Lip Repair

We had a surgery date when he was 4 days old, that very first visit to the plastic surgeons office they gave us a date. We anticipated that date almost like his delivery date. We planned around it, prayed about it, and worried about it. Dr. Grant (our plastic surgeon) told us he liked for them to be 3 months old for a lip repair, I think some surgeons do it earlier and some later. All I know is that we could not wait to see what he looked like. It sounds ridiculous, vain, selfish, but we wanted him to be whole. Normal. Without the birth defect. We wanted people not to see his cleft but to see Alex. When people peek down into that pumpkin seat at the grocery store, at the mall, at church, they see a cleft, they didn't see my beautiful healthy thriving almost 3 month old and I hated that. We got so many responses when people saw him. There was the awe, as in, poor guy. Then you have the huh, like what's going on there. Then there was the knowledgeable ones that wanted to know if he was eating well and if he had a cleft palate too, those were my favorite. So anyway here we are NOVEMBER 18th, D-DAY if you will. I was more nervous as a mommy about him being put to sleep, yes I know these folks do this everyday but as I mentioned before I'm a nurse mommy and I just happen to work in the recovery room so I happen to know all that CAN happen when you're waking up. Let's just say not everyone wakes up like they have taken a long winters nap. So anyway, I was scared. I'm not going to lie. I've never even been put to sleep and here my 3 month old is going "under". I wasn't a fan, as a matter of fact I almost postponed the surgery I had such anxiety about it. I prayed God would keep his hand on my baby and that he would keep his hand on us as we went through it all and he continues to do so.




We arrived EARLY like had to be there at 530am, if you know me at all you know I hate early. I didn't sleep much the night before so I got up and got ready and around 445 Alex woke up too, I was so nervous about him not being able to eat. They told us not to feed him passed 3am so I had snuck into his room at 245 and tried to get him to eat. He wouldn't. Of course today, the day you CANT eat after a certain time you don't want a bottle. Any other time he would be screaming for a bottle at 2am and sucking it down like there's no tomorrow. Thankfully though, he fell asleep after we got him in his seat and were on our way to children's. We only live about 40 minutes away but it seemed like eternity. We parked headed in and signed in around 520. We were early. A small miracle. We waited patiently with our buzzer, like the one a restaurant gives you before you're seated, The buzzer makes the world go round there in surgery. It buzzes and you are summoned step by step. Our first step was pre-op.













We spent about an hour and a half in pre-op. A nurse, an anesthesiologist and a CRNA came and talked to us, asked us the same questions over and over, you know, hospital stuff. While we waited though Alex was perfect, I mean he even flirted with the females that came in with that big sweet cleft smile. He was a big boy and as you can see we had plenty of time for a photo op and for mommy to pump. Did I mention I was pumping this little guys food daylight and dark? He couldn't latch so mommy turned into a milk factory for the first 3 months of his life. Totally worth it but whew!! Pumping AND feeding separately is NO joke. Insert super thanks to my awesome husband. I couldn't do life without him around here. :)




HERE COMES the HARD PART......




I had to hand him over, at the bubble wall they called it. He had fallen asleep and so it was easier, handing my 3 month old over to someone I had just met. Entrusting his life to them. People do it with me every day but it's different on the other side. I don't like it AT ALL. I only cried a little and he never knew the difference he was snoring, dreaming of giant baby bottles or something wonderful like that. So Bart went and got us breakfast and he took the buzzer with him which totally freaked me out because they told us they would buzz us when they got him to sleep. The way it works is that your buzzer vibrates and you go to "the phone" sort of like the bat phone on batman. All of the important people are on that phone. The first buzz was from the OR nurse, thankfully Bart had made it back up with our food and she was telling us he had been put to sleep successfully. Yay.



Our next update would be from Dr.Real who put our ear tubes in. Side note. Cleft palate babies have wayyyy more fluid that seeps into the ear canal so they get tubes ASAP. In our case, with our lip repair, we had our first scare at the newborn hearing screen when he failed the right ear which I've learned since is very common because often times cleft palate babies are born with fluid on their ears. We also had our first ear infection at our 8 week dr appt and took amoxicillin for 10 days which helped so much! >>>Any who when Dr.Real came out he held my hand, not knowing it was one of his pacu nurses babies he was working on in there, he looked so surprised to see me, he had no idea I was Alex's mommy, and I cried when he hugged me and Bart and told us Alex's ears were horrible and that he would be like a different child because they were THAT bad. I've worked with Dr. Real for almost 12 years and I was SO glad he was the one taking care of my baby!!





