Coburn Kids

Thought I would do a blog on clefts, and explain more about them. Clefts are the 2nd most common birth defect in the world, right behind a club foot. About 1 in 750 babies will be born with them, in Utah that rate is 1 in 450 or .2% of babies. The rate of having a bilateral cleft lip and palate is even rarer at .06% of babies. They are considered a multi-factor defect, meaning that there’s not just one cause for them, or they can’t pinpoint it to just one cause. They can be genetic, environmental, caused by certain drugs during pregnancy, and smoking. While they recommend those who have had previous cleft children to take a large amount of folic acid, this isn’t a guarantee since they can’t pinpoint exactly what causes them. Caden was certainly a planned pregnancy and I was on prenatal’s. So we don’t know why exactly Caden has a cleft since we have no family history of them. It’s why it can be so hard to accept, that there was nothing you did wrong or could have done to prevent it. It can happen to anyone though.

While the cleft anomaly can “run in families” or show up in conjunction with a syndrom (e.g. Pierre Robin Sequence, Treacher Collins, etc.), most often a cleft shows itself as an isolated incident. This is known as a nonsyndromic cleft which is what Caden has.

A good explanation for what happens in the womb I’m going to take from another blog called Cleft Notes, complete with pictures so you can get a better idea of what this all looks like and what happens.

When someone is born with a cleft LIP, they have an opening in the upper lip. Normally the lip is formed by the union of two tabs of tissue that grow in from the sides of the face with a central tab that grows down from the tip of the nose. This union takes place around 4-6 weeks of embryonic development. Here is an excellent picture of these fusion points:
The formation of our face is actually quite complex. If you hold your 2 hands together in a cupping shape and and proceeded to fold your fingers inward, there are a number of tabs that fold inward and latch. These folds give rise to our nose and our mouth. Here is another picture depicting a 5 week fetuses (this is what we all looked like at 5 weeks old!) that shows the places where our lips latch very clearly:
Another way to get a good idea of what I am talking about, is to take a look at your face in the mirror. See those 2 small lines coming down from your nostrils to the tips of your cupid’s bow of your lips? Those lines are called the philtrum and are “scars” from the folds where your face came together during embryonic development. This fusion should take place in the fourth to sixth week of pregnancy. If the union is not complete, the baby is born with a cleft lip.

Now, there are different kinds of clefts that can occur with the lip.

If the cleft extends up into the nostril it is called a ‘complete cleft lip’. If the nose is not affected it is called an ‘incomplete cleft lip’. When both sides of the lip don’t latch, then it is a bilateral cleft lip.Caden of course was born with a bilateral incomplete cleft lip, since it did not extend up into the nose area and there was a thin stretch of skin underneath there.

When a cleft of the palate occurs, it can affect the hard and soft palate. Here’s a little way to explain where your hard and soft palate are. Open your mouth wide and look into a mirror. Place your tongue at the top of your mouth, near the front by your teeth. You will notice this is hard and is likewise your HARD palate. If you look at your hard palate in the mirror, you may even be able to see the whitish line down the center, where your palate “zippered shut” in the embryonic stage of development.

Now look further back in your mouth. Move your tongue from the hard roof of your mouth back towards where it becomes soft and elastic. This is where your soft palate begins. If you look far enough back, you will see your little uvula (the little ball which hangs down) and that is the end tip of the soft palate.

Like the lip, there are varying forms of a cleft of the palate. Some babies are born with just the soft palate affected by a cleft. Other babies are born with the entire roof of the mouth (both hard and soft palates) affected. For Caden, he had a cleft of the hard and soft palate. There are also very minor forms of clefts of the soft palates which include a submucosal cleft and a clefted uvula. I couldn’t find a picture of a submucosal cleft, but I did find one of a clefted uvula:

Today I went to pick up Genevieve from her Karate class and I sat there… and sat there… and sat there for an hour. So I’m a bit concerned at this point, it’s not unusual for them to go over by 15 to 20 minutes but an hour?! So Daddy comes and grabs Adessa who has had enough of sitting in the car, I get Caden and go down to see what’s going on. The entire class is completely enthralled and listening to Master West. They did board breaking today! How cool is that, my lil’ 6 year old girl breaking boards with a front kick and her hand. The class was soooo occupied that no one even kept track of the time. They all look at me crazy-like when I walk in. Gena thought I was picking her up early, even though she had been there for 2+ hours.

There’s actually a tournament coming up on April 26th but Gena can’t go to it unfortunately. It’s out in Pleasant Grove but Caden’s surgery is the day before, so I will literally still be up at the hospital with him. It’s just amazing how much she is learning in this class. She’s the youngest in the class but the other range in age from 7-12 year olds and she is keeping up with them! I’m very proud of her and her enthusiasm for it right now.

In other news, I finally finally signed Genevieve up for her horseback riding lessons. I had promised her for her birthday last year that I would, didn’t even get her a birthday present because I knew how expensive they were… and just didn’t ever get the chance with Caden and all. So how sad is that, poor girl didn’t even get a birthday present from mommy and daddy for her 6th birthday. So I’m making good on that promise now and she starts May 10th. Wahoo!

