either of us out of arm's reach all afternoon. Annabelle is having her first overnight tube feeding at home:  so far so good. Tomorrow is our first try back on our normal schedule with tube use thrown in. Wish us luck!

Second Day in the Hospital

Annabelle has been doing great!  The pain medications she's getting are doing their job because the main reasons she is fussy seem to be that she is hungry or just wants to be held. She is sleeping well and tolerating feeds through her tube just fine. Keegan and I got lots of instructions about how to use the tube and all its associated  equipment. Annabelle had a bath tonight and is quite the clean little princess with all her attendants bustling around to serve her. We should be going home tomorrow (Saturday), hopefully in the morning, though if there's paperwork involved, I wouldn't count on it!

Post-surgery Update

Annabelle came through her surgery fine and has been resting well all afternoon. She has been snuggling with both Mom and Dad and is very sleepy. She was able to drink some Pedialyte this evening. Tonight at 9 they will give her some formula through the tube. Too tired to write more now - it's been a long day!

Before:

After:

Big Day Tomorrow

It's been a long time since I've updated here.  Ever since Annabelle's crazy week of appointments in October, I've been feeling overwhelmed and anxious about her health and her future.  I could deal with that by writing blog posts asking for support or philosophical posts making the best of things.  Or I could deal with that by watching lots of TV and eating lots of junk food.  Guess which one I chose?  Sorry, dear readers.

Some of you may know that Annabelle is scheduled for her first surgery tomorrow morning (wonder if I could find a baby book that lists THAT first?).  We have to be in Richmond at 6 a.m., so I will not write much more now.  Her surgery will be at 8 a.m., and it will be to place her feeding tube and do another procedure to help with her reflux (it's called a Nissen fundoplication, if you're interested).  She should be finished with surgery around noon, and then the fun will begin as she recovers and we learn how to feed her using her fancy-schmancy new tube.  We should be able to go home on Saturday if all goes well.  I will try to post brief updates here as I can.

Wish us luck!

What's New with the Kids?

As I said last time, this week was a quiet one for Annabelle.  At Monday's speech therapy visit, she ate very poorly, as she has been doing all week.  Not sure why her feeding skills are so darn inconsistent.  Next Tuesday we'll have a visit with the G.I. clinic, so maybe they'll have some suggestions for the next step.  It may be time to get the feeding tube back.  I really don't want to do that, but it is really difficult to feed Annabelle her bottles these days, and her weight gain has really slowed.  She is now 10 pounds, 11 ounces, which is very small for her age.  She is still gaining, but at a slower and slower rate.  I am hopeful that if we could get her caloric intake consistent and give her a little break, perhaps she could regain some of the feeding skills she seems to have lost and we could get her weight gain and maybe even her development to accelerate a bit.  I also had this brainstorm and thought that probiotics might help with whatever is going on in Annabelle's gut.  She seems to get so uncomfortable every time she has a few days of drinking a higher volume.  It still seems like things aren't quite moving through right.  So I'll have a lot to discuss at the appointment next week.

Thursday's physical therapy visit was mostly me griping to our therapist about Annabelle's poor eating and Sophie playing super-cool games on the therapist's iPad.  Annabelle slept blissfully through the whole thing.

Annabelle has been more smiley.  She really enjoys having us put our faces close to hers, and being kissed and stroked on her cheeks and nose.  In fact, we found a new trick to get her to laugh:

She is also grabbing like crazy, especially my hair, her clothes, and my clothes.  Because her visual skills are so delayed, we are still working on reaching for and grasping toys.  But I think it is coming.  Tummy time remains a struggle, but with the right toys, her two-minute sessions are less fussy.

Next week we see the cranial clinic about her flat head, the G.I. doctor and dietician, the cardiologist, and the surgery team.  Hopefully we will be able to schedule the surgery to correct Annabelle's imperforate anus.  I am hoping that the surgery may help with her feeding and digestive issues as well.

Lest you think that I have nothing to report about Sophie, here are a few things that she's done to make me laugh and to swell with pride this week:

• She very excitedly told me that she was putting her crayons away in a special way and that I couldn't look until the next day.  When I saw them, I was impressed to see that she had put them in three right-side-up, three upside-down, three right-side-up, etc.  She said "I wanted to make a pattern, Mama!"  
• A current favorite pastime is collecting small objects from nature and making beds for them. So far we have had several pine fronds, a bean, and a leaf named Jennifer who was tragically lost at the post office before her bed could even be made.
• Another favorite is "Safety Belt," which involves Sophie putting a belt around her waist, me putting one on my head, and both of us holding a third belt while spinning at top speed around Sophie's room.  It's actually kind of fun.
• Either Keegan or I used the word insane in conversation.  Sophie's take was "Sane is a place where no one wants to go.  What do people do in Sane?"  
• This week Sophie danced to her first oompah band and learned how to do the funky chicken!  

