Two months post op

I'm sorry it has taken me so long to update here.  In classic Burror fashion, we've had way too much going on.

I'll go back to where I left off and try to fill in the gaps.  On May 22, Nathan and I woke up at 4:30am to get Tallulah to the hospital by 5:30am.  Her surgery to repair her lip and palate was scheduled for 7:30am.  Once we were checked in, and back in the "holding cell", we were told that the OR she was scheduled to be in was occupied with an emergency case.  While mildly annoying (goodbye extra 2 hours of sleep I'll never get back), part of me danced a little inside because it meant I got to spend more time with the face I fell in love with.

Night before surgery with big sisters

It's very hard to describe the conflicting feelings I had.  Of course, I understood that we signed up for this.  This was best for her in the long run.  She'll be grateful later.  It'll make her life smoother.   She won't be stared or pointed at anymore.  I knew all this.  However, the morning we took her in for surgery, in my head it all sounded like, "BLAH BLAH FREEKING BLAH".  I wanted to run like a lunatic from that place with my baby and keep her happy and perfect like she already was.  Honestly and truly, I loved the way she looked.  Her WHOLE FACE smiled when she smiled.  When I kissed her sweet baby mouth, I got a little front tooth action too.  I spent those last few hours with her trying to soak in every detail of a beautiful face I'd never see again.  The day before, I spent so much time behind the camera trying to capture my favorite faces.  So the morning of her surgery, I could barely bring myself to turn on the camera because I just wanted to be face to face for the short time we had left.  I do wish I had taken more pictures, but I value that time we had as I was able to tuck those memories, moments and sweet last kisses away in my soul the best I could.

Here's a good look at how the inside looked before:

***Warning:  A couple of the pics below may be a little unsettling.  They certainly aren't the worst, but they do capture the experience.

When we got back to recovery, Tallulah was awake and screaming.  She settled down when I got her back in my arms.  Her mouth was still oozing blood.  Her tongue was stitched to her cheek.  (They do this in case of emergency where they may have to intubate.  They want to be able to pull the tongue as far out of the way as possible to intubate without hurting the palate.)  She had in a pair of nose stents trying to shape her nose into its new position.  She was on a morphine injection every hour.  We were moved to the PICU.  She slept a good deal of the next 12 hours in my or Nathan's arms, but when she did wake up, she was hysterical.  She wanted the wires and IV off of her and thrashed her tongue around wondering why it wouldn't move.  With Evie, we learned the first 24 hours out of surgery is HARD.  So this was expected.

What wasn't expected was what happened in the following days.  We were in the hospital a total of 4 days/3 nights.  I should've written this sooner when my memory was fresher, but maybe it's best I didn't.  All I can say is that those days and nights were the hardest I've ever experienced.  She was scared and in pain.  She became addicted to the morphine, which we had to wean her off because of course, she had to be on oral pain meds to be released to go home.  The morphine withdrawals were something I never could've imagined.  She slept no more than 30 minutes at a time and would wake up crying, clawing, almost trying to get out of her own skin.  She ripped her arm restraints from pulling and thrashing so much.  I did manage to take a few photos during rare calm moments.

Once we got home, Tallulah was a little better, but still had a horrible time taking the pain meds.  She was on Hycet, a liquid vicodin, which is completely vile tasting and made her go ape.  She also loathed having her nostril stents taken out for cleaning and then reinserted.  So did I.  It was gut wrenching to have to keep holding her down and torturing her.  Sleep was almost nonexistent.  What's funny is that all along I was preparing for the hardest part to be that she was wearing arm restraints (called No-Nos) for 2 weeks.   While she was not their biggest fan, she was actually so much better with them than I could've imagined.  She'd even hold out her little arms for us to slip them on her after baths or wardrobe changes.  Mealtime with her "liquids only" diet was pretty depressing, but we managed.  The hardest part overall was trying to deal with everything while being SO incredibly sleep deprived.

About a week post op, my stomach took a free fall when I spotted a tiny tear at the back of her palate, starting at the uvula (hangy ball thing at the back of the throat).  I called the surgeon and he described it as "unfortunate" and we made an appointment to go see him a few days later.  A night or two before the appointment, her cleft affected nostril began bleeding pretty heavily during the night.  By morning, the stents would no longer stay in and the nostril had completely collapsed.  At the appointment, the surgeon verified that the soft palate had come completely undone and was not sure where it would stop unraveling.  He also said that we could ditch the stents since it was apparent they just were not going to work and were traumatizing her.  (She will need rhinoplasty in the future anyway, so while unfortunate, this is not the worst of it.)  We had to just watch and wait to see what would happen with the palate.

