The cutest hats on the block

Dylie's new tooth has been totally trumped by the new hats that Jessica made for the twins! These hats are fabulous! Stop, I know you all love them and want some of your own, I know... I know. Maybe someday J-bird will teach me how to make them and you will get one. Until then, my kids have the cutest hats on the block, enjoy these cute pics!











They are going to learn to love them because *we* love them. So they have no choice!

Thanksgiving's going to be late this year, 5 or so at mom's house. Normally we do it early so we can go over to Matthew's mom's house at night for Chinese food but for some reason this year they are doing Chinese food on Friday. It's kinds of sad actually, Chinese food on Thanksgiving was unique and charming but now it's like having it on any old day of the week. Oh well. One house to shuffle to, can't really complain about that right?

Matthew will be playing football with a bunch of people that he grew up with Thanksgiving morning. It's a little tradition they have and it's the only time that he sees some of his old friends. He will inevitably get hurt so stay posted.

Abbi and Traci came over today for a serious labor of love project. It took a little longer than we expected but both Abbi and Duncan were very patient while we worked on it. Dylie, as usual, slept the whole time. Her and Matthew, who was home sick from work, were banished to the bedroom for the party.

Hopefully Matthew will get better soon, he is sick as a dog and has been for nearly a week now. I think he's just running himself too thin because no one else in the family is sick yet. Knock on wood.

Dylan has been eating for a couple of weeks now! The home health people called me for a refill of supplies and I told them to call back next month. I think we will be done with them. Wahoo! I do like the little medicine port though, I will admit. Pop it open, dump it in, on our way. Every kid should have one of those, well except for the minor surgery required, that part kinda stinks.

I haven't posted in almost a week so I figured I would make up for it by posting pictures. You'll have to let me know if this actually works and ya'all forgive me!

PS Dylie now has three teeth on the bottom and one on the top, how weird is that? It's almost as bad as Suzi's kids getting their canines first!

For the record...

I have been trying to post... and it's making my pictures Jinormous. So I need to work on them a bit and then get a post up. Seriously, doesn't Blogger know I have two babies that I have to take care of? Thee including my sick husband. Post coming as soon as people are settled and I can figure this out! Bah!

Twin Photo Shoot #286

Yes, that's most definately drool on both of their shirts but hey, when the mood strikes, you go for it. The only problem is that Dylan got hungry about 1 minute into it and I think you can see where it went from there.

This would be a Duncan hug.


This must be a Dylan hug back...


Okay, now Duncan's starting to wonder what is up...


This is when we knew we pushed Dylan too far on dinner. (And I always say it's Duncan that's going to eat her...) Let me add that we know, the video quality isn't that great because both Matthew and I were cracking up.


The WINNER!


And this cute one of Dylan in an outfit she got from grandma when she was tiny, she's finally fitting into it. She's so cute!

What's the plural of diagnosis?

Since Dylan's surgery many new friends and old friends that never got the whole story have been asking what exactly is *up* with our little girl. I have been meaning to type things out but I haven't had a chance. Now, with this quiet moment (you'll notice a lot of my posts come at about this time, Nap time) I thought I would type it out. It's good to have it on 'paper' anyway right?

When Dylan was born at almost 31 weeks they tried to put a feeding tube up her nose and found that there wasn't any room. As a result of that, her nose became inflamed and closed off and she had to be intubated. They did a cat scan and found that her nares were small, she had Pyriform Aperture Stenosis. Also they found a single central incisor which can be an indication of Holoprosencephaly so they ordered an MRI which came back inconclusive.

We did genetic testing and found that Dylan's missing a part of her 7th chromosome, the Sonic the Hedgehog gene, (yes, it's named after that Sonic. Its a pretty important gene that is in charge of lower spine, kidneys and brain.

They scanned her kidneys which are fine, and her back, which was not. Turns out she has a mild form of Spina Bifida. She has Sacral Dysgenesis which means some bones of her sacrum are missing (3 of the 5) and Sacral Agenesis, which means what she has left isn't formed properly. The bones kind of split like they didn't come together right. She also had a tethered cord. These back problems indicate bowel and bladder problems but right now she's just as incontinent as she's supposed to be.

She was in the NICU 89 days, half of it spent at Primary Children's which was where she had the Pyriform Aperture Stenosis repair. She was the smallest baby that the ENT had performed that surgery on. After that but while still in the hospital she got spinal meningitis.

She's not an eater so she got a 'button' in May but she has actually started picking this up. A little late to the party, but hey... she got there right?

In June she got extremely sick with an infection. they did an MRI and found a nasty cyst on her spine. (That's when I started this blog to keep everyone updated). While she was there they repeated the MRI of her brain and also did a 3d cat scan of her skull to check on her sutures. They discovered that her metopic suture, the one that runs down your forehead, had closed early which would need to be corrected. Those 3D cat scans are very cool, I need to get those images on a disk to have forever. Not everyone gets to see their skull right?

