Ug

Just an update.  Lily is not 5 days post surgery.  She seems to be doing well.  She is off pain meds (not even Tylenol any more), wanting to play and jump - giving me near heart-attacks as I am terrified she will land on her face and split her new lip!  She continues to be able to eat bite-sized stuff and is talking nearly as much as ever.

We had a sad moment the other day when brother was pretending to take a picture of her with her Hello Kitty camera, and she said, "I can't smile." :-(

It's true.  Her top lip is tight and tiny, with a strip of sutures down the middle.  So today with another photo opportunity - instead of asking her to say, "Cheese," I asked her to say, "Hi Daddy!" and her eyes still smiled :-).

I have been very emotional and having a rather hard time.

Leading up to the surgery I was very anxious about the day going well.  Getting it over with.  Hoping the procedure would go well and smoothly.  I did not think about how things would be afterwards.  I did not anticipate missing her old smile, feeling upset and terrible about subjecting my daughter to surgery to "fix" her when all who know her think and believe she is gorgeous, fearful and dreading the future surgeries she will have to endure.  Yeah, I have been feeling pretty yukky.

Many people ask if this will be her last surgery.  No, unfortunately not.  There will be at least 3 more surgeries that I know of - and perhaps more if things need to be further revised or corrected.  Lily has a fistula in her palate that will need to be closed probably sometime in the next year.  This will hopefully help her with her speech.  At some point, she will need to have her nose shaped as kids born with bilateral complete cleft lip are missing the columella (the piece between your nostrils that gives your nose some height at its tip).  Then when she is 10 or so, she will need to have bone grafted in to her cleft gumline.

The surgery this time has brought up a slew of other thoughts.  It is hard to explain to a 3 year old about surgery.  Hard to explain about cleft lip and palate.  It could bring up questions about her birth, adoption and her first parents.  Which I don't want to hide - but not sure how to explain.  Up to this point (and perhaps still), Lily did not know that she looks a little different from other people.  It has been wonderful!  I do not want her to feel that she has a "defect."

I pray for grace and wisdom to answer these questions at her level when the time comes.

Update - Lily's Lip Revision Surgery

Hi all, I am just going to c & p my prayer letter here.  I had a post typed out on my phone and for some reason it would not publish.  I wanted to include some photos, but since the move I have not been able to locate our cable to download/upload photos.  Forgive the hasty post, but I know some of you aren't on instagram and have been waiting for an update :-).

Hi all,

Thank you all for your prayers!  We felt all of you standing with us yesterday :-).  

Praise the Lord - everything went smoothly.  Even though our surgery was delayed by almost 2 hours, Lily did not once ask for food. . . and was happy and interactive.  She was apprehensive about putting on her special tiger pajamas (AKA hospital gown) and I don't blame her.  I wanted to cry when I saw the tiny gurneys in the pre-op room.  Lily actually took some oral sedative (versed) and then fell asleep before she was even rolled into the OR.  So everything went better than anticipated pre-op.

The surgery lasted over 2 hours.  The plastic surgeon at Children's had to recreate the "defect" before revising her lip.  Basically - undo everything that the surgeon in China did.  So in the OR, she actually had a complete bilateral cleft lip again - before Dr. Urata stitched everything up from the inside out (all the upper lip muscles).  Unbelievable!  I can see why it took so long.  I can sew cloth - but cannot imagine sewing muscle and skin!

Anyway, we got called up to see her and she was quiet and groggy.  After some time, she was nauseous and threw up a few times - blood and saliva, and actually pooped on me too during the second wave :-).  I was never so happy to be pooped and vomited on.  I was so happy to see her and hold her in my arms again!  

She has to wear these nasal stents (think straws) in her nostrils for (hopefully) 4 weeks.  Although the surgeon did not work on her nose, the stents help hold everything in place while the upper lip heals.  Her upper lip is smaller now, and tiny and tight.  Dr. Urata says that it will stretch out over time.  She has no stitches that need to be removed - they are all dissolvable, and the top layer of skin is held together by Dermabond (skin glue).  

Lily is handling everything pretty well so far.  She knows she has an "owie" on her upper lip.  She slept well last night.  The thing that will be hard is keeping her away from "contact sports" for a few weeks.  Because as all of you know - almost everything is a contact sport to toddlers!!!  She has been eating some soft foods and talking up a storm (all the while trying to keep her upper lip still).  

We are so thankful for all of your support!!!  And I am so thankful to the Lord for His tender care and strength :-).  

Sorry I stopped updating on Instagram last night - I ran out of batteries on my phone.

Oh - please think of Aaron.  He is a little frightened by the whole thing and Lily's appearance with the crust and nasal stents.  In my anxiety leading up to the surgery, I did not spend adequate time prepping him for this.  

Love to all,

Chenning

Lip Revision Surgery Today

Hi all -it's been a long time. 

Photo from last night - a pre-bedtime run to Baskin Robbins as Lily has lip revision surgery today at CHLA. Surgery not until 2:00pm, but no food since midnight!  

We stocked up on Popsicles and juice since she can drink clear liquids until 11;00am. Oh I hate the fasting part - I dread that it will be tough for Lily. 

Please keep her in your prayers. Her plastic surgeon feels this is a necessary procedure to even out her upper lip. I don't know what to expect - but have received many encouraging words and reminders of the Lord's care and faithfulness from scripture and friends and family. 

I will update when I can. You can also follow me on instagram which has kind of become a micro-blog of our family. The kids right now are eating Popsicles for breakfast in solidarity of Lily's clear liquid diet this morning!