the things you plan for
Anya is now 14 weeks old, or just a smidge over three months. She has gone from an oblivious blob who only eats, sleeps, cries and poops, to a budding consciousness forming connections with the world around her, and discovering how she fits into that world. Who also, still, mostly, eats, sleeps, cries and poops.
It's amazing to watch her get the hang of things, even at this young age. She's figured out how to physically grasp things now, and her favorite toys are those with rings she can grip and then shake the hell out of. Her neck muscles are strong enough to hold her head upright now, and one of her favorite things is sitting up. She's on the cusp of being able to support her own weight on her legs.
She's officially in the middle of a growth spurt at the moment, and her feeding amount has spiked. When she's hungry, all our neighbors know it.
I look at her and I see a beautiful, healthy, happy little girl. What's not as obvious is that she was born with an abnormality that, while treatable, has meant a lot more work than both Janet and I had planned for.
About 20 seconds after Anya was born, the midwife conducted a series of Apgar tests to assess her general health and determine whether she needed any immediate medical attention. (She didn't, thankfully.) Anya was then weighed, wrapped up, and placed under a heat lamp like a quarter-pounder-with-cheese combo meal awaiting order pickup. All during this, I was gently touching her fingers and stroking her head, astonished that I was inexplicably now a father. Afterward, she was brought over for Janet to hold.
Sometime in there (I don't remember exactly when, as the activity after the birth was all a bit of a blur), the midwife ran her pinky finger along the roof of Anya's mouth, and frowned. The surface was rougher than she expected, so after Janet and I spent a bit of time looking and touching and fawning over our new daughter, the midwife took Anya down the hall to the NICU for cleaning up and observation.
Janet and I got settled in her hospital room; they were out of single rooms that first night, so she had to share with a woman who had noisy visitors and kept the TV on all night long, which, added to the pain of childbirth meant she didn't get a lot of sleep that night. On top of this was the news we got before I left to go home.
I'd heard that the pediatrician on duty, Dr Lim, wanted to take a look at Anya before letting her out of the NICU. After waiting and waiting for hours, during which time I tried fruitlessly to comfort Janet after the epidural drugs had worn off, and encourage her to eat something for dinner, I got tired of waiting and walked down to the NICU myself. I found Anya's cot in the corner, and she was sleeping, unclothed but for a diaper, electric leads monitoring her heart rate and other vital functions. She was so tiny and fragile in that moment that I wanted to sob.
I looked up and spied Dr Lim making his way around the room to check on all the babies there. He finally made his way to Anya's cot and I shook his hand. He relayed to me the widwife's worries, and then took out a penlight so he could look inside Anya's mouth. She fussed a bit, but after he examined her, she went straight back to sleep.
"Okay," he said, softly. "You look like a calm and rational gentleman, so I'll just tell this to you straight. Your baby has a cleft palate."
"What does that mean?"
"It means that when her head and face were forming, the tissues on the inside of her mouth didn't close up. This feels like a fairly wide cleft, which basically means that the roof of her mouth, which separates the inside of the mouth from the nasal cavity, is missing."
I can't really remember the physiological effects that the news had on me, but I'm pretty sure that at the very least all the blood drained out of my face. I do recall the doctor putting a gentle hand on my arm, most likely in response to my expression.
"Is she going to be okay?"
Dr Lim smiled and said, "Yes, this is actually a very treatable defect. In about six months to a year, she'll have a surgery to close up the cleft, and once she heals, no one will be able to tell that she ever had a cleft palate in the first place. She's otherwise a very healthy baby."
Dr Lim accompanied me back down the hall to Janet's room, and relayed the news to her. Considering the amount of pain she was in, and the abruptness of the news, she took it well. The doctor added that because of the cleft, Anya wouldn't be able to create suction, and would therefore be unable to breastfeed. Janet could still express breast milk, but it would all have to be delivered to Anya in bottles. I could tell that Janet was disappointed, but although it would mean more work to use the manual pump, Anya could still drink breast milk, although it seemed that the majority of her food would need to come from formula.
(For the rest of our stay in the hospital, Dr Lim came back a number of times to check on us, and his gentle nature and his office's proximity to our flat led us to choose him for Anya's regular pediatrician.)
