Nonni's Volcanic Birthday!

Since Nonni was going to be up here for her birthday, we wanted to spoil her a little bit. Coincidentally, the boys and I have been watching the hilarious baking “fail” showed called Nailed It and fell in love with the volcano cake.

We thought Nonni would probably love getting such an awesome cake for her birthday, even if it wasn’t the most traditional cake for turning 68… ;)

Despite the failures we saw on the show, we were convinced we could pull off an awesome volcano cake and I think we did! Of course, we didn’t have to deal with the clock like the people on the show did and it actually took us quite a while to finish it, but we had such fun making it!

First step was to practice making our chocolate dinosaurs! Obviously these aren’t chocolate, but I figured practicing with Play-Doh was the closest thing. Plus I was still trying to figure out how to make modeling chocolate since there was none I could find in town.

Thomas was pretty proud of his dino-riffic creation!

Next step was to bake the cakes! We had to have lots of layers to make sure our cake wasn’t a squatty affair. We want some height to our volcano!

Henry wanted to help with cracking the eggs and after he cracked his first egg, he stuck his finger in his mouth! I know it looks like I picked up my camera to take a photo, but I was taking photos on rapid fire of him cracking the egg and he did it before I realized what he was doing. Thankfully he didn’t get himself sick and only looked a little concerned when I started panicking…

Thomas finally realized we were baking without him and came over to help. No idea why he was wearing his life jacket, I don’t even bother to ask anymore…

It’s starting to take shape! The biggest fail the people had on the show was not carving the cake, even though that was definitely in the directions. So we made sure we carved it properly! Which of course meant that there were lots of cake scraps piling up - you can see what happened to most of those scraps if you look to the left of the picture. ;)

Natalie didn’t get to help with the cake, but she seemed unbothered by being left out. She was getting some good tummy time in!

I frosted the cake with the chocolate base and left them in the fridge overnight to set-up a little bit.Then we got to the decorating!

Both the boys got a turn at decorating and you can tell they were pretty excited about being able to help!

Even Matt got in on the excitement! He wanted to make sure that our beach looked accurate enough.

Nonni wanted to taste test the scraps from the hole we carved in the top and Natalie thought she should get some too. Nonni managed to keep her a safe enough distance that no cake ended up in the baby’s mouth. Good job, Nonni!

Finally it was cake time! This volcano cake was about to blow! I would have liked the dry ice to bubble out a little more vigorously, but it was still pretty awesome!

One of Thomas’ dinosaurs. I love that he made them friendly dinosaurs! And my awesome improvisation for the trees goes great with the beach Matt created. What a team effort!

Henry’s dinosaurs were… umm… possibly a little less evolved…?

I love that he gave them such silly expressions though. :)

And a final cut-away to show you the cup of dry ice that was causing the bubbling. Overall I think we did an awesome job on our volcano cake and I can’t wait to try another one of the ridiculous cakes from the show. :)

Happy Birthday Nonni! She said she couldn’t believe she had to wait 68 years to get such an awesome cake, but that it was totally worth the wait. =D

Random August

Ready for the usual random photo dump?

Well let’s get started then!

It’s amazing how exciting a churro and a 25 cent bottle of water can be when you are a little kid. I love our Costco runs and how much fun they have eating all the samples. Plus they are always supportive when I say “We should buy this ridiculous snack, right?”

Henry was happy, ignore his expression…

A lunch date that wasn’t Subway! He was pretty excited about his cheese quesadilla and getting to hang out downstairs at work with me. Less excited when people kept stopping by to say hi when they saw I had such a cutie sitting with me.

I think it is totally understandable that I tend to freak out of little things that she does that seem “weird” and I have to wait to ask her physical therapists if it is ok or not. Case in point - she keeps flipping her hand under when she is doing tummy time these days. They weren’t entirely sure why she was doing it, but then I handed her the binkie she dropped and she held it in her mouth with that same backwards hand motion.

Well there you go - she’s been doing that since about 6 weeks old…

This kid busted his lip good the other day at school. He said he fell on the climber, though I am not 100% sure what he means by that. I do know that he was being walked in from outside to get ice the exact second I walked in the door. Poor guy was upset…! Turned in to a pretty gnarly bruise a few days later.

Thomas comes home with some pretty random arts & crafts from summer camp. But I loved this headpiece. I think it looks like his head is a flower, but he did not agree. “It’s a crown, mom!!” Ha!

