Monday, January 28, 2019

A New Smile for Whitney


When Whitney was born, the doctors told me that she could have corrective surgery for her cleft lip when she was 3 months AND 10 lbs. We were planning to move back to the US in December, so I mentally calculated that it would be mid-September or maybe October when she could have the surgery. We could get the surgery done, I thought, and then apply for her US citizenship and official passport in time to leave the country in December. Obtaining all her documentation after surgery would minimize the number of reminders that she was different or had a “defect.” No one from the US would even meet her until it was fixed.



Our plans changed, however, when my brother got engaged to a beautiful girl from western New York. Waiting for us to return in December for a wedding in the snow belt was foolish. They decided to get married in October, the month we were planning to have Whitney’s surgery. After discussing options with Dr. David Nolen, the surgeon, we agreed that postponing the surgery until after the trip to the US for the wedding was the most prudent. Whitney would be bigger, there would still be time for her to heal prior to our departure, and we wouldn’t be wondering if she was in pain when she was crying on the long international flights.

We did not have any reservations about doing the surgery in Africa, as there was a center for cleft lip/palate within walking distance of our house, and the surgeon was a good friend of ours who had special training in facial plastic surgery. So, November 1st became the initial date we nailed down for her surgery. I mentally pushed away the anxious thoughts about the procedure itself. My biggest concern was for her ability to nurse both for the 6-8 hours before surgery and for the 2 weeks after. Dr. Nolen had explained to me that she would not be allowed to suck on anything- pacifier, fingers, bottles, or breastfeed immediately after the surgery. Whitney primarily comforted herself with thumb sucking and nursing; she had no special blanket or comfort toy yet. I dreaded the two weeks. Feeding by cup sounded miserable with a capital M.

Mid-October came quickly, and Ryan and I were able to leave Sydney and Zack with good friends in Kenya while we made the whirlwind trip with Whitney. We had three solid days in the US/Canada for the wedding before we turned around. We chuckled when people consoled us on the long flights because “it must be tough with a baby.” After so many years of having multiple kids on these international trips, having just sweet Whitney to hold was a pleasure. :)

Whitney in the US for the first time
Brr cold

Meeting my brother Carlin before the wedding
With the beautiful bride (Rebekah) right before the ceremony
 We had a little over a week after we returned from the US to get resettled before the surgery date. And our family caught THE PLAGUE. Not really, but it was bad. The coughing and congestion were so bad for our older two that they vomited phlegm at night. Either that or they concurrently had a GI bug as well. Though Whitney hadn’t gotten symptoms yet, and though I tried to keep them separated, I felt it was inevitable that Whitney was going to catch it from them. I mentioned it to Dr. Nolen when I saw him on Sunday. His face grew solemn and he confirmed what I had feared, “Actually, even a little cold is a big deal in a baby having surgery. Let’s watch her closely, but typically an anesthetist will want to wait 2 weeks after a runny nose and 4 weeks after a cough, especially since this is an elective surgery.” He suggested we watch her carefully and have her examined by the pediatrician before deciding one way or another.

On Monday night, we were already planning to host our pediatrician and her family for dinner and games, because in a small medical mission station, friendship and work often intersect. Whitney was still her smiling, content self, and so Dr. Ari said that she wasn’t certain we should cancel. Towards the end of the long evening together, she commented, “Let’s just pray that it is obvious what decision we should make, one way or another.” Not even 5 minutes later, Whitney coughed. She coughed again, and then a third time. It was so insignificant I would not have thought about it, except that surgery was coming up. Ari looked at me and said, ‘Well, we can’t ignore a direct answer to prayer like that.”

Dr. Arianna Shirk with Whitney just after birth

I was really bummed, but I reasoned that at least we were canceling three days ahead of time and not the morning-of. I had a few days to process and adjust my expectations. And I knew it was probably for the best. Everyone, it seemed, on our boarding school campus, was sniffing or coughing or staying home from class for diarrhea/vomiting. We postponed the surgery until the 10th. During that time, though, Whitney needed to be well. I contemplated leaving our infected house, living and sleeping in the nearby guesthouse with Whitney, but that seemed like an impossible thing to maintain. Instead, we washed our hands and bathed the kids like we never have before. Ryan showered immediately after coming home from teaching and before touching the baby. Despite these measures, I worried that Whitney was getting worse and not better. I worried that I was not being objective as a doctor because I was mom. (Of course I wasn’t objective!) I don’t consider myself a worrier in general, but I was consumed with it.