At this point, we are 8 weeks post op.  Tallulah's soft palate opened all the way, as well as a small portion of her hard palate at the back.  There is also a hole at the front of the hard palate near the teeth.  We really do not know if blame lies with the surgeon or if it was just really and truly "unfortunate".  Her surgeon had good ratings on every website I checked, and everyone I talked to raved about him.  He had a lot of experience closing clefts in older kids.  We also got a good vibe from him and were very confident before surgery.  His theory is that her cleft was so wide and she screamed so much post op, so this is what opened it up.  There's no way to tell, so I'm trying not to waste energy dwelling on "why".  It happened and all we can do is move forward.  We have an appointment with 2 new surgeons on August 15th and hope to get some more answers then.

But she will no doubt have to go through the surgery again to repair the palate, which is devastating and makes me absolutely sick to my stomach.  We have to wait at least 6 months to do this to give the tissue time to heal.  I am hoping to wait longer and do it when she is a little older, maybe 3 or 3 1/2 so we can explain things better to her.  The timeline will depend on how well her speech is developing with just use of the portion of the palate she has now.  If speech is not developing well, we'll have to go back sooner rather than later.

But enough of all that.  We will do what we have to do.  About 3 weeks post op, Tallulah FINALLY began sleeping a little better and she's now back to regular sleep patterns, THANK GOD.  She is still eating soft foods because I don't want to risk causing anymore damage there, but she doesn't seem to mind.  She's done amazingly well on all other accounts.  Strangely, I think the surgery experience was really bonding for us.  I was afraid she would hate me forever and be scared of me, but it's been the opposite.  Her attachment has strengthened and I'm so grateful for that.

Tallulah's able to say "hi", "eye" and "mama", but those are her only spoken words for now.  She certainly tries though and we are in the process of getting speech therapy going for her.  She knows about 30 signs so far, so communication has not been too difficult.

Tallulah turned 2 on July 1, necessitating having a little celebration for her with family and close friends.  It was tiny and sweet, just like her.

While I will always, always miss her first face, I love this sweet new face too.  It lights up any room she's in.

Surgery Eve

Tallulah continues to live her new life like she asked for it herself.

With her new sweet friend, Ava

My Mom gives me slurpees in a bottle.  What does yours do?

Beach baby

Sand is the missing sixth food group.

Sadly, tomorrow is the big day where she's probably going to wish she never knew any of us.  We will check into the hospital at 5:30am and surgery starts at 7:30am.  They said to expect at least 4 hours.  During this time, they will repair her palate, her lip and insert tubes in her ears as they are full of fluid.  Meanwhile, during the same time, I will be trying to be a grown up and not cry in the bathroom stall.  (For too long anyway.), I felt compelled to take as many pictures as I could of her with her sweet first little face and capture all my favorite expressions before they change forever.  I'll spare you most of them, but these were some of my favorites.

She's lucky I didn't eat her alive right then and there.

This is her "What's going on?" face when a flock of birds suddenly flew away.

This is her "Oh my god, I love doggies" face of wonder.

This is her jumping out from behind me, "Surprise!" face.

This is her "I just filled your pant leg with sand" face.

This face always means trouble is brewing.  In the bathtub, it could mean a Code Brown is on its way OR that she's about to dump a cup of water on the floor.

Just a cute, happy face.

This is the "I'm standing up in the tub.  Whatcha gonna do about it, lady?" face.

This is the "Proud to have enough hair for a mohawk" face.

This is the "No surgery will ever make me more beautiful than I am right now" face.

Last peaceful nap at home.  

With Evie's surgeries, I was worried about her living THROUGH them.  With Tallulah's surgery, I am worried about her living AFTER it.  I can't imagine what it will be like for her to wake up completely disoriented in a strange room, hooked to machines and IVs, with her arms bound in restraints and with a completely swollen face/mouth that feels entirely different from anything she's ever known.

We'd appreciate any thoughts or prayers for a successful surgery and an as "comfortable as they come" recovery.  Thanks for checking in.

Perfect

Hello die hard blog readers.  I apologize for my lack of updates, but I'm certain you forgive me already.

