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.

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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.

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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.

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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.

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Rowan came home on May 16, 2002.