Sam was over at the house and ate a random Payday candy bar I had sitting around. I totally didn’t mind, but I still gave him a hard time about it, because that’s the kind of friends we are. Got this package in the mail a few days later.

You know this will only enforce my bad behavior, right?!?

She tried to steal one too! Hands off, cute little baby!

We finally switched DME (durable medical equipment) companies to the in-network supplier. We had to use the out of net work supplier when she first left the NICU because they were the only one that had the Apnea monitor. And our insurance gives you 6 months when you get a waiver for a network deficiency. I was totally putting off switching because it seemed like it was going to be a huge hassle.

Turns out, it wasn’t too bad. And the upside is that we got a new O2 monitor - the cord is a little shorter, but it’s smaller and not quite as annoying…

These guys wanted to stay up late (I know the sunlight is deceiving…) to go pick up Nonni from the airport. Not only that, they wanted to wear their fancy clothes as well! How can I say no to that??

Pretty sure everyone thought Nonni had the cutest welcoming committee! :)

For a girl who isn’t allowed to have anything by mouth, she sure is interested in food. Her dad waved this popsicle in front of her and she grabbed it and held on for dear life. She was pleasantly surprised when she stuck her fingers in her mouth a few seconds later.

(I’m not going to rat anyone out with photos from a similar burger incident, but let’s just say this girl has quite the grip…)

One of Natalie’s therapists is working on getting a certification in infant massage and needs to build up hours teaching caregivers of babies the massage techniques. So Natalie graciously offered to be a massage recipient. The giant baby doll was to demonstrate the proper moves to Nonni, but Natalie thought it was a real baby and got so very excited. By the second session, I think she had figured out it was a doll, but there a pretty close in size, huh?

Natalie is cuter! ;)

I have been reading everything I could online about managing reflux in babies given the awful results of the ph probe study. I think the most frustrating part for her / me is the amount of time she has to spend in her chair sitting up. Her feeds take almost an hour and then she really needs to stay upright for another 30-60 minutes. Which means she only gets an hour out of the chair between each feeding. Especially if she falls asleep and then wakes up just in time for the next one. Homegirl is tired of that chair!

So imagine my surprise when I saw a recommendation on the Seattle’s Children’s website that anything that keeps them upright is effective, including bouncers. Well we just happen to have one of those laying around, so I pulled it out to give it a try. She looooooooooves it! She twirled and bounced to her heart’s content.

Of course, she still has to stress me out and kept rolling her foot sideways when she was standing up. Guess I have another item to discuss with the physical therapists and hopefully they are supportive of the bouncer. Otherwise, I may have to go rogue…!

(They were totally on board as long as we don’t let her hang out in it all day and showed us how to use blankets to better support her in it until she’s a little bigger - whew!)

7 Months!

Lucky number seven! Can’t believe she’s that old already!

Look at this girl sitting up like a champ! She still can’t quite get up on her own, but if you sit her up, she can stay up. Such a big skill for such a big girl! And she’s holding the number and not eating it - amazing!

I am always amazed if I manage to get a photo of all three of them looking at the camera, much less smiling. This was not one of those lucky days…

And she could only resist the siren call of eating her card for so long… I don’t know why Henry looks so surprised, she does this every time!

These three are a train wreck. And adorable, giggly train wreck that I love so much. Someday they won’t want to do silly photos even if I ask, so it’s probably best to enjoy the insanity while it is so freely given. ;)

Have I mentioned how much Henry loooooves holding his baby sister? She wasn’t quite as sure about it today, but he was having a blast!

I was trying to get Thomas to hold her up to show off her strong legs, but she was more interested in threatening her momma with those talons she has! Henry, never one to be left out, was helping hold her up. You can see he’s got literally one finger touching her. Sooooo helpful!

We lost the boys after awhile and she was still in a cooperative mood, so I got a few more fun shots of her and her adorable little feet!

Such a pretty little thing, huh? She can thank Alaska for that ridiculously pale skin, but it certainly makes her eyes pop, huh?

I guess if we ever let her go outside, she might get some sun, but that just seems silly. ;)

I love this cutie patootie so much. Glad you’ve been around for 7 months and I’m so proud of how big & strong you are getting. Love you bunches, Natalie! :)

Making Headbands

I may have had enough fails on trying to alter her onesies that I decided she looks just perfect in either button-up pj’s or dresses & leggings. What can I say - I have a variety of talents and sewing is clearly not one of them! But I had another project to try and tackle that seemed a little easier on my limited skills - making bands for her BAHA!