Tallulah is fantastic.  We are in that vaguely familiar stage of toddler bonding.  It's been three years since we last did this, so I'm trying to remember the groove I need to be in.  It is so very different from bonding with a newborn infant, which happens almost effortlessly in most cases.  She is at the age where, developmentally, she should be separating from us and exploring her world.  She is definitely doing that (OHMYGODISSHEDOINGTHAT), but she also desperately craves to form a bond.  She wants to be held most of the day.  When she doesn't want to be held, she wants to explore, but not far from me.  And she wants me to watch her all the time and give her feedback and words for everything she's doing.  She's doing so well, but I still sense a little bit of guarding on her end.  Given what she's been through, this is so normal.  This is ALL good stuff.  VERY good stuff.  We've dealt with the opposite situation: where the child doesn't even recognize a need for bonding or understand any of the basics of a human relationship.  I'll take this brand new cute, little shadow any day.

She is also co-sleeping.  This is something that (in my infinite first-time parent wisdom with Gianna) I swore I would never do.  But after doing it with Evie, I learned there is a real value for children adopted at this age.  When she first came to us, she slept so fitfully and woke multiple times per night.  Now, she still lodges her feet deep into crevices they shouldn't be in.  And she makes her little baby noises all night.  But anytime she does wake up enough to open her eyes, she sees me, smiles her beautiful smile and goes right back to sleep.  The physical closeness and her immediate access to us is extremely important at this point.  I haven't done any research on this, but I also think there is something to be said about co-sleeping with an adopted toddler and finally connecting on a primal level.  For example, when you give birth to a newborn, what do you do approximately 20,000 times an hour?  Smell them, right?  You take whiffs of their head, their hands, their baby toes...all day long.  When they first handed her to me, Tallulah did not smell like she belonged to me, like family.  She smelled like any other sweaty, busy little toddler I've ever met.  But, on Friday night, I climbed into bed next to her and smelled something new: MY baby.  I can only imagine she is experiencing something on the same level.  So does anyone need a gorgeous cherrywood crib soon?  Because we won't be needing it.  At times (ok, all the times), of course, it all does get exhausting, especially given the sheer number of other humans who live here.  I could tell you some stories that would require you to put on a pair of adult Depends first, and maybe someday I will.  At this point, I'll leave it at: God bless the pizza delivery man.

Overall, she's done so incredibly well.  She was doing so well that I took her down to my sister's house for Easter (9 hour car ride with LA traffic) and to Disneyland & California Adventure without Nathan.  (He used most of his vacation time for China and has to save the rest for her surgery.)  She had a blast.  She took to her new family members she met like she's been waiting for them her whole life, and them to her.  My 7 year old nephew, Logan, said, "She's so cute that you don't even need to fix her cleft lip."  We really are so lucky.

The unlucky part is that my camera died on the trip down, so I only have a couple cruddy iPhone shots to share.

Loves her funny Auntie Yaya

Cutest Easter Bunny Ever?  I think so too.

Meeting Grandma and Papa

First ride at Disney--the Teacups.  She liked it once it started.  

Her fave ride by far.  It was too hard to capture a good shot with my phone while on it, but she LOVES "It's a Small World".  (It happens to be her Mommy's favorite ride too--for lots of reasons!)

We met with her surgeon on April 24th and decided on a May 22nd date for the first big surgery.  After seeing her in person, he is confident he can close her lip and palate properly and cleanly in one surgery.  He's REALLY good.  We have a lot of confidence in him, so we were happy to hear that.

Ok, that's what I'm supposed to say.

But what I really want to say is:  I love my daughter just like she is right now.  Very selfishly, I want to keep her just the way she is.  Her wide, trusting smile might be the most moving, beautiful thing I've ever seen.  It seems so cruel that she is finally feeling safe and comfortable and happy, but soon she will have to go through something so scary and painful (all at our hands) without even understanding why.  I was getting choked up even driving to her appointment to meet the surgeon the other day.  I know this is all for her long term benefit and that we signed up for it, but after holding her precious little body in the flesh, I honestly want to say "Screw it" and move to a remote, deserted island where she can grow up living and looking just like she does now in total peace.  (Do you like run-on sentences?  Good.  Me too.)  The only problem with my perfect plan seems to be that Nathan may not be able to convince his company to transfer him to a remote, deserted island anytime soon.  So...