Just a mini update on Adessa, she DID go to preschool today. Daniel went early with her and they had a talk with the teacher.  Apparently it’s the latest “fad” in her preschool class to want to go home or call Mommy.  I’m hoping this is all it is.  Kids follow any and all examples She was such a good girl today going to preschool and even taking her nap that we went out for ice cream tonight.  Naps are getting harder as she’s approaching 4 years old in 2 months.  So it’s about every-other-day that we can get her down for one.

Caden is doing a bit better on his feedings.  He’ll take about 90 ml’s now or 3 oz.’s.  Which is good!  But not enough, the stinker.  When there’s about 40 or 50 ml’s left in his bottle he just stops.  Completely. But it’s an improvement so I’ll take it.

All right, I was tagged and this is my first tag so I figure why not…

A- ADVOCATE FOR: Wow, a lot I want to get involved in with right now. Cleft kids, HELLP, tube feeding and prematurity. It’s interesting that after Gena & Adessa’s preemie birth it seemed to roll right off. Something I pushed aside. But with Caden I literally can NOT stop reading up on all these issues. I would really like to get involved with one exclusively and focus on it but I need to get Caden settled down first.
B- BEST FEATURE: My hair when it wants to cooperate.
C- COULD DO WITH OUT: Laundry. I despise laundry. It’s so tedious and NEVER goes away.
D- DREAMS AND DESIRES: I want to write again. I’ve been really thinking of it these last 6 months. It’s my passion and I’ve been neglecting it.
E- ESSENTIAL ITEMS: Mascara without a doubt. Then long hot bubble baths. I can not survive with them.
F- FAVORITE PAST TIME: Reading. Which happens in my long hot bubble baths. It’s the only time I have to read anymore without interruption.
G- GOOD AT: Making Caden giggle. I’m a pro. Also, and this one is kind of hard to put into words, dealing with all different types of people and personalities. Including irate people, it’s a strange gift.
H- HAVE NEVER TRIED: Swimming in the ocean. It’s on my list of “things to do before I die.”
I- IF I HAD A MILLION DOLLARS: Pay off bills, finish my basement, invest the rest.
J- JUNKIE FOR: Caramel and caffeine. They are addictions I DON’T WANT to break.
K- KINDRED SPIRIT: My brother Jason. We are very close and while we love the good argument we understand each other and can talk about anything.
L- LITTLE KNOWN FACT: When I was 6 my family moved to Georgia for a couple of months (dad was in the army) and I came back with a southern accent. No I don’t still have it.
M- MEMORABLE MOMENT: When Daniel first told me he loved me. My heart was in my throat and I couldn’t even respond! It’s a bit of a story.
N- NEVER AGAIN WILL I: Take the cheery tone a doctor is using and think everything is okay. You have to listen to what is being said and not the manner in which they say it. If a doctor is taking a long time with you and appears thorough… something is definitely, seriously wrong. Lungs collapsing are not “normal”, pulmonary hypertension is not a “hiccup”, no you did not take my blood pressure in the 2 seconds you had the cuff on my arm, no a baby coding is not something you can talk casually about and expect me NOT to be concerned.
O- OCCASIONAL INDULGENCE: Ice cream. Really, it was a hard habit to break.
P- PROFESSION: Website administrator, mom, appointment setter for Caden.
Q- QUOTE: “I can sum up everything I’ve learned about life in 3 words… It goes on.” ~Robert Frost and “Life isn’t about waiting for the storm to pass, it’s learning how to dance in the rain.”
R- REASON TO SMILE: My family. Friends. Good times.
S- SORRY FOR: Whining or complaining. I hate when other people do it (or my kids) and I’m sometimes guilty of it myself.
T- TAG SOME FRIENDS: Everyone recently has been tagged so I have nothing to put here.
U- UNINTERESTED IN: See above. Whining or complaining.
V- VERY SCARED OF: People walking behind me in a hallway. There’s no reason for it, just gets under my skin.
W- WORST HABIT: Stress eating. I swear if I could only be one of those people that stops eating when stressed I’d be a stick.
X- MARKS MY IDEAL VACATION SPOT: Scotland. A trip we had to give up when I first got pregnant with Gena. Still want to go back there desperately.
Y- YUMMIEST DESSERT: Caramel. Caramel. Caramel.
Z- ZODIAC SIGN: Aquarius.

My girls did something so cute yesterday with their Daddy. The decided to play church since General Conference was on. So Genevieve wanted to make a ‘program’ like we have at church so that they could do it properly. You can see the pic’s of the program to the left. The first picture is the front, that’s a picture of the temple on it. Then inside she made the program to follow:

1……. I am a Child of God (song)
2……. Testumoney (testimony)
3…… Bred (bread)
4….. Whater (water)
5….. Panr (prayer)
6…… Thak you for the earh (thank you for the earth, a song she made up)
7….. class

(I promise she can spell better if she really puts her mind to it, but I’m not one to hinder creativity here!) It was adorable. At the top she has that we are the 2nd Ward.

