Tupelo Unplugged: Lip and Palate Surgery

Summary: Cleft Lip & Palate Surgeries

We brought home our second daughter from China at 19 months of age (she was from a small , relatively unknown, orphanage of less than 20 children). She had her lip surgery at 21 months, and palate surgery at 23 months. It is my belief that her surgeries brought up past emotional trauma and negatively affected our connection, each time. Things have slowly improved, though, and it is my hope that our connection will continue to grow.

The following is a description of her surgical process and things we did to improve her outcome, physically and emotionally.

Lip Surgery (Unilateral)
The surgery went well and we spent one night in the hospital. Despite my requests, they did not get us into the recovery room before my daughter awoke. [Note: for her next surgery (palate), I called ahead and spoke with hospital social workers, the pre-surgical nursing staff, and the Post Anesthesia Care Unit supervisory nurse]. She spent the night in a hospital crib (with IV, etc.), while I slept in a pullout chair next to her. Before going to bed she was very thirsty and guzzled apple juice (they didn’t want her to have too much, but she didn’t throw up so I did let her have about 8 oz total). My daughter awoke every few hours in the hospital (mostly due to nursing staff). I told each nurse tending to her that I “conscientiously objected” to the hospital policy of taking off her no-no’s to check her arms every two hours; they were happy to oblige. This helped minimize her arousal when they came in to administer pain meds (morphine). We went home with oxycodone and acetaminophen (both worked great). I notice that other children are sent home with Tylenol-Codeine, however, it has been my experience that oxycodone works superbly for pain management—it did not affect her sleepiness during the day, as far as I could tell. As soon as I stopped the oxycodone (perhaps day 4 or 5?), then she began waking and crying, off and on, all night long (she was sleeping in her own crib, in our room, alongside her older sister’s crib). I continued with Tylenol, and her crying was not related to pain. Crying occurred during much of each day, too (real crying from unhappiness/grief, not physical pain). We were unable to comfort her at night because she was profoundly resistant. I don’t think she was having night terrors, but I didn’t turn on the lights to closely examine her (I just stayed next to her crib and tried to hold her hand or rub her—but she didn’t want anything to do with us). It lasted about 2-3 weeks or so. Reaction to her palate surgery was worse (described below). Food consumption did not change dramatically for any period of time after this lip surgery. Food continued to leak out her nostril (e.g., yogurt, eggs, mac & cheese).

Ear tubes were placed during this surgery, also. Cotton balls covered in Vaseline had to be put in her ears for each bath for several weeks (we were required to take her to the doctor to check for infection before stopping this bath-time ear protection).

Palate Surgery
The surgery went great (1 hr). The entire palate was closed during this surgery; however, the surgeon also considered a two-stage closure (soft palate and hard palate, separately). Her cleft was not exceedingly wide so he decided to close it during a single surgery. According to her surgeon, she was bleeding more than most children do. Bleeding did not stop or slow down, as expected; this necessitated late-night visits by the resident on duty and pediatric intensive care staff. Blood-work confirmed that her hemoglobin had dropped significantly (however a blood transfusion was decided against, at the last moment). Poking and prodding continued for hours, and she was hysterical through it all. I believe this may have heightened her perception that I “did not protect her.”

Sleep
Five weeks post surgery, and she hasn’t returned to her pre-surgery sleep patterns (which had been pretty good, actually). She would awake about an hour after falling asleep, cry for an hour or two, fall asleep for a couple of hours, then awake and cry again. This continued all night long. Crying spells continued during waking hours, too. The crying was intense (not whimpering or half-asleep). The adoption social worked suggested she sleep in our bed, and this has helped a bit. Melatonin (1 mg) helps her go to sleep, though she still wakes and cries several times each night. Sometimes it is momentary, but other times it evolves into full-blown grief. If crying continues, we give her a bottle and, occasionally, 3 ml of Benadryl. Alternatively, we have also gotten up for several hours; for some reason, the “signing times” video’s are calming in the middle of the night.

