December Delights

We are enjoying Simon's first holiday season, with our winter solstice tree trimming at Mom-Mom and GP's house, and a visit to the Christkindlmarket and Macy's windows downtown. Simon is also celebrating winter by catching his first cold, which led to croup. Big fun! He has bounced back quickly, and we are looking forward to seeing Giddo and Teta next week.

Happy Chrismukkah!

I heart Johnny Cash (sleep strike update)

The sleep situation is getting better around here, slowly but surely. Simon took back his old friend towel, which has helped him settle down. We are also trying out a more strict sleep and naptime schedule for him this week, and it seems to be helping. If he wakes up between 8 p.m. and 1 a.m., we go in to let him know we are still here, give him the towel to play with for a while, and most importantly, turn on Johnny Cash's Sun Studios recordings with the Tennessee Two. Johnny seems to keep him company and help him get to sleep. Gotta love Johnny.

Poor little dude, last weekend he was so exhausted from his sleep strike that he fell asleep like this while we were out and stayed on the couch that way for a whole hour.

Happy Thanksgiving, baby friends!

Simon had a wonderful first thanksgiving weekend. Starting with Thanksgiving dinner, where he was the first baby in about 18 years, continuing through Saturday brunch out and Second Thanksgiving, where he got to hang out with some of his baby friends, Dylan, Marin, Ross, Lucas and Noah. He had a little turkey in his mesh feeder toy, but mostly stuck to butternut squash and oats and rice and avocados.

sleep strike

Now that Simon is 6 months old, he's had to give up some of his favorite sleep aids. He's getting too big for the swing, and as he rolls over more he can't sleep in the swaddle anymore. It seems like he's decided that if he can't have those, he won't take the pacifier or the towel anymore either. So that leaves us with... very little sleep.

This past week and a half he won't sleep in his crib during the day at all, so he only naps if he goes somewhere in the car and he just can't resist the motion. He never much liked the car before, so he must be really overtired for that to work.

He hasn't been sleeping very long stretches at night in the crib either, much preferring to sleep on one of us, preferably with a bottle hanging out of his mouth. Last night he finally did a little better staying asleep on his own, 4.5 hours at the first stretch. We're hoping to build on it this weekend, and find a new sleep routine that works for him (and us).

He's still as cheerful as ever during the day, as long as I'm not trying to put him down for a nap.

6 months old

Photos by Brenna Hernandez, yay!

Simon is 6 months old as of last Saturday. He's doing really well, working on sitting up without toppling over. His 6 month checkup shows a healthy happy boy - now 26.5 inches long and 16 lbs. 4 oz.

He's sleeping a little better too, we're getting more 6 and 7 hour stretches at the beginning of the night. That still leaves us waking up at 3 and 5:30 a.m., but we'll take it. He's a great eater, scarfing down rice, oatmeal, squash, peas, prunes, bananas, and grapes. So far he likes everything.

Food, glorious food

We started Simon on solid food for real last week. He loves everything we've given him so far. Especially the spoon. Thanks to Teta for the two-spoon suggestion (and for the great silicone spoons!). He gets so excited about the spoon he grabs it and won't give it up, so we use two, and trade him the full one for the empty one.

Since he still has a big gap in his hard palate, some of the food goes up there and comes out of his nose. It irritates his nose a little, and he sneezes it out. Gross, but it gets the job done.

Happy Halloween

First food - BANANAS!

I think he likes them.

Cleft team appointment - 2 months post op

I took Simon to RUSH for his 2 month post-op checkup on Tuesday. He saw Dr. Figueroa (orthodontist, top) and Dr. Polley (surgeon, bottom) and they say everything looks great! His lip and nose are healing well, and the redness of the scar will continue to fade over time.

The best news is that his palate cleft is already closing quite a bit. Dr. Polley says that after he does the lip surgery and soft palate repair at the same time, the tension in the front and back of the mouth allow the hard palate to gradually grow closer together. This doesn't always happen, but it is working for Simon. He is very optimistic that we will be able to do the palate repair on the early side - he mentioned March dates, but I'm expecting more like April or May as we originally discussed.

We want to strike a balance between making sure the cleft is as small as we can get it before doing the repair, and doing it early so his speech development is not delayed. The other good news is that we don't have to go back until early February, when we will check the progress of the palate. It will be great to have a long break from doctors' offices!

More Visitors

We had a great time this weekend, taking in the fall colors and visiting with Aunt M and Uncle J. Simon is enjoying his new super awesome Rubik's Duckie. As usual, I was having too much fun and didn't take as many pictures as I would have liked, but here is a fun video.

The Sultan of Apartment 2A

September Has Been Craniofacial Acceptance Month

I have been meaning all along to have a page where we explain a bit more about facial clefting in general and Simon's cleft in particular, so I will squeak it in under the wire here right at the end of September. I will continue to add to this page as I find out more, and as Simon's journey progresses. Let's start at the beginning:

What is a cleft?