It’s hard to describe the anxiety of those days. Ryan and I had discussed that we could postpone surgery until November 20 at the latest because we were traveling to Congo two weeks after that, and I would be a key member on the surgical team. Less than 2 weeks after a surgery would make that trip unsafe for Whitney and the surgical campaign nearly impossible for me as her mom. So if the surgery needed to be postponed after November 20, we would have to do it in the US. To do it in the US would mean we didn’t have a surgeon or pediatrician that we knew. To do it in the US would mean that we would have to be working for a while in order to be able to afford it and to be able to have insurance. To do it in the US would mean that we would have to take time off of the new and necessary jobs in order to care for her. Everything was in ready for us to have surgery in Kenya- bloodwork, anesthesia, a surgeon, OR space. Whitney just needed to have healthy lungs.
 
During the Halloween party, Zack already had the first symptoms of the PLAGUE, so a mask was appropriate
As Nov 10th approached, I found myself praying constantly that I would be able to give the results to God. I physically opened my hands and stretched them upward in an act of trust, giving Whitney and her surgery up for God to control. And almost as quickly, I felt myself grabbing back for control. Did I really trust God? Dr. Nolen called to check up on Whitney. He explained that Nov 12 would be better for the OR team than the 10th. I described Whitney’s condition to him, but I couldn’t be objective. I subconsciously explained away any semblance of a cough as her just clearing her throat. For that matter, the surgeon may have been having a hard time being objective as this elective surgery was not as elective with the deadline of us leaving. We had both been looking forward to this since she was born in June when he had come in to see her at only a few hours old.

It was a relief to me when David suggested that Whitney be examined by the pediatric anesthetist who was going to be there for the surgery. She could evaluate Whitney so that everyone would be on the same page. I took Whitney in to see the anesthetist on Thursday November 8th. I prayed that I would give up control—I prayed that I would report her symptoms truthfully—I prayed that I would accept the answer. Above all, I just wanted my baby to stay safe. The anesthetist examined her carefully and gave Whitney a clean bill of health, but she still decided that it was best to postpone the surgery again to be on the safe side. She suggested November 15,16, or 19—nearly the last day we had decided it was possible.

Quarantine area vintage rusty metal signWe checked with the Dr. Nolen. He was out of town the 19th, and the 15th and 16th were already overbooked. Ahhhhh!! He said he would get back to me. It was another long weekend of waiting. It turns out that Dr. Nolen was actually sick himself. I regretted bringing Whitney to church on Sunday as I listened to the cacophony of voices around the auditorium coughing. Was the whole world sick?? With two other preschool-aged kids and a husband who worked with students all day at a boarding school, was this even possible to stay healthy? On Tuesday I finally heard back from the Dr. Nolen regarding getting the next surgery date nailed down. He would make Friday, November 16th work. Whitney just had to stay healthy.

From then on, I quarantined Whitney. We didn’t have other children over to our house, Whitney didn’t go out of the house and mainly stayed in our bedroom area. Sydney and Zack didn’t touch her. As I went to bed on Thursday night, I was counting down the hours. My anxiety about her health prior to surgery had eclipsed my dread for the actual surgery. I set my alarm and got up to feed her one last time. She ate a LOT. I was so relieved that she would have a full tummy and sleep well until the morning when we would, hopefully, finally, have her surgery. I fell asleep.

Only 30 minutes later, I woke up to find that Whitney was vomiting. All that milk that she had downed came up. I thought that it was most likely an overfull stomach, but I knew that I would not be able to replace what she had just lost. Sure enough, at 3:30am, she was awake and crying out for milk. It was a hoarse cry, and as I paced the house, unable to soothe my baby by nursing her, my tears fell. I knew she didn’t understand why I wasn’t feeding her. I was exhausted from trying to keep her well for the last few weeks, exhausted mentally from trying to release control. It was something I only had a tiny bit of control over anyway! This is what I had been dreading all along- this six-hour window of time when I could not explain why I was not giving her what she wanted most. As hoarse as her cry was, I worried that she was finally getting sick and that we were all going to be doing this in vain. Uncertainty is so much harder to deal with than adversity. I continued holding and pacing and praying and crying. I ran my hands under the faucet to get them wet so that I could at least relieve Whitney’s parched mouth. It did help. Just as I was about to get Ryan up for his shift (something we had already talked about in preparation), Whitney drifted back to sleep. It was 4:30am. Only 2.5 hours to go.

When she woke at 5:30am, the sun was coming up. Though hungry, she no longer cried. Ryan and I took turns walking with her outside and showing her flowers and trees and bugs. The other kids were up, and it seemed like time flew by until it was time to walk down to the hospital for surgery. The walk was the same path I had taken when I was in labor with Whitney. Dr. Nolen was on his way into the hospital, so we walked in together as far as the operating room waiting area. He went on to prepare things in the room. I kept waiting for Whitney to cough or for something to happen. Instead, the anesthetist came to get her promptly and I waved goodbye to her. As I watched her go, I realized that my main emotion was relief instead of worry. It is strange, perhaps, to think about, but my relief came from releasing my personal responsibility for her health into the hands of an anesthetist and a surgeon to fix the defect in her lip. This time I had no temptation to try to regain control. My hands were open.