28 And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose.

Romans 8:28


We waited, and waited some more, then our buzzer went off again, it was the OR nurse telling us everything was going great and that the next call we would get would be from someone telling us to meet Dr. Grant in the consult room About an hour and a half passed and we got that buzz. He told us everything went beautifully, he was happy with his results. Dr. Grant told us the next call would be from the recovery room nurse telling us we were heading up to our room.



An hour and a half later we got the last buzz, it was our recovery room nurse and she told us she would meet us in the back hall and we could ride up with them I was so nervous. Excited and nervous, almost like the day he was born. It was like that all over again. The nurse came out to get us and all I could see was my tiny man lying there in that big ole stretcher. He had a new lip!!! A new face really. It completely changed the entire look of his little face. The day he was born one of our
anesthesiologists where I work came up to see us and told me he and his wife had adopted a little girl from china with a cleft lip and palate. Dr. Thornton told us we would miss his smile after the repair. I thought he was insane then, now I understand. I started crying, Bart started crying, and I think the nurse with us may have even shed a tear or two. I will never forget that moment with my new baby boy. It was wonderful and sad all wrapped up in one. He looked different now than when God gave him to us and I didn't really know what to think about it at first. Here we are in his room, I rocked him for at least 2 hours, he slept all bundled up in his little hospital gown and blankets.
Here we are just a few minutes out of recovery.









To say we were pleased with the way he looked would be the understatement of the century. We were ecstatic. We spent one night in the hospital on the burn unit, only because Dr. Grant likes the way those nurses handle things apparently. They were all awesome. We did pretty well overnight and we were up and ready to go bright and early the next morning. He started to swell pretty bad but that's normal and related to all of the fluids they get during surgery.





Here's a picture later in the afternoon the day of surgery.









And we're out of here.






That's it. We came with a cleft lip, we left with a new lip. Those first few days were rough. He had to wear elbow restraints so that he didn't interfere with the repair and honestly other than that being an annoyance he did fantastic overall. Quite the little trooper.

Heres a sweet little video of him talking to daddy about 1 week post-op

He has done so great, seriously, people keep asking me with constant concern about how hes eating or if hes hurting and I can honestly say he has handled it WAY better than most adults for sure.  They say kids are resilient and I believe it more now than ever.  I miss that little cleft smile though, everyday.  Sometimes more days than others.  I'm excited to see where God takes Alex, he will have a testimony, I pray he stays strong in the Lord, I pray that people are accepting of him and that he will be that kid in school with the "cool scar" rather than that kid with the "cleft scar".  Hes a fighter for sure..

This will always be one of my favorite pictures of him.  Not a worry in the world, he has not a clue hes different.  He's just happy to be here.. :) Melts my heart to a million tiny pieces..Love this sweet boy.

Heres an after, this is about 4 or 5 weeks after, its a close race which one of these girls love him more.  I feel very sorry for any girl who may be remotely interested in him, they will have to face these two.  YIKES.  Besides fighting his mommy of course.  I think I would be worried about the Payne sisters.A force to be reckoned with.

1 month, 2 month...

Growing like a weed !! This boy has never slowed down eating.  He has changed so much though ! Not just his lip repair but his looks in general.  It's amazing how much they grow and change in just a months time. 

In Hiding

Heres one of my pictures I posted on FB when he was just a few days old, I wanted to keep the cleft from the world as long as possible so I would do my very best to post pictures that didn't show his lip.  Now it just makes me sad that I even cared.  We had our newborn pictures made when he was about 9 days old, on our way home our photgrapher sent me a picture to my phone and I melted.  I knew I didn't want to hide his lip any longer, I wanted to show everyone how beautiful my baby boy was !! When she sent me the picture I started crying, I was on corridor x with my mother in law and she was like whats wrong??? I said look !! They are perfection.

This one was our facebook debut.  Meredith Rowlen is pretty darn talented !!

My Gifts this Christmas Season

Aren't they beautiful? I know I'm biased but my babies are just beautiful. They are such a blessing to us, my absolute heart.

