Getting so big!

Here's my big guy a few days after his soft palate surgery. It's always tough putting him through a surgery, but this was the easiest so far. A few hours after waking up, he was playing and eating just like always. After a week, he's saying "Mama." I've waited so long to hear that!!!

This is a great picture of his new lip. We've just started massaging his scar. Over time it should lengthen a bit and not pull up the way it is right now.

Here we go again!

Things have gotten crazy as the twins grow up! They're so much bigger now, and need so much more attention! Jake's final lip surgery was a few days ago. It's been a tough recovery so far. He and Lily both got a bad cold just as he came home, which hasn't been easy. Lily had night terrors last night, I hope that doesn't continue! Anyway, here's a picture of Jake's new lip. He looks amazing!

Here his is shortly after surgery. We brought some long sleeved shirts this time, so he was a lot more comfortable with the arm restraints.

Even though he's had fevers and a cold, he still wants to play. What a tough guy! We're heading out to spend Christmas with relatives in California tomorrow. I'm glad he's starting to feel better before we hop on the plane. Merry Christmas everyone!

Right as Rain

So it's been just over 12 hours since Jake's surgery and he's back to his old self already. Grandma and Grandpa came to visit this evening and he was sitting up on his own, laughing, and grabbing at Grandma's hair - just like always! In a way, the partial repair has been nice. It's an easier adjustment visually. He still looks like Jake, just a little bit different. He certainly acts like Jake. We read our favorite book, played peek-a-boo through the crib bars, and now he's refusing to settle down and go to sleep. Just like every night! Here he is catching a little tv before bed.

Jake's First Surgery

4am is Too Early!

Jake is out of surgery and sleeping peacefully. The surgery went well, although they were not able to do the full lip repair as we had hoped. There was not enough lip tissue to bridge the gap (which is pretty wide!) so they had to do just a partial lip adhesion. We'll have to bring him back in later to get his lip worked on again. Not what we were hoping for, but not really a surprise. Today has been hard on all of us - we're exhausted. On top of everything else, we had to get up at 4am! But, for the moment, things are peaceful. I think I'll take a cue from Jake and just take a nap.

Cleared for Surgery

Playing in the waiting room

Sleeping it off

Surgery Tomorrow

Jake's surgery is at 6am tomorrow. Almost done packing and cleaning house! I'll be posting from the hospital provided I can get on the hospital's wireless and only if Jake doesn't need me for a few minutes. Here is Jake and turtle taking a break from the NAM. This is the 'before' picture!

Jake Speaks! (sort of...)

Jake is starting to make a lot of new sounds. We were kind of surprised. With a cleft soft palette, I thought we wouldn't hear much more than the incessant "eh, eh, eh," noise that he makes. His first sounds were "ow," and "ai." (After every sneeze or cough, he used to say "ow." We cracked up every time!) Within the last week, he's added g, r, and l sounds! The g sound is actually a result of him gurgling drool, but he does it purposefully to say something like "grar." Yesterday morning, he looked up at me and said "lal!" I couldn't believe it! (Laundry Jake!)

Jake's New (Safer!) Highchair

So the yesterday we had a little scare during lunchtime. It wasn't really a big deal, but it rattled me a little! Jake's reflux has been acting up a little the past few days. He and Lily were in their highchairs when Jake spit up and started choking. Lily has a Graco highchair (pretty pink!) with a quick-release 5 point harness. Jake's was an Evenflow that had a 5 point harness, but the shoulder/waist straps were one solid loop. To get him in, you had to put his arms through the loops. Well, when he started choking, he started flailing his arms, and I couldn't get him out! I ended up having to tip the whole highchair forward with him in it until he coughed it all out. That was enough for me. That very day, I traded the Evenflow in to Kid to Kid for another Graco with a 5pt quick release. They even had a matching one in a blue pattern! So now our highchairs are equally safe and match too. Couldn't ask for more.

Getting Closer!

Jake's appointment with Dr. Yamashiro went great yesterday. He said Jake's nose is really shaping up and was happy with how close together the palate is. I'm still a little nervous about his lip. We just can't get tape to stick to that one little side because it's on a different level. The tape sticks to the right side of his lip, then skips straight to his left cheek. Ah well, I guess if there's nothing you can do, then there's no sense worrying about it (I will anyway though! :) Here's Jake getting some Daddy-Tickles!

Taping the NAM

We've worked out a great system for taping Jake's NAM, so I thought I'd share. Instead of the transpore, we use band-aids to make the rubber band tapes. The fabric kind are the best. We still use the dots because Jake's cheeks will react to the adhesive, but they stay so much better that we can keep them on for a few days at a time. This results in less overall irritation - yay! So here's what you do;
1. Cut bandaid in half while still in the package
2. Remove from the package and trim the ends
3. Remove one side of the adhesive covering
4. Thread the rubber band over the sticky end, all the way down to the bandaid's pad
5. Fold over the sticky end and you're done!