Food
She’s very stubborn and independent (need to control ?) and falls apart if she isn’t holding her own feeding implements. Because she couldn’t put anything hard in her mouth, I gave her a large serving spoon to eat with and she was able to get the food off it with ease. Gerber makes spoons that are very soft (silicone or similar), and Amy Coe makes pure silicone spoons (super soft). I also tried coffee spoons ahead of time, but she was still able to shove the whole (very deep, large) spoon in her mouth. I also tried a set of large, round measuring spoons—specifically the tablespoon: same problem, she was still able to get it in her mouth. Even though I purchased these other items, the large serving spoon I had worked the best. I pureed everything she ate, and usually what we were eating (except pizza!) I added milk, crème, chicken/beef broth, or cream of chicken soup to puree all these items. I ground up oatmeal flakes before cooking (added teensy pieces of strawberries and maple syrup, of course). Chocolate milk, rice pudding, yogurt, cottage cheese, ricotta cheese, and ice cream were all a big hit, either alone or added to a puree (e.g., smoothie). She gobbled up “Annie Chun’s” garlic noodle bowls (I added scrambled eggs and cooked spinach, pureed it all, then added only a portion of the flavor packet). The two weeks passed faster than I thought it would. We were able to modify her food to a soft diet (e.g., macaroni & cheese) the third week. By week four we were allowed to return to a normal diet (though I still haven’t given her any sharp crackers). I “broke her fast” with pizza and salad :)

December 28th: Willow's Family Day (Two Years Ago)

This was the first time we saw Willow (Chun Qi), as the ayi (orphanage caretaker on left) and other staff person walk her towards us. At the time I was too apprehensive myself to fully comprehend how The Little One's history and temperament might be affecting her emotional state and fear of the unfolding events. Now that I know this precious child, it is almost unbearable to know she had any scary moments in her life for which I wasn't there to comfort her--pure agony for us, but likely traumatic for her:

First hug, kiss, and smell of this lovely little creature. The life she knew for 21 months was abruptly disintegrating; my life was beginning:

Happy husband! Willow: shut down and numb:

Still waters run deep:

Transitioning, but hypervigilant:

Acceptance? Neutrality? Comforted?:

Emergence:

Hanukkah and Christmas

Well, I almost forgot Hanukkah altogether; we read books, but with Tupelo's impending surgery and single-parenting while the spouse was away for work, I did not have the mojo to dust off my menorah and add this celebration to honor the other half of my heritage. Please enjoy a few pictures from our Christmas celebration. Our tree (a small, folksy Sequoia) is on the counter as it would not weather the hands of a 23-month old. Warmest holiday greetings to you and yours; may peace soon prevail on earth:



Gingerbread Bears:



Clarice:

Willow enjoying her Folkmanis kangaroo and joey:

Tupelo's favorite gift seemed to be the pink tulle skirt (she wore it all day, including during her nap). The no-no's on her arms are meant to keep her fingers, and any stray objects, out of her mouth for the next few weeks (and yes, she is somewhat miserable when wearing them):

So far about 24 inches of snow:

Finally, a good nap:

Palate Surgery Day

Dressed for the trip to the hospital, and grooving on a spoon while lounging on the floor: Ignorance is Bliss



Don't I look nice in mint green? This toy is fun, too:


Taking her initial vitals in preop. Coincidentally, we have had the same nurse for each and every surgery the girls have undergone (this is surgery #3). He is super nice, and the resemblance to Tom Hanks is amazing (especially in person):



She might be getting a little suspicious now. They are about to dose her with "versed", a medication whose purpose is to make her loopy, calm any jitters, and result in amnesia about anything that has to do with the operating room:



The time has come. Daddy carries her towards the operating room. The anesthesiologist and operating room nurse lead the way, wheeling her bed along (background):

Warning: if the following picture makes you squeamish, don't look at the pictures farther below:

Surgery took about an hour. Our surgeon thought he might do a two-stage repair if the width of her cleft necessitated it (i.e., first the soft palate, then the hard palate a couple of months later). However, after really looking at it under sedation, he decided to do a standard (entire palate) repair. Per her surgeon, immediately post surgery, “she is oozing more than the average bear” (meaning she was bleeding quite a bit). Here she is, as soon as we could see her, in the PACU (Post anesthesia care unit). At this point the bleeding didn't seem to bad to us ... yet:

