You Are Special

"The stickers only stick if they matter to you.  The more you trust my love, the less you care about their stickers."

"I'm not sure I understand."

Eli smiled.  "You will, but it will take time.  You've got a lot of marks.  For now, just come to see me every day and let me remind you how much I care."

Eli lifted Punchinello off the bench and set him on the ground.

"Remember," Eli said as the Wemmick walked out the door, "you are special because I made you.  And I don't make mistakes."

Those words are from a very sweet book, You Are Special, given to us as a baby gift when Timothy was born.  When the book was given, the giver didn't realize that Timothy had a cleft lip.  A couple weeks later, after she met him, she came up and apologized, afraid that she had overstepped a boundary.  I told her I thought it was providential and that we loved the gift!

This month marks the 4th anniversary of Timothy's cleft surgery.  I found myself choked up more than once while reading You Are Special, especially as I read the last sentence.  I know my God is good.  I know my God doesn't make mistakes.  But as a parent of a child with a very obvious deformity, I did find myself questioning God's wisdom in giving Timothy a cleft lip, especially after the road we walked with Benjamin's deformity.  But even as I handed my three month old over for surgery, I knew there was a reason.  And I prayed this verse over my son, hoping that the Lord would be displayed in his life and in our walk.

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." John 9:3

Craniofacial Awareness Month (a day late!)

September, Craniofacial Awareness Month, quickly slipped away from me. But I didn't want to not talk about my sweet cleft baby! So just pretend it's yesterday.

We had no idea that Timothy would have a cleft. Sometimes, you can tell on the ultrasound. Since his was and incomplete cleft, and because we didn't get any full face shots, it was impossible to tell in utero.

You can imagine our surprise (and that's a nice way of putting it!) when, immediately following his surprise birth, the first words we hear are, "He has a cleft." Though this was about the time I got some really big drugs to keep me from totally freaking out, I believe I looked at Curtis and said, "Are they kidding?!" Surely, I hadn't delivered another baby with a birth defect! I felt totally overwhelmed. A large part of that was because of his surprise delivery at 35 weeks and the very tough c-section I was in the middle of. Just minutes before I had been worrying about his lung development. Now I was worried about that (he had quit crying and was turning some fun shades of blueish gray) AND the cleft.

While the neonatologist was working on Timothy in the OR, he told us that his palate was unaffected. I knew that was a good thing, but I wasn't even entirely sure what that meant.

After Timothy and Curtis left to head to the NICU, I remember feeling very nervous about seeing him. Though I had a quick peek at him before he left, I couldn't remember what he looked like (thank you drugs!). As they wheeled me to the NICU, I remember feeling like a really bad mom. Would I immediately fall in love with him? Would I only be able to see the deformity? Would he be okay? What would all this mean for my family? I was scared.

The moment I saw him, I don't remember seeing the cleft.

The love of a mother is an amazing and mysterious thing. The moment you see the child you've been carrying, there's an overwhelming and overpowering love. Though you've only just met this little person, you've known him for months.

The love of a mother of a child with an obvious deformity is even more mysterious and amazing. When I see pictures of other cleft babies, there's always a moment of shock. I see their cleft first. But that's not how it was with Timothy. I saw him. The cleft was just part of him, kinda like the fact that he had 10 fingers. Without a second of doubt, fear or hesitation, I was madly in love with this little person. Our immediate concers for Timothy had nothing to do with his cleft. There was the concern of his preemie lungs, the blood in his stomach and stool, the horrible jandice that almost kept him from leaving the hospital with us and almost put him back in the hospital. I just about forgot about his cleft lip.

I do remember having a conversation with Curtis while we were still in the hospital about his cleft. Though there were a lot of unknowns and I didn't like the thought of surgery, we quickly decided that we would repair the cleft when possible.

When Timothy was a few weeks old, we started seeing a plastic surgeon. With him, we learned so much more about Timothy's cleft, and made a plan to repair it.