It's so much easier to store and get on his cheeks. The folded over part gives your a great place to hold onto it while the baby is squirming! We store them in one of those Gladware disposable containers. The lid is molded so that you can measure out the lip tapes ahead of time and just stick them to the lid. So handy! I've also started folding over a little bit of tape at each end, so we can get them off easier. Otherwise they really stick to the dots.

Getting Prepped

Since I was thinking about it (perhaps a little too much...) I decided to spend the morning gathering everything I need for after Jake's surgery. (Yes, I know it's over a month away but hey, obsessive preparedness is how I deal with stress. That, and excessive soda consumption. I could have worse coping mechanisms.) I got a Bumbo seat for him to sit up in (they already have another seat with a toy tray around it, but even without using his arms, he can lean forward and gnaw on the them.) and a few shirts and onsies that snap down the front. I don't want to be pulling anything over his head. Thank goodness for Kid to Kid stores! We're on a tight budget to begin with, and with the medical stuff coming up, we're trying not to spend anything. My mom is coming up to stay for a few days after the surgery to help me out. I can't afford any of the fancy restraint systems out there, so I'm making my own out of fabric I have stashed away (another coping mechanism actually - buying fabric!) It's really cute though! It has dinosaurs and green fleece on it. We call it Mr. Restrain-y Pants! Actually, that's what I call it. Eric just raises an eyebrow... :) After packing for the hospital,  all that's left to do is get the house clean... hmm, maybe I'm done getting prepared.

It's not a very clear shot, but here is Jake wearing his Mr. Restrain-y Pants (I only have one arm cuff done so far) And, like with everything else, he really doesn't seem to mind all that much.

Surgery Scheduled

Jake's surgery will be on September 14th. Trying to prepare for it mentally, but it's going to happen whether I'm ready or not. Best case scenario: it'll go great and he'll be all healed up within 2 weeks. Worst case scenario: his lip tissue won't be pliable enough so the surgeon will only be able to do a partial repair, and we'll have to repeat the whole thing a month later. Ok, so there are lots worse things that could happen, but I refuse to think about it. Besides, Primary Childrens' Hospital is quite literally the best facility in the West, so he'll be getting the best possible care. Anyway, here's a look at how far Jake has come in the past few months! Eating rice cereal (5mo), hanging out in the swing (3 mo), First visit with Nana (4 days).

Our Favorite Books!

Reading has become a regular part of our schedule. Before bed, or if someone can't fall asleep, we read a book to calm down and focus. It's really helped. They've even started turning the pages! Well, sort of. :) Lily likes to try to eat the books, and Jake likes to grab one page and not let go. Thank goodness for board and fabric books, especially the DK Baby Touch and Feel series! The covers are a little puffy, and the pages really sturdy, so they stand up to a lot of abuse. Here are our current favorites;
Jake loves the Trucks book! I picked it up just for some variety but it's quickly become his favorite! He likes to feel the texture of the tractor's tires the best. Lily likes it too but is much more interested in the Puppies and Kitties one. Her favorite thing to touch is fur and fuzzy things. I really didn't think those kinds of preferences would set in so early! Honestly, I thought boy/girl preferences were largely conditional, but I've had to rethink that!

But our favorite book of all is still Fluffy Chick. Lily will stare at the cover and pet Fluffy Chick. We really don't even have to read it anymore!

What am I reading, you ask? In the few, brief moments I have to myself, I've been reading "Bad Mother" by Ayelet Waldman. It's an exploration of why women of our generation (daughters of womens' libers) feel like we need to be career minded, domestic goddesses, and perfect mothers all at the same time, and how we end up feeling like we're failing at all three! It's hilarious, insightful, and incredibly comforting all at the same time.

Portraits!

Earlier I posted that I wanted to get a portrait of the kids before Jake's surgery. And here it is! It came out great!

I love this one, they're holding hands! Jake's got his hand in his mouth, but that's just what he does. :)

Eating Better

Boy, it's been a while since I last posted! Things have been real busy, but I'll try to catch up. We've had real success feeding Jake rice cereal with a 3cc open-mouth syringe. (The syringes come from the vet, by the way! Our local vet doesn't even charge us for them. They just gave us a handful and said I can get more if I ever need to.)Now he and Lily are eating about 2 tablespoons of rice a day, along with their bottles. My mother-in-law had given us these cute little bowls for Christmas a few years ago. They're actually sauce bowls and we've used them a lot (my husband's a chef, I certainly don't cook anything fancy enough to necessitate sauce!) But it turns out they're just the right size for baby-feeding right now!

Jake is lagging a little behind Lily as far as weight goes. We figure it's because he burns more calories trying to eat. Also, he puts a lot more energy into crying! Lily is more of a quiet whiner, but when Jake decides to throw a fit, he really goes for it! I'm thinking I might widen the Pigeon nipple openings a little bit and see if that helps. We moved Lily to fast-flow nipples now that she's bigger, so maybe Jake needs the same adjustment.

NAM + Rice Cereal = Grossness!

