People ask me when Hill’s surgery is and it’s on Wednesday the 21st of April. Next week. Then they ask if we are ready or how I’m feeling and I can’t lie. Every time my response is the same. I’m a wreck. February was when I started to adjust to motherhood. March was the back to work, start a new job adjustment. Now April has become the month I worry myself into a spastic emotional cocoon where I don’t even have to talk about his surgery just simply think about it and I tear up. Last night Chip was out of town and Hill was asleep. I was getting ready for bed and I know you are never to wake a sleeping baby but I couldn’t help it. I needed my little boy to hold me. I needed to stare at him for the six zillionth time. I know his face better than my own. I’ve stared at him for the past 129,600 minutes since his birth.
It troubles me knowing that my little boy has to endure such a life changing surgery. Given, the surgery is for the better but he will never look the same. I feel it my obligation as his mother to etch into my brain every color fleck in his eyes, the abnormal shape of his nostrils and every curve of his misshaped lips. His huge smile will never be the same after next week and that breaks my heart. Although I know his new smile will melt my heart all the same.
Chip and I never thought we wouldn’t repair his cleft. It’s just so sad that the perfect baby God made wouldn’t be considered normal if he didn’t have his lip repaired. It’s totally cosmetic. I notice my reaction to peoples’ faces or lack of reaction when they look at him. Half the time it doesn’t faze me because I never look at him as having a cleft, I truly don't even see it. Sometimes if I feel they are studying him I’ll tell them he has a cleft lip and will have to have surgery. Chip has more of a prompt reaction. As soon as someone looks at Hill he points it out to most everyone saying, ‘he’s gotta have a little lip surgery.’ We take opposite approaches; we each handle the situation different.
I was at a party last weekend and Hill was with me. I had one mother come up to me randomly and tell me that she has a special needs child as well. He has had a massive amount of surgeries for limb repair and reconstruction. We talked about how she handled things mentally before his surgeries. She told me she was just as much a wreck as I am now. She did say something that really hit home though. She said, I couldn’t have done anything different to prevent the disabilities he has, but I can do something now to help him through them. I feel that way too. It was a simple way of saying all the things I ramble on and on about. You cannot fathom how blessed we are...and we know it. Unfortunatley, it doesn't ease my nerves or take away the emotional toll.
Most people are upset I haven’t kept up with my blog. I too am upset. I think about it every day and am making mental notes on what all to write about. We have just been so busy (which is a good thing for me right now) but I have taken over 1,000 pictures and plan to post them eventually. I haven’t forgotten that I’ve only posted up to his birth story and nothing afterwards about how he lost a lot of weight after we left the hospital and the doctors we visited and how going to New Orleans Children’s Hospital was the most humbling traumatic heart wrenching moment of my life.
There are still many many more posts to come, friends. I appreciate your patience as I tackle this huge weight that lays on my heart and mind. Once we get into recovery mode and settled then I promise to be better at keeping everyone up to date.
In the mean time, thanks for letting me vent. This has been the longest week in the history of weeks and I need your prayers. We need your prayers. Pray for Dr. Shell and his staff at Le Bonheur Children’s Hospital, pray for my sweet boy as he is operated on, pray that he comes out of anesthesia not scared, pray that his pain is manageable and that he can take to the way he has to eat for a couple of weeks. Pray for a speedy recovery and minimal scaring. Pray for my sanity and strength as I endure this emotional rollercoaster. Pray for Chip as he is always the rock in our family.
If I don’t get to post between now and next Wednesday, April 21st we have to be in Memphis at Le Bonheur at 5:30am (we will stay the night before in a hotel) and his surgery is scheduled for 7:30 am. Another thing to add to the multitude of prayer requests I have is that he cannot eat after midnight the night before. Pray that he is not starving before 7:30 Wednesday morning. They say that technically his surgery is an outpatient procedure but because he will have to eat differently (more than likely through a syringe) they keep him over night to make sure he takes to the new way of feeding. We should be home by Thursday evening.
Thank you all for everything. If you want to Google Hill’s condition it is called a right unilateral incomplete cleft lip. The procedure they will be doing is the Millard operative technique it's more or less a recess of one lip and an advancement of the other lip to where they symmetrically fall into place.
I found two great articles that explain what the doctor will do for Hill. Some parts of Article 1 are sort of confusing but lays it out from a technical aspect. Some of it is irrelevant, but if you follow the chart it makes sense. Article 2 seems like a paper a medical student did and is informative. It has pictures that you may find disturbing. Article 1 and Article 2
Hill will probably have to wear elbow immobilizers for a couple weeks so he doesn’t touch his mouth. For those of you that have been around him lately knows he loves his hands in his mouth at all times. It will be sad to see my little bear possibly having to wear this Elbow Brace
Doctor Shell, his plastic surgeon, has a website too. Click here
Dr. Shell has done thousands of repairs. He wrote a book called pediatric plastic surgery. He was over the cleft team at University of TN for years and also he does Operation Smile where he goes overseas to third world countries to repair clefts. Not to mention all the repairs he's done personally through the mission trips he goes on through his church. I have 100% faith in his ability.
He also does Botox for soccer moms and if you check out his website it looks like you can get 20% off of breast augmentation. If you decide to do so tell him I referred you. We hope this will be Hill's only surgery, but if he has to have other nose jobs in the future maybe Dr. Shell will give us a discount for all the referrals we’ve sent him.
If you have any questions about Hill's surgery please let me know. I will try my best to answer them. Keeping people informed and having open lines of communication seems to be the best way to educate people on cleft children and what Hill will endure. I don't mean to sound like a Sunday morning educational video or the 19 cents a day, same as a small cup of coffee ethiopian feed the children commercials, but really. Since our discovery of Hill's cleft I have met more people that this affects and how common it really is. Chip and I have offered friendship and phone numbers to both Dr. North's office and Women's Hospital for patients that struggle and jump on this rollercoaster into the unknown and have questions from a parents perspective. If it weren't for people that have experienced or are going through this with me I would be even more so of a wreck than I am now. Support, prayers, family and friendship is the key.
Love to you all!