For the past six months Esther has been growing a “bubble” on her head. It’s not actually a bubble but it sure looks like one and to some I’m sure it appears as fragile as a bubble. She actually has a tissue expander just under the surface of her skin.
I share more about tissue expanders in this post but for the most part think of it like a plastic bag under the skin on her forehead and for the past six months we have done injection after injection AT HOME helping the “bubble” to grow and in return stretch her skin. Much like a pregnant woman’s tummy.
Injections are done at home. You know, just your typical American family letting their two girls watch shows on the laptop while the parents inject the oldest daughter’s head with saline. Nothing out of the ordinary here.
As strange as it sounds both girls actually beg for us to do injections. Why? Because they get to watch special episodes off of Amazon or YouTube. It’s a treat for them and because Esther gets Lidocaine on her port about 30 minutes before each injection she actually doesn’t feel a thing.
Michael Luke does each injection. We’ve done so many now that we can get them done in about 10 minutes. Just consider us pros. My job, the most important job, is to hold Esther’s hand for emotional support.
She doesn’t realize she doesn’t need it but I enjoy the opportunity to be needed and to sit with the girls for a few minutes. Plus, let’s face it. I just wasn’t cut out for the medical field and would probably pass out if I was the one giving the injection!
Last night was hopefully our last injection we will ever do. In a way it was bitter sweet. Strange, right? This coming Monday Esther will have the tissue expander removed and her doctor will use all the skin that we have stretched out to replace her scarred tissue and match her hairline on the other side of her face.
As in your face as the “bubble” is to most people we honestly hardly notice it.
God blesses you with the ability to see the person for who they truly are. To see beauty in her face… even with a lump the size of an orange on her forehead. He makes everything beautiful. I’m excited for her surgery though and look forward to seeing her face transform even more as we get one step closer to the finished masterpiece.
Please join us in praying for Esther over the next several days. She is an extremely brave little girl but even the bravest get scared. Right now her stress level is extremely high and the smallest thing can send her into a panic attack. To help support her we are back to applying Tranquil several times a day and talking about the good things like ice cream and Disney movies after surgery.
Late last month we traveled back to Birmingham for a few days.
While we were there we were able to reconnect with some great friends and support (un)adopted (a ministry of our adoption agency) by running in their annual race R(un) for One.
Michael Luke was able to do some networking on and off campus at UAB and I was able to attend a really great seminar on using essential oils to support your hormones and soft tissue. We didn’t plan a trip just to run around town like mad men for a week though. All these events just happened to fall within the days we had blocked out for Esther to have another surgery.
For those of you that have been following Color Transformed Family for a while you may remember last year when she had a series of surgeries. If not, you can go back and read about her “special eye’ here and what a brave girl she was with her first surgery and throughout the following months here and here.
When we went back to her ocular plastic surgeon this year we really hoped to set a date for the bone reconstruction of Esther’s series of surgeries. Instead, we found out that Dr. Ray had moved to Virginia to work in an under served area. We loved Dr. Ray as a doctor but we weren’t terribly bummed that he was gone because now we get to see Dr. Grant. Dr. Grant is who Dr. Ray trained under and he has even more experience with Asian eye reconstruction because he trained in Seattle were thee is a larger Asian population.
Dr. Grant was pleased with the progress that was made last year but felt before moving onto bone reconstruction we needed to do one more tissue expander. The purpose of the expanders is to stretch her good smooth skin so that the scarred tissue can be removed and only beautiful healthy skin remain. We also found out that he wants to wait on the bone reconstruction surgery until she gets a little older and her front baby teeth fall out. Her permanent teeth have already formed and he wants to wait until they drop down so that he will have more room around the eye socket to work with.
So while finding out we have to wait a little longer was a bit of bummer it’s still nice to know that we can work to get her even more smooth skin on that beautiful face of her. I do pray that all these surgeries are over and done with before her peers start start to notice her deformity and then use that to make fun of her. She’s still at that magical age right now where most children don’t notice and if they do they just point out something is different and move on. It’s like saying, “She’s wearing a yellow shirt and I have on a red one.” They just verbalize the difference. Her self confidence and self-esteem are still strong and she sees her self as beautiful (because she is) and I don’t want that to change). That’s one reason why I make an effort every day to let her know how beautiful she is and even more how beautiful she is on the inside because that’s what really matters. Mom’s this is so crucial. We have to pour into our children before the world begins to rob them of their confidence.
