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 :)