Lilah: ten weeks post surgery

 Lilah's mom, Paige, has chronicled her daughter's journey to repair her Tessier Cleft. We have shared Lilah's story here, as the treatment has progressed. Lilah's final surgery was to repair her eye, complete a bone graft for her cleft and make some soft tissue changes. To see Lilah's journey unfold, be sure to read the first post, second post, third post and fourth post. And you can read Lilah's adoption story here.

It has been ten weeks since Lilah's eye surgery.



She has healed very well and all the doctors are very happy with her outcome. We have to massage her scars 3x per day, but her surgeon said that if it was going to pull down more, it would have by now. Massaging helps reduce the build up of scar tissue and makes the scar less visible.



Lilah has handled everything without complaint of any kind.



Lilah has many more surgeries in her future.

Most of them will be when she is around the age of six or seven. They will take a bone graft from her skull and mold it to fit into the cleft in her face. They may also do some fat injections to build up the right cheek under her eye. They will also attempt to fix her right nostril, by taking cartilage from her ear and using that to make a new nostril, but right now that cartilage is too soft to use. The muscle above her lip (where she had a cleft lip- that was fixed while she was still in China) bulges quite a bit, especially when sucking or smiling and they will try to redo that as well.

Some of these surgeries may be done at the same time, but since the plans always seem to change, who knows...



This eye surgery made a huge change in her appearance. It will never be perfect. When she smiles, that eye does not squint like her other eye and the cheek does not move in the same way as the left cheek. The right eye will always be a few millimeters lower than the left eye and she will never have that beautiful Asian eyelid crease that her left eye has.



But we think she is beautiful.



Lilah's optometrist is always very happy with Lilah's vision improvements. She needs to continue to wear her patch for a couple of hours a day, but the good news is that she may no longer need glasses when she reaches the age of seven or eight years. By then her brain should be retrained into using her right eye. The vision won't be perfect in her right eye, but the impairment should be minor enough that she won't need glasses. When she is older, she could even just wear a contact in that eye.



As a reminder... here is her before picture.

 

 

Reflections from my first time in "the waiting chair"

Welcome to Kristi, our newest contributing blogger. Kristi has three children adopted from China and her newest daughter, Darcy, joined their family in February. Kristi blogs about their family at Fireworks and Fireflies.

Wednesday of this past week I joined a club. A club I never would have imagined myself in just a few short years ago. The waiting chair club.



I'll have to be honest, I wasn't looking forward to being a member. Oh sure, I was all "cool hand Luke" until Tuesday. I'd casually toss out a request for friends to pray, but I was calm and relaxed.

But then "the day before surgery" came. As my baby girl's goniotomy (one potential pressure reliever for glaucoma) drew closer, I became less and less calm, cool and collected and more and more a bundle of raw nerves. I could hardly get my thoughts together enough to compose a post on my personal blog.

The more I thought about it, the more confused about my own emotions I became. On the one hand I knew that there were so many other mothers out there who had/were/will be facing soon much more serious and complicated surgery for their children. Open heart, spina bifida, and various transplants to name a few. So I began to feel guilty for being all nervous about the outcome of outpatient eye surgery for my Darcy.

But on the other hand I kept having flashbacks of Dr. F saying that while she promised to do her best, there are risks associated with any surgery. Risks which in this case include the possibility of permanent blindness in Darcy's "helper eye." Or remembering that paragraph about general anethesia that made my head spin and eyes tear up. If you've never seen "the paragraph" before, its the one that lists the possible negative effects of "going under." The one you have to sign right beside so they know you understand the risks associated. The one that includes the words "and in rare cases, death." In my mind I knew that it is very rare that there are such complications. But I also knew that out of all births, port wine stains only occur in an estimated 0.3% (according to the Vascular Birthmarks Foundation) AND (according to WebMD) only about 8% of people with facial port wine stains have Sturge Weber Syndrome. Leave it to me to let my mind wander...

So I was vacillating between guilt and fear. Honestly neither was a pretty destination for my thoughts.