Just like last year we prepped Esther mentally for her upcoming surgery. I know each child is different but she loves facts and wants to know every detail so we don’t hide anything from her. We run through the series of events over and over so that she can process what awaits her. For the most part she took everything in stride and like last year looked forward to getting her own bed, watching an endless supply of Disney, and having breakfast and juice delivered to her room. Seriously, this girl loves to be waited on hand and foot!
About a week before the surgery it became evident that deep down she was nervous. We began to up the amount of times a day we applied the essential oil blend Tranquil to her. At one point she was even waking up around five times a night screaming and crying. She was never truly awake so just going in her room and touching her was enough to calm her. My heart broke for her in these moments because I knew then how brave she was truly trying to be.
Occasionally, she would tell us that she was nervous but we were always quick to reassure her that everything would be ok and in the end there would be Disney Channel and juice. Even the morning of her surgery she woke up excited to Children’s of Alabama. The previous year when she donned one of her fanciest outfits but this time she was fine with leaving her pajamas on and enjoying the relaxing morning.
Noah and I dropped Michael Luke and Esther off at the hospital and then I drove Noah across town to have breakfast at one of our favorite spots, Magic Muffins.
Next, we made a quick drive by of our old place and then I dropped her off at a friends house before returning to the hospital.
During this time Esther just relaxed and enjoyed the morning’s cartoons. By the time I arrived they had even given her an iPad to play with.
She was the picture of calm and collected.
But like I mentioned earlier I knew how she really felt and everyone else was about to find out.
They came to wheel her away for surgery and she barely looked up because she was playing some “decorate your princess” game on the iPad. But before we made it to the “bubble wall”, this wall with air bubbles and lights in it, to say goodbye she screamed out “Mommy, I’m getting a little scared.” So I rushed up to walk beside her and I soon as I did she grabbed on and started trying to jump out of the moving hospital bed. When she’s scared and upset she’s a strong little girl and there was no getting her back in that bed. I was trying my best not to cry too and just about lost it when the nurse took her from my arms and carried her away from us.
Her body remembers. It remembers everything about her last three surgeries and it remembers “the day she didn’t feel like smiling”. Her body knows that the next couple of months just might be difficult and a little painful and honestly who can blame her for wanting to “jump ship”.
The surgery went well and this time they even included a skin graft. Dr. Grant took a sliver of skin from behind her left ear and moved it to her left eyelid so that it can close more. This offers her eye more protections, reduces the amount of times a day we need to apply eye gel and eye drops, and preps her eye for some of the upcoming work.
(Two Days After Surgery)
Children and their resiliency amaze me! Once again all she needed was Tylenol with Codeine one time after surgery. One time! I’m sure it would take a lot more for me. We supported her healthy skin afterwards with Lavender, used my Sandalwood Moisture Cream on her neck where the medical tape had been, and applied DiGize to her tummy to ease feelings of nausea.
I spent the night with her and enjoyed some special cuddling time with her and somehow managed to get a decent night’s sleep in the hospital. The next morning we were given permission to discharge before 7:00 but Esther insisted on staying and eating her breakfast first. And who can blame her… I had ordered her a feast!
In a few weeks we will start the injections again and they will follow almost the same schedule as last year. Dr. Grant will give her her first injection and then Michael Luke and I will do most of the others at home ourselves. You know… just your normal family sitting around watching tv while poking a needle in their daughter’s head. It’s true! Barney was the best distraction for her injections last year. She and Noah looked forward to those nights because they were allowed to pick an episode of Barney to watch. I’m not a fan of Barney and could really do without those songs but if I worlds again this year I’ll endure it.
Like last year, I more than likely won’t share a lot about our experience as it happens but you can expect to continue seeing her beautiful face in my pictures. Thank you everyone for all your support and prayers.
I shared back in September that Esther had had a surgery on her face to place tissue expanders around her eye to help “grow new skin. I also shared that I was the one most nervous about this new adventure.
