Hudsyn was born September 23, 2016 with a cleft lip and palate. We did not know prior to her birth that she would be a cleft baby, so we were quite shocked when she arrived! She has proven, however, from day 1, that she is stubborn, sassy, and determined.
Lots of babies with cleft lips and/or palates are unable to eat on their own very well if at all; but when it comes to her food.... Hudsyn doesn't mess around! (She comes by it honestly) :) In the hospital shortly after she was born a nurse brought us a bottle with a nipple they said was for babies with clefts; however, we were given no special instructions. She tried to eat, but because we weren't putting the nipple in her mouth the right way, she wasn't getting much. But she didn't give up... she continued to let us know when she was hungry! We later figured out that the "pigeon nipple" we were given that day was supposed to be put in her mouth a certain way to allow her tongue to "push" the milk into her mouth as opposed to the usual sucking motion of babies who do not have a cleft. Once we had that figured out and were using it correctly, she chowed down! And although she doesn't eat much at a time still, she eats fairly often during the day and as you can tell from her precious chubby cheeks, she doesn't miss a meal. :)
When she was a couple of weeks old we saw a surgeon, Dr. Kevin Smith, at The Oral Facial Surgery Center in Oklahoma City. He came very highly recommended and I found nothing but positive information about him in my research. We loved him from the beginning. He started with a slide show explaining exactly what a cleft lip and/or palate is and the fact that there truly is no determined cause for either. He was very reassuring and confident that he could effectively repair both Hudsyn's lip and palate. We discussed the timeline we were probably looking at and he shared previous experiences in which he learned what works best in different situations with us. He was very encouraging! So, even though Dr. Smith is out of network with our insurance, we began the process of setting a surgery date for the first lip surgery, the "adhesion." After some haggling with insurance, that day was determined and is quickly approaching.
Monday, December 12, the sweet baby girl we have fallen so in love with will enter an operating room to begin the repair of her cleft lip. Although I am so excited to begin this journey as I know it will prevent lots of future physical and emotional pain for her, I am struggling with the fact that I will never see this exact smile again. When Hudsyn smiles, she smiles all over and it would make anyone's day! Although this experience does not define her, it is part of who she is and who she will always be. I already know she is strong and determined and cannot wait to see God work in her life, but part of me is sad to know I won't see this exact precious smile again.
If I understand the procedure correctly, Dr. Smith and his residents will join both outer layers and one inner layer of the top lip. They will leave the muscle layers as they are this time to prevent too much pulling on the skin and stitches. They will also begin to form the nostril and will put a nasal stint in place to help it maintain its shape as it heals. Then, approximately 6 weeks later she will return for a second surgery where they will also join the inner muscle layers of the upper lip and likely do some additional work on the nose. I have been so nervous about what she will look like after surgery. I can't imagine seeing my baby's face all bloody and "cut" for lack of a better word. Over the last few weeks I have googled so many things trying to find a picture of a baby immediately following surgery with no luck. Then, a little girl I keep up with through her mom's facebook, who is a few months older than Hudsyn had her first cleft palate repair surgery Wednesday and her sweet mom posted a picture of her. Her cleft is not exactly like Hudsyn's, but is very similar and I think now I can be somewhat prepared to see her after surgery at this point.
I think it is so ironic that despite being "due" to be born in October, Hudsyn came into this world during the month of September, which just happens to be "National Craniofacial Acceptance Month." Her birth month couldn't be more fitting and I know this baby girl is going to help raise awareness in the future. Cleft lip and/or palate is very common, affecting approximately 7,000 babies each year while approximately 6,000 babies are affected by Trisomy 21, also known as Down Syndrome. So, according to the CDC, cleft lip and/or palate occurs more frequently than Down Syndrome, yet the awareness of this birth defect is nowhere near that of many others. This is likely because it can often be repaired at a very young age and by the teenage years there is little evidence of the cleft(s).
I will do my best to post updates here on Hudsyn's surgery and progress as I can. I know we have so many people thinking about and praying for all of us, and we could not be more grateful. We are blessed with a wonderful community and amazing friends and family. I have witnessed the giving nature of our small town my entire life, but have never had reason to be on the receiving end. It is humbling to know that so many people care about and want the best for us, and I am so proud to be a member of this community.
We will so appreciate any thoughts and prayers we can get over the next couple of weeks!
Bailey, what a beautifully written article by a brilliant researcher and writer! We are often perplexed with life's outcomes, but the result may hold within it not only answers for young Hudsyn (I love the spelling of her name!), but an outreach from your perspective, Bailey, that will touch many lives with far-reaching success. I will continue following Hudsyn's journey and your research and writing. I wish the very best ahead for both of you.
ReplyDeleteGood luck tomorrow sweet Hudsyn! May God's presence be with you all for peace and healing.
ReplyDeleteFollowing along & love this heartwarming story
ReplyDeleteThinking of all of you "He Perfects those things that concern us" ♥️