It's going to be a baby

My pregnancy was mostly uneventful. At my 20 week ultrasound, I learned about Christian's cleft, and this meant i had to come in regularly for ultrasounds to track his progress. This i didn't mind too much. I've heard about bad things that can happen with ultrasounds, but we got to see a 4D scan because they wanted a better look. :D I really loved being able to go in every few weeks to see my baby.

Here's some ultrasound photos. They took quite a few because it was hard to get him to move his hands from his face. The technician told me she sees that a lot with cleft lip babies, for some reason.

In this one, if you squint a bit, you can see the dark spaces where the white jawbone is supposed to continue. Two spaces means there's a bilateral cleft there. This was taken at 20 weeks gestation.

Here's another at 26 weeks. He was swallowing amniotic fluid, and kissing up towards the placenta. My first baby kisses!

These are the good ones. The 3d photos taken at 33 weeks. I didn't really know what i was looking at here, but in the first two, you can see that he has a protruding pre-maxilla, i.e. the part of your jaw where your two front teeth are. I thought it was his nose...

So there you go, in case you were wondering what you could see on an ultrasound looking for cleft lip and palate.

So, about us....

Whew. Writing that last entry about medical stuff was pretty taxing. :( It's hard to think about all that my little one has been through and will go through.

Anyway, I'm Christian's mom, Angelica. I'm 21 years old, and live with my son and husband in Washington. Christian's dad is in the army, and we got married in August of 2008. I found out I was pregnant in October. Hehe, funny story, I found out I was pregnant when I went to the emergency room with stomach pains. The nurse came in and asked me some questions, said she was going to get some stuff to do a pelvic exam and then we'd find out how far along I was.

Yeah, but i was happy. My husband was thrilled. The next few months were something else.... way to go, first trimester... I lost 15 pounds because the only foods I could hold down were pizza rolls, ravioli, prenatal vitamins and water. (The vitamins probably don't count as food though.) Food cravings were the big thing with me though. I remember calling my husband at work in tears to bring raspberry toaster strudel home.

I knew it was a boy before the ultrasound, and picked out his name. I couldn't think of any girl names, because I knew it was a boy, no point. My husband thought I was nuts, but I was once again right. I'm always right. ;) Christian Michael John LeRoy. I was always very close with my brothers, and I wanted my son to have a good family name, so it's Christian for my brother's Christopher and Anthony, Michael for my youngest brother, and John for my oldest brother Jonathan. (it was shortened cause my husband's name is John and that fits well.) So I kinda jacked it with my own family names, but my husband and his family loved the name. All is well. :P

Medical facts and stuff.

A cleft is an opening in the body. They can occur anywhere, but they are more common in the face. When your baby was about 5 weeks in gestation, lip and palate formation was taking place. All fetuses at this point have cleft lips and palates, but then the bones and tissues are supposed to fuse normally. It's not completely certain why some babies clefts don't fuse properly, but a combination of genetics and environmental factors are thought to be the cause. Asian and Native American children are more likely to have this condition, more boys than girls will have a bilateral cleft lip and/or palate, more girls than boys will have cleft palate alone. Women who smoke or take medications in the first trimester are more likely to have babies with clefts than those that don't, and being obese increases your chance of having a child with a cleft by 20%. Clefts are also associated with certain medical conditions, but some are just isolated cases. The condition can be diagnosed during pregnancy through an ultrasound.

And then there are those that just happen, with none of those risk factors at all. Just know that this was probably not something you did, or something you could have prevented. It happens, and doctors are not sure why.

Clefts are treated with surgery and sometimes with special non surgical procedures, such as molding plates and tape. (I'll got more in depth about that in a later entry.) Children with this condition often have trouble feeding. If a child has an isolated cleft lip, breast tissue can fill in the gap and breastfeeding might be able to be achieved. Nursing with a cleft palate is problematic at best, more likely impossible without pumping. The reason is that in order to make proper suction, the baby has to seal off the passage to the nose with his/her soft palate. If that is compromised, adequate suction is not being made. There are special bottles that can be used by babies with cleft palates. I've used the Special Needs feeder, Pigeon bottle, as well as a few other types of bottles.

Surgery is usually performed between 3-6 months of age to repair the lip, 9-18 months to repair the palate, and later in life, more surgeries to correct jaw and tooth trouble. I recommend finding a multi-disciplined craniofacial team that is used to treating children with this condition. It's made a world of difference with my son.

And so it begins. (Sort of.)

Christian Michael John LeRoy is my super awesome 5 and 1/2 month old son. He has red hair and the most gorgeous blue eyes I've ever seen. Really, he gets complimented on it all the time. His smile lights up the room, and his laughs are contagious. I can prove it. He's healthy and active and perfect.... and he was born with a bilateral cleft lip and palate.

I found out on my big ultrasound about the clefts. The tech took lots of photos for me and we laughed about how he'd always turn away right when she was about to do something. (a habit that has carried on to this day. That's my boy!) I wanted the sex to be a surprise, but too bad, he flashed me and I knew. Then smiled and said "If the doctor sees something in these that he needs to discuss with you, he'll be in to see you shortly."

As I was cleaning up and adjusting my clothes, my husband and I were chattering excitedly about how awesome the experience of seeing our first baby was when the doctor came in the room. He said there was something he needed to talk to us about, and had us step into another room. Suddenly we were fearful and nervous. I just saw my precious little person on the screen, he looked fine to me, what could be wrong? He came back into the room and explained that it appeared that the baby had what was called a cleft lip and palate. It was bilateral, meaning that it was on both sides. My husband had never seen or heard of cleft lip, I had watched the Operation Smile commercials on TV years ago.

At the risk of sounding like a horrible person, the news was very devastating. I mentioned seeing the operation smile commercials and thinking "Thank goodness that doesn't happen here...." I was only 12 and had no other exposure to it, how was I to know that cleft lip and palate really affects nearly 1 in 600 babies every year? At that moment, my whole life changed, my view of the world changed, and I knew that I had to know everything I could know about this affliction.

There is a plethora of information on the internet about cleft lip and palate. It's very overwhelming to go through it all and try to figure out what all the medical lingo is and it can make you forget that your baby is a baby first, and not his disorder. I wished at the time that there was someone out there who knew, who could tell it like it is, and could answer my questions as a mother and not a medical journal. (Though the medical journals are helpful too.)

Now my only wish is that i had started this sooner and let you follow through with me. Oh well. I'll offer my hindsight and I really hope that my words help you. :) Christian's story isn't about cleft lip and palate, it's about how much I love him and how much I know you love your little one too.