preop moved

Pre op has now been moved to Jan 5th.

One tooth down

One of Rowan's front teeth finally fell out! At Cracker Barrel no less.

His new front tooth is coming in completely sideways. Hello, dental work.

Surgery still scheduled for Jan 14th.

Surgery scheduled

We saw Dr. T. last week. His office is way cool. He has all these different models of infant skulls and how they are affected by various clefts and/or syndromes. Very interesting.
But anyway... He agreed with the orthodontist, that Rowan needs his bone graft sooner rather than later. But he said it wasn't so urgent that we couldn't enjoy Christmas first.
So surgery is scheduled for Jan 14th. Pre-op is Jan 12th.
He'll be on a liquid diet for a couple of days and on a soft food diet for 6 weeks. Also no PE or recess for that 6 weeks.
So that's the news. We're hanging in there. January is sufficiently far away for us to forget about it for now.

Save the date

Surgery consult is Oct 27th. That's also Eleri's birthay, and was my Dad's birthday, too. Rowan has a habit of doing things on 'special' days.

Team visit

So...
We had our team visit today. Sharon, the one who usually is running the show and coordinating everyone, was out on medical leave. And boy was it noticable! She runs a tight ship, and I pity anyone trying to fill her shoes. The guys today did their best, but that didn't change the fact that we spent most of our day like this

instead of in with the docs. It was a lot of waiting and playing with bead tables while John and I sat around looking/being tired. But we made it through, finally escaping and taking our starving selves to Hardees because that was the first place with not hospital food. Bad idea to move the Wendy's out of the neurosciences building, UNC!
So usually when we have a team visit, I give a line by line and specialty by specialty report, but I'm not doing that this time. ENT and pysch and social were all - great kid, looks good, nice family, no recs. Plastics said the same old - we'll do the nose and lip when he's ready but we're fine with waiting until he wants it. Speech was the same - no leakage, huge vocabulary, thanks for coming!
Orthodontics was the part that we were looking for, because of his visit this summer where the molar wasn't in so they couldn't put the expander. We were seeing if the molar would be in now, or what we needed to do. We've been waiting on this tooth for a while now, and it's STILL not in. It's right up next to the tooth beside it, and is hung up there unable to come down on its own. The orthodontist said they could put in a spacer, and that would give it room to come down. And then she pulled up his xray and dropped a bomb in my lap.

This one is not labled. I have one labled for you farther down. This is our boy's head. Isn't it lovely? He has all these nice permanent teeth just waiting to come out. Good healthy teeth, some of them teeth that he would not necessarily have. Isn't that exciting?
BUT... Two of his teeth are in a dangerous situation. They are right next to his open cleft. If they erupt into the cleft, the surgeon will have to remove them when he does the bone graft. Meaning two of the teeth in the front of his mouth will be gone - forever.
So the original plan of expanding the palate before bone grafting? Scrapped. The spacer being put in to allow that hung up molar to come down? On hold. Coming at us fast and furious? The bone grafting surgery.
The orthodontist assured me that although they prefer to have the palate expansion done before the bone grafting, they can do it after. She said that we needed to get going on this now, to take away the risk of losing those teeth. Now as in, we need to make an appointment with Dr. T and get a surgery date. Now as in, let's get you set up for more x-rays when you see Dr. T. Now as in, we'll call you with your appointment time.
We couldn't see Dr. T. today because he was in surgery. Good guy. Practice a bunch more before you put your hands on my little boy, okay?
I was not expecting this news. Rowan was not expecting this news. I think the hardest part of all of this (besides going through the actual surgeries of course) is hiding my reaction from him. I can not freak out, or get teary, or clam up, or any of the things I would normally want to do. I have to keep it together, stay calm, and have my happy matter of fact thing going - because anything less would freak him out. He already thought we meant today, and looked at me with his big eyes for a minute. We're already talking about it. Where they will take the bone from (his hip), when it will happen (we don't know yet, but soon), what will it feel like (it will hurt, but we'll give you medicine and you won't be awake for the surgery part at all), what he will eat (LOTS of ice cream and yogurt and blended food)...
We will be talking and talking and talking, because that's how he does it. And maybe we will cry, and that's okay, too. It's okay to cry when you're scared, and surgery is scary. But at least we get to go ahead and get this part of it over with. And then it will be done, and we can move on, right? Because it is what it is, as Heidi says. It's not what we'd ask for, but it is what it is, so we deal with it and go on.
So that's where we are. Waiting to hear when we see Dr. T. Getting a surgery date. Getting a bone graft. We haven't had a surgery for a long time.... but it is what it is.