Next week Grandma and Papa will be here, and I get to volunteer in Sophie's classroom again.  It's spider week!  I am so excited!  Here's hoping that the weather will be nicer, we'll get good news from all the doctors, and we'll all be over our dreadful colds.

First Weekly Annabelle Update

I know many readers are probably wondering what's new with Annabelle's health and all of her many doctor visits.  Things have quieted down a bit since she was being seen by a bazillion doctors in the NICU and since those first few months home.  But we are still seeing eight specialists, her regular pediatrician, and two therapists.  Yikes!  Seven of the eight specialists are in Richmond (about an hour away), with the other in Newport News (a half hour drive, if traffic isn't bad).  Thank goodness both therapists come to our house (a zero minute drive, hurrah!).

This week I took Annabelle to Richmond to see her neurologist.  He gave her a neurological exam, which she HATED, and referred us to the craniofacial clinic to have someone look at her flat head.  The neurological exam involved the doctor holding Annabelle in different positions to check her muscle strength, reflexes, and muscle control.  The doctor didn't see anything concerning this time.  It is clear that Annabelle is developmentally delayed, but we expected that, so it was no surprise.  She has good head control but needs more time on her tummy to learn rolling and strengthen the muscles needed for sitting.  Unfortunately, she still despises tummy time.  At our last neurology appointment in August, the doctor mentioned that Annabelle's head is flatter on the right side than on the left, a condition called plagiocephaly.  A lot of kids get this now that they recommend kids sleep on their backs.  The pressure from constantly laying on the skull combined with the softness and flexibility of baby skull bones causes a flat spot.  It can be corrected simply by reducing the amount of time that pressure is on the flat spot (we hope!) and also by wearing a special helmet (we hope not!) or, as a last resort, by surgery.  The neurologist said it was a good idea to visit the craniofacial clinic now before things got any worse so that we could hopefully get away with less intervention but still keep an eye on the problem.  I am not thrilled about having another doctor to visit in Richmond, but I grudgingly agree with the neurologist's thinking.

On Wednesday, Annabelle's speech therapist came to work with her on her feeding skills.  Annabelle drinks her bottle inefficiently and noisily.  Her guzzling noises are cute, but they indicate that she is not getting a good seal on the nipple and is therefore swallowing more air and working harder to get the milk.  This week Annabelle was asleep at her appointed time, so the therapist gave me some more mouth exercises to do to help Annabelle's tongue and jaw.  I was skeptical at first that these exercises would make much difference, but Annabelle is eating more efficiently and has been smiling so much more that now I think the exercises have really helped.  Wanna see?

So, three times a day I stretch and gently rub Annabelle's lips and gums and encourage her to chew on my finger.  I hope that she'll continue to get stronger and more coordinated because introducing solid food is not far off, and I want her to be ready!

The biggest issue with Annabelle this week was her eating.  She is currently on a super-fancy (and expensive) formula that is made up of simple amino acids and basically requires no digestion.  We mix that with harder-to-digest rice cereal in order to increase the number of calories she gets per ounce.  She needs extra calories both because she isn't able to drink as much volume as she should and because of her heart defect, which means that she requires extra energy to keep things running.  Getting the ideal proportion of rice cereal has been tricky.  Too little, and she's not gaining enough weight.  Too much, and her system gets backed up and she stops eating well.  In the middle of the week she wasn't eating well at all, and I was so worried.  I really don't want her to have to go back on a feeding tube, so it's very important that she continue to make progress with how much weight she's gaining and how much she can take from the bottle each day.  To have a few days of poor appetite is very, very stressful!  Fortunately, cutting back on the amount of rice cereal we mix into the formula has really seemed to help, and the past few days have been record-breakers for Annabelle!  I hope she'll show a good weight gain next week.

Tummy time is increasingly important, both for developing the ability to roll over and to give Annabelle a position that puts no pressure on her flat head.  I have been trying to get her to lie on her tummy, on top of the Boppy pillow for extra propping, for just two minutes a day.  She is not happy.

Tummy time is for the birds!

But today I discovered that if I let her look at Sophie's angel nightlight while she's on her tummy, she is at least quiet and interested.  She loves lights, so I'm glad that we can make use of her moth-like attraction.