Though I wouldn't choose to have a cleft baby, I quickly fell in love with his wonky lip! This caused lots of emotions when it came time to "fix" it. I share some of these thoughts in this previous blog.

While Timothy was in the NICU, we heard lots of different scenarios for what would happen during the repair, including one that involved a couple stitches, that's it. Timothy's surgery lasted three hours. The doctor not only repaired the cleft, but he also moved the base of Timothy's nose. There were layers of stitches in his lip and up to his nose. The surgery and the recovery were hard, and painful for Timothy. But God was so gracious! We left the hospital less than 12 hours after Timothy got out of surgery. We had been told to expect to stay in the hospital for 24 hours.

Timothy has continued to see the plastic surgeon in the months following his surgery. As of his last visit, it looks like he won't have to have any more surgeries! There's a possibility that we'll have to redo the surgery when he's 5, and we won't know till then if that's going to happen. It all depends on how the scar extends as Timothy grows. Then, when he's 13ish, we'll look at the possibility of rhinoplasty.

As with Benjamin, we are so thankful for how God guided the hands of the surgeon in Timothy's surgery! It's easy for me to look at the things Benjamin and Timothy (and Curtis and I) have had to go through with these deformities, and get discouraged, frustrated, and annoyed with the plan of God. But it's impossible to feel that way when I look back and see how tenderly and graciously God has cared for the boys and us during those tough times. Though it hasn't been fun, and I wouldn't have chosen to walk the roads we did, I'm thankful for them.

Craniofacial Awareness Month

September is Craniofacial Awareness Month. And since I have two boys effected by craniofacial issues, I thought it would be a perfect time to talk a little bit about it.

What is a craniofacial disorder?

A craniofacial disorder refers to an abnormality of the face and/or the head. Craniofacial differences can result from abnormal growth patterns of the face or skull, which involves soft tissue and bones. A craniofacial condition may include disfigurement brought about by birth defect, disease or trauma.

Benjamin had craniosynostosis. That particular deformity causes the sutures of the head (soft spots) to close too early, leaving the rapidly growing brain squished. Benjamin's head was growing, but not the way it should. His head wasn't growing any wider, it was just growing out, causing his forehead to protrude.

Timothy, as I'm sure you all remember, had a unilateral incomplete cleft lip.

We were unaware of either of the deformities till after the boys were born.

Though the process of dealing with the deformities has been a tough one at times, our family has much to be thankful for. Not once were the boys in life threatening situations. Though Benjamin's squished brain could have caused a host of issues, it didn't. Timothy's cleft could have been so much worse, but it wasn't. Both boys have undergone major surgeries to fix these deformities, and have done very well through surgery and recovery.

While we are abundantly thankful for God's protection, it's been hard. It hasn't always been an easy or pleasant journey. So this month, I was to take time to share with you my thoughts and experiences in hope of shedding more light on these issues.

Before and after

An odd mental process

Imagine the first moment you meet your new son or daughter. That sweet moment when you glimpse the tiny life that you've been carrying inside of you. You already feel like you know himut now you REALLY know him

For c-section moms, that moment is frequently different, since you're in the middle of major surgery. But sweet none the less. With Timothy's birth, there was a lot of anxiety and stress, since he was arriving a month early. Coupled with a really rough delivery, I was so relieved when the doctor delivered him! However, the first words I heard about my new son were, "He has a cleft." At that moment, I looked at Curtis and said, "Are you kidding me?!" It felt like a joke. We'd already had a child with a birth defect. Was this really happening again? How bad was it? How would he look? How would this change our life? How would this effect our other children? All these questions started flying through my mind as I listened to my baby try to cry.

I got a quick glimpse of him before they took him to the NICU. As I've blogged about before, I was highly medicated (thanks to some serious anxiety) at this point and don't clearly remember that moment. I got another quick moment to see him before heading to my room. But once I got to my room, I really started thinking about his cleft. It's amazing how quickly something so foreign, that wasn't on my radar, becomes so normal. I had a son with a cleft lip. He was beautiful and perfect, and I was madly in love with him!

