Lip Taping

We just got back from visiting Dr. Yamashiro, Jake's orthodontic surgeon at Primary Children's. He was really pleased with Jake's progress! Today we learned how to tape Jake's lip to bring the two pieces closer together. Jake was not happy about it at first, but only fussed for a little while. I swaddled him after the Dr was done and held him until we got to the car. Then he fell right to sleep! He's such a good kid.

The lip tape actually helps the NAM stay in much better! The few times the rubber bands came off it stayed in place because there was actually lip in the way! For the first time, we can see sort of what he will look like when the surgery is done. It's actually really strange. I'm going to need a little while to get used to it. He's going to look like a typical little boy, but we're so used to him the way he is. I have to admit, I've got mixed feelings about it. Obviously, we want the repairs to be done. It will give him a healthier and happier life overall. But he's my little boy, and I love him just the way he is. It breaks my hear to think about what's in store for him in the next few months. But that's just between you and me. Eric and I believe very strongly that children look to you for what the appropriate reaction should be. When he gets little things like the lip taping done for the first time, we try to take it in stride. Aside from some Tylenol and a few extra cuddles we treat him and his sister like it's just another, normal day. Surgery will be a different case, but so far, his fairly relaxed attitude has mirrored our own. I suspect the whole experience will be more traumatic for me than for him. But either way, I'm not looking forward to it.

Swaddling Essentials!

So far, nothing has been more helpful than swaddles! Here he is sporting his tropical look in the first swaddle I made. Jake gets pretty worked up sometimes. Whether it's trying to change his tapes when he's not in the mood or feed him when his mouth is a little sore, Jake's a really strong kid and he flails and arches when he's mad. As a newborn, receiving blankets worked ok, but he could get out of them pretty early on. Then we got him a Swaddleme. These are awesome!!! Because of the velcro, he couldn't work out of it no matter how upset he got. Having his arms securely by his side really helped him calm down and relax.

Now that he's bigger (24") the Swaddleme is too small. There is no medium size, and the large is waaay to big still. So I used the pattern from the book "Simple Sewing for Baby." The pattern is really simple and easy to modify. I added 4" to the length because my little ones are long and skinny. The next time I make them, I'll add a little to the length and the width. I lined mine with knit. (money saving tip - look for knit sheet sets, usually on sale after kids go back to college. There are yards and yards of fabric there. Way cheaper than buying knit yardage at a fabric store.) Because the outside layer is regular cotton, it doesn't stretch the way the Swaddleme does. Every time I change Jake's tapes, brush his gums, and clean his NAM, I swaddle him. It keeps him calm, lets him know what's coming, and keeps his hands out of the way. Both Jake and Lily get swaddled for bed and they both get placed on their backs to sleep. Nice & safe!

PLEASE NOTE: Always follow your doctor's advice and the NICHD's guidelines for safe sleeping and SIDS prevention.

Progress!

On Monday, I thought I was imagining things. But today it's pretty obvious that Jake's cleft is starting to get smaller! I didn't expect to see progress so quickly - this is really encouraging. The Dr said that because the retainer keeps the bottle and his tongue out of the gap, the cleft would start to come together a bit on it's own. I don't know if he will continue at this pace, but like I said, it's encouraging!

Getting Easier

I think we're getting this NAM thing down. The bandaid, while it held for over 24 hours, wouldn't come off of the dot. I had to take off the adhesive cover because the bandaid ripped off around it! So those are out. I tired that regular, white first-aid tape, but it was way too stiff and just a little too wide. So we're back to the Transpore. Taping it to the dot's adhesive cover works the best. The transport hangs over a little and sticks to his cheek on each side of the dot which seems to stop it sliding so much. Whew! So here's our routine;

Before getting started, I put the following in easy reach of the boppy - rubber band tapes (assembled ahead of time by Dad and stored in a tupperware)extra tape, burp cloth, q tips (lots!) alcohol, Eucerin, cup of water, baby toothbrush (pre-moistened with a little baby toothpaste already on it.) Then Jake gets swaddled and tucked in the boppy.

1. Remove one tape.
2. Using a q-tip dipped in rubbing alcohol, remove any adhesive from cheek. (watch out for the eyes! Jake is usually squirming plenty by now!)
3. Apply a thin layer of Eucerin calming cream to any irritated spots on cheek and rub in gently.
4. Put on new tape.
5. Repeat with the other side.
6. Remove NAM.
7. Check for any sore spots inside mouth.
8. Using a q-tip moistened with nasal saline spray, carefully remove any dried bogers from cleft. Carefully!
9. Gently brush gums and tongue with baby toothbrush and a teeny bit of baby toothpaste. Watch out for the exposed sinus - it's very sensitive!
10. Rinse brush and gently brush again with water to remove any toothpaste residue.
11. Dip NAM in water and brush off any formula residue.
12. Replace NAM while still damp.
13. Give baby cuddles and allow him to relax before doing anything else for a while!

This is just what we do and is not intended to replace your Dr's advice. But it works for Jake ;)

Here's a very sleepy Jake rocking half a Spiderman bandaid. It's fashionable and holding really well. I've been trying some different tapes and configurations since yesterday. We'll see what works out in the long run.

In other baby news, Jake and Lily are sitting in their bouncers right now, purposefully hitting the toys above them! They're growing up so fast!

