Blessed

We blessed Daniel at church today which means: picture time!

The fam. As you know, my mom is the only one talented enough to do Kalena's hair like that, so no credit to me. Will is looking at the camera AND smiling in zero pictures.

I'm just throwing this last one in here to point out the ADORABLE bow tie on his little outfit. I'll probably never get over the cuteness of a baby in a bow tie.

Also, just so you know, I don't do Daniel's hair like that on purpose. I even gave him a bath and tried to comb it over this morning. It just likes to stick up.

Big shoes to fill

Will found his grandpa's shoes this afternoon.

Looks like he's got a little growing to do.

Brown sugar

This morning I was nursing Daniel when Kalena ran in to the room yelling, "Will's dumping out the sugar!" And my first thought was, "I hope that statement is not accurate." (Spoiler: it was accurate.)

The awesomest part was that the room I was in was pretty much the end of the trail, so there was just more and more sugar as I followed it around. That first picture was the last thing I found. That's about a half a bag of brown sugar right there. At least the kids hadn't walked around in it.

Off the oxygen!

As of yesterday Daniel is off oxygen! Which means pictures of his sweet face with no tubes.

Also, Cat in the Hat onesie!

Information overload

Down syndrome is the most common chromosomal abnormality, occurring once in every 690 live births. This means lots of available information and resources. Before we even left the hospital we had been referred to Mile High Down Syndrome Association, referred to a pediatric audiologist, and set up with an early intervention coordinator. At Daniel's first pediatrician's appointment we got a referral for a pediatric ophthalmologist along with a list of common health concerns and a timetable for testing for them.

MHDSA has been GREAT. We got a call from their family outreach coordinator just a few days after we were referred. She offered us their welcome package, to put us on a mailing list, to put us on an e-mail list, and a "first call" contact in my area. (Yes, yes and yes please!) I've already read the information book from the welcome package. 

See, I'm sort of an information junkie. I read. I research. The engineer in me wants numbers and data and statistics. And the mother in me wants to hear everyone else's stories about what it's like to raise a child with Down syndrome.

Anyway, there's a point to all this. For those of you who have contacts for me or other info, I want it, I do. But I'm a little overwhelmed with all the info I'm currently making my way through, especially since it turns out I also have a newborn. (Crazy, right?) So hang on to the phone numbers and e-mails addresses and such for me. I'm sure I'll be asking for them soon enough.



P.S. The love and support from everyone, both in real life and online, has been amazing. You guys are the best.

Test time

Daniel had his oxygen test on Friday. Here he is hooked up to the saturation monitor:

See that 96 on there? That's his saturation percent (and that's good, if you're wondering.) So HOPEFULLY when the pediatrician calls it will be to tell me to we're done with the oxygen. 

By the way, have I ever mentioned here how much I LOVE our pediatrician? Well, I love her. A LOT. We got put with her by default when we moved here-- she was the only doctor in the practice taking new patients. She's been great with Will and Kalena, but since Daniel was born she's been even better. She hasn't been able to see him yet (she was on vacation so we saw the pediatrician who diagnosed Daniel when he was born (we like him too)) so she's called me twice to check on him (and me.) She called me herself, how great is that? Seriously, we can't ever move because I'll never find a pediatrician who measures up.

Moving on. How about a picture of a baby with a monkey on his butt?

I knew you'd like that.

Swaddled

Nothing like a tiny new baby to make you realize how gigantic your other kids have gotten. See?

In related news, Aden + Anais swaddle blankets are big enough to swaddle giant toddlers!

Adorable dinosaurs

After Daniel was born, my good friend Laura sent me a package with gifts for all my kids. And those gifts were adorable dinosaur shirts! Well, a dino onesie for Daniel.

Here's Will modeling his:

And Kalena in hers:

Don't worry, I cropped it so you can't see how badly her shirt clashed with her BRIGHT pink pants. Do you like her bow-tie? She took it off a big stuffed penguin. Really makes her look snazzy. Three year olds pick some great outfits.

Aren't those shirts cute? (The answer is yes, if that wasn't clear.) No picture of Daniel yet, because his is still too big. As soon as it fits though!

Needy guy

Will has a new habit these days: needing things. Anytime he wants something he'll tell you he needs it. For instance, at breakfast in the morning he'll tell you, "NEED juice! NEED juice!" He does it with everything, even things he decidedly does NOT need. I hear a constant refrain of "NEED tandy!" "NEED soda!" "NEED cake!" Seriously, listening to this kid you'd think all we feed them is sugar. All he needs is to hear one of those words and he'll start up.

