Thursday, March 11, 2010

A wonky Lip



Many fellow bloggers use their blogs as a form of journaling, to record the events that are occurring in their lives. I'm writing this blog to share information, but also to remember the details of life that so easily slip away.... especially in the busy, sleep deprived days of being a new mommy. I'm sure many of you will find this post less than exciting, but I do want to try to remember all the details of Timothy's first few months.

As soon as Timothy was delivered, the doctor commented on his cleft. We were relieved to realize that it was just his lip, and not his palette that was effected by the clefting. Almost immediately, we started receiving information about the process of getting it repaired.
At first, I really didn't care. I was more focused and concerned on getting Timothy out of the NICU, helping him eat well and gain weight, and getting rid of the jaundice that almost put us in the hospital again.

But once the chaos surrounding his early birth cleared, I started doing some research on cleft lips. Between the information for the staff in the NICU, our pediatricians input, and the information on line, I quickly discovered that one of the biggest debates in dealing with a cleft is the timing of the repair. Someone in the NICU told us it would be taken care of around 12 months. Another nurse told us 6 weeks. Our pediatrician said 6 months, and the ENT told us 9-12 months.

A couple weeks ago, we went to the ENT who started us on our journey of cleft repair. He confirmed what we already knew, that Timothy's cleft is very minor. It's actually not even a complete cleft. We were encouraged that this would make the repair process a little easier. Since the cleft was an incomplete cleft, we were referred to plastic surgeon, rather than the cleft team.

Today we met with the plastic surgeon. I left the meeting feeling very informed and I also felt like we had a plan in place.

The plan for now is that we wait for Timothy to get a little bigger. The plastic surgeon said he wants Timothy to be at least 10lbs before the surgery is done. Timothy will have a well visit with our pediatrician on April 4th, and another visit with the plastic surgeon on April 8th.

The surgery will most likely take place between April and August. The surgeon encouraged us that taking care of it sooner, rather than later, will help aid the minimizing of the scar. He did mention that many children who have clefts are at a higher chance of needing tubes put in their ears. Considering both Micah and Benjamin have had tubes, I was already expecting Timothy to need tubes at some point anyway. If possible, the plastic surgeon would want to time Timothy's cleft repair for the same time as tubes would go in.
I learned today that the surgery will be more involved than I was expecting. We've been through several surgeries with our kiddos. We've had the minor tube placements to Benjamin's major craniotomy. I was anticipating the cleft repair surgery to be similar to the surgery of getting tubes put in..... go in, surgery, 2 hours later you head home. However, we learned that the surgery will last 1-2 hours, and that there is a good chance we might have to spend the night in the hospital. Even though Timothy's cleft is incomplete, the surgery to repair it is just like a complete cleft repair. Since there's extensive work being done on his lip, and because he is getting all of his nutrition by sucking, he will be closely monitored for dehydration, which is why we might have to spend the night.
I also learned that this may not be the only repair surgery Timothy will face. When he's school age, he might need to have his lip done again. And then depending on how his nose is growing, he might need rhinoplasty right about the time he hits adolescents.

We've been asked, "Why not just leave it?" And after hearing about how involved the surgery is, and how he might face more surgeries, I've thought about just leaving it. I think Timothy is beautiful, and his lip is sweet and endearing. But then I think about 13 year old Timothy. Imagine having an obvious defect while dealing with all the other "excitements" of adolescents. I also think of 22 year old Timothy, going for job interviews. Though I hope and pray he is a grounded, godly man, surrounded by strong, godly people, odds are he will be judged first by his appearance. This is his smile! His first impression. And even though this isn't going to be quite as simple as I originally though, I feel more confident that we are making the right decision by doing the repair surgery.

7 comments:

Charla (SHar-la) said...

Not that it really matters, but I wholeheartedly agree and support your decision to do surgery to repair his lip. You're being level-headed and your decision is reality-based. The world is certainly not idyllic, and if that were the case I know full well you would choose to just leave it be. I agree, it is very endearing and part of who he is. In an ideal world, everyone would see him like his momma does! But as a teacher you know just as well as I do, that no one loves or sees your children like you do. You're such a good mom, Kierstyn.

Julie said...

I think Timothy is absolutely gorgeous. Such a sweet sweet face he has! But I totally understand your point of view. And I agree with Charla....you're such a great mom.

Brian, Steph, Jada, Kiva, and Judson said...

amen girl...you are a fabulous mom and how I would LOVE to squeeze that little man of yours sometime! I love how God truly gives you all the grace you need in each decision...I am so glad for that! Thanks for being a good example of listening to the Lord and being brave :)

Kristy said...

His little lip is so endearing - and I've only seen the pictures! I totally agree with your viewpoint, and I think you've expressed it as only a sweet mommy can!

Shannie said...

I have one thing to say to 13 and 22 year old Timothy... scars are hot

Lindsey: Mama of Andrew, Adam, and Ally said...

You are right on Momma! Having had facial reconstruction myself I think you are seeing the big picture and accounting for all the ins and outs and looking at the long term of what's best for him. No one wants to see their baby have surgery and of course he's perfect already but one day he will thank you for thinking of the long term. I remember after my skin graft what it was like for people to "look" at you differently and although I know the people that knew and loved me saw me as normal, it was everyone else out there and I felt it.

Follow your gut and you can't go wrong.

Timothy is perfect and so beautiful!!

Katie Rae Snow said...

He is a beautiful baby boy. I pray you peace in whatever you decide!