Ava Claire is the oldest, she will be 4 in two short weeks, she is smart, reserved, sassy, absolutely gorgeous, caring, and has an imagination like none I've ever witnessed. She is so much like me, she mothers everyone, loves to help and at the young age of 4 has some of my OCD tendencies. Bless her heart.

Alivia Cate is 2, she is our little comedian, the child can make you laugh on days when you don't want to crack a smile. So far she is my most strong willed child, if she wants something you can forget getting in her way. She ADORES her "sissy" and I am SO very thankful they have eachother. She is not easily swayed. She stands her ground. Shes a fighter. She is tiny, petite and NEVER stops going, she even eats on the run most of the time! This baby loves her daddy so deeply it hurts my feelings sometimes. They share a very special bond and I hope that sticks forever !

Alexander James, our baby boy, he is only 4 months old but he has already started to show some personality. He is a fighter for sure, he has hurdled over every obstacle in his way thus far, and he has taught this mommy that things aren't always perfect and planned and he has made me into a better person. I had a good friend tell me after he was born that she could'nt believe I had a baby with a cleft because I always had everything so perfect. HA! She told me I always dressed them cute, brought the cute snacks, the perfect gifts etc. THAT opened my eyes, I don't want people to thing about me like that. I want to be real. Things are surely not perfect at our house but Alex has shown me that a little bump in the road can make you stronger and wiser and a better person. God has a sense of humor, he knew what I needed and what Alex needed, he knew no one would take better care of Alex, no one would be as particular about him, about his wounds, about sheltering him. NO ONE. Love that baby boy

So Many questions.....

Most asked question: What causes a cleft?
 So there we were in the hospital with a new baby that had a cleft lip, cleft palate and a tiny little cleft in his gum. I had so many questions those first few days and to this day, almost 4 months later we still get asked those very same questions we were asking ourselves. What causes a cleft? This is apparently the million dollar question. There are several things that have been proven to cause a cleft. The first being heredity, does anyone in our families have a cleft? The answer is NO, no one on either side has ever had a cleft lip or cleft palate. Secondly, medication, specifically Dilantin which is an anti seizure medication. I have never taken Dilantin in my life, I don't have seizures or any health problems for that matter. Third, a low folic acid level in the first trimester of pregnancy? Mmmmmm, possibly. This one isn't proven, there are a few articles on it randomly on the internet, one from the march of dimes you can read about here but for the most part it is just one of those things that happens. Fourth, diabetes, diagnosed before pregnancy. Fifth, consuming alcohol during pregnancy which I did not do. My bet is on the folic acid for me, I had lost about 60 lbs around the time we conceived and had been dieting and working out regularly. I'm convinced my levels were low and that is what happened in our case. The Centers for Disease Control and Prevention (CDC) recently estimated that each year 2,651 babies in the United States are born with a cleft palate and 4,437 babies are born with a cleft lip with or without a cleft palate. Cleft lip is more common than cleft palate. Isolated orofacial clefts, or clefts that occur with no other birth defects, are one of the most common birth defects in the United States. About 70% of all orofacial clefts are isolated clefts. Thats A LOT !! Well, to me it is anyway. That comes out to about 1 in 650 caucasion births. It is more common in asian and less common in african american babies. Go figure. I poured myself into learning everything I could possible learn about clefts in that first few weeks and couple of months. There are a few celebrities that were born with clefts which was encouraging to me at that time because I was so worried about Alex and what people would think when they saw him. Now, it doesn't really matter that much to me, hes beautiful and I can't wait to see where this road takes him in his life!! I know he will be a blessing to someone who needs to hear his story. Peyton Manning was born with a cleft palate, he gives annually to operation smile and gives money toward cleft lip and palate research. Joaquin Phoenix, yes, the guy in the gladiator, he has that pretty little scar on his lip, and it has helped to cast him in lots of tough guy roles. Cool huh? We have whats called a bilateral cleft lip and unilateral palate. Here's what his palate looks like. EVERY single cleft is different, each having their own involvement.

Here we are in the hospital, the left side is a complete cleft, with gum lip and palate involvement, the right side is closed.

Second most asked question : Is he eating well?