Go back that moment when you met your baby for the first time. You soak in every detail, accepting that he has your husband's nose and eyes, and looks a lot like his brothers. Not once do you think, "Hmmm. I think I'll change his nose," or "Gee, I was really hoping for green eyes, maybe well look at getting baby contacts." You completely and totally accept your baby.

But for moms with cleft babies, that's not how it works. Though you totally accept your baby, and find him amazing and beautiful, you know that you'll be changing him.

So the days leading up to Timothy's cleft repair surgery were very emotional days for me. I found that I had to go through a mental process as I prepared myself for Timothy post surgery. I found myself doubting whether the surgery was a good idea. I was worried that I wouldn't find his as beautiful and adorable as before surgery. And basically, I just couldn't imagine changing something about my precious son.

Imagine holding your baby while people tell you how you can "fix" him.

Imagine changing your child's eyes.

Imagine giving your child a nose job.

That's what cleft repair surgery felt like for me.

God was very gracious, and allowed for Timothy to have an amazingly smooth recovery. I now see that we did make the right decision. I love Timothy's new lips and his new smile. But I find myself still missing his old smile.

No more wonky lip

Yesterday, Timothy had his cleft repair surgery. It went better than expect! Much, much, much better than we expected.

Just a few days before surgery, I was able to put into words how I was feeling about the surgery. In the past few year, our family has faced it's fair share of surgeries. This surgery was more major than some, but not as major as Benjamin's craniotomy. But this time, I felt like I was having more second thoughts than with any of the other surgeries we've gone through. I thought a lot of that was due to the fact that Timothy's surgery wasn't medically necessary. But the more I thought about it, the more I realized that my real uncertainty was because I wasn't sure what he would look like when he was done.

Imagine one day you decide to change your child's eye color, or hair color. That's what I felt like I was doing with Timothy. I was changing something about who my child was. And that's an odd thought process for a mother of a three month old to go through.

So I reminded myself of all the reasons why Curtis and I had made this decision, and why we had started out on this journey. Then God graciously allowed our decision to be affirmed by a very smooth surgery and so far, an amazing recovery. We are thankful for all the prayers that have surrounded Timothy's surgery and recovery. Hopefully, I'll post a few more pictures in the coming days. I'm enjoying seeing Timothy's new smile and want to share it with you all!

Timothy's wonky lip Part 2

This morning, we had an appointment with the plastic surgeon. We are very thankful that Timothy is growing, and gaining weight. Because he's doing such a good job at that, we were able to schedule his cleft repair surgery for May 5th. The surgery will be about 2 hours long, and we've been told to plan on staying the night so that the doctor's can be sure Timothy is eating well and not getting dehydrated. Even though his cleft is incomplete, and not as major as some, the surgery to repair it is just as extensive. The doctor will complete the cleft, the repair it.

While as a mommy I'm no stranger to having my children go through surgery, both major and minor, I'm finding that I am very saddened by this upcoming surgery. Perhaps it's because I've never had a child this young face surgery. Maybe it's because it's "just cosmetic" and doesn't NEED to be done to keep Timothy healthy.

But I think the main reason I'm saddened is because, for me, this is a very obvious and tangible reminder of the world we live in. We live in a fallen, sin marred world. A world where babies are born sick and with deformities. Though I have the ultimate hope of glorification in heaven, I still find myself saddened by the effects of sin.

Every day, I deal with my sin. As a mother, I also have the responsibility of helping my children as they deal with their sin. Though I know Timothy is a sinner, and corrupt in his whole being, I have yet to see those sinful tendencies. But here he is, with a birth defect that shows he is a sinner, born into a sinful, imperfect world. It just makes me sad.

Please keep us in your prayers as we deal with this. I'm thankful that I'm not scared of this surgery. I trust the doctors, the hospital and the staff that will be tending Timothy. Ultimately, I trust that God will use this entire situation for his glory and our good.

