I found out that I was pregnant in March of 2010 with my second baby. My older son, Dylan, was 6 at the time. Everything was going well. At 19 weeks we found out we were having another little boy. Around 29 weeks I went in for a routine ultrasound and my world changed forever.
I remember watching the giant flat screen TV they had on the wall for the mommy to watch and the ultra sound tech scanned his face, but then wouldn’t stay on it very much. In that quick scan, though, I remember thinking to myself how he kind of looked like a little bull dog. But I figured it was just the shadowing of the scan. Once the ultrasound was over, I had a routine consultation with the doctor to discuss the ultrasound. I sat on the table ready to hear “Everything looks great!
He’s growing at the proper rate and his due date is still November 3rd.” What I heard was NOT what I was expecting. The doctor came in and looked solemn. I was immediately on alert. She sat down and told me that he was growing normally and he looked great… she paused. I cut in and said “but?” To which she responded with “It appears that he may have a cleft lip and potentially a cleft palate as well.” My heart fell to the floor, shattering into a million pieces. She continued to ask if there was any family history on either mine or my husband’s side. At this point the tears of flowing out of my eyes and I can’t even muster the “no” to answer. My husband then continued to answer all of the questions. I cried for the next week.
We made an appointment for a specialist to take more invasive, high tech scans to see the extent of his cleft. I nervously sat in the waiting room, preparing myself for the worst and praying for the best. I literally chanted in my head “Please Lord let it only be the lip. Please Lord Let it only be the lip.” I sat there telling myself “it’s only the lip, it’s only the lip” in hopes that the power of positive thinking would change whatever might be going on with my unborn love. Finally, after what seemed like forever, we got called back. It took an hour and they scanned EVERYTHING. From his head to his toes and everything in between. They scanned his brain, his heart, his liver, his kidney, his bowels, his lip, his mouth, his nose… his everything. I was as anxious as anxious can get. At last the doctor comes in and is ready to go over the scans with me. “Everything looks great. No problems with his brain, heart, liver, kidney or bowels.” Good. “He definitely has a cleft lip, but it appears that his palate is intact.” GREAT! We leave a very happy and very relieved couple. We were ready to handle whatever it was we needed to, but it was a lot easier to cope with just the lip.
So 10 more weeks go by, another ultrasound and several routine visits. Then on October 30, 2010 at 9:35am, after just 5 1/2 hours, Hunter Ryland Morgan made his big debut. I remember telling the doctor and nurses at least 5 times during labor about his lip. I knew what to expect and I didn’t want anyone to be shocked or feel they had to deliver “bad” news. I was prepped and ready and couldn’t wait to see his wide smile. And what a smile it was. He was perfect. 7 lbs 14 ounces and 19 3/4 inches. The doctors checked his palate to make sure it was intact and sure enough it was.
It turns out I was even luckier than I thought. He took right to nursing. He had a unilateral cleft on the left side, so the nursed better on the right where his “gap” was down. After a few different nurses and then a lactation specialist came in, we figured out a good way to hold him so he could nurse better on the left so I didn’t get too lopsided and engorged. It was just a matter of holding him like a football. Not the most nurturing feeling, but whatever made him happy, I was willing to do.
After 2 weeks of getting to know each other and resting up, we met with his surgeon. She determined he would definitely need to see an orthodontist before surgery, which would be when he was about 3 months old. For the next 3 months we went to the orthodontist every two weeks. We started out just taping his lip together so his left nostril could form a little better. It was very flat. Then he got his mouth piece. They took a mould of his gums and created a little retainer. A week after that, they added a bar to it with a bulb at the top of it. The bulb would go into his left nostril to help it form. He looked like he had a lip ring. Haha. Throughout all of this he still nursed! We had a bit of a struggle with the bottle though. I had to go back to work when he was 6 weeks old and I wanted to use the Platex Nurser System like I had with my first son. Since Hunter was nursing, the doctors told me to go ahead and try it. We tried the silicone nipple. No go. It was too hard and he couldn’t get a good suction. We tried the latex kind. He could latch onto it, but he would fall asleep after working for 30 minutes. So we tried the fast flow and BINGO! It worked and we were ALL much happier after that. I could go to work and not worry he wasn’t eating and then come home and nurse him and he’d still take right to me. Even after his mouth piece “nose ring” he continued to nurse and take the bottle without any problems.
The only thing I kept noticing, however, was that when he’d spit up (which was a lot- he had acid reflux too, poor guy) it would come out his nose. His pediatrician said it was normal. The surgeon, at first, said it was normal. I’d been working with infants and toddlers for over 5 years and I knew it was not normal. I was sure there was something wrong with his palate, but they kept assuring me it was normal. So I asked the orthodontist one day if she could try and glance back there. Sure enough she saw something. She said it looked like his uvula might have been cleft, but he was screaming as she tried to look so it was hard to say. She put it in her report and sent it off to the surgeon. At my final appointment with the surgeon, she mentioned the report and said that she would take a good detailed look while he was under the anesthetic.
Then on February 10, 2011 we drove to the hospital and at 9am they took my little 3 month old “fuzzy headed gummy gap face” from me. I cried. I bawled. I lost it. And I’m proud to say I gained composure in less than 5 minutes. For the next 2 hours I sat in the waiting room with my husband, my father and one of my sisters. They helped me keep my mind off what was going on behind those doors. We were actually just about to start a game when the doctor came out. She said he did beautifully and that everything went better than planned. She went through the explanation as to how to take care of him and yadda yadda yadda. I’m glad my husband was paying attention because my mind was on one thing, his palate. Once she was done explaining, I think she could tell what I was thinking because she looked at me with an “ok, I got it” kind of look and said that he did, indeed, have a sub mucous cleft palate. “I KNEW IT” I said out loud. I had known it all along so I was not shocked or surprised or taken aback by this information.
As we were handling the lip and seeing all the doctors for his lip, we also saw a hearing specialist because Hunter had failed multiple hearing tests, at first in both ears but as he kept growing, he began to have some hearing in his right and almost none in his left. They said that he had a lot of fluid in his ears and that could be preventing the eardrums from vibrating. He needed tubes. But of course, the ear doctor didn’t work with the pediatrician so he would need it to be done in a separate procedure. So 3 weeks after his lip repair, he went back under for ear tubes and a full hearing test. I wasn’t nearly as emotional for this procedure because my older son had tubes done and I had tubes done twice as a child. It did bother me that he would be under anesthetic again for a longer period than normal, but I knew he hadn’t had problems before so it would be fine. Again I sat in the waiting area with my chants and prayers “Lord, please let him hear. Lord, please let him hear.” “He will hear. He will hear. He will hear.” Well, it worked again. The doctor came out and said that they drained out all of the fluid and he passed the hearing test, showing just a minimal amount of hearing loss at louder decibels. I just figure that means if I ever have to yell at him, he can turn his left ear to me and tune me out haha.
Now Hunter is 7 months old. He is eating, drinking, babbling, crawling, pulling to a stand and cruising along furniture. His scar is barely noticeable already, and he is beautiful. We go back when he is 9 months to meet with his whole cleft team, the surgeon, the orthodontist, and the feeding specialist, to see whether or not he needs his sub mucous cleft repaired. If he is eating well, swallowing well and doesn’t seem to have too much difficulty “talking” then they won’t need to. However, if he doesn’t swallow thicker consistencies well or he seems to have trouble with speech or shows that he might end up having speech problems, they will. So I will continue my prayers and my positive thinking chants and hope for the best. But for now, I will just enjoy watching him grow and learn. I miss his “gappy smile” everyday, but I know in my heart his new smile is for the best. And it’s a beautiful, contagious smile.