I love the one we ordered, but it was a little pricy to order multiple ones and the raw materials were pretty cheap! But before I went crazy ordering things online, I figured I better try making one with stuff I could find locally. The only slider I could find was this super blingie one, but apart from being a slight scratch risk, the band turned out great! (You may have already seen it in the previous post, it’s a bit more noticeable than the pink & white polka dots…)

Upon my success, I may have gone crazy ordering a bunch of cute elastic patterns to make more!

She didn’t seem to mind me taking them off to put on a new and exciting pattern!

I didn’t quite get all of them made into headbands yet, but be on the look-out for more variety going forward! :)

Shortest Hospital Stay Yet!

It looked like Natalie picked up a cold the other day and I was hoping that this time she would kick it like a champ, but that’s not quite what happened… After a truly horrible night where her oxygen was struggling to stay above 90 and she was just a fussy mess, we took her in the see the pediatrician. Unfortunately, our usual pediatrician was out for the day and we had to see a new doctor who knew none of her history.

I went through her past few illnesses and how her sats weren’t doing great last night. I got the impression pretty quickly that he couldn’t believe I hadn’t taken her to the ER in the middle of the night. Unlike last time, when our usual doctor sent us down to get x-rays and then we discussed what to do (which ended up in going straight to the pediatric unit), this doctor sent us over to the ER.

Natalie was not impressed…

They, of course, took the x-rays in the room and started taking blood work to see what we were dealing with.

Which was great, but it was also getting time for her to eat and we (stupidly) didn’t have her food or pump. Luckily it was time for me to pump and I had thought enough ahead to bring that along. So I pumped and then after waiting way too long for them to bring a feeding pump down from the peds unit, I improvised. We only had a 10ml syringe with us, but it’s not like I had anything better to do in the room. So I climbed up with her and fed her lunch one small syringe-full at a time.

She seemed to appreciate the effort. :)

Unsurprisingly, she got admitted to the peds unit. There was a bit of a scary mix-up at the hospital pharmacy that fortunately led to an under-dose on antibiotics rather than the alternative. But once the dust settled from that, she was chilling in her usual room. They decided it was pneumonia, which has pretty much been my worst fear since we found out she was high aspiration risk. I don’t understand how when she has such high risk for aspiration pneumonia that her GI specialist didn’t seem concerned about managing her ridiculous reflux beyond the meds that make it less irritating to her esophagus.

Needless to say it was a pretty upsetting day and the only upside was that she seemed to be doing fine without any oxygen. And as long as she stayed off of it, it would only be an overnight stay!

Which it was! They told us to follow-up with her usual pediatrician the next day and to keep giving her the antibiotics. They even wrote us a prescription for albuterol “as-needed” to help her with breathing. Of course they didn’t write a prescription for the special nebulizer mask that the pulmonologist had insisted she needed, but that’s what happens when none of your specialists work together…

Of course when we went to go see Dr. Tappel, he was 100% certain it wasn’t pneumonia and that it was just another respiratory infection. He discussed her x-rays with us, pulled up her old ones to compare and told us we could stop the antibiotics. He also gave us permission if she gets sick on his days off to have the office page him, which is much preferable to what we had to deal with yesterday.

The one good outcome is that we got to discuss her recent ph probe results and he is on the same page I am with not enough is being done to manage it. So he is going to talk to all of her specialists here about getting her into an Aerodigestive clinic down in Seattle that focuses on eating & breathing problems. Hopefully that happens sooner rather than later!

Swim Lessons

I have had the best of intentions of getting the boys swimming lessons pretty much since we moved up here. Unfortunately, there aren’t a whole lot of places that offer them and the one place close to home was always booked. But since no one wants to spend their summer weekends at an indoor pool, I finally got them booked! (One benefit to stay-cationing all summer!)

The boys were super excited about swimming lessons and jumped right in the pool when we got there. And by “jumped right in” I mean they carefully walked around the edge in the most shallow part of the pool. Which was fine by me since I wasn’t wearing a swim suit and didn’t really want to have to jump in to rescue them.

Thomas had his lesson first - he was pretty focused on his instructor and didn’t have time for his momma trying to take photos! The big pool is a little chilly and he got out telling me he was freezing, so I got to introduce him to the wonders of the hot tub! That’s a happy little guy, huh? :)

Henry’s lesson was next and stayed in the shallow end of the pool. Henry didn’t mind looking at the camera for me, but wasn’t giving me any smiles… Sounds about right!