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.

Timothy's birthday Part 2

When a baby is born, he's given APGAR scores. At one point during our hospital stay, I asked Curtis if he had heard what Timothy's APGAR's were. He said that no, he didn't know, but the fact that our baby was turning gray probably didn't make for a good score.


After Timothy was born, he was quickly taken to the NICU where he could get the oxygen he needed. The neonatologist also wanted to really check him out, and assess his lungs with an x-ray. Even though Timothy weighed a healthy 7lbs 2 ozs, he was a preemie. I was 35 weeks and 5 days pregnant. The chest x-ray showed the doctor that Timothy had a lot of fluid on his lungs. All things considered, that's not too bad for a preemie! It could have been so much worse.
When a baby is put on oxygen, a tube is placed down the baby's throat and into the stomach to help release any built up air. When the NICU nurses did this, they realized that Timothy's stomach was not just full of air, there was also blood in his stomach. They were using a syringe to suck the blood out, and there was blood in Timothy's first diaper. This showed the docs that the blood had been in his system for longer than just the time since delivery. There were now two main concerns. First, we needed to "dry" Timothy up. Between the fluid on/in his lungs, and now the blood in his stomach, we just needed his body to get rid of all the fluid so that he could begin to nurse. The second concern was fairly obvious. Where was the blood coming from?

The doctors final conclusion was that the blood in Timothy's stomach was mine. We're not sure when he swallowed it, we're not sure where the blood was coming from. But Curtis and I are convinced that there was something going on with either Timothy or myself, and that if he hadn't been delivered, there would have been major problems. We are amazed, but not surprised, at God's protection over Timothy and myself!

I didn't see Timothy till I was on my way out of recovery. Unfortunately, I don't have many memories of that first meeting. Due to the stressful nature of the delivery, the anesthesiologist had given me some medicine to "help me relax". Don't get me wrong, I was really, really thankful for that! I needed something to help calm me down. But I am disappointed that I don't have all those precious memories of seeing my son for the first time.

The next time I saw Timothy was at midnight, 14 hours after his birth. I was also able to hold him during this time, but I wasn't able to nurse him till he had gotten rid of all his extra fluid.

Immediately following my delivery, I was somewhat thankful for the situation of having a baby in the NICU. I was able to rest, recover, process the events of the day, plan for the next few days, share news of his birth. But by the evening, I was ready to see and hold my baby! Normally, after a c-section, the nurses get you up 24 hours after delivery. I had the unique challenge of attempting to get up only 14 hours after surgery. Let me tell you, it was not an easy task! But it was totally worth all the effort.

By Wednesday morning, Timothy was doing well enough to start nursing. As with any baby, it's important to get them eating well and gaining weight. It was even more critical for Timothy to show that he could eat well and sustain his oxygen while eating. We were very thankful that he was able to do this, on the first try.

The NICU at our hospital had a visiting schedule. Curtis and I could only go to the NICU every three hours, and we could only stay for one hour. This schedule made for a very rough night on Wednesday. Curtis and I were waking up, getting me into a wheel chair, getting to the NICU, staying there for an hour, heading back to our room, and going to sleep. We were sleeping for about an hour and a half at a time.

By Thursday morning, I was at the breaking point. I was tired. We were unsure of when Timothy and I would be heading home. I didn't feel like we were getting straight answers from the doctors in the NICU, even though I knew they really couldn't give me any straight forward answers. It was at that point that God graciously allowed a wonderful nurse to come into our lives. She did everything she could to get Timothy out of the NICU and into my room! I was so thankful!!

Thursday afternoon, we discovered that Timothy had jaundice. Of course! Not long after he was able to come into my room, they had to take him back to the NICU/nursery to receive photo therapy. But again, the wonderful nurse jumped in, and brought Timothy back to our room using a Bili blanket.

Little did we know, the battle with jaundice had just begun!