We started the kids on rice cereal during their lunches. I can't seem to get it together early enough for breakfast, and we're usually both exhausted by dinner. They only take about a tablespoon or two anyway so for now I think that's good enough. Lily has taken to spoon eating really well. It's a lot harder with Jake. You kind of just have to tip the food in his mouth and hope some of it stays in long enough for him to eat it.  He doesn't have a top lip to squeegee the food off the spoon, and he's also not used to keeping his mouth closed. So the rice cereal goes everywhere! He waves his arms around the whole time, often bumping the spoon so I spill cereal on his legs, constantly tries to lift the bib over his face, and shoves his fingers in his mouth while it's still full of rice goo. Eeeew! But he definitely likes it. The translucent cereal doesn't show up in the picture very well, but he's covered!

Cutie-Patooties!

Jake and Lily are growing and developing so fast, it's amazing! Here they are discovering they have feet!

And even though they both are just over 13 lbs, they're still not as big as our cat, Moxie!

Nose Post

 Jake got his NAM altered to include a nose post today. He was none to pleased about it. But he didn't sleep much this morning and neither of the twins ate very much before we left. I gave him a little tylenol and packed a swaddle this time. We had to wait a long time after dropping Jake's NAM off at the dr's office - it was really busy! We had lunch and then tried to feed the kids. Jake was so hungry, but didn't want to eat without his NAM so the wait was even longer with him crying! By the time we got in to have the NAM refitted, he was flipping out. Thank goodness for that swaddle! There was no way I could have held him still without it. Now that it's all over and they've both had a good meal and a long nap, things are back to normal. Once again, he doesn't seem bothered by it at all. I'm exhausted though!

Jake Plays the Piano!

Here's my big guy reaching out to hit the piano keys while supporting himself with one arm. What a strong boy! In the last two weeks, we've noticed a huge improvement in Jake's cleft. The two sides of his lip are almost touching and his nostril is really taking shape. Tomorrow we go in to Dr. Yamashiro's to get the nose post added to Jake's NAM. Hopefully it won't bug him too much. He hardly even turns away when I have to put the rubber bands back on anymore. Well, depending on his mood! I can't remember if I mentioned it, but we've started using the sign language gesture for "all done" every time we finish doing his tapes. He will usually calm down a little bit, or stop crying altogether once he sees that. It's so helpful! Even if he's still mad, at least I know he understands that it's over.

Jake and Lily have started playing with each other now. They will look at each other and smile, try to grab each others' clothes or limbs! When they're apart, they will look for each other. Lily seems fascinated by Jake's NAM and tries to pull on it, so we have to watch her. But they both have also discovered the joy of playing with toes! We still swaddle them but as soon as they get unwrapped, up go the feet! It's awfully convenient having toys attached to the ends of your legs! This is such a fun time.

I want to get a professional portrait taken of Jake before his surgery (kiddie kandids is having wicked good specials right now!) But I don't want to have it taken with the tapes all over his face. If I take them off, it takes a good long while for his skin to heal and the red splotches to go away. We started using A+D ointment instead of Eucerine because it works a little bit better. (Doesn't smell better though!) Even so, it'd be at least a day until his skin was better. But I can't leave his NAM out that long because he doesn't eat well without it anymore. So I don't know. Maybe I'll just take a blotchy picture anyway. I just want a nice portrait of how he is right now.

Explaining the Cleft

We went to a bbq on Thursday and saw a lot of our friends who hadn't seen our kids yet. A lot of people had questions and wanted to know about the NAM. I've noticed that, with the tape all over his face, most people feel a lot less awkward asking about his cleft. It gives them an opportunity to ask about what treatment we're doing instead of just asking what's wrong with his face! :) Eric and I have the schpiel down pat by now (it's a cleft bla bla bla, well it's actually pretty common bla, bla, bla, once the surgery is done he'll just have a little scar bla, bla, bla.) I don't feel any need to go into the fact that there are multiple surgeries over years. We'd rather people be impressed by what medical science can do, rather than felling sorry for the little guy.

I had a chance to explain the whole thing to a child for the first time too. He was about 7 or 8 and his parents were listening but let him ask his questions. He was really interested and it was neat to watch him try to understand. He asked if Jake was born that way and I said yes and let him know it didn't hurt. Then I explained how Jake's lip was made in two pieces instead of one like his. That seemed to make it easier for him to understand. I told him how Jake could stick his tongue all the way up his nose and he thought that was pretty funny! Once he was satisfied with the explanation, he turned to Lily and said "and she's got a really funny looking chin!" At that point his dad stepped in and said it wasn't polite to point out how funny looking people's babies were. We all had a good laugh over that!

Two more weeks

Well, the doctor was pleased with Jake's progress but won't put in the nasal post for another two weeks. Jake's nostril is really starting to have a shape and isn't just flat across anymore. The dr wants to see a little more slack in it though before adding the post. I was a little disappointed but there's no rushing these things I guess. Dr. Yamashiro did adjust Jake's NAM a little and it seems to fit a lot better. Here he is playing with Stinky, the rat (who is actually quite fluffy and adorable!)