Adjusting to the NAM

Adjusting to the NAM device has been a little challenging. More for us than for Jake! Feeding seems to be much easier at night when he's half asleep. The rest of the time, he fusses and cries and whips his head around before settling down to eat. Sometimes it takes almost 5 minutes of drama before he'll calm down. I've been keeping him swaddled until after he eats, that helps quite a bit. The nice thing is that it seems easier for him to breathe while he's eating. The NAM essentially creates a second nostril for him. Before, the whole cleft would fill with milk. If he was a little stuffy or even just not paying attention, he would drink until he choked. We had to pay real close attention while feeding him to make sure we pulled the bottle away if that was starting to happen. Now, once he settles down to drink, it's usually smooth sailing. It seems like using his tongue and jaw in a different way tires him out a bit. Jake usually wants to go to sleep after a feeding. Before, that used to be playtime!

The tapes have been giving us a lot of trouble. Getting them on isn't as hard as I thought it would be. Getting them to stay is another matter. His skin reacts to the Transpore tape so we use dots (I don't know what their official name is.) But the Transpore keeps slipping around. I've tried taping it to the dot's top patch of adhesive, to the plastic that covers the dot's adhesive, to the adhesive and then putting the plastic back on over the whole thing. Nothing seems to hold for long. They don't always fall off, but it creates enough slack that the rubber bands just slip right off the NAM's posts. Even when the tapes are holding, the rubber bands will fall off if Jake presses his cheek against anything. He is so used to burrowing his face in my shoulder that it's hard to give him comfort without dislodging the NAM. Grr. In two weeks, we are supposed to begin taping the two halves of his lip together. Since he reacts to the tape and it doesn't hold anyway, I'm a little worried about how that's going to work.


This picture shows him in his boppy and swaddled right after getting his new tapes put on. The velcro swaddle bags I made have been an absolute lifesaver. More on that later ;)

Aside from being a little extra fussy and sleeping a little more than usual, Jake's having a grand ol' time. I'm a little frazzled though, but it could be much worse.

NAM!

Today Jake got his NAM (Nasoalveolar Molding) device. We just call it a retainer. That's basically what it is and 'retainer' is an easier concept for most people. (Family, friends, and even random people in stores want to know what it is, but don't need a 2 hour explanation with a big Latin name :) It's made of clear plastic so it's kind of hard to see. Since he doesn't have any teeth for it to clip onto, we have to put tape on each cheek that has a rubber band on the end. The rubber bands slip over the two 'fangs' on the front of the retainer to hold it in. That's Doug the dog blankie he's holding onto by the way. Doug and Jake are best buds.

Jake didn't mind when Dr Yamashiro put the tapes on but freaked out when the NAM was put in. He cried so loud we couldn't hear the doctor! We should have asked our questions first. I was so worried that Jake would just be screaming for the rest of the day. But 5 minutes later he decided it was fun to suck on and quieted down. He fussed on and off all the way home, but when it was naptime he went down with no problem. Now he's playing on the floor like usual.

Today was a lot easier than I expected. I mean, he's been a little fussier than usual, but he seems more annoyed than anything. I can handle annoyed. I was prepared for non-stop screaming. The laundry and dishes are done and I stockpiled a bunch of candy (chocolate does wonders for my nerves ;) in anticipation of a really rough time today. Of course, as I typed that last part he wigged out and wouldn't stop crying. But we went for a walk to get the mail and now everything's cool. :)

Getting Started

The twins are asleep right now, so I'll try to quickly catch you up on the story so far.
After 4 years of trying, we got pregnant through IVF. Yay! Found out shortly after that we were having twins. Double yay! In the 5th month, we found out Jake had a cleft. The Dr. had been monitoring him closely through ultrasound because there was another congenital deformity that occasionally shows up on my husband's side. So when they very somberly told us about the cleft, we were like, "is that it? Ok, we can handle that!" (Really freaked the nurses out ;) Of course, there were the usual feelings of disappointment, fear, and guilt that we had to work through. But from the beginning we were determined not to treat him any differently than his sister. He was never 'my poor little guy with a cleft.' He was and always will be simply 'my son.' Here he is at 2 weeks old, sleeping with his arms up. :)

Feeding Jake was difficult at first. Once he got a little bigger, we introduced the pigeon nipple. Except for some mild reflux, he eats just as well (sometimes better!) than his sister. At 2 months, the twins hit 10lbs and we started them on a regular schedule. The guidelines in the book 'Babywise' have been perfect for our family. They eat every 3 hours (give or take 15min or so) throughout the day. Bedtime is at 8pm, they wake up once a night for a feeding between 1 and 3am, and get up at 8am. Since we started this, they have been so much happier and calmer! Now we wake up with smiles and go to sleep (relatively!) quietly. I'm hoping that the predictability of the schedule will help Jake settle more easily after each procedure.

Jake's Story

Ever since my son, Jake, was born with a cleft lip and palate a few months ago, I've been reading other parent's blogs. My husband and I have learned so much and have been so comforted by these stories. Jake (and his twin sister) are our first children. So not only is the cleft thing new to us, but the whole parenting thing is new too! It's been so helpful to hear how other parents have handled cleft issues, surgeries, and siblings! I decided to document Jake's story in hopes that it may help someone else out. At the very least, it helps to know you're not alone. And it's a great excuse to show off my boy's beautiful smile!