PHALANGIES!

We are almost to the point of losing count of the number of times we have made the hour long trek, parked the car in the whale parking lot, had our shirts tagged with badges, and watched our pager come alive giving an alert that a doctor is ready to see us. With those Children’s Hospital visits has come a familiarity and sense of belonging for not only Pat and myself, but also with Treya. It is a kid-friendly , colorful under the sea themed place, and even though some of the procedures may not be pleasant, we always leave feeling good about the experience.

So although a surgery is never blasé, the comfort level we have come to know with Treya’s surgeon, Dr. Friedrich - trusting his expertise to the fullest - had us all quite calm on September 6th, the day of her second syndactyly release. Like clockwork, we arrived by 6:45am and were led to a room to help prep Trey for the surgery that, if successful, would be the birth of her 9th and 10th fingers. Warm body wipes and a flannel green gown were supplied as Pat and I diligently washed our baby girl down and dressed her, so reminiscent of a similar day in March, when her pinkie finger was released. This was hardly routine for us, but the staff has a way of making everyone feel calm as they amble through your room checking and double checking that Treya’s identification bracelet, securely attached to her ankle, matched the name on her chart, asking if we had any questions, and if they could bring anything to make us feel more comfortable like warm blankets, books, stickers. STICKERS? Did someone say stickers?

In a matter of minutes Treya had adorned her gown with a handful of big 3 by 3 inch stickers, each with a Dora, unicorn, dread I say Sponge Bob and various other characters on them. Honestly, the girl’s outfit was stiff with decoration, but she was kept happy which was our main goal. Soon, the anesthesiologist arrived and observed as I administered the purple silly juice through the plunger and into her bird shaped mouth. Treya can giggle like no other, a guttural laughter that barely allows for breath intake and it is contagious to all who are within earshot. So when Twinkle Twinkle became the most funny song she had ever heard, we knew that the loony liquid had taken hold. In my arms, her limp body became dead weight as I lifted her into the arms of a waiting nurse struggling to control her own giggling, who then carried her away. Treya’s deep soulful eyes tracked mine as far as she could, until the two of them rounded the corner at the end of the hall; my anxiety about her departure was eased knowing that she wouldn’t remember this - though I would.

It is hard not to be a clock watcher at times like these, try as Pat and I might to busy ourselves on the ipad. And concern turned to worry as the surgery drug on more than an hour longer than what was anticipated. To say that we sprinted to the check-in station when our pager sounded, was an understatement. Reading Dr. Friedrich’s body language, our minds were quickly put at ease, as he joined us for a consultation; entering the room with a smile. Treya came through with flying colors - a character he said - and once again he managed to preserve far more finger than what was expected. The tiny bones that form one's fingertip on her two middle fingers had grown together, causing the time delay, as he had to saw them apart and file the edges smooth. Normally, he would have just removed this tiny bone bit, but he felt by the looks of Treya’s bones and good circulation, there may be some growth potential there. Even a millimeter of extra length for her would be worth the added effort.

Sporting a purple cast, the predetermined color of her and Devi’s choice, our groggy jelly bean was placed into the loving arms of her mommy. We were told that she was quite agitated as she started to stir in the recovery room and would not allow the nurse to remove the heart monitor “stickers” on her chest. “Mine, mine!” They let her be :) I was so looking forward to some sweet cuddle time with my girl because without sedation she rarely sits still, but that was not to be shared this time, as Treya was quite mad about the IV line still in her hand and various other annoyances a surgical procedure can bring. With a furrowed brow she repeatedly tried without success to convey her many complaints through anesthesia slurred speech that on any regular day is hard to understand. That is when she resorted to sign language with a casted arm, now a dead weighted club, that had been injected with a pain blocker rendering it useless. Poor baby was frustrated beyond belief, but once she learned we could go home as soon as she could drink her juice, she downed it. We dressed her as best we could, talked her into removing the heart monitor stickers and we headed home.

This shows Treya's purple cast and YES!, we are in the middle of potty training. She is doing great and is so proud to be wearing real princess panties.

Twenty two days later, as I said night night to Trey the evening before having the cast removed, we talked about her appointment the next day. I told her, “Tomorrow you get your cast taken off”. She replied, “Me? tass off?” “Yes” I assured her. “YAY!” she cheered. We had this exchange a number of times before she finally believed me enough to close her eyes and drift off to sleep excited about the next days coming events.