Here's a labeled xray so you can see what I'm talking about. Any questions? Just ask.

Team meeting coming up

Team meeting is Oct 1st. When we went to see the orthodontist this summer, they said that his molars weren't in enough to put on the expander. But his front teeth still weren't loose, so we have time. They said they'd take a look when we came in for team. If the holdout molar still isn't down enough, they said they might put a bracket on it and pull it on down.

7 years old today

There were days, way back in the beginning, that I never thought we'd get to where we are today.
I never thought it would be hard to remember how it felt way back when, when Rowan was born and the doctor told me that he had a cleft and then put this little stranger on my belly.
I couldn't imagine that the hours of pumping and then squeezing the milk into his little mouth would disappear into that foggy haze of the past.
I couldn't picture him learning to walk, to run, to ride a bike...
I never imagined him on a soccer team.
I certainly never dreamed of his mohawk.

I remember the threat of surgery looming over our heads, and then it was happening, and then it was done, and then it was just something that happened a long time ago...

And here we are.
This is Rowan.


He loves dogs, riding his bike, and computers.
He's better at Mariokart that I am.
He can read. He's very good at writing. He draws well.
He makes this high-pitched noise that could make your ears bleed.
He sings to his baby sister.
He wants to be a vet when he grows up.

Honestly, how did we get from that baby to this boy? Where did it all go?
I can remember life before him, but I can't imagine it. I have to stop and think, "wait... that was before Rowan was born." How did I even exist before this boy came into my life?
I'm a completely different person today than I was 7 years ago.
7 years ago I was afraid and ashamed of feeling the way I did. I was looking for someone to blame and someone to make it all better *rightthisminute*.
This life is incredible. This world is magical. God is wonderful and mysterious and loves us more than we can possibly imagine. He chose us, chose me!, as Rowan's family. I couldn't have known it then, but I know it now - how very important that is.
Some people sparkle. Rowan is one of them. Aren't we lucky?

That's some set of chompers!

As a pre-orthodontic anything comparison - here is what Rowan's mouth looks like at age 7, before any orthodontic work has been done.

On the left is his complete cleft, and his incomplete cleft was on the right. (This is as you are looking at the picture. It's really the other way around in so far as his own personal right and left.)
The complete side has a tooth way up in the cleft. The incomplete side has the perfect tooth, turned sideways. He has lost the 4 teeth on the bottom, and none on the top.
Those are his own fingers holding his cheeks open by the way. He thought getting this picture was pretty funny.

Ready for phase 2...

I just got off the phone with the orthodontics dept of the team. We're set to come in on June 11, to get his panorex and preliminary evaluation.
Rowan is going to have to have a palate expander put in. He has a crossbite, which is completely normal in a kid who had a cleft palate. He's going to have to have that fixed, and get his bone graft, some time in the next few years.
She said that he'll have x-rays and his evaluation on June 11, and then depending on how things look is when they'll start the ball rolling. We'll have another visit a few weeks later where they take a complete history (even though they have all his old records, she said they have to do it again at this new phase) and take the molds of his mouth. They'll figure out a treatment plan, and we'll be presented with options as to what we're looking at.
She said if all goes as it usually does, we're looking at getting his braces in August.

All of this is very foreign to me. I never had any of this done. John had braces, and had to wear head gear at night for some of that, so he's going to be better about knowing what Rowan's going through than I am. This is all for the good stuff though. Rowan's got a good foundation so far with his teeth, and all we can do is wait and see what they say.

I'm taking deep breaths. I'm going to be excited for him instead of fearful. At least I had to get molds of my teeth made recently for that nightguard, so I can show him those and how cool it will be to have that kind of thing done with his teeth.