Is he eating? If we've been asked that question once we've been asked one million times. The answer is YES !!! PRAISE THE LORD, he eats like a champ. When we were in the hospital we were given cleft nipples, you know the ones that are individually wrapped like the similac ones? Except these said CLEFT NIPPLE on them, I hated them, I hated looking over under his bassinet and seeing the word cleft. I struggled, for about 2 weeks with just the word. I cried every single day, all anyone could tell me was OH, Sheena, it could be so much worse. I didn't care, this was my worst. I wanted him to be normal, so this momma got him to eat from a dr. browns bottle and he did great except it took him FOREVER to eat.I should also mention, he wanted NO part of the cleft nipple, its long and skinny and it was just awkward to him apparently because if you tried to put it in his mouth he immediately started trying to push it out with his tongue. See the problem with a cleft palate is thats where we get our suction, when a baby sucks on a bottle or a paci or breast feeds, a suction is created inside your mouth and the palate plays a HUGE part in that. When its open, it makes things more difficult. So the day after we were discharged from the hospital we went to see the plastic surgeon at the cleft clinic at children's. While we were there we were given SO much wonderful information and they answered a ton of our questions. We wanted knowledge, a plan on repairing our little sweet lip and we needed something to look forward to. When you go to the cleft clinic you go into a room after you sign in and you are seen by an array of folks. The day we went, when he was 4 days old, mind you, we saw an audiologist, a speech pathologist, a geneticist, and a plastic surgeon. WHOA !! I felt like a new lady when we left. Elizabeth, one of our awesome speech lady's at the cleft clinic asked me how he was eating, I told her he was eating good which wasn't a lie but I knew it was taking him WAY too long. He would eat 2 ounces and it would take him 30 minutes. It was rough. She asked me all the right questions and explained to us that if he was taking that long to eat he was burning off the food he was eating because he was sucking too long. She introduced us to the pigeon bottle, it saved our sanity. IT was made for cleft babies and boy was I glad at that point, feedings were taking up most of our day. Basically it has a funny looking nipple and a little valve that fits inside the nipple that allows the baby to pinch the nipple with his mouth rather than having to suck so hard, the valve regulates the flow and the nipple helps keep baby from working so hard for his food. The bottle is also squeezable, so that if the baby is having trouble getting the milk to come out you can give it a squeeze and help them out a little. The only problem with this fine invention is that they are very proud of them and there is ONE, yes i said ONE company that makes them. Thank you mead johnson for having the entire monopoly on pigeon bottles and charging 35 bucks a piece for them !! GEEZ!!! Needless to say we worked with 3 bottles for quite some time. I did figure out that the bottle ring would fit on our dr. browns bottles so that helped some. We still, 4 months in only have 3 bottle rings, 6 nipples and 6 valves, its worked this long though so why buy anymore right ? HA!! Its become habit that if the middle of the sink is full you wash them, often this is what you see in the center of our sink. I have failed to mention how wonderful of a husband I have. He never hesitates to wash or change or feed a child when something needs to be done. I don't give him enough credit.

Here's a nipple and valve picture, the nipple has a notch that you line up with his nose that allows the flat part to be right side up.  Neat huh?

Here's the pliable bottle

Mixed Emotions

Here we are, our first official photo together.  The look on my face here I think says it all.  It sounds ridiculous now but looking back at this photo I look completely devastated.  I remember them bringing him to my face after they pulled him out of my tummy and I just started to sob.  It was joy and devastation.  Joy that he was here, devastation that he had a birth defect, not just a birth defect but one that we had no idea about until the day he came into this world.  All I could think about was him not being able to eat, or nurse.  Would he have developmental delays? Would he be ok? My Dr had no idea either obviously but she was so reassuring as she sewed me back together.  She explained her nephew was born with a cleft and club foot, they too had no idea.  She said he was 5 now and was completely fine, totally normal.  Oh how I wished I didn 't have to go through this today!! Yesterday was fine, I was 39 weeks pregnant, I had two perfect little girls at home and we had worries but never a worry like an unhealthy baby.  I wanted this picture taken just like this.  My sister in law took it and I wanted his mouth covered up so all of the world couldn't see my baby had a cleft.  Facebook is funny that way, most people only post the good, I let a few people see, my close friends, my precious family, but my mothers instinct was to protect him, to shield him from all of the people in the world that would gawk at him and make him the center of their dinner discussion.  I could just hear them, HAVE YOU SEEN Bart and Sheena's baby? I couldn't bear it so I hid it and we did a pretty darn good job too I think. That few days we were in the hospital we gained so much knowledge on a cleft, we had people poor love and prayer on us that covered us and comforted us.  People prayed with us, my coworkers surrounded me with SO much love and support and I will forever be grateful.  FOREVER. 

