Melanie Noel

On Friday, December 17, 2004, my daughter Audrey and I set out early in the morning from our home in central South Carolina, bound for a smallish town in West Virginia where Audrey was to serve as a bridesmaid in the wedding of a college friend that evening. We arrived without incident, checked into a motel, dressed, and found the church. We saw various friends and enjoyed the lovely ceremony, followed by a reception. The next morning we left very early to start the second leg of our journey ... the one that would end in Williamsport, Pennsylvania, where my oldest daughter Stephanie was due to deliver her first child on Tuesday, December 21st. Steph's doctor had decided that, since the baby was full term and there had been no complications, she would induce labor on that day if necessary. That way, everyone could be home for Christmas ... including Stephanie and the baby. My husband and two youngest children would join us in Williamsport on December 23rd and we would all be together for the holiday.

We arrived in Williamsport in the early afternoon and found Stephanie feeling well, with only the normal discomfort of a nine-month pregnancy. On Sunday we went to church; after lunch we rested. On Monday Stephanie and I stayed at home while Audrey and my son-in-law, Joel, went Christmas shopping at the mall. They came home with a beautiful white rocking-horse ornament on which they'd had the baby's name painted in pink: Melanie. We tenderly and excitedly hung it on the tree, then played a board game until Stephanie got tired and went to bed. Audrey soon followed. Joel and I sat talking quietly for about a half hour before retiring, and while I don't remember our exact words, the substance of the conversation was this: we'd had so many blessings in our lives and so little trouble. Sooner or later there would come a day when we'd face a crisis ... the kind of crisis you hear about and read about happening to others. It wasn't a morbid conversation; we were simply reaffirming that God had been so good to both our families, and we knew that whatever happened the next day, He would still be good.

When I look back on that time I realize that even then I "knew" something was wrong, the way you sometimes just know it in your gut. I had not articulated my concern even inwardly to myself, much less verbally to anyone else, but if I had been prompted to and if I had been able to, my qualms would have centered around the grainy black-and-white ultrasound picture of Stephanie's baby taken early in the third trimester of her pregnancy. The picture had been affixed to her refrigerator for several weeks; I had first seen it on October 26th when I had driven to Pennsylvania for her baby shower. There was something about the baby's profile that did not look right to me, but then, the image was blurry and I figured I was just obsessing. I know now that in my heart I sensed impending trouble. I couldn't stop looking at the picture; the baby's profile did not look the way it was supposed to, but I couldn't say why.

Early on the morning of Tuesday, December 21st, Joel and Stephanie departed their cozy house for Williamsport Hospital. Audrey and I drank coffee, got dressed, and headed out into the blustery cold day about an hour behind them. At the hospital we found Stephanie and Joel walking the hallways of the maternity ward, trying to get something started labor-wise. Steph had experienced a twinge or two, but nothing more. As the day wore on things began to pick up speed, however, and by lunchtime Stephanie was in active labor. Audrey and I went to the cafeteria for a bite to eat, then lodged ourselves in the stale-aired waiting room with daytime television as the only diversion ... unless you wanted to look out the windows at the gray, bitter, waning day -- the shortest day of the year -- which I didn't. I had an unsettled feeling and all I wanted was news that Steph had been safely delivered of Melanie. Relatives called on my cell phone from time to time, hoping for news, but for a couple of hours there was no news to give.

And then, suddenly, there was news ... both good and bad. It was brought to Audrey and me by R., a nurse who also happened to be a longtime personal friend of my son-in-law's family. R., a single lady for much of her adult life, had eventually found her true love and had been married on October 20, 2000 ... the very day that Stephanie and Joel had become engaged. Joel had been a groomsman in the wedding just a few hours before giving Stephanie a beautiful diamond ring. R. and her husband had also attended Stephanie and Joel's wedding on June 30, 2001 ... but the most amazing thing to me was the fact that R. had been a nurse at Williamsport Hospital for so long, she had been present at Joel's birth in May of 1978. Fitting that R. should bring me the news of my granddaughter's birth ... albeit with tears running down her kind face. "The baby has a cleft palate," she began ... and that's when the world went dark for me. "The doctors think there is some kind of a syndrome ..." I sank to my knees in front of an oatmeal-colored waiting-room chair, and Audrey knelt beside me. We prayed for Melanie, and we cried.

I'm going to buzz right through this next part, because I can't give you all the details. I could sit here and type all night, until my fingers and my brain were numb, and it wouldn't give you any more insight and to you, it would only be minutiae. So let me tell it to you this way: Melanie was not breathing when she was born. We'll never know why, or for how long. What we do know is that she was intubated and began breathing on her own within seconds of her birth. That's when the doctors noticed her cleft palate. Her upper lip was intact; only her palate was open. And although her tiny pink lips were perfect, her jaw appeared too small for her face. Her enormous sapphire-blue eyes dwarfed her other tiny features, giving her an adorably elfin persona. After the initial shock and scare following her birth, we were thankful to learn that Melanie's Apgar scores were normal. The first time I saw her, she was crying as loudly as her little mouth and lungs would allow. It sounded a lot like a kitten's mew. A pretty mad little kitten, but still a kitten.

Although there was some talk that dark afternoon of sending the baby 50 miles away to Geisinger Medical Center in Danville, Pennsylvania, for more expert care, the wonderful staff at Williamsport Hospital dedicated themselves to Melanie and she was kept there. Almost immediately a diagnosis was made of Pierre Robin Syndrome, which, if accurate, would have explained Melanie's cleft palate and small jaw. Because a third problem often accompanies these two defects in children with Pierre Robin -- that of being unable to control the tongue -- on December 22nd the doctors sutured the tip of Melanie's tongue to the inside of her lower gums to keep the tongue forward and prevent her gagging on it. The sutures were removed after about a week, at which time she didn't seem to have any difficulty managing her tongue. It was a small victory but we took it.