The good news is that eventually I got a post up to let family and friends know that we were finally approaching a potential solution for Darcy's eyesight. And I requested prayer. I wasn't eloquent enough to get a list of specific things to pray about up, but I did get a general call out there. Pretty soon comments, emails, and phone calls started rolling in. About that time, peace returned to my soul.

Peace returned because I realized what the problem had been. I had wanted to take control of the situation. I wanted to be the one to make Darcy's eyesight better. I wanted to be the one to protect her and keep her safe. I wanted the surgery to be successful. I, I, I...


While it is of course natural ~ and I guess somewhat good ~ to have all those desires, the problem was that I was trying to take it all out of God's hands. After all, I've known since my first dream about a daughter named Darcy that He has been writing her story to become part of our family ever since she entered the waiting child list. I had to place my trust back in Him. Because if He brought us this far, He wasn't going to leave us now...

And Wednesday night in my exhaustion I nearly cried when I read emails that listed all the specific things people prayed about in the hours leading up to Darcy's surgery. Prayer requests I wanted to make on Tuesday but was unable due to my guilt and fear inner turmoil. Prayers requests that were offered ~ and this next part is HUGE here ~ by other Mamas on the other side of sitting in the waiting chair for the first time. Women in this circle who have gone before me and understand the fear. Prayers that were answered even though I was not able to communicate them.

Things like: Darcy ~ my kiddo who toddles down the hall most mornings straight from her bed saying, "Ma-ma, I eat cereal" on her way for her morning hug ~ would not be miserably hungry as she waited for surgery scheduled around 10:30. {She never even asked for as much as a drink from the time she woke up until she went back for surgery}

My peace of mind. I think that's enough said. {I caught up on a book club reading, went downstairs to check out their pediatric eyeglass frame options, and chatted calmly with Ian while we waited. And I was not anxious, at all. Well, okay, I did get a bit uneasy,when it was about an hour after Dr. F came out to talk to us and we still hadn't been called back to Darcy in recovery. But the recovery nurse eventually called me back to be with Darcy as she woke up because she had been in my shoes before.}

Her surgeon would be skilled. {We knew that Dr. F was a leader in pediatric glaucoma. Then Wednesday we met another family whose daughter also has Type II Sturge Weber who did extensive research on pediatric glaucoma surgeons and flew in from Chicago to have Dr. F do their daughter's surgery. This woman shared that Dr. F is considered the top in the country.}

Darcy would wake up gently. I had been warned that many kids come up swinging or very agitated. {She rolled over, said "Mama" and reached out her arms to me. No crying, no fear.}


Darcy would not experience nausea. {She downed four packets of graham crackers and 16 ounces of apple juice in recovery and then managed to eat a banana and an entire package of Ramen upon our arrival home.}

Darcy would have a quick recovery. {It was all we could do to keep her from playing rough with her older siblings that afternoon.}

Follow up medications would not be an issue. {She gets eyedrops ten times a day (Four different types, some four times, some two times ~ it's complicated enough that we have a daily calendar...) and calmly lays her head back each time we come at her with a bottle.}

These are just a few examples of things that people wrote in comments and emails that they prayed for. There are more.

And will be again. Next time.

Because even if this surgery was successful (we won't know for sure for about five more weeks) there will be the other half of the goniotomy. And if it wasn't successful there will be surgery to implant a tiny stint.

But what I must remember is that I wasn't in that chair on Wednesday alone. There were so many who have sat there before. Knowing just what this Mother's heart was feeling. Knowing just what my concerns were. And praying.

And most importantly, Darcy's Heavenly Father was listening.

While I can't say that I think I'd ever get to the point of liking the waiting chair, now that I'm on this side, I know that I can face it again.

And when you are the Mama getting ready for your first time in the waiting chair, know that you will make it too. Because when anxiety takes over and you don't know what to pray for, I'll be among the group of Mamas able to lift up specific prayers for you and your sweet child just like so many other mamas did for me.