Daddy conducted, Adessa passed the sacrament and Gena sang her solo. There were no talks, which I’m just assuming she wanted to skip the most “boring” part of church for her. It’s amazing though watching them play and seeing though just how much they pick up. What they notice and how they perceive something is supposed to be. There are times where you wonder if they listen, and this is in regards to any activity really. Are they learning anything at school? Are they really paying attention in church? Do they actually pay attention to the activities we do for them. I tell you, it can be quite the eye-opener when they play house and if one of them is the mommy how they act. Like seeing yourself through your kids eyes. I’ve cringed once or twice.

So I’m having a problem with my 3 year old. Ms. Independent has suddenly, and quite drastically I might add, become clingy. Now this isn’t unusual for a child of course, but it is unusual for someone who has been such an extreme opposite to fling herself to the other side so quickly. It started on Sunday. She had a part in primary and wanted her Daddy to take her to do it so I took Caden to class with me. Well… Adessa didn’t want to sit with her class, she wanted Daddy. Then she wouldn’t even GO to class. I took over at this point and used every tactic in the book from telling her how fun it would be, she can make friends, bribery and even small threats and nothing worked. I decided to make NOT going to class as unfun as possible and she stood in the hall with me against the wall the entire time. I was thinking this was just a 1 time thing. She usually loves primary and doesn’t mind going to class at all.

Then today, Adessa had a complete meltdown saying she didn’t want to go to preschool. This girl adores preschool. She loves her teacher, she loves her class, she loves the activities… you get the point. She would not get out of the car. She was bawling telling me she wanted to go home. That she now hates her teacher. It was a repeat of Sunday. I again tried everything. Genevieve and I spent a good 10 minutes telling her how much we loved preschool, all the fun activities she gets to do, Gena telling her she wishes she was in preschool again. It distracted her on the ride there. She was in complete melt-down mode. So now I have to start telling her she won’t be able to go to Karate tonight (again, she adores Karate) and it doesn’t phase her. I up the consequence, I won’t sign her up for dance class. She cries but doesn’t budge. You can all criticize me for my poor parenting skills later.

I tell her if I have to leave preschool with her right now then she will stay in her room for 2 hours when she comes home. Again, trying the “making it as UNFUN as possible”. She just agrees and cries that she wants to go home. She’s currently in her room on her bed.

I thought Sunday was because of something maybe going on in class she couldn’t express, but now preschool?! This is a sudden change and I’m not sure how to handle it. It’s not the idea of being away from her mommy and daddy from what I can see, so much as that she just doesn’t want to go and do these things she once loved. I have no idea what to do here. Trying to get information out of a 3 year old is difficult, the expression just isn’t there. When I ask her why she doesn’t want to do these things she only responds “I’m just having problems” but won’t clarify. I don’t believe she’s being picked on or bullied, so that’s not the problem. I just have no idea why my once independent 3 year old doesn’t want to go and do anything anymore.

Please, if any of you have any words of advice or methods to try to get her to go to school and sunday class share!!

The appointments never end!!! First off, Caden is 8 months old today, (yeah!) and his nurse was here today. She’s very pleased with how he’s grabbing toys and even doing a little bit of back-and-forth between his hands. He’s starting to get a little more steady when you prop him up, building those tummy and back muscles. He’s starting to move a lot in his crib too as he pulls those little legs up and wiggles.

This little boy is the happiest and best baby you will ever meet I swear. I challenge anyone who has a ‘good’ baby to compare them to Caden and have an NG tube shoved up their nose and down their throat and for their baby to just lay there the whole time. No squirming, no crying, no gagging. It’s incredible. He’s so happy all the time and it’s only when eating that he fusses. I can’t help it, I’m in love with the little guy. Those huge smiles and laughs he gives me just melt the heart.

We’re very lucky with Caden right now, I can’t believe how well he is doing developmentally and socially. His interactions and preferences for human faces (big deal). The fact that he’s doing well for his adjusted age of 5 months, I’m truly blessed. We are certainly not out of the woods yet for things such as cerebral palsy and other delays but right now, besides his feeding issues, he’s doing just wonderful. His numerous doctors just look at his medical history and are amazed that this little baby is okay. There’s always that small part of me that fears the worst though… I mean it stands to reason that if you KEEP going to all these doctor’s constantly that something will drop on you. I think the fear comes from the fact that with Caden, it always seems to be when I think everything is going well that something big happens.

I was excited and for the first time wasn’t nervous when I got our ultrasound of Caden at 20 weeks. Then hearing those words from your doctor “there’s a problem….” and finding out our baby had a birth defect. I was feeling fine the day that I delivered him and went from great to emergency c-section and my liver in danger of rupturing in a matter of hours. Then the NICU stay and so much equipment, medicine and medical problems over the course of 4 long months; with more heart-catching-in-your-throat moments then I’d care to recall. Having such a great day with my girls when Caden was supposed to be stable at 3 months. Expecting my little boy to come home within days and then having him Code for no reason that was ever determined. It seems to be a pattern and so I feel like I’m constantly holding my breathe.