20 Weeks

We had our official 20 week US in April confirming our fantastic BOY news. During the US the tech told us everything was perfect, she told me she couldn't see his face great because he was so low already and he wasnt cooperative but I didn't care, I was just excited he was a boy.  I never thought about it. We were ecstatic.  I knew I wanted to name him Alexander, that is my great grandads name and he was special to me.  I have the greatest memories of going to his house in Leeds and smashing pennies on the railroad tracks in front of his house.  We would usually just go for the day and eat lunch make homemade icecream on the front porch and spend time with family.  I remember those times so vividly, isnt it strange what sticks out in your mind ? James is his middle name we chose and it is Barts dads name.  I think its important for a boy to have a strong family name.  I just love it.  So it was official, Alexander James Payne would be here in August and we could hardly wait !!

This picture is our maternity photos, they were taken in late July, about 3 weeks before Alex was born.  It was SO hot and miserable and I really didn't feel like having my picture made but I'm glad I did now.  They turned out cute and the very talented Samantha Gromko did a fabulous job as usual. 

First Photo

And BAM!! There he is, isn't it just amazing? We have the ability to make another life.  IT is the best experience ever.  Nothing will captivate you like the first heartbeat you hear of that precious angel you have concieved.  I was right at 10 weeks here, this is Alex's first photo.  We were so excited and hopeful for a baby boy !! We had to wait a few weeks to find out but Bart just KNEW he was getting a boy this time.

Fast forward to March, everything was going perfectly, no sickness, no problems AT ALL.  All of my pregnancies were great, I never had the first high BP or abnormal lab value or anything. I am a nurse and so sometimes that gives you the upper hand in things like ultrasounds.  Bart couldn't come to the hospital that day so I went alone and asked the US tech to seal the results of our gender in an envelope.  She did.  My neighbor was sweet enough to make us a box for the girls to open with balloons in it to tell us the gender.  So at this point no one knew but my neighbor, I dropped the envelope off with her on my way home from work because I knew if I took it home I would peek.  All of our family gathered excitedly to hear the news and when Brandy brought that box over we couldn't get it open fast enough.  We let the girls open it, and well now you all know the results.  IT WAS OUR BOY!!!! We (especially Bart) were SO excited.  FINALLY A SWEET BOY !!!! His eldest sister Ava Claire wasn't so happy, she told us she wanted a sister and she wasn't kidding.

I think in his first 3 months of life he had 4 ultrasounds, all different US techs, all missed the cleft.  Sometimes I think it was God's way of giving me piece of mind throughout the pregnancy, he knew best, he knew this momma would worry and fret and worry some more.  He knew I couldn't handle it so he helped protect our sanity, I am grateful.

The Beginning

Well I'll take you back, way back. It was Christmas last year, 2012, we were a sweet little famiy of four, we were content in our lives, not perfect, but content. We enjoyed Christmas with our girls and we were moving right along with the holidays when suddenly, the day after Christmas to be exact, I realized I had not started my period (and let me just tell ya, it comes like clock work, has since day 1). Anywho, so we celebrated New Years Eve with the girls at home, Bart shot fireworks for just the 4 of us, it was nice, quiet, a great evening at home with our babies. The next day we decided to go to Outback to eat dinner, thats normal right? WRONG ?! Bart was driving down Mt. olive road and I started feeling really sick, in the front seat mind you. I get car sick but this was different, he had to pullover, you know the rest. Then and there it hit me that I was pregnant, it had not even occured to me until that point in time. It hit US like a ton of bricks. We ate, got back in the car to go home and realized about half way home we didnt have Alivias paci, so she screamed the entire way home, she was 14 months, still a baby herself. We didn't stop on the way home for a pregnancy test because the screaming was so unbearable so after we got the girls settled, I called my sweet neighbor at 1030pm, yes I have wonderful neighbors, to see if she had a test. She did, I remember walking back home and thinking surely not, I'm not ready, I have a 3 year old and a 14 month old. I AM NOT READY. WE ARE NOT READY. I walked into the bathroom, Bart and Ava Claire were on our bed and I came back out holding the test, and sobbing. As much as I hate to admit it, I wasn't happy, I was scared, nervous, anxious. NOT READY. God knew best though and I am so thankful for this wonderful surprise, this 3rd little one that has completed our family. More Later...