I was nervous for a lot of reasons but mainly because I just didn’t know what it would be like to watch two “bubbles” grow on Esther’s head over the next couple of months.
On top of that I couldn’t even imagine what it would be like to give her the injections for them ourselves at home. (More on that in a minute.)
Back to the growing bubbles. It’s really not that big of a deal and because I was with her day in and day out I seriously hardly ever noticed them. It’s hard to see the bubbles when all you see is her absolute beauty. You know you’ve got natural beauty when you can rock some tissue expanders on your face! Just sayin’.
Now, back to the injections. Yeah, we did them at home. Well, actually ML did. I held her hand… that part is important too though!
After a week or two of observing and training, Dr. Ray felt like Michael Luke could handle doing the injections at home. From the outsider looking in I’m sure we looked like some pretty cruel parents… or either weird scientist parents. Two to three times a week we would numb the ports hidden under her scalp and then distract both girls with a little Barney while they sat side by side on a bench.
They would zone out watching tv while Michael Luke would cleanse the spot and then stick a needle into her port and inject a few cc’s of saline each time. Most of the times the girls didn’t even notice… at least not until the end. Sometimes, Noah would look over and ask what was going on. But what child wouldn’t if they saw there parents doing that to their sibling. We liked to to do the injections at nighttime so that afterwards we could just rub a little pain cream (a mixture of essential oils) on to her face and then put her to sleep.
We continued this for several weeks. The bubbles kept growing and the top one got to a pretty impressive size. Then one night ML came home and noticed she had a small opening in her skin on the area that was covering one of her bubbles. We didn’t freak though. Thankfully, the dr. had told us a day or two before that this might happen and we were at a good place if it did. He had also given us his cell phone number.
We texted him a picture of her forehead and went about preparing to leave our girls with the babysitter for the night. Dr. Ray replied with the news we were both sort of expecting, “Don’t feed her breakfast in the morning. Bring her to Children’s South and we may do surgery.”
Thankfully, we have an awesome babysitter who totally wasn’t weirded out by the fact that Esther had a small hole in her head. I say this only because my weak little stomach really didn’t want to focus on that fact. She kept the girls for us while Michael Luke and I went to a meeting that night.
In hindsight that probably wasn’t the best solution for Esther though. She did incredibly well with her first surgery but that was because I spent weeks prepping her and days in advance applying Tranquil to her to help ease any nervousness she had. This time we had less than eighteen hours to prep her. #fail
Her tummy started hurting her that night and she couldn’t fall asleep easily. Our sitter texted us and I recommended rubbing a little DiGize on her tummy. Clueless me thought she was coming down with a virus or something. WRONG! She woke up the next morning sick but it wasn’t because of a virus it was because of nerves. Poor thing, she just felt horrible and dreaded what was to come. She ended up getting to surgery and having to take a Tranquilizer to help her calm down. It was not how we wanted her next surgery to go.
Thankfully, the actual surgery went great. The top forehead expander was removed and she was back to her old self in no time.
It was then that I realized her next surgery would need just as much preparation as her first. She had a little more motivation this time around too. Why? Because when she had the expander removed they gave her a sippy cup with lemonade in it! She wanted that again! Whatever works, right?
Her third surgery was this Monday. After weeks of preparation again and days of applying Tranquil for preparation she did great! She didn’t shed a tear as she was rolled off to surgery and even bounced out of bed Monday morning. To continue with the tradition of the first surgery she dressed in some of her fanciest clothes to go to the hospital. Wearing her pajamas like some of the other kids just isn’t an option for her.
She did great and then thoroughly embraced her “Queen Esther” roll while in the hospital Monday night. I’m telling you, staying in the hospital for Esther is like a trip to a resort and spa… on insurance. People waiting on her hand and foot. Endless tv. Meals at your request. And your own bed on wheels. What more does a girl need?
Both expanders have now been removed as well as all previously scarred and bound down skin. Her new skin on her face will now be as smooth as the other side. And the dr. surprised us by lowering her eye just a smidgen to match her good eye. Esther’s head will be in wraps until this morning and then we will resume life as normal until hopefully sometime next year. We’ll just have to wait until another day to talk about that surgery though.
P.S. For more on why and what type of essential oils we just click here.
P.P.S For more on our Hong Kong adoption click here.