A cleft of the lip and/or palate occurs very early in pregnancy, between 7 and 11 weeks after conception. The face and head form from back to front, normally meeting in the middle and forming the two lines under the nose and the raised ridge running down the center of the palate as they fuse. If the timing is off for some reason, the lip and/or the palate fail to fuse completely, and the resulting gap is the cleft.

Simon was born with a complete unilateral cleft lip, meaning the gap extended into his nostril, and a complete unilateral cleft palate, meaning the gap in the palate runs all the way from his gumline in front, through his hard and soft palate, to his uvula in the back.

What causes a cleft? Is it genetic or environmental, or just random?
The causes of clefting are only partially understood. In some cases it runs in families, and some ethnic groups have a higher incidence of clefting, but most of the time there is no family history and no connection to any other health problems. There are also some environmental factors which can increase the risk, such as maternal smoking, certain medications and high exposure to pesticides, but again most of the time it is just a random thing. We were completely surprised by the diagnosis, since we have no family history on either side, and I was extremely careful during the whole pregnancy, doing everything "right."

We didn't realize that clefts are the most common birth defect, affecting one in every 600 births in the U.S. We all know people affected by clefts, but most of the time don't realize it because of the wonderful success of repairs, which are performed so early most of us have never seen an unrepaired cleft lip.

Simon's timeline so far:

December 19, 2009:
19 week ultrasound reveals cleft lip and probable gumline involvement. We can't tell anything about the palate until birth.

February-March 2010:
Interview 3 cleft teams and select RUSH University Craniofacial Clinic

May 6, 2010:
Simon is born, and we see that he has a complete cleft lip on the right side, and a complete cleft palate, which means he will not be able to breastfeed, since he can't create a seal and get suction.

May 20, 2010:
Simon's first cleft team evaluation

May 25, 2010:
Remove a tooth that is erupting in the cleft site of the gumline

May 28, 2010:
Begin nasoalveolar molding (NAM) treatment

August 5, 2010:
Lip, nose and soft palate repair surgery, ear tube placement (age 13 weeks)

April 20, 2011:
Hard palate surgery and soft palate revision

TBD, 2017-2019:
Bone graft to complete gumline

More information to come...

Out and About

September is just about the best month of the year in Chicago. It's been strangely hot here all summer, so we have really been enjoying the great early fall weather. The first three months we didn't really take Simon very many places with lots of people because we didn't want him to get sick before his surgery. Now he's free to pick up as many germs as he wants. Here are some pics from the last month, visiting the Botanic Garden, the farmer's market, Moody's patio and the zoo.

Rolling over

Aunt Birdie says that rolling over might be the most boring of the important milestones, and I can't argue with that. Still, our brains are so soft from sleep deprivation, we found it pretty exciting when we accidentally captured Simon's first time rolling from front to back on video. Thanks Teta for the toy phone which is so mesmerizing it made him roll over without hardly realizing it.

My best friend, Towel

Simon loves to play with dishtowels these days. We use them as burp cloths and he keeps grabbing them off our shoulders to keep for himself. He always looks like he won the lottery when he gets a hold of one. It seems to help him get to sleep for naps to have one next to or over his face. Then of course I have to move it away once he falls asleep because babies are not allowed the risk of blankets, pillows or stuffed animals until they are at least a year old.

4 months

Simon had his 4 month pediatrician visit yesterday. He's doing great overall. The only little hiccup is that his eating has not been back up to the levels he was at before surgery. Partly this is because his special bottles don't seem to be working as well for him now that he's bigger and he's eating without his NAM mouth plate. We've been trying out some new bottles, and I think we've found a new solution that works for him, but in the meantime, his weight gain has been slower than it was before. The doctor gave us some extra calorie formula to add to his breastmilk for a little while, until he gets back up to speed. I'm hoping that in addition to fattening him up, it also helps him sleep better.

The pediatrician said she sees that a lot of babies after they have surgery with general anesthetic seem to have a mild PTSD type reaction afterwards for a while. Even though they're totally healthy, it just takes them a few weeks to settle down. That certainly jibes with our experience. Just looking at the itemized hospital bill, I can't believe how much stuff went into his little system in the course of 24 hours.

Surgery followup

The roundest head since Charlie Brown

One finger escaped the swaddle when he fell asleep after a busy afternoon with Mom-Mom and Grampy.

We had our surgery followup appointment yesterday at Rush Craniofacial Center. Dr. Polley says everything looks great and is healing just the way it should. He will continue to wear the nasal stents for another month. The 6 weeks following surgery are the most critical time for healing, and we want to maintain the nice symmetry of the nostrils that we got from all that hard work with the NAM.

We are also putting a silicon gel on the scar several times a day to keep it soft, which is why it will always look like he has a runny nose for the next few weeks (although he also drools constantly, so probably his whole face will be kinda wet). Luckily he has developed an enthusiastic love for burp cloths and towels, which he grabs and stuffs in his mouth at every opportunity.

We'll be back for a checkup at the surgeon in 6 weeks. Tomorrow we have Simon's 4 month pediatrician visit, so we'll see just how big he's gotten and get him another fun round of shots.