He also doesn't want to wait on any of his "needs." The other day he started telling me he needed cake and I told him he could have cake after dinner. He responded with, "No dinner! NEED cake!" Then when I told him he was going to have to eat some food before he had any sweets he replied, "No food! NEED cake!" It's a little obnoxious, but mostly it's funny. The pleading seriousness in his voice gets me every time.

He's been more needy with people too. I would blame this on having a new baby, but it actually started before Daniel was born so I don't think that's it. He's taken to insisting on having an adult come with him everywhere. He does this by grabbing your finger and saying, "Tum on! Tum on!" and if you ask where he'll say, "Ober here!" And if you're not moving quickly enough for him he'll get behind you and push on your butt while saying, "Tum on! Tum on!" Fortunately for me he mostly does this when other people are around, not when I'm home alone with the three kids. He's also gone back to wanting to be carried often so he runs around begging people, "Hold me!"

It's a good thing he's cute.

Early intervention

We had our first visit with early intervention therapists yesterday. Because delays are expected in children with Down syndrome, an early intervention evaluation is done as soon as possible. While it's nice that this all gets started now, it's a little bizarre to do goal setting for a one month old. Really I suppose it's more for me. The goals are things the therapist wants Daniel to be doing in a month, but mostly we talked about ways I can encourage him to do those things.

Anyway, I'm mostly writing this so that in a month when I start talking about seeing the physical therapist you won't be all, "Wait, what?"

He is STILL on oxygen which is obnoxious because the pediatrician okayed a test a week ago. Apparently there was a miscommunication though, because when Brian talked to the oxygen company today they said they had nothing from our pediatrician's office. And then when he talked to the pediatrician's office they said they had sent over everything the oxygen company would need. They're sending it again now, but UGH. I am ready to be done with the tether.

Today's conversation

This morning Kalena was looking for some socks (why she was looking I'm not sure, since she knows they're in her dresser) when this conversation happened:

Kalena (in a sing-song voice): Sooocks! Where are you?
Will: Right here!
Kalena: You're not socks, Buster!

And then the whole conversation was repeated word for word. Twice.

Apparently Will thinks he's the only thing Kalena might be looking for.

One month

As of yesterday Daniel is one month old. He is too big for newborn diapers, and he is quickly outgrowing all the newborn clothes. (I'm still trying to squeeze him into them anyway.)

It's too fast!

Vaseline face

A couple weeks ago Will had a cold. A runny nose combined with the cold, dry weather meant the skin on his face got really dry and chapped. So a couple of times we put vaseline on the chapped skin before bed. Apparently it helped a lot because Will really liked it. He would say, "More. More. More." softly until all the chapped skin was covered. Then he would say, "That nice." (It was really freaking cute.)

Fast forward to today. He's long over the cold, but apparently he remembers how nice the vaseline felt because he found it and got into it.

The best part was when Brian brought him to show me I said, "Oh, Will." and he got the saddest, most heartbreaking look on his face. I think he thought we were mad at him.

Here he is with his shiny face. And hand.

Gobs of vaseline in his hair and on his ear.

It was pretty awesome.

After this I'll quit with the Easter pictures

Here's Will after finding his basket. For the record, we do some candy and a book for each basket. I figured by doing a set thing every year I can avoid going overboard on the presents. Because sometimes I just want to buy my kids everything. So a book every year it is. Will got a book of Danny and the Dinosaur stories; Kalena got a book of Berenstain Bear stories.

(I love this shirt SO MUCH.)

Kalena with her basket. Or as she says it, "backsit."

Actual things that Will said as these pictures were being taken:

"No egg!" (Definitely an egg)

"There it is!" (Still looking in exactly the same spot.)

It's fun to watch kids miss eggs "hidden" in the most obvious places. We hide hard boiled eggs, but we only got through 2 rounds of hiding before Will started peeling one to eat it. My kids really like hard boiled eggs.

Weigh in again

Daniel had another weight check today and he's up to 8 lbs 6.6 oz! That means he's gained 9 oz in a week. The pediatrician said they want at least an ounce a day so 9 oz definitely meets that! Now the doctor has to call the oxygen company to have them come out and do their testing. Apparently they'll take Daniel off oxygen and then monitor him overnight and send the results to the pediatrician. Hopefully that will happen soon. It's a little tiring being tethered to the oxygen tank all the time.