All I can think is, "Here we go!" This 4 years of no surgery, no therapy, no nothing is about to come to an end. I forget what it's like to have monthly appointments. But here we go.
Here we go.

I wrote this on Rowan's 4th Birthday

May 12, 2006
I became a mother on Mother's Day. Fitting isn't it? To join the ranks of so many, on a day meant just for them? We all thought so.

My pregnancy was just like any other. The excitement when we first found out. The nausea that followed. And then I had that extreme nausea reserved for a lucky few - hyperemesis. We soldiered through it with a picc line and zofran, and by midway through my pregnancy I was back to work and back to normal. I must have spent hours dreaming of my baby. What he would look like (we found out the sex) and how he would sound. His soft little head and tiny hands and feet. I looked forward to his birth every minute of every hour of every day for 9 long months. 38 weeks and 1 day to be exact. We all know pregnant women count down in weeks to that magical 40, the due date circled on the calendar, the day the dream comes true.

My water broke in the afternoon, the day before Mother's Day. It was time. I can still remember that drive to the hospital... joking with my husband about how the bad paving job on the road was not making contractions any easier. Arriving at the hospital (where I'd worked in Labor and Delivery until 4 weeks prior, when I got sent home to bedrest) to all my friends saying, "Are you here for real?! Yay!" Changing into the gown I'd handed to so many women before me. It was finally my turn. Finally my time to have a baby that I could take home and keep.

Little did I know that soon I would be joining another sisterhood. This one is much smaller. We are the ones whose moment of delivery is accompanied by a small gasp - nearly inaudable - that comes before words that make our hearts fall to the center of the earth. I will never forget Jodell's words as she delivered Rowan into the world. She said, "Milli, he's beautiful. But you need to know before I give him to you. He has a cleft lip."

There. Did you hear it? That gasp. It means the world as we knew it had come to an end.
The dream baby we had planned on and wished for - for 38 weeks and 1 day - didn't get here.
Instead, I had this little stranger. This baby I didn't bargain for or count on. This life that was going to have an extra hurdle. for all of us.

Those first few days are days that no one can understand unless they've been there. We of the sisterhood know all about it. The tests, the reassurances, the platitudes... some blame. A lot of guilt. It doesn't matter if the baby has something highly visible like mine did, or something that couldn't be seen at a glance, but was there waiting to be discovered. We've been there.

But slowly, this little person who I didn't ask for and didn't want began to do something to me. He wrapped his little hands around my heart and found a place there. He looked at me with a soul older than time, and a purpose greater than myself. And he became everything in the world to me.

I learned to pump so we could feed him. John and I both became masters at reading his cues and timing his swallow so we could squeeze milk into him at the right pace. Those newborn days are a blur to me now. Aren't they always? By the end of that first week, the joy had replaced most of the fear. We had relearned what beauty was. It wasn't a baby's face. It was the way he burrowed his little head into your neck as you picked him up. It was every little thing about a person, all put together into one little bundle that stole your heart.

That bundle has grown. My has he grown! We got through that first tough year. We spent some time doing therapies. But mostly... we've just had our boy. Our loving, bright, imaginative boy. Can you believe he's 4? Four years ago I couldn't imagine this day. Four years ago I was in a fog, and didn't know how much joy that little baby would bring to me. I'm glad I got to find out.

He's my beautiful, amazing, fantastic boy. And today he's 4. Ask him if he's special. He's got the pefect answer. "Ya. I'm just a pretty cool kid. I'm a regular kind of guy."

Palate repair

It occurs to me that it's silly to go back and rewrite all about that when I can just link you.
So just go here to read about his palate repair, and I'll have a way for you to get back here from there. ;)

lip repair

Rowan had his lip repair surgery at Duke University Hospital. Our day started very early, without much sleep the night before. Rowan was allowed to drink breast milk at 2 am and Pedialyte at 4am, so we woke and fed him at these times, trying to prevent him from being too hungry before surgery. We might as well have skipped the 4am feeding. He *hated* Pedialyte.

We had to be at the hospital at 6am. Since Rowan was only 3 months old, his surgery would be one of the first that day. We were early, and got there even before there was anyone at the desk to help us out. Rowan was starting to feel hungry, so we walked and sang while he tried to eat his burp cloth.