With Pat out of town, I chose to bring both girls to the appointment. Devi had been wanting to see where we take Treya and I figured knowing what to expect, having done this once before, it would be a good time to bring her. My friend DiAnna had nothing to do so offered to come with us to sit with me and the girls. I welcomed the company, so all 4 of us made the trek, not knowing how the Lord takes care of us sometimes with His provisions.

Treya immediately associated the casting room with the noisy cast saw they used on her leg casts and began feeling a bit anxious, but was easily calmed when she realized she did not need the saw this time. With Treya sitting on my lap, the technician scissored the splint off in minutes and all was going well until they took her arm out of the cast and Treya saw her fingers for the first time. She took a long look in amazement and then she just lost it. I had forgotten the sound of THAT cry; the one that I last heard when we left the orphanage in India. There is no whimper or warning. It is volcanic in it’s eruption. The sound of pure terror, it is loud, guttural and almost animal like. Once it escalates to this level there is no consoling her. Tears literally squirt from her tear ducts, drool runs endlessly from her mouth, perspiration drenches her clothing and verbal communication is futile. I was so thankful for DiAnna right then. She was great with Dev who was trying to give Treya kisses and rub her back, all wonderful acts of love that were so rejected by Treya in the moment. DiAnna was also instrumental in helping to deal with Treya, retrieving Kleenex and simply helping me to keep my head while holding a hysterical child.

Treya sobbed for nearly an hour with no reprieve. Naturally the staff at Children’s were aces in helping in every way they could, showing patience beyond measure, allowing Treya the time she needed to calm down before attempting to examine her hand. They tried stickers, cookies and juice and of course Devi, DiAnna and I were giving all the TLC we could muster. Meanwhile the open air room of other casted patients had to endure our explosive scene. At a glance I witnessed one terrified boy sitting in his mom’s lap, staring at us in horror with both his hands over his ears. It was complete and utter mayhem. We finally covered Treya’s new fingers with a towel, and once obscured from view, she began the calming process; gasps of air, followed by hysteria flair ups, followed by gasps of air, until the ability to verbally communicate with her was regained.

Once somewhat contained, Dr. Friedrich took a quick look, proclaiming the new digits healthy and healing. Like any fresh surgery site, however, Treya’s hand is a bit gnarly looking, especially to her. Her arm is shedding flaky dry skin, her hand is covered in permanent black ink markings and measurements indicating the precision required to perform this level of repair, and her new fingers have scabs, stitches and some darkened freshly grafted skin. While I am thrilled and ecstatic about the result, I have to remember that a two year old does not possess the ability to realize that it will not look like this forever. As a parting note, the doc mentioned that with second surgeries, it is not unusual for children to become more emotional, albeit not quite as irrational as Treya’s display, a fact that would of better served us if revealed far earlier in our day!

Before any correction

After the pinkie release surgery had healed.

After this surgery. Stitches are still dissolving and grafted skin is still healing.

Peggy, the occupational therapist, moved us into the her magical room of tricks and masterly constructed Treya’s plastic and Velcro hand brace. Treya continued to protest with small tearful fits of objection, but by this time, she was wearing down so was more easily distracted with puzzles, her toy of choice. The paddle-like brace is meant to protect the hand as it continues to heal and to hold the two new fingers apart, as they tend to want to easily reattach at the base of the hand. Six more weeks and she is a free girl to express herself as she pleases with....wait for it.....10 individual FINGERS! Not all of them are full size or have nail beds, but her reach has increased significantly, which in turn will allow her an almost normal grasp.

Once home and in our jammies, Treya was finally calmed enough for me to talk with her about how pretty her new fingers are, how brave she had been and together we looked at those beautiful new fingers to see that they are not scary at all. Her arm is sore from being in that casted position for so long, but she is thrilled that she can move her elbow again. After such an over stimulating day, I gave her a bit of Tylenol to continue to calm her and help bring restful sleep. Wearing Devi’s hand-me-down Tinkerbell jammies for the first time helped a bit too.

Treya's hand brace for the next six weeks.

Exhausted myself, sleep just wouldn’t come. I couldn’t help rethinking our decisions for Treya’s hand. She has been through so much and yet we keep pressing for more from her. From every examined angle, however, I stand unwavering in our choices regarding her progress. Becoming a mother was not just fulfilling my dream of having children to hold and love, it also was openly taking on the responsibility to act of their behalf when they are not able, by providing the best opportunities for them to reach their full potential in life. Sometimes that means the decisions are tough or even unpleasant, but that is where faith and the support of others becomes crucial. By morning, Treya was unfazed and back to her good old rough and tumble self, once again demonstrating the tenacity of this precious child; capable of enduring far more than her young years suggest. She is going to be unstoppable.