Doesn't he look ready to have those tubes off his face?

Fancy dressed up pictures

I promised fancy dressed up pictures so here they are. I took about a hundred. There are about 3 good ones. Most of the pictures of Kalena look something like this:

I finally got her to look at the camera AND smile at the same time. (15 pictures of her- she's looking and smiling in 2 of them.)

Will didn't really want to cooperate at all. Which is too bad, because you don't get the full effect of his darling outfit in these pictures.

And finally, Brian with the kids. One of the neighbors was doing yard work, and apparently that was FAR more interesting than the lady behind the camera. (That would be me.) 

There you have it! And next time I'll bombard you with pictures of the kids in pajamas with Easter baskets. Or pictures of the kids looking for eggs. Or both! I keep taking pictures like I'm a photographer even though I am so NOT.

Easter egg time

We dyed Easter eggs yesterday which the kids thought was thrilling. And by that I mean they thought it was fun dropping eggs in the different colors and then they wanted to eat them all. 

Kalena was very careful dipping her eggs.

And pleased with the results.

Will preferred dropping them in- sloshed a lot more egg dye around. (He does look focused though, doesn't he?)

 Happy about it all.

Check out these next two pictures and tell me these kids don't look like siblings.

Same expressions and everything. I couldn't have posed these pictures any better. Fancy dressed up pictures coming next time!

Sad face Will

Will was seriously brokenhearted yesterday when he threw his spoon on the floor at lunch and nobody would pick it up for him.

I love the single tear from each eye. 

More thoughts

After some excellent comments on my last post, I wanted to clarify something- I most certainly understand why people do testing, even if they wouldn't terminate the pregnancy. Testing gives you more time to process. It give you time to prepare, mentally and emotionally. There's definitely nothing wrong with wanting to know ahead of time. In fact, before Daniel was born I wondered if people who were surprised by babies with Down syndrome (or some other diagnosis) wished they had done the tests.

I was serious when I said that I'd thought about it a lot. I considered how things would have been different if we'd known before he was born. I thought about how I might have felt about a prenatal diagnosis (obviously I thought about that, since that's what I wrote about last time.) And it's only now, on the other side of things, that I'm completely sure not testing was the right choice for us.

And now I'll stop talking about this.

My thoughts on prenatal testing

If you've read my Finding Out post, you know that Daniel's diagnosis was a surprise. We opted not to do prenatal testing (for any of my pregnancies) for a couple big reasons.

First: I am young. At 29 my chances of having a baby with Down syndrome were roughly 1 in 1000. I have no risk factors. The risk of miscarriage caused by the more invasive testing were considerably higher than my risk of having a baby with Down syndrome (or any other chromosomal abnormality) was. The odds were in our favor, so why do the testing?

Second: This is probably a bigger reason than the first- we wouldn't have terminated the pregnancy.

So the question a couple people have asked since he was born is: Do I wish I had done prenatal testing so that I could have prepared for this? And having had a chance to think about it (a lot) my answer is no. If we had gotten this diagnosis before he was born I would have wondered about false positives. I would have worried about when to tell people. I don't know that it would have felt real.

Getting the diagnosis after he was born was certainly a lot to take in. But Brian and I both manage pretty well with changes that come our way. I think if we had gotten the diagnosis before he was born, that's all I would have thought about. Once Daniel was here though, HE was what mattered. Yes, he has Down syndrome. He also has a lot of hair, and big feet, and blue eyes. He is soft and tiny, just like our other babies were. Daniel is a baby, not a diagnosis, and I thinking getting a prenatal diagnosis would have made that harder for me to see.

So no, I wouldn't have done things differently. Besides, now that he's here it's impossible to imagine not wanting him, not having him, not loving him.

Fattening up!

Well, as of Monday Daniel is back to his birth weight! Just barely, but still. Of course, now the pediatrician wants to see him keep gaining like that, so one more weigh in before they'll look at taking him off oxygen.

What do you think, do his cheeks look chubbier today?

I have many, many things I intend to write about (and about a million half done posts in my drafts folder) but I keep getting distracted. I guess having 3 kids under 4 will do that to you. However, if there is anything at all that YOU want me to write about, let me know and I will. (And I promise I'll do my best to not just let it sit in my drafts folder forever.)