Henry was also freezing after his lesson, but refused to get in the hot tub. I did finally convince him to stick his toes in, but that was about it. You can tell he also didn’t quite go under the water with his bobbing, but he was quite convinced he did. ;)

Overall, they did pretty awesome for not hardly ever being in the water. Hopefully we can keep it up long enough to go to the kiddie pool without me being a nervous wreck! (Seems unlikely for a few years though…!)

Real Food!

Natalie is now 6 months old, so I was ready to start giving her real food! Baby’s first meals have always been super exciting around here and it was no different for our youngest. :)

Of course she didn’t seem very excited about it, but that’s probably because she didn’t know what was coming!

She’s still not allowed to have anything orally until we figure out what is causing her swallowing / aspirating issues. But with no clear timeline on another swallow study or really anything to do about it, I wasn’t going to wait forever to introduce her to the magic that is food…!

Don’t worry though - she’s not getting anything in her mouth there, I just handed her the syringe for a photo and like everything she touches, it went straight in her mouth. Thankfully, she’s not figured out how to work the plunger on the syringe and I rescued it from her. ;)

First meal done!

It didn’t really matter what food we picked since she wasn’t going to taste it, but I went with the boy’s favorite at that age - sweet potatoes! I asked the dietician how much to give her since she can’t really control the volume of food she gets and I am always stressed out about giving her too much or too little. Her advice was to start with 2.5mls (for reference, a teaspoon is 5 mls!) and slowly work up from there.

Clearly she is not going to be getting much nutrition from her first “meals”, but we get to try a new food every few days and make sure she doesn’t have any food allergies. And somehow between now and a when she is a year old, we’ll get to make her meals by blending everything in he Vitamix. I’ve been researching all I can on “blended diets” since she will likely still be using a g-tube at that point, but I would not be the least bit upset if I was prepared and she didn’t need it. ;)

The Reflux Study

The one thing we have been battling since Natalie was born is really bad reflux. Henry had a pretty good case of it when he was a baby, but given she has such a high risk for aspiration, it’s much more concerning. She’s been on various reflux meds, but the problem hasn’t really gone away. And whenever she gets sick, it seems to get an order of magnitude worse.

It was the last time she was sick that we finally decided to go see a pediatric GI to discuss options.

As a side not, she is sitting up more now, which is when the reflux tends to get better on it’s own naturally. But again, with her aspiration issues, I am not happy with the “let’s see if they grow out of it” we did with Henry.

The GI doctor said the vomiting could be reflux or it could be related to a milk or soy allergy. So in order to get the most accurate test results, he wanted to switch her to a hypoallergenic formula prior to the reflux study. Or I could got milk and soy free for at least two weeks, which he didn’t seem to think I would want to do. Clearly he doesn’t realize I love her so much more than milk.

Though the past two weeks have given me an appreciation for how prevalent milk & soy are in foods! I pretty much gave up on going out to eat and had to resort to trying things that should have never been invented (see “yogurt” above).

Thankfully, I did find a decent non-dairy creamer and I could still have my coffee!

Test day! There was a bit of a mix-up on how early they told us to be there and none of us were very happy by the time they finally called us back. And the very first thing they had to do was to put these “No-no’s” on her arms so she couldn’t manage to rip the pH probe out of her nose. She did still manage to swipe the nurse’s badge from her though. She was so excited about it, the nurse let her hang on to it for awhile.

She was also pretty excited about the “arm jails” and even tried to eat them. That’s about where the fun stopped though (also the end of pictures in the procedure room…)

The ph probe is in a NG tube that they run down the back of her throat into her esophagus and it measures how often stomach acid is traveling up her esophagus. She was not impressed with the doctor putting it in place, though she was mostly mad about being held down. She yelled enough that she wore herself out (unsurprisingly!).

Oh joy - another monitor! This one is recording her ph levels and has buttons we use if we are feeding her, laying her flat or if we see a reflux event. The nurse told me not to watch the monitor readings or it would drive me crazy. I tried to ignore it, but it was challenging!

She was not overly impressed by the arm jails after they had been on for awhile. And we didn’t realize how impossible it would be to dress her with them… We ended up putting her outfit on backwards, which made it harder to feed her, but at least she wasn’t a naked baby. ;)

Nonni took pity on the poor fussy girl and gave her extra snuggles to make up for the injustice of it all.