The next morning after Anya was wheeled in, we were visited by a nurse from the Cleft and Craniofacial Centre (CCRC) at nearby KK Women's and Children's Hospital, to show us the special bottles and teats (both made by Pigeon) that we would need to use to feed Anya. She demonstrated, and then had both Janet and I practice. The teats have a a notch at the top to help guide where it should be placed; the top side is stiffer to help Anya brace it in her mouth, and the bottom side is thinner and more flexible to allow her tongue to pull the liquid out of the bottle. We also had to make sure that the bottle was at a 45 degree angle so that the liquid could be pulled through a plastic regulator.
It was a lot to take in, in addition to learning how to hold Anya and burp her and watch for spit-ups. Cleft palate babies tend to take in more air whilst feeding, so we needed (and still need) to stop one or two times in the middle of a feeding to burp Anya, so that the air wouldn't get trapped in her stomach. The spit-ups were even more harrowing, because of the linkages between nasal passages and ear canals; if fluid went up her nose, there was a good chance it could also get into her ears, and block sounds from fully reaching her eardrums. Persistant fluid build-up could lead to ear infections and possibly affect her speech once she starts learning to talk. So much to worry about, and we'd only been parents for one day.
Sometime during the day, we were moved to a single room (thank the Buddha, it was so much quieter and more spacious), which helped improve our moods. All new parents go through a period of anxiety at the beginning; my biggest worries, being a monster klutz, were holding Anya too tightly and dropping her. But we had a whole other level of worries on top of that. That said, the situation was fixable, and I kept reminding myself that there were many parents out there who had to deal with much bigger obstacles, such as premature birth, or glaucoma, or heart murmurs, or Down's syndrome, or sickle-cell anemia, etc. Anya didn't even have a cleft lip, which is much more visually obvious. Things could have been much more challenging. Remember, remember, over and over.
When Anya was just over a month old, we headed to KK Hospital to meet the head of the CCRC, Dr Vincent Yeow, and to get his assessment of Anya. He told us that her cleft was quite wide, but that it was by no means the most severe one he had seen, and that it would be quite easy to close up with the surgery. In fact, it's quite a routine procedure at this point, and she should recover quickly. We wouldn't find out until later when exactly she'd be having the surgery, although he reiterated that it would be when she was between six months and a year old, and most preferably before she starts (a) learning to talk and (b) eating solid food. Even after the surgery, she'll need to go in to the CCRC on a periodic basis for speech therapy to ensure that she's forming the sounds correctly with her new palate.
A few days prior to the CCRC appointment, we'd taken Anya to the Ear, Nose & Throat (ENT) doctor at KKH, and she failed to pass the hearing test that was given, despite the fact that after she was born she'd passed in both ears. The ENT doc said that in addition to any possible fluid buildup, cleft palate babies also had a harder time equalizing the pressure in their ears (like when you try to make your ears pop when descending in an airplane). This popping is usually aided by sucking during feeding, but she obviously couldn't do this.
We made an appointment for January to test her hearing again, but my heart leapt into my throat once again. If her hearing didn't improve, they'd likely have to surgically implant tubes in her ears to drain the fluid so that she'd be able to hear properly, and they would do it at the same time as the palate surgery so as to minimize the number of times she'd have to go under general anesthesia.
During this time, especially during the first month, Janet and I were struggling in taking care of Anya. Because of the special feeding methods, we couldn't just pass Anya off to anyone else to take care of in case we needed a rest. People would have to be trained up, and be able to keep a lot of information in their head. Plus, it felt like we were constantly washing and sterilizing bottles, and laundry had to be done every other day, and the plants were dying from neglect, and the flat was getting dirtier and dirtier, and we just didn't feel like we were getting the help that we needed.
It was an incredibly trying period, but I have to especially thank Janet's parents for being champions during this time, and since. Janet's father Raymond was over all the time, buying groceries, or putting together IKEA furniture, or cleaning ceiling fans, or fixing lights; basically doing the things that we didn't have the time or energy to do. He helped to feed Anya, and occasionally spent the night to aid in the early morning feedings. If this doesn't tell you what kind of person Raymond is, check out his conversation with Thubten Chonyi after attending a Chenrezing retreat at Sravasti Abbey last year. The man is a bodhissatva on earth, although he'd most likely say that sentiment was nonsense.