This coming week is pretty quiet - just a visit from her speech therapist on Monday and the physical therapist (who works with Annabelle's vision and holds my hand a lot, too) on Thursday.  I will try to update again on all that next weekend.

A Trip to the Orchard

This weekend we went to visit Nana and Granddude in Charlottesville.  Part of the reason for our visit was my longing for fall activities like apple picking and pumpkin picking.  Charlottesville did not disappoint!  We ended up going to Chiles Peach Orchard in Crozet because they were having a fall festival with lots of activities for the kids.  Annabelle sorely needed a good nap, so we left her with Daddy at home, and Nana, Granddude, and I took Sophie to the orchard.  

First up was face painting!

Next was donut decorating with very watery icing and sprinkles!

Sophie was very serious about pumpkin painting.

At last, the pumpkin patch!

Sophie picks out her favorite.

So happy together.

By the time we were finished with all that, we decided there was not time for picking apples!  We'll have to do that another time.  Any disappointment we might have felt, though, was cured by the purchase of plenty of cider and apple cider donuts.  I could eat those all day!  We can now add a trip to the pumpkin patch to our list of things we longed for in Korea and have now indulged in back in the U.S.

A Great Day

Usually I dread Thursdays.  Our sainted babysitter has a busy class schedule on Tuesdays and Thursdays, so she can't come to help out, and Sophie doesn't have school.  The day stretches out quite long, especially when Annabelle doesn't nap well and Sophie has trouble entertaining herself while I keep Annabelle happy (i.e. in my arms).  Today, however, was a pleasant surprise.

In the morning, the girls and I went to a play date with other moms and kids from Sophie's class.  There were six little girls and six moms (and one grandma!) at the group today.  I was a little nervous because although I had talked to a couple of the moms and to Sophie's teacher about Annabelle's condition, I hadn't told everyone.  I was very conscious of Annabelle's small size and funny stare - surely everyone could tell that she was not an average five-month-old.  So I did my best to be honest and matter-of-fact about everything.  And it wasn't so scary.  Everyone was so kind and supportive that I was afraid I would start tearing up.  And other moms shared stories about difficult pregnancies and breastfeeding troubles and the strain of caring for a newborn, and I felt so relieved to have everything out in the open.  And, aside from all that, I really had a great time talking to everyone.  Sophie seemed a bit shy and had a hard time mixing with the larger group of kids, but slowly came out of her shell as the group dwindled.  She didn't want to leave in the end.  Annabelle drank her bottle, slept briefly, and enjoyed the beautiful weather while we played in the backyard.

In the afternoon, we had a visit from our early intervention case manager and physical therapist, Stephanie.  Annabelle slept for the first half of the visit, so we had a chance to talk about her development.  Stephanie brought an assessment tool to look at what skills Annabelle has, and to my surprise, she has quite a few three and four month skills.  We just need to work with her to get her on her tummy more and to start standing her up more to see whether she'll push back with her legs.  I got Annabelle up (it is so unfair to have to wake a sleeping baby!), and we weighed her.  She has gained another three ounces this week - not quite as much as we'd like her to gain, but a gain nonetheless.  We are going to add a bit more rice cereal to her bottles and hope that those extra calories will do the trick.  But the best part of the afternoon was the brief playtime we had with Stephanie after the weight check.  I watched Annabelle follow a toy with her eyes, and even reach out with her hand to touch the toy.  I was amazed!  I think because I don't have a lot of time for playtime and because I am not an early development specialist I have not been able to see Annabelle demonstrate those skills so clearly.  I was so proud of her!  I feel so much more hopeful about her vision.

All in all, not a bad Thursday!  And tomorrow is Friday, a school day and a date night.  And this weekend we'll visit Nana and Granddude and take Sophie and Annabelle to the apple orchard for the first time!  Nice to have a series of good days planned.

Annabelle's Five-month Update

Annabelle is five months old today!  In some ways, I feel like she is barely changing at all.  I try not to think about what "normal" children do at five months or what Sophie was doing at five months, but it's hard not to.  No rolling over, no sitting, still struggling with visual processing, still fussy and disorganized when she takes her bottles, still teeny tiny and gaining weight slowly.  But that is the negative way to look at things.  It is there in my mind all the time, and I want to be honest about that.  For the rest of this post, though, I will be positive about Annabelle's new skills, no matter how incremental her progress.