We will do what we must.  Her surgery will be at least 3-4 hours (of which I'll spare you the details).  Her surgeon, Dr. Menard, says that most surgeons release these patients to go home the next day.  But he likes to keep them 4-5 days to keep them on heavy pain meds because it is such a painful, intense surgery.   He likened the intensity of it to being pushed to the bottom of a 10 foot pool and noted that rising to the top and gaining her bearings will take some time.  He doesn't want her to do that while in pain.  I am very appreciative of his sensitivity in this regard.  She will go home after that in arm restraints for a few weeks to keep her from putting her hands/fingers near her lip or palate and possibly damaging the brand new reconstruction.

I know we're going to survive and it's all for the best.  I love that there are medical advancements available and ready for her.  But at the same time, I hate them for her.  If you met her, you'd know instantly she doesn't need anything else to be just perfect.

Home Life

Tomorrow will be a whole month that Tallulah has been with us.

All I have to say is, I'm in awe at how well she's doing.  When she was put in our arms a month ago, she had no reason to trust or love another adult ever again.  All the most important adults in her life up until that point had put her down.  And walked away.  She had lost everything.  We didn't speak her language.  We did not understand her wants or needs.  We didn't know what comforted her.  We didn't know what scared her.  God knows we didn't know how to feed her!  We'd been through this process twice before, but every time it is completely different because each child is their own little person with their own history, so honestly, we did not know how to be this little girl's parents.

BUT.

Tallulah mustered all the courage a one and a half year old could and let us in.  And step by step, we've learned slowly about each other and followed one another's cues.  She's had to learn how to listen to and interpret our new funny sounding words and intonations.  She's learned to come and go happily in the car, realizing that every time, she ended up staying with us and not being dropped at a new location with a new set of strangers.  She learned to read our cues in new situations: on walks, at the park, at the beach, at the store.  Her eyes still constantly seek reassurance that these experiences are ok and that she is going home with us at the end.  We've tried to learn her cues as well.  She's a complicated little thing, so it hasn't always been easy.  I'm sure if she could, she would say the same about us.  And through it all, I've had to learn how to accomplish the most basic household and personal hygienic tasks with a new almost 20 lb appendage on my hip and how not to rear end people just because I'm distracted by my terrified new baby screaming in the backseat of the car.

My mind keeps going back to that day in the Civil Affairs Office in Lanzhou when the woman from the orphanage (with whom she was very familiar, according to Sally) kept trying to take Tallulah from me to hold her.  This was less than 24 hours after she'd met us.  But she would not go with that woman, and cried silent tears in my arms at the prospect.  I want to believe that somehow, she knew we were there for her and would always be there for her.  Somehow she already knew that we loved her with all we had and was willing to take the chance that we always would.

Overall, since we've been home, she's been amazing.  There was jet lag to get over.  There are orphanage behaviors to work out.  There are food issues to identify fully.  There are many, many medical and therapeutic appointments in her present and future.  But for the most part, Tallulah has embraced her new life full of crazy people, nonstop action, and different environments.

We've learned that she loves: being held, her bottles, her sisters, music, being outside, accessories, sleeping in Mommy and Daddy's bed (she's a great sleeper, so trying not to complain here) and trying to pry open the baby gate to sneak into the magical land of Upstairs.  She does not love: diaper changes, doctors, needles, her crib or vegetables.

I've been horrible at posting updates here or on Facebook, so here are a couple million pictures documenting the 2.5 weeks we've been home.  Forgive me?

First few moments home: "These toys are ALL mine?!?!"

"You have sugar here, too?"

This girl LOVES her accessories and usually insists on sleeping in them.

What toddler doesn't love ink?

We had our first successful beach trip today.  It started out with, "I told you last week that I didn't like this place and what IS this stuff on my feet?"

First unsure, independent steps on the sand

"Ok, you were right.  This place IS a little bit awesome."

She's already learning to perfect the fake "Cheese". 

Can you even stand that swim cap?

She wore it all day, but I slipped it off for nap time.

By the way, here is the reaction when it was time to leave the beach today.

I know people mean well when they say, "She's so lucky to be here!", and while I appreciate the kind sentiment behind that, I wish more people would realize that it really is her family who possesses all the good luck.  What we have ever done without this little face with us is beyond me.  Almost exactly one year ago, before we even know she could be ours, I fell in love with this pair of eyes before they even left my computer screen.

Today, having traversed an ocean to China and back, I get to look into those very eyes every single day.  Who's lucky again?

We meet with her surgeon on April 24th and the whole craniofacial team again on May 7th.  We should have a surgery date set by the end of this month.  I'm trying to soak up every minute of the smile she has now, which I think is perfect.

Thanks for checking in on us.  Stay tuned.