Finally, it was time to go back into the prep area. The nurses listened to Rowan and gave him a general check up to make sure he was all ready for the surgery.
We got him all ready in his hospital gown, and he tried to take a nap while we waited for everyone to be ready. His surgeon, nurses, and anesthesiologist came to make sure we didn't have any last minute questions. At first they weren't going to let me go back to the OR with him, but I insisted. So I got suited up and carried him.

The hallway was really long. I held him close to me and told him that everything would be all right. I held him while the gave him the gas to make him sleep, and handed him to the nurses. It was then out of my hands. I went back to the waiting room to wait with John.

The surgery took about 3 hours. The nurses called several times from the OR to give us updates, and Dr. Georgiade came out as soon as he was finished to tell us how it went. Waiting was so hard, we were relieved when it was over and we could get our first look at our "new" baby.

At first, Rowan's face was very swollen, but that wasn't a surprise. After all, it hadn't even been an hour out of surgery. I didn't like his new face at all. I wanted them to take him and put him right back the way he was before! It's very strange to have the way your baby looks change so drasticly. It didn't take me long, though, to start to love his new face, too.
We stayed in recovery for about 45 minutes, and then it was time to go to his room. It was only noon, but it already felt like it had been days.

Rowan slept a lot. He'd had some narcotics for pain in the recovery area, but after that all he needed was baby Tylenol. He also had an IV so he could get fluids and antibiotics. The hard part was getting him to eat some Pedialyte. He still hated it, but he had to drink and keep down 2 oz for 2 hours before he would be allowed to drink some milk. We managed to get it into him, and he kept it down, so finally he was able to drink his good milk!

He didn't have much of an appetite, and he slept very soundly. We had to feed him with a special squeezable bottle and syringe nipple to keep from hurting his lip. He didn't like this very much. He really wanted to suck on something. It was amazing how fast the swelling in hisface went down. Later, on the same day that he had his surgery we could already see how he would look.

Both John and I stayed at the hospital that night with Rowan. I slept on a fold down chair, and John slept on a camping mat we brought with us from home. We got as much sleep as we could that night, and early the next morning Dr. Georgiade and his residents came by to see us. They said that Rowan was doing very well, and that we could go home as soon as we wanted. John went to pack up the car!

My mom, Rowan's Mamaw, came up to help us out that first weekend home. She was so excited to see what he would look like, she met us at the door. We were very glad to have the help. All Rowan wanted to do was suck on his fingers, and that was the only thing we wouldn't let him do, so he was a very mad little boy.

He had to wear arm restraints, called No-Nos for two weeks after his surgery. He got his stitches out after one week, but he had to keep the No-Nos so he wouldn't mess up his repair. The saying at the hospital was "first fix, best fix," so we made sure to keep those little hands out of his mouth. It wasn't an easy job!

One week after his stitches came out, the scar was already starting to fade. Rowan will need more surgeries in the future, but the first step is all done. We're so glad. He's such a handsome little boy!

The Story of Rowan's birth

May 11, 2002:
It was a little after 1 in the afternoon. John had worked the night before, so he was upstairs in bed, sleeping. I was on bedrest, so I was lying on the couch reading. I had just finished eating a Pepperidge Farm Nantucket cookie with some milk when Rowan made a big movement. I felt a trickle and though, "Oh great. He kicked me in the bladder and now I've wet myself." I vaulted up from the couch - faster than I had moved in weeks - and went to the bathroom. My water had broken! That big momve was Rowan deciding that enough was enough, this short-waisted woman had no more room to give, and he was going to have to be born if he was going to have any space to stretch out.
I called Dr. Boyle, and she said that I should come on in so they could monitor my blood pressure while I walked to get labor going. So, we hopped in the car to go have our baby!
Once I started walking it didn't take long to get labor going. My contractions were strong and stead, and I used the jacuzzi and birthing ball to help things along. At about 8pm I decided to get an epidural block. Both John and I took a little nap, and a little after 10pm it was time to push!
Rowan's head was a little crooked, so it was hard work to push him out.