Melanie was fed through a nasogastric tube until Christmas Day, when the doctors removed it and released her to come home after Stephanie thought she'd gotten the hang of using a Haberman feeder. We tried to have a normal Christmas but as you might imagine, it was difficult. As we all dropped into our beds, exhausted, that night, Stephanie was still on the couch in the living room, attempting to get formula down Melanie's throat. Since with an open palate the baby could not suck, breastfeeding was out of the question -- as was the use of a normal bottle. The Haberman is rather tricky, and none of us could get any food into Melanie ... only Stephanie had success. I slept fitfully that night and woke up a few times to check on her, always finding her on the couch trying to feed Melanie. The next morning Steph was so pale, she was nearly transparent. She had not slept more than a half hour. The doctor had said to get a certain number of ounces into Melanie, and Stephanie would not rest until she had done that. It was not going well.

At mid-morning a home nurse stopped by to check on Stephanie and the baby. I met her at the door and asked if there were any reason the baby could not have the nasogastric tube reinserted, so that the rest of us could feed Melanie and Stephanie could get some rest. The nurse agreed that reinsertion of the tube was indicated, and we all took a crash course in feeding Mel in this unnatural but effective way. Before long Audrey, who was completely smitten with her baby niece, had taken over the task of filling Melanie's tummy with copious amounts of formula administered through her tube at regular intervals. Erica enjoyed helping. We sent Stephanie to her bed with orders not to emerge until she was ready to get up. The next few days are a blur; I don't remember anything except being tired and being thankful. Thankful that as bad as things were, they were not any worse. Thankful that Melanie was at home and doing reasonably well. Thankful that there were some wonderful doctors and nurses looking out for my granddaughter. Thankful that my son-in-law's family lived in Williamsport and would be a tremendous support system for Stephanie.

When we left the little family on New Year's Eve and faced the 12-hour drive home, there were still so many questions. My mind skittered away from all of them. What emerged in the following weeks and months was basically this: Melanie would need surgery to close her palate, which would likely take place when she was about 18 months old. It was almost certain that she would experience developmental delays throughout her childhood and would require various types of therapy. As far as we knew her hearing and vision were unimpaired, but only time would tell if this were entirely the case. Melanie was extremely frail and it was a struggle for her to gain weight. She spent a significant amount of time in the hospital in January, when it was feared she was developing pneumonia. When I saw her next in March, I was alarmed at how tiny she still was. Over the next year she made progress slowly, but she did make progress. Stephanie bore the brunt of constant doctor appointments and evaluations, as well as regular home visits by therapists.

On a scorching day in July of 2006, when she was 19 months old, Melanie's palate was successfully closed in one operation at the Janet Weis Children's Hospital, part of Geisinger Medical Center in Danville, Pennsylvania. That was a bad day; it was so hard to see her in pain following the surgery. The next few days were rough too, but she started feeling better so quickly, it was amazing. In the 18 months since then, Melanie has grown stronger every day. Her small jaw has grown out to "match" the rest of her face without requiring corrective surgery. That little chin is so audacious. She has to wear glasses to correct a lazy eye, but they look cute on her. She walked late, but she walks. She has yet to say a word, but she knows lots of signs and manages to communicate pretty well. She is very well-behaved (most of the time) ... she loves people, especially other little kids, and she loves to laugh. She's wild about her aunts and uncles, and puppy dogs, and yogurt. She is, in every way imaginable, a precious little girl and a joy and a delight to our entire family. You might say we dote on her just a wee bit, around the edges ...

Stephanie and Joel and Melanie live in North Carolina now, less than a three-hour drive from our house. Last November Melanie stayed with her Papaw and me for four days, and I couldn't believe how cooperative she was and how easy to care for. I missed her so much after she went back home. Her little sister is due to arrive in April, and I am hoping that event will afford me an opportunity to take Melanie off her mom's hands again for a few days. We have plans to go to Riverbanks Zoo, where we will avoid the tiger exhibit but linger long at both the otters and the elephants. Consumption of ice cream and cold soda pop will be involved. I enjoy hanging out with Melanie because she reminds me of how fragile life is, and how determined human beings are in the face of all that fragility. She reminds me again and again to be thankful for each breath. Of all the many gifts I have been given, I count Melanie Noel, age three, among the dearest and most cherished.

Comments

[Deppfest]

And what a beautiful little girl she is, Jen. Angels come in all guises and sizes and for all sorts of reasons - this one came to a wonderful family who will always love her and be loved by her.

[Jenny]

Yes indeed ... thanks for reading, luv.

[Dixie]

Jennny,
I had never really heard all of the details of Mel's birth. I know it touched every emotion you own. We experienced many of those moments when my niece Clary was born. Like Mel, she had a cleft palate. She is 20 now and a beautiful and healthy girl. I am so pleased that Melanie is making such great progress. Your writing of the experience is beautiful and touching. We loved meeting Melanie when Andrew graduated. Look forward to time together soon. Dixie

[Sue O]

There is no end to mothering, is there? I can only imagine your pain, which was probably multiplied because you were feeling it for your daughter AND Melanie. She looks like an adorable little girl, I see a lot of her grandmother in her! Our seventh g/baby is due in a couple of months, not far from you, at Fort Bragg.

[Jennifer]

Sue O ... truly no end to mothering. It's wonderful and terrible. I would love to drive over to Fayetteville and meet you! Please stay in touch.