When I flip my negative thinking on its head, I can see how far we've come from our first month in the NICU.  Annabelle has doubled her birth weight (She is 10 pounds, 3 ounces as of the last check, nearly a week ago), and her crazy hair has lightened up and gotten even crazier as it grows.  She is finally on a formula/supplement combination that is getting her extra calories and seems to be agreeing with her.  She is getting stronger and more organized with her feeding each week, meaning that she is sucking more efficiently and can eat slightly more formula in slightly less time.  She is less fussy than she was a month ago, and she is content to sit in the Baby Bjorn when we are out and about.  We can go to the library!  And the grocery store!  Without comments from other shoppers like, "She's not too happy, is she?"  (Seriously?  NOT HELPFUL!)

The best thing that's happening is that Annabelle is starting to smile!  We saw sleep smiles a while ago, and certainly Annabelle has had her "happy face," but now she is really starting to have recognizable smiles.  Most of them are aimed at her big sister.  Not surprising.  Who wouldn't love Sophie?  Also, despite her insistence on tickling and ruffling Annabelle's hair, she is the only one who doesn't subject poor Annabelle to agonizing torture like combing her hair or applying anti-yeast cream to her neck folds.  She is also the only one who has only a dim understanding of Annabelle's limitations and loves her without agonizing over her future.  What a lucky pair, and what a special relationship they will have as they grow!

Annabelle is beginning to grab things and bring them to her mouth.  I think her vision delays are making grabbing for toys (or playing with toys at all) more difficult, but she is taking this step nonetheless.  Every time I hold her up to my shoulder while my hair is down, she grabs a handful, and recently, she has begun trying to explore what she's grabbed by putting it in her mouth.  She also frequently grabs her clothes and my clothes.  To Sophie's delight, she also grabs Sophie's fingers and clothes.   I'm sure she'd grab Sophie's hair if she could get her little fingers on it.  Not sure whether THAT would delight Sophie.

Annabelle has great head control and will push herself up on her arms for a very short time when she does tummy time on my chest.  She is beginning to sit with lots of support, either in our laps or in the Bumbo.

Annabelle loves listening to music and listening to me sing.  Since I love singing but have a weak voice and poor ear, I am very happy to add to my audience of willing listeners, which includes only one other person:  Sophie.  She can have a hard time settling herself, but she almost always responds to music, light, and the joy of being outdoors.  She doesn't like to sit still but is very content being carried around.  So we try to fill Annabelle's days with eating, sleeping, and constant motion.  This suits Sophie rather well, as she also enjoys constant motion.  Annabelle loves the bath and smiles and splashes almost the whole time she is in the tub.  Getting out is a miserable experience, though.

Happy Five Months, Annabelle.  We love you more and more as we get to know you.  We hope your sixth month will bring more progress, no matter how slow.

Don't Ever Grow Up

I'll be the first to admit it:  the newborn stage of childhood is not my favorite as a parent.  When other moms talk about baby snuggles and that baby smell and those adorable newborn sounds, I think "WHAT?  You mean not being able to put the baby down, the scent of half-digested, regurgitated milk, and screeches and incessant wailing?"  With two children now, I've waited breathlessly for those anxious, sleepless, terrifying first few months to pass.  I know this is not a culturally acceptable thing to say, but there it is.

I fell head over heels in love with Sophie when she was around seven months old.  Not that I didn't love her before then, of course, but around that time all of the cliches of motherhood finally clicked for me.  I would rather die than see anyone hurt my child.  I was content just staring at her and marveling at how perfect she was.  After twelve straight hours of holding, comforting, feeding, changing, bathing, and entertaining Sophie, I would put her to bed and spend another hour staring at her pictures on my computer. And things have just gotten better from there.  I love how Sophie's language allows her to show me more and more how she sees the world.  I love how her physical abilities allow us to do so much more together - swimming, climbing, hiking, playing new games.  I love having a child who is potty trained!  I love watching her try new foods and read new books and sing new songs.  You can keep the newborn stage, I will take the preschool years, willfulness, potty humor, excruciatingly boring repetitive play and all.

Anyway, a few nights ago, I found myself in the kitchen holding Sophie in an extremely snuggly cuddle and saying passionately, "Don't grow up anymore!  Stay this small forever!"  To which Sophie replied, in a tone dripping with condescension:  "Sorry, Mom.  I have to grow up.  I'm eating my breakfast and lunch and dinner!"  Now she requests this game:  "Mommy, tell me not to grow up!"  She apparently enjoys shooting me down with a withering tone.  Perhaps I will not be so enamored of this during the teenage years.  But now, it is just cute.  I'm telling you, this is a great time for parenthood.