---

May 12, 2002:

Midnight came, so Rowan's birthday would be May 12th. I was very tired when at 1:27 he finally arrived! This was the first time we knew about Rowan's cleft lip and palate. When I remember it now, it seems like a dream.He was 7lbs even, and 20 inches long, with a head full of dark hair.

---

Rowan had to go to the nursery that night because he was breathing too quickly. That gave me some time to get used to the idea of his cleft. The only other baby I had ever seen with a cleft was one with a condition called Trisomy 18. This is a geneatic syndrome that has a cleft as part of it. It is fatal. My first thought when I saw Rowan was of this baby. I had to come to realize that just because he had a cleft, Rowan was not going to die. Nothing was wrong with him. In fact, he was very healthy. Later that morning, I began to come to terms with it. Holding him close and rubbing my cheek on his little head helped me begin to realize how amazing he was.

---

Rowan had to stay in the hospital an extra few days because he was jaundiced. That gave us some extra time to learn about him, his cleft, and how to feed him. It also gave me some time to begin to use a breast pump. I had never considered anything but breastfeeding for my baby and had never planned on using formula. It took a while for my milk to come in, so Rowan did have some formula while he was in the hospital. Once we left, however, I was able to give him breastmilk and nothing else. By the time we left the hospital, we were very comfortable feeding him with a Haberman feeder, and he was gaining weight. It was time to begin the rest of our lives together.

---

Rowan came home on May 16, 2002.

A letter to new moms

Hello,

Welcome to a new world. I don't know if you just found out about your baby on ultrasound, if you've just come home with your new baby, adopted your child who was born with a facial difference, or if you're a mom who's just found our site. It really doesn't matter. It's a new world every day.

You probably didn't bargain on this. I know I didn't. And it's scary. Probably the most scary thing you've done in your entire life. But you can do this.

I didn't find out about Rowan's cleft until we met him in the delivery room. I was overwhelmed, awestruck, and disappointed. And I felt extrememly guilty for feeling disappointed. I'd waited for nine long eternal months for this perfect, pink baby. What if he could feel my reservations? What if his cleft was caused by something I did/ate/drank? Why didn't I feel that mythical rush of love the first time I saw him? Why was I robbed?

I felt robbed of everything I'd been waiting for. I went so far as to wish I was pregnant again. You see, when I was pregnant, Rowan was still my perfect baby. I didn't know so it didn't exist. I could live in that dream world instead of my reality. And this lasted for a while.

I felt like I should know better than to feel this way. I'm a nurse. I should know. People don't feel this way about their children, do they? What was wrong with me?

Now I know that nothing was wrong. All of those feelings were my reaction, honest and brutal, to a real disappointment. I didn't get over it all right away either. It took some time.

It's not your fault. You may never know what caused your baby's cleft. In time you will see that it really doesn't matter what caused it. And you will fall in love with your baby. It might take a while. You might need to talk to some other people about your feelings. This doesn't make you a bad person or a bad mommy. Do what you have to do.

Get information. You will be able to do so much more for your child if you know about what's out there. Do not go on a marathon run. There is so much out there, it's easy to get bogged down. Take it a little at a time. When Rowan was born I was flooded with books, pamphlets, instructions, resources... I can't name them all. I was looking at information about dental work that I wouldn't need to worry about for years. It didn't make me an informed mom. It made me cry. It was too much all at once, and made me question myself and my ability to handle everything. Silly, your baby won't be doing everything all at once; why should you?

Ask for help. It's not going to be easy. It might take you a while to learn how to feed your baby. If you decided to pump, you'll be suprised at how long it takes at first. Things will get better, but there's no need to wear yourself out in the meantime. If someone says, "what can I do?" point to that stack of laundry, send them to the grocery store, give them your baby and go take a bath or a nap. You don't need to take it all on yourself.

Where should you start? The best source of information I've found is Cleft Advocate. Look at what you need to know. Read the inspirational links. Best, look at the photo gallery at all the wonderful children who have come before your own. They are all beautiful. If you can find some before and after pictures that's even better. Somehow seeing another child transformed can help build hope in your heart.

With love from

Milli

John 9:1-3

And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

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Will be moving Rowan's site to here!