Janet's mum Ivy was over almost every day, bringing lunch and dinner either cooked by one of her sisters or bought at the food stalls downstairs. Even though she wasn't able to participate in the feedings, she was excellent at holding Anya afterwards and rocking her to sleep.
When my mom visited in December, she was also wonderful with Anya, helping with the feeding, soothing, bottle-washing, and other daily things that needed doing around the flat. She also talked to Anya quite a lot, letting her hear lots of new words in a calm tone of voice. I still greatly appreciate Mom making the very long trip to stay with us for ten days, and I know Anya enjoyed being with her Yiayia.
But we also needed more regular help. We attempted to hire a live-in confinement nanny, who would basically stay with us for the first month and take care of Anya so that Janet could rest and regain her strength, but the woman that the agency sent over only lasted a day, and barely that. She hardly spoke any English, she didn't write down any instructions, she didn't pay attention when we were telling her how to feed Anya or wash the bottles or do the laundry, and instead spent much of her time sitting in Anya's room staring at the wall. A void, a black hole of a person, and she made everything worse. The following morning, I called the agency, vociferously complained and demanded a full refund; thankfully, I got it, and the nanny was out the door by 9:30 a.m. or so.
The biggest problem then, and one that remains, was sleep. Janet and I were both sleep-deprived trying to negotiate the feeding schedule, and this made us irritable and on edge for days on end. When we got married, we didn't go through the traditional wedding vows (for richer or for poorer, in good times and in bad, etc.), but these were certainly bad times. As before, I kept reminding myself that it would be very rough at the beginning, but as with all things, the situation was impermanent, and it would get better. I would need to weather the crying, and the yelling, and the meltdowns, and the feelings of being unappreciated and unwelcome, and then try to be supportive and loving and steady. It was a real test of our commitment to each other and to this tiny new life that we'd created, but in the end, it was strengthening.
This blog entry has been a long time in coming. I haven't written it before now because, well, we were still dealing with the news ourselves, let alone telling the world about it. But the cleft palate is certainly nothing to be ashamed of (and we aren't), and I've come to appreciate and depend on the community that reads this blog, so I hope you understand.
When I asked Janet if she was okay with me blogging about Anya's cleft palate and all the difficulties that had resulted from it, she was a bit worried that we were "outing" Anya early, especially since in a year from now, no one will be able to tell that the roof of her mouth wasn't always there. But I feel that talking about what we've gone through will enable further conversation with other cleft palate parents in sharing experiences and tips and commiseration.
We certainly didn't plan for this eventuality, but that's life for you. You accept the situation and you move on.
And I'm thankful every day that this is the only major hurdle that Anya will need to deal with for right now, that her situation is easy to remedy, that we live so close to such a kind pediatrician, that we're only a short drive away from a government hospital that specializes in Anya's condition, that Anya has such loving grandparents on both sides of her family. That health care here in Singapore is so affordable, that I work in a well-paid teaching job, and that we can get by comfortably right now on just my salary. That we have a cleaning lady come by once a week to do a good job making the flat free of dirt.
I'm also very thankful that on this past Saturday, Anya's hearing was tested again at the ENT, and she passed in her left ear. (Yay!) Her right ear was inconclusive, and she may not have passed because of either fluid or wax buildup. Still, hopeful news. We'll test her again in six weeks, and if she passes in both ears, they won't have to implant the tubes.
As well, I'm thankful that we've discovered the source of her current ultra-crankiness: not enough sleep. After the last visit to the ENT, we stopped in to a bookshop on the bottom floor of the hospital, and Janet found a book on fussy babies which detailed the causes and strategies to deal with fussiness. We've had to make sure Anya takes more naps during the day, and does so in a quiet environment (which is tough in urban Singapore). It's been a big adjustment for her, and the last few days have been nightmarish, but as of late last night her feeding has gotten better, and she seems more rested now.
But mostly I'm thankful for the precious gift of Anya herself, who already makes me laugh at unexpected moments and encourages me through her very existence to be a better father, a better husband, a better human being.