After a month of IV antibiotics they decided to go in and resect the cyst tissue and untether her spinal cord in August. They also schedule and completed the Cranioplasty to correct her forehead. So on her very first birthday she got her 4th and hopefully final in-patient surgery. (Knock on wood...)

She also has a common heart defect, an ASD which she might have to have repaired in an outpatient procedure when she's 2 or so.

We finally got the results of the repeat MRI a few months ago when we found out that she doesn't have a forebrain. This very important part of the brain controls a lot of your reasoning, among many other things. There is no seperation between the two hemispheres of her brain which is what Holoprosecephaly is all about. We also found that she has very small optic nerves but her eye sight doesn't seem to be impacted which is good. The Neurologist told us that if someone saw her scans and then met her they wouldn't know it was the same baby. So she's doing great. That's the amazing thing about brains, a lot of time the unused parts try to make up for what's missing so you just never know.

We also get to visit Trina at her office every couple of months because it appears that Dylan's got a serious lack of growth hormones and her thyroid isn't functioning properly. We have meds for the Thyroid and the shots with hormones are coming soon. Boo! Hiss! They will help with her low muscle tone though, maybe at some point she will be all over this place like her brother!

Tiny Babies!

Sara brought over Madison this week so I could meet her! Yay! So ther I was holding this tiny little 3 week 6 pounder. She is SO cute! Seriously, I can't even get over it. I called Sara to let her know I was ready for her to come back but it didn't work. Of course, now we are getting into RSV season so she's probably not going to get out of the house much at all. I tried to take pictures of how mondo Duncan looked next to the baby but they didn't really turn out. You can't tell that he's almost 4 times her size! Oh well, we tried, at least he didn't eat her!




Last week I went to the NICU and was talking to a mom and it turns out that she lives like 6 houses away from us, on the same street and everything. Crazy. But I went again today and she wasn't there. Sure enough driving home I saw the "no visitors" sign on their door so that little one got to go home.

And then today when I was there I ran into a girl that I went to High School with. We kind of touched base at the HS reunion and went to lunch a couple times but didn't really keep up. Well, there she was, had a baby 2 days ago and they will be stuck in the NICU for a while. No fun, poor gal... Maybe we will keep in touch this time. Now we have a little more in common. Boy, wouldn't want to start that journey all over again that's for sure. But she's tough, she can handle it.

Dylan's still eating like a little trooper, tonight will be the 5th night in a row with no pump! Hooray! She's eating great during the day and staying asleep at night. It couldn't be going any better really.

My mom came over today to stop in and see the babies before her trip to Vegas and Duncan was so happy to see her! He crawled right over to her and was giving her loves and everything. It was darling!



Tired Boy!




Pucker Up!

Christmas music in the Haaaa-youse!

Yay! It's that time again. And no, I am not skipping over Thanksgiving entirely which is what Matt says. Just starting things a little Early. Hey, when Costco has like 4 isles of kids toys (Including the Dinosaur you can ride...) and that doesn't even mention their Christmas isles, it's inevitable. Seriously. So I stole back my pink iPod that Matt kidnapped for lawn mowing, and loaded it up with ONLY Christmas music. I was warned that if Christmas music is played around Matthew before Thanksgiving he would delete it all from our itunes. So, I guess the babies and I will have to just listen during the day and we will skip over the two radio stations already playing non-stop Christmas music, for now... For the record, I don't believe him, not even for a minute... he likes me too much.

Dylan had her follow up with the Plastic Surgeon yesterday so Duncan went over to visit Aunt Melissa for a little while. The doctor said everything looked great. He noted that her brow bones are prominent like he said they would be and said they will go back a little. She has a random ridge on her left temple and a bump by her incision on the left and he said to rub them gently twice a day for about a minute and they will go down. She hates it, so that will be a fun two minutes of her day. The incision has healed nicely but the stitches are just starting to fall out so he said to rub hydrogen peroxide on it and that will help get rid of them.

Dylan has been eating wonderfully lately. I haven't mentioned it, knock on wood for us... I started nursing her a couple of weeks ago but have been doing it a lot in the last few days and by golly I think she's getting the hang of it. So much so that we took her off the pump last night and she slept her first full night without food going into her belly. She's chunky so I think we can experiment now with letting her eat whatever she wants during the day and see if she doesn't lose weight. This is fabulous fabulous.

Grandma Shirley is coming down for a doctor appointment so we are going to see her at dinner. It will be very interesting since it will just be me and the babes. I am meeting Shane and Traci so we can follow each other though, I will need their help. I can't even carry the both of them and something tells me the stroller won't be welcome in the restaurant.

Dylan is all about squealing lately, in between raspberries that is. She will just yell and yell, and she's loud! She is getting so fun and interactive we just laugh at her all of the time. She starting to see stuff and dive for it with both hands. toys... your face... whatever, if she wants it, she goes for it!

