A Mix of Memories as I learned that my first grandaughter has a Cleft Palate

May 2, 2012
I learned yesterday morning  that my daughter in law was going in for a c-section later that evening.  The baby was breach and when they went to do the inversion, they did an ultrasound and saw that the cord was wrapped around her neck. . .twice. I wished they would just hurry and get her out immediately!  I hated the thought of waiting, even a moment, knowing that our precious little granddaughter was in danger. 
   The c-section was scheduled for 6:00pm Utah time and the minutes seemed to crawl by.  How long do c-sections take?  Seven o’clock came and went.  Shortly after that, there was an eager, not-to-be ignored pounding on our door. “Let me IN!  I have news!”  Tricia, my oldest child and only daughter, was obviously in a huge hurry, and we thought it odd that she’d have news before we got it.
But it was true.  Baby Girl Stephenson had finally arrived!  She was in the NICU because she was having a little trouble breathing, but that’s common in c-sections.  They’re lungs aren’t compressed by the birth.  For a moment, I was still mystified.  Why did Aunt Tricia know and we didn’t?
“Rob said he wanted to call me first to tell me that there was finally another Stephenson girl born, (it’d been over 32 years!) And then she told us that like the most recent Stephenson girl,(her) the baby has a cleft palate. 
   When I heard it, I was filled with a strange, warm, sentimental feeling. Just then, the phone rang and it was Rob, expecting to announce the baby’s birth. I suppose he was a little disappointed that Tricia had scooped him, but he seemed to be taking the birth and the cleft very much in stride. 
   I remember well the long nights of feeding wakeful Tricia. She seemed to see no reason why midnight to four was not as good a time as any to get to know each other.
We fed her with a device that looked suspiciously like a gravy baster. We rested the piece of surgical tubing on her tongue, and as she swallowed, (a function that we were able to watch through the cleft in her upper lip) the movement of her tongue would release a few more drops of milk. We soon learned to keep the right amount of gentle pressure on the rubber bulb so as not to drown her or frustrate her.
 But it wasn’t a drowsy job. She sat almost entirely upright clutching the tube with her delicate lady fingers. When she was finished, she gave up her burps on my shoulder promptly and defying common expectations, rarely spit up.  But even so, feeding wasn’t a warm snuggle in the dark with Momma.  To Tricia, it was invigorating! She’d look at me as if to say, “Now what do you want to do?”
The answer was always very clear in my mind, but to Tricia, sleep was something you surrendered to only when you were absolutely out of other options. 
She was also a little bit of a thing and the doctors didn’t want to do the lip repair until she weighed ten pounds. But since humans grow when they sleep and she HATED to waste her time that way, it was a slow process. She was about 14 weeks when they finally closed the cleft lip.
   That started a season of almost a year and a half where her Z shaped scar on her lip was not especially noticeable, but her palate was still wide open. In the normal function of eating, food would migrate through the cleft into the sinuses and she would have to sneeze it out.  Rule of thumb number one, Rob and Marseille.  Never give a kid with a cleft palate an Oreo before going to church. Not pretty!
They used to wait longer to close the palate than they do now, and she was 19 months old.  She had already started to talk and I was concerned that if she learned wrong, it would take years of speech therapy to correct it. But when they brought her back from the palate repair, (they just closed the soft tissue, they don’t actually bridge the cleft with bone) she was able to say “Daddy” as clearly as anyone. It seemed that though she could not form  plosive sounds (B,P,D,K,G etc), she was naturally trying to form them, using the proper muscle and mechanism.  When the surgeon lengthened the soft palate with a pharyngeal flap, it instantly began functioning normally.

Babies with with cleft soft palates, (like my granddaughter) often have malformed Eustachian tubes, (that keep air in the middle ear). So if milk or food migrates into the tube, it causes inflammation which causes swelling, which causes the tube to close off. If there is a void anywhere inside the body, it soon fills with fluid, and the fluid in the middle ear causes pain.  Most cleft palate babies need ear tubes. But ear tubes come with risks.  Tricia had normal hearing until the repeated installation of ear tubes and the type of tube used damaged her drum irreparably.  They tried to repair it twice but each time it failed, since the Eustachian tube was still not functioning well.
   Tricia tolerated all the procedures and surgeries like a champ. She developed a high pain threshold and never complained.  She was born loving books and I have fond memories of lying on her hospital bed  with her, reading Ann of Green Gables together as she sipped apple juice.
    I suppose those long hours together are the root of the sense of warmth and peace that I felt when I heard that our little Makayla has a cleft palate.  She and her Mommy (and Daddy too,) are going to spend a good deal of quality time together. A terrific bond will form between them and each will learn even better to depend of the Savior when times are tough.
And there will be tough times. Parenting is no picnic in the easiest cases,(do those really exist) but nothing else can elevate us a little lower than the angels than midnight (all night) feedings and countless acts of selfless, tender service. Nothing gives empathy better than suffering a bit oneself.
 I wonder if Rob and Marseille would understand if I were to extend the special congratulations I feel deep down. I know what this will help them become. I know the look and feel of the Lord’s polishing tools. Birth defects are pretty heavy grit sandpaper.
Maybe they wouldn’t understand now, but they will. They will.

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5 Comments

  • Reply Rob and Marseille May 2, 2012 at 10:46 pm

    I admit, I was frustrated that Trish burst in and shared the news before me. I told her as we hung up that I was calling you right then. Oh well, she knows as well as anyone what this means for everyone involved.

  • Reply Janet Warren May 3, 2012 at 11:37 pm

    Beth: In your story about the Bench Babies you mentioned that you thought Jeffrey would just develop as he was meant to. In retrospect, I believe you were right. However, those years of therapy and one-on-one time with Jeffrey created a bond. We love those we serve and I served him more than any other person on this earth. Rob and Marseille will develop a bond with this sweet child because they will serve her. Her Aunt Trish will become so important in her life. This has to be made easier knowing what a beautiful, talented, smart woman Trish turned into. I love your family and I will never forget your kindnesses to me this past week. There are no coincidences, of that I am sure. The Lord's ways are not our ways, but they are always better. Love to your family, Janet Warren

    • Reply Sunny January 8, 2017 at 8:00 pm

      I&8271#;m even now studying through you, but I am improving me. I surely love reading every thing that is written inside your blog. Hold the actual stories on its way. I adored it!

  • Reply Beth M. Stephenson May 3, 2012 at 11:47 pm

    Yes Janet, the therapies of love, time and service are unequalled, regardless of the visible outcome. I know very well that you made Jeffrey your highest priority and served him with your whole heart. I'm sure that your love is important to him, especially now. Yes, you're right, difficulties that seem like punishment or burdens are exactly what we need to develop our ability to love and serve. I used to joke that after Tricia was born, I lost my girl recipe. I guess Marseille found it! I love you, too, dear friend.

  • Reply Anonymous May 11, 2012 at 12:51 am

    It was so special for me to visit Rob, Marseille and Makayla in the Hospital, and my heart just burst when I met her. I was so impressed with their positive attitude and peace that I felt there–something I know will carry them a long way. XO Mim

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