After getting to our room I learned what "more than the average bear" could mean (see picture below). As afternoon became night, the bleeding seemed to get worse and the nurses ended up calling the surgeon at home, and also calling the Resident on duty to the room. The bleeding was excessive and hard to watch—it went on for hours. Next I knew, Pediatric Intensive Care was there (to see it themselves and draw blood for testing her actual amount of blood loss, clotting factors, etc.), along with several other nurses (and the Chaplain!) The Chaplain was coincidental (though I didn’t initially know this). Yellow Teddy (Butter Bear) brought much-needed comfort, and everyone said “awwww” when Tupelo grabbed and hugged her—she is now “bloody” Teddy :) After the Chaplain prayed for her the bleeding miraculously stopped—not kidding. NOT kidding.

Despite what was happing, she drank apple juice with intense gusto bordering on desperation (which is a VERY GOOD thing after palate surgery). Thank you morphine.

The next morning Tupelo and Yellow Teddy ended up in my bed, where the coziness of my sleeping bag induced the sleep that had been lost during the night:

Awake and puffy, she actually isn't completely unhappy and was able to eat/drink yogurt, berry applesauce, and juice.

Now that we are home, Tupelo has resumed most of her goofy antics, though peppered with a fair amount of whining and crankyness. She still won't open her mouth enough for us to get a good look (but I think her tongue was/is a little swollen). Please say a little prayer (in whatever style you wish) that her palate heals completely and perfectly.

Sequestered In The House

In an attempt to keep Tupelo as healthy as possible (so that her upcoming surgery, tomorrow, could proceed), for the last 10 days or so we kept both girls in a bubble, i.e., the house. Despite our best efforts, Tupelo has some congestion: we won't find out until we get to the hospital, tomorrow, whether palate surgery will proceed. Here are a few images from our imprisonment:

Baby It's Cold Outside

Early Winter images. Frigid (though a balmy 13 degrees or so in the photograph below). Our local bank has a holiday party each year, complete with REAL reindeer sleigh rides (Santa is inside the bank). Look closely at the antler rack on the reindeer on the left: ENORMOUS ... maybe 18 points or more (all grown in about 7 weeks). The velvet was nearly gone (last year's reindeer were in full velvet). Simply gorgeous animals--their eyes are piercing:



Our wonderful friend Suze crafted this star with Willow (which now sits on the top of our little tree).



They said a blizzard was coming ... when I awoke in the morning I was completely unable to see out the porch door (or any other door for that matter). Disconcerting until I had my first cup of coffee. Yes, the snow was fallilng hard, but it had also stuck to every surface of the house, including the screens. Behind the screen is a full curtain of icicles.



Chloe and Gus stepped outside for a look: they returned in a minute with a nice coating.



Bundled up the girls for a little adventure; the snow is only about 15 inches deep at this point (we probably got around 20-24", in total). Beautiful. The girls are light enough to hover at the surface without poking all the way down to the ground:

Rosemary's Baby

Pictures are deceiving ....

If you do not know the basic premise of the movie, the title of this post won't be that humorous. Suffice it to say that our little Tupelo was possessed for 3 weeks running (see earlier post, "Is Tupelo's Heart Healing"). She cried more hours than not, and awoke (inconsolable and angry) numerous times each night (presumably night terrors, but I didn't turn on the light to see if she was still asleep; rather, I did my best to console the tasmanian devil inhabiting the crib).

This began about a week after her first surgery; it stopped about the same time both girls came down with hand-foot-mouth virus (and I administered baby oxycodone to alleviate the pain from the sores in their throats enough to drink some fluids, but perhaps it broke her pattern of dismay). Miraculously, happy-nutty-cuddly girl returned, day and night.

The adoption social workers speculate that the trauma of surgery triggered a type of post-traumatic stress syndrome in her. Eeee gads. "Though back to herself, and adjusting to her new life again, we are holding our breath as surgery #2 (more painful than surgery #1) is scheduled for this coming Monday. Prayers and good thoughts requested.