Pokes and more pokes

So Dylan weighs a whopping 13.8lbs, she's so huge the doctor didn't even mention where in the chart she is. As in... she's not on the chart. We already knew that though, she's bittey, they just say she measures under the 3rd percentile. She got four pokes, two in each leg. She actually got one more then Duncan, the fourth in the series of something. I guess there's shortage but the Dr felt like she should get it regardless. I did ask what it was and he told me, but it was some huge long name so I purged it right away.

Then we went over to Matthew's work so I could get my flu shot. Serves me right I guess. It was fun, we got to see a lot of people that I haven't seen in what seems like ages! So shout out to Nancy, Isabel, Shannon, Patty, Kirk and a bunch of others that don't read this blog. (I just know those people do!) It was so good to see everyone, I need to bring the babies in when we can really make the rounds but Matthew's been so busy that we have never figured out a good day. (Did you hear that? Blame him... and put a good word in for us! =) )

Nothing else exciting is going on really. Hopefully I can make it over to the NICU tomorrow but who knows since I imagine Matthew's working outside. Funny story... the last time I was there I walked in to talk to a new mom and she looked familiar. I asked what high school she went to, Alta... so no... not high school. I told her I went to WJ and she said that she transferred to Alta View in tenth grade so we put it together that we went to middle school together! Is that crazy? I have the worst memory EVER so I can't believe I even recognized someone from that long ago. Small world I guess.

It's beginning to look a lot like Christmas!

We woke up this morning to snow! And not just a little snow, a LOT of snow. It's beautiful outside and it was so light and bright with the reflecting sun shining through the windows. So I thought I would introduce Duncan to the new snowfall and I grabbed a bowl. It was very disappointing, he was more into the camera than the snow. Oh well!






We had visitors on Monday. Shane, Traci and Abbi stopped by to give Dylie a little get better gift of sweats. I put her in them today after her bath and they look so comfy! Every time I look at her I am just a wee bit jealous wanting the same outfit for myself. She's a little cutie.


Playing possum




Tomorrow I have Dylie's well-baby appointment in the morning. That will be loads of fun. Taking two kids to the doctor by myself is always a joy. I just pack them in the Cadillac of a stroller we have that barely fits in the room. Oh well, keeps Duncan contained and that's what he needs these days.

The PT is coming over to work with Dylan again for the first time since her surgery. She was going to come last week but had to cancel. That ended up probably being for the better though. Her disposition is back to normal I think and she wouldn't have been last week when the appointment was scheduled. She has just been in fabulous spirits for the last 4-5 days, even giggling at Matthew yesterday. We will see how she does tomorrow.

Baby leg warmers

Have you guys seen these? They are darling! And I had Dylie in a dress yesterday and decided she needed some so I came online to price them and I found instructions! I have never wanted to know how to sew more! So I shot off an e-mail to Aunt Nancy, Syd and my mom practically begging and my mom called me and said she would make me as many as I want as long as I go find the material! And I did, and she did!

I cut some wrong and made the cuff too big. Sad. So I need to run to the store for more stuff and revisit mom sometime this week so Dylan can have more options, they don't all fit yet.

Seriously, so cute!


I know she's in Duncan's blanket, but I 'fed' hers last night.

And a 'life as usual' post

So Matthew's been making a huge mess of the side yard for a good week or so in preparation for a boat pad. (Boat? Trailer? RV? Random things we can leave outside but need to be hidden by a fence? Who knows... I do know that we don't have a boat though! Maybe we can borrow one.) It's quite the little project but today Uncle Keltsey came over to do the first half of the cement work and Duncan was soaking it all in. He LOVED watching the cement tuck and watching the guys work. Such a boy... but it made for some fabulous pictures!

And he got his first taste of the mean awful green monster called GRASS today. Which he didn't like so much. We have a couple great videos of him not liking it, but here's a good picture, you get the message?


I have also been informed that the picture of Dylan on the Halloween post is too serious and since she was uber smiley yesterday I thought I would try and get a couple of good smiling ones. But Matt had to work and it's very hard to try and make a baby smile while trying to snap a good picture so most of them are so blurry! Here's kind of a good shot though. This one's for you grandma!


And look who can get up on his knees! The Ped said that the only thing he has on me now is that he's not pulling himself up yet, but look! He started this the day after his appointment! This is all happening too fast for me now. Seriously. I tried to get him not to roll-over until I couldn't fight it any more. I totally discouraged crawling. And now I have no control!


Speaking of his well-child. He's a big boy! The doctors compare them to other babies born on their birthday, but they usually will adjust it back 9 weeks to account for them being born early. Duncan's in the 50th% for babies his own age, and 75% for babies born around Christmas! The doctor said he's text book, doing exactly what we want him to be doing and growing just perfectly. He's so cute and fun!

Dylan's appointment is on Thursday, we had to post-pone it until she got out.

Pictures from today:








Spinning fun in the egg chair

Before and after pics

So I have been meaning to put up some before and after pictures but I just haven't had a chance to shoot some good ones of her new head. So, rather than waiting, I thought I would put of some of what I have.

The angles are all off, backwards and wrong, but I think you get the picture.


This one you can reeeeaaaally see the trigonocephaly (triangle head).