Here are a few things about three-year-old Sophie that I will miss when she inevitably does grow up:

1. Her wonderful voice - "falingmo" (flamingo), "pollilog" (polliwog), her hilarious use of adverbs like "actually" and "even."
2. How she tells secrets so quietly that it's not possible to hear them, only to feel her breath on your ear.
3. How she sometimes asks to walk her stuffed animal dog, even though that means wrapping him in a plastic bag to keep him from getting totally destroyed and then dragging him along behind her.  
4. Her bonecrusher hugs.
5. When she tells me "Mommy, when you wear your hair in a ponytail you look like Ellen, but when you don't you look like Mommy."
6. How she believed Daddy tonight when he told her that "finding treasure in the cat's sandbox" was a tremendously fun game to play.
7. How she takes care of me when I'm sad (and also how she expects that proffering a tissue will solve any sadness in just a few seconds).
8. How every night at bedtime when I ask her what was the favorite part of her day, she says it was being with me.

Oh, Sophie, I hope that even when you outgrow your baby voice and your baby gullibility, you will retain your sweetness, your joy, and your love for your Mama.

Sophie the frog demonstrates how frogs drink their water.

Nature vs. Nurture

When we were in college, my roommate and best friend Rebecca and I took a lot of psychology classes. We were struck by how often the phrase "nature vs. nurture" appeared in our textbooks, and, being longtime nerds attending the College of William and Mary, the phrase soon became a frequent source of merriment for us. "Psst," one of us would hiss, highlighter poised over some weighty tome, "here it is again!  Do you think it's nature or nurture?"  Either eye rolling or hilarity would ensue. 

I've been thinking a lot about our old catchphrase lately. Back in March our second child, Annabelle, was diagnosed prenatally with a rare genetic disorder. The last few months of my pregnancy were filled with pain and uncertainty. Because Annabelle's disorder is so rare, no one could tell us what it would mean for her.  My mind reeled with visions of a vegetable-child, unable to walk or communicate in any way, stuck in a wheelchair with a blank stare.  My heart hoped for a child who was only a "little bit off."  I knew that reality would most likely fall somewhere in the middle, but I still searched desperately for any information that might help us anticipate what our daughter would be like.  

Finally I took the time to really look at the homepage for Unique, a group in the U.K. that provides support and information for children and families dealing with rare genetic disorders.  While reading about the possible consequences of my yet-unborn baby's genetic condition, I began to feel more and more scared.  Learning disabilities, health problems, difficulties with walking, talking, seizures.  Then I came across this sentence:  

There are many other factors besides a person's chromosomal disorder that affect how they develop, for example, the unique mixture of genes on their other normal chromosomes, the environment in which they are raised and so forth.

There it was again:  nature vs. nurture.  What causes us to be who we are?  Is it all in our genes, or can the environment we live in, the way we are raised, the opportunities we have for growth and new experiences really make a difference?  Of course, the reason Rebecca and I always laughed or rolled our eyes when we read about the nature vs. nurture debate was that the answer is always "some of both."  We are not defined solely by our genes, nor entirely by our environment.  Both work together to make us who we are.  And on the Unique website I found reason to be hopeful for my baby's future:  she would not be defined solely by her defective genes.  Both her other, non-affected, genes and the way we would choose to raise her could affect her development, her abilities, her potential.  Finally, some sense of optimism and even of control.  Yes, we passed on some troubles to our child.  But we also passed on her father's physical abilities and sociability, her mother's facility with languages, her grandmother's kindness, her great-grandmother's artistic streak, her grandfather's talent for science, her granddude's energy and attention to detail, her nana's talents in the kitchen.  And we had the opportunity to give her love, affection, discipline, and a variety of wonderful experiences.  We had the chance to make a real difference in her life by guiding her in her discovery of the world, however limited her abilities might be.  

After finding this new source of comfort, an idea for our baby's name came to me.  Our older daughter, Sophie, has the middle name Joy.  I gave her that name because it sounds pretty and because it is her grandmother's middle name and my best friend's middle name.  But when I chose it I had no idea that Sophie would be such a joyful child.  The name fit so well.  So we decided her sister should have a similar middle name.  We had been thinking of Grace, but after we learned about the baby's genetic condition, we thought it wasn't fair to give her a name she might never live up to.  So instead, we chose Hope.  Several weeks later, our baby girl arrived.  And now we have Annabelle Hope.  Everyday we think about her future, strive to make her always feel loved and cared for, and hang onto the hope that nature and nurture will combine to help her reach her fullest potential.