And after the 24 hour mark passed, she got to remove the probe and the No-No’s. I think she spent most of the day with her hands right at her face since it was no longer impossible. The things this girl has to deal with!

The results came back pretty quick and they weren’t great. While we only saw 1 visible reflux event, the monitor recorded over 230! That is a ridiculous amount and makes me feel better that I haven’t been over-stating how much of a problem it seems to be. Hopefully we get some guidance on path forward on managing it!

Random July Photos

July was a pretty awesome & busy month, but not everything fit neatly into a blog post, so here is the usual random photo dump!

I missed out on the air show because we didn’t think taking Natalie was a good idea. But Matt took the boys and they had a blast. I did get to see the Thunderbirds in the days leading up to the air show because they do multiple practice runs right over our work building downtown!

Poor Nonni was just trying to feed Natalie and she got attacked by the paparazzi! Though clearly, she doesn’t seem to mind… ;)

They went from being the paparazzi to being the photography subject. I have been using an app to do monthly photo books from my iPhone and when Grannie said how she loves looking at photos of the boys, I dumped them all on the table. They were more than happy to narrate them for her!

This kid loooooooves to play games and he is surprisingly good at almost all of them. He is on a Guess Who kick right now and asks the most random photos as I meticulously ask questions to narrow the candidates down by roughly half each time.

Of course his first random question this game was “Does your person have a green headband?”

No he wasn’t cheating and yes, he clearly won the game…!

The furry girls don’t much play with dog toys these days, so it was super cute when I caught furry Natalie napping with her sister’s old stuffed rat. She was wiggling her paws in her sleep, I think she was chasing something. :)

This guy is the four-leaf clover finding champ at camp! He had several saved up to show me and one of the other kids in his group made sure to tell me that Thomas was the best at spotting them.

Yay - a normal smile for momma at daycare pick-up! I usually get fussing or tears because he doesn’t want to leave, so smiles are a welcome surprise!

Natalie clearly is catching on that this little tube provides her food, but she’s got the methodology a bit off… ;)

Our weekly run to Costco. I didn’t realize how Alaskan Thomas looked until we were there walking around. Shorts, long sleeves and snow boots… This kid is clearly not a Texan these days!

Look at Little-Miss-Sitting-Up-On-Her-Own! She’s not fully up without falling over, but she can hold this little tripod lean pretty well! I was so proud and sent this photo to her therapists and realized later what an epic line of drool she had from her mouth to the floor… whoops!

This kid begged to do the dishes this morning! And went and got his step stool so he could reach. Ummm… yes, please?!?

Pajama day at daycare fell on the same day I scheduled their dentist appointments. All of the staff gave him compliments on his minion pjs and just how cool he is in general. Though I do realize now that he is probably outgrowing those pjs…

Thomas had his dentist appointment as well and I didn’t want to take him back to camp just to retrieve him in an hour or two. So he got to come hang out with me at work and play on the iPad. He was so well behaved and fun to chat with - I wish bring your kid to work was more of a thing!

6 Months!

Six months! Half a year! Where has the time gone?!?!

As always, she is trying to eat the card as soon as I give it to her for the photos. And, as always, her eyes are just so big and gorgeous. I can’t get enough of her baby blues. :)

Oh Henry… I swear he used to take normal photos. I don’t know what happened…

And she looks like she is holding on to her card for dear life.

Probably because she knew I was going to steal it so she would stop eating it. Clearly, she wants it back! Even Henry looks like he disagrees with my theft.

She quickly got over it though, especially since she was getting some quality time with her two favorite people - her awesome brothers!

Usually it’s Henry who wants to take pictures of just the two of them, but this month Thomas wanted to get in on the sister photo action as well! He’s not quite sure she isn’t going to fall on him though. To her credit - she is much more stable these days, just not quite sitting up on her own yet.

But she can certainly hold herself upright long enough for some photos! And I know it’s hard to tell in her usual monthly photos because she is wearing long pants, but look at the perfect baby chub she is getting! She’s gone from a SGA (small for gestational age) newborn to a perfectly plump baby. Love it!

She doesn’t quite have the cheek mass that Henry had at six months, but man are those cheeks irresistible for kissing! The one thing they do have in common though, are those ridiculously beautiful blue eyes. They can thank their dad for those!

She was pretty much done with me taking photos at this point and was happy to crash into the chair and gnaw on her Elmo toy. No complaints for me, she did pretty awesome!

I can’t believe she’s already six months... She’s growing like a champ and we couldn’t be more thankful for how great she is doing!