Hungry Whitney
Just before surgery


My main task while waiting for her to have surgery was to pump milk for her. This was not only for Whitney to have something to drink after surgery, but also for me as I had not nursed her all night. I walked over to Dr. Ari’s house, my friend and Whitney’s pediatrician. We were able to catch our breath in a chaotic moment and enjoy being friends. Too soon, it was time to head back to the hospital: Ari to the peds ward and I to the waiting room. Ryan was still there, busy grading math tests to pass the time. We didn’t have to wait too long. Right around the 2 hour mark, Dr. Nolen texted me that the surgery was done and had gone really well.

Although I was looking forward to seeing her, I also was prepared that I wasn’t going to have all happy emotions. A couple of other women at RVA had shared their stories of family members with cleft lip and palate. “After surgery, it’s like you are getting to know a new baby,” they told me. The old smile and face will be gone, so there is actually a loss as well as the gain of what is considered a normal appearance. In addition, with the healing and swelling, it looks worse before it looks better. Because I had been counseled about this, when I went to see her in the PACU, I felt emotionally prepared. God had placed the right people in my path to help guide me.

Only one parent was allowed into the PACU. This was hard, as Ryan was just as anxious to see his baby girl as I was. I took the milk I had pumped as well as the cup with which to feed her. We had practiced a few times with the help of the occupational therapist (amazing friend who does this exact work all the time!) but I was worried about the additional variable of post-operative pain. David had, over the weeks leading up to the final surgery date, started hinting at the fact that newer research was showing that forbidding breastfeeding may not be necessary and that there was no difference in wound dehiscence (when it breaks apart). He had tried early breastfeeding for a few of his patients during the two weeks prior to Whitney’s operation with no issues. I wondered what this meant for us and hoped he would allow breastfeeding after the initial post-op period, maybe after a few days. We were planning to spend the night in the hospital, anticipating feeding issues and possibly pain issues.

Dr. David Nolen just after the surgery

Dr. Nolen brought me back and I entered the tiniest little space- the infant warmer took up most of the room. And there on the warmer was our baby, crying intermittently and looking groggy even with her eyes closed. David explained to me that he was able to move the nasal septum and bring the left nostril in using stitches from the inside. “It’s high and tight, but that is on purpose because the tissues will relax, and we are aiming for it to be symmetrical. It will get better.” I gazed at Whitney’s new face almost intellectually, mentally imagining how he had done the surgery and blocking out the emotional mama piece. Dr. Nolen went on to explain how he had successfully brought the muscles of the lip together and finally done a special technique on her lip to make it fuller. Fascinating really!





Poor baby. Immediately postop





David left to prepare for the next surgery case of the day, and the anesthetist came shortly after. She found me still staring at Whitney as she whimpered under the lights of the warmer. “She’s a thumb sucker isn’t she. It was the first thing she did when she woke up- tried to stick her thumb in her mouth!” We laughed, but she quickly admonished me, “Well, pick her up and feed her!” I couldn’t believe what I was hearing. I asked her if that is really what she and Dr. Nolen had decided. She nodded and helped me get Whitney out of the warmer and comfortable in my arms. I cannot describe what relief I felt as she nuzzled in. Her heart rate monitor which had been loudly announcing her high heart rate in the 170 range slowly showed her relaxation at finally getting to do what we both eagerly desired. Beep beep beep it signaled her calm. Down to 130, down to 110. It was so cool! The alarm turned off. Aside from the incredible scratchiness of the many stitches in her mouth, her latch was exactly the same. Prior to surgery, she had been unable to cheat and use her lips for suction, so she was not tempted to use her lips after the surgery, though pain probably would have put a stop to it as well.

She nursed twice in the first hour post-op, so after discussing the best course of action with Dr. Nolen, we decided to take our baby home. Somewhat incredulously, we walked out of the hospital at 1pm. We walked back up the steps and up the hill to our house, stopping a couple of times along the way to talk with students or staff who had been praying for her. The first student to see her was especially eager to see her because he himself had undergone bilateral cleft lip surgery at a similar age.
At home afternoon of the surgery
Sydney trying to make Whitney laugh


Maximum swelling was a couple of days after surgery

Over the past few months, she has continued to grow and change, and now people have commented that they cannot easily see that she ever had a cleft lip. We are so thankful to God for the people He put in our lives who were able to come alongside us during a stressful time.
Sitting!
Ornery, amazing, beautiful girl

4 comments:

  1. Yay! The Story. To God be the Glory, great things He has done!

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  2. I love this. I am always amazed at how God orchestrates things. Not always easy for us to walk the trusting path, but He is always good. Your girl is just lovely!

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  3. Thanks, as usual your sharing is a great ministry in itself. Blessings, Deborah

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