How can I find your old blog?
Jake found it for me! It isn’t everything, but it is as much as we have. The stuff that I used to do on microsoft frontpage is likely gone for good. http://jakenreag.com/reagansblob.html

Also, want to know something funny? When I first met Jake in 2005, he told me that he had a blog. I thought he said “blob” and asked what he meant by that. He explained what a blog is and then talked me into starting one a few months later. I blobbed for a few years before I knew anyone else was doing it, and I had never read a single other blog until 2 years ago when I suddenly found out half my friends had blogs. I almost felt like I needed to take a week off from work to stay at home and process it all. “you mean I didn’t invent blogging?” I thought to myself. I still call it a blob to this day…

Does Pip ever cry?
Hardly ever. And when she does, it is because she is in pain or she has had enough of being messed with. Crying just to cry has literally never happened. If you have heard my Piper cry then you know what the saddest thing on earth sounds like. It’s quiet and much like a little kitten meowing, but with a sad face and tears.

What is Piper passionate about?
Hahahaha. This is my favorite question. Her passions evolve with her age and wisdom. Right now she is most passionate about tapping and monkey cards. In fact, tapping has been a consistent passion of Piper’s for many years. We’ll take a picture of the front of the monkey card this weekend so you can get a peek into her passions.

Can I send Piper Jane a present?
That’s nice of you! Send me an email!

What does Piper eat?
She has a gastrostomy tube that goes into her belly. She has a little button called a Mickey that you can take the tube out of and close up so she has a little freedom from her feeding pump. She gets formula and a little rice cereal mixed in. She is on continuous feeds that are slowly pumped throughout the day with a few hours of breaks a couple times a day. She used to vomit a lot and this seems to be the best way for her to tolerate her feeds. She doesn’t eat any food orally. Speech therapy tries to get Piper to taste food (whipped cream, apple sauce, disolving crackers) but Pip doesn’t have any interest and freaks out if you try to put anything in her mouth. I think that is from all the intubating and deep suctioning she got at such a young age.

What does Piper do when you aren’t there? What is her school like?
She goes to school for a few hours, she gets three kinds of therapy, she gets played with by nurses and read to by volunteers. I feel bad that there are three days per week that I can’t be there, but they actually keep her pretty busy on the weekdays. She loves attention from the nurses and they completely dote on her.

Her little school is about 10ish kids. Most of them are outpatient. They play with toys, eat snacks (the ones who can eat) and listen to music. A wonderful volunteer named Judy comes in with a guitar and sings little songs with them. She walks around and lets each child strum the guitar while singing a song with their name in it….”Piper Jane is going swimming in the wattttter, swimming in the watttter, swimming in the wattter”. In case you’re wondering, I’m pretty sure Judy is going to heaven guaranteed.

Do you give her baths?
If she needs one while I’m there! She usually gets one around 5 or 6 in the evening, and I’m there mornings/days. You probably already knew this but Piper is a tub splasher.

What size is Piper? Why is she so small?
Pip only recently graduated to size 3 diapers (hello, little butt!) and is otherwise about the size of a one year old. She is skinny and long and impossible to shop for. That is one reason why she usually wears dresses. Also because she just likes being fancy.

Kids with CCMS are small (yes, there are others!). I know of a young adult male weighing about 75 lbs. I’m not sure exactly why this is, but when Pip was really young, many of her precious calories were being burned just working hard to breathe.

How old were you when you had Pip?
I was 23. Just a little bitty baby myself.

How do you pay for Piper’s care?
I feel a little weird with this question, and I know Jake probably feels weird, and I know for sure everyone who asked felt weird….but you also know how astronomical hospital related stuff is and I don’t blame your curiosity. Well, we have really really really great insurance through Jake’s work. We are very fortunate for that. So far everything has worked out, I hope I’m not jinxing anything.

Does Piper really just hold still while you do her hair?
Yes! She really does! I can’t believe it either! But her hair easily will just explode out of any grand creation I’ve made the second she gets a bright idea…..much like a mad scientist.

~There are still a lot of really great questions, but I’ll probably only do a few more posts because I feel like this might be starting to get boring. It’s not at all boring for me and I’m still getting weird and funny questions about Jake. Example: after the last post someone’s question was “It’s true, your husband really is hot”. Also, “does Jake only smile with his mouth closed?”, “why does he wear his hat sideways”….Believe me, they’re all good. I want everyone to make a formspring so I can start asking awesome questions too.

Where do you get Piper Jane’s shoes? and clothes?
I get most of Piper’s shoes at Seekairun.com and piperlime.com
Her clothes are mostly from Target, Old Navy, Etsy, thrift shops, American Apparel, H&M, Polarn O. Pyret and smallconcept.com. Also random boutiques here in New York.

Do you and Jake want more kids?
We’re not really sure. There are times that I think we will, there are times that we can’t decide and there are times where I think about how hard my pregnancy/delivery was and I never want to risk going there again. I don’t know. But I would say, probably yes. There are a lot of things to factor in. Like how will I have time to spend with Piper? Also, maybe Piper will get jeal of another baby in my lap and completely lose her ****.

There is also genetic testing and the risk of having more sick kids. No one knows what to expect for any future pregnancies (although they think it’s probably safe), but the thought alone stresses me out. Not to mention I don’t know that I could deal with the questions for the first few months. Questions that I would have myself and questions that others might ask. Scary.

If I decide to, it will be because it feels right!

Have you ever thought about writing a book?
I haven’t! I don’t know, it’s just has never really crossed my mind. I’d be open to it, though. Hooray.

Can Piper Talk?
No. When Piper Jane was 3 months old and we were having the pre-surgery consultation with her ENT, he warned us that speech delay is one of the biggest side-effects for children with trachs. If she can get off the ventilator, she’ll be able to have a speech valve put on that can allow her to talk. The trach blocks her vocal cords for the most part, but if she contorts a little, she can get a leak from the vent and squeeze some squeaks out. Just like the little pipsqueak that she is.

How do you pronounce Pip?
Someone asked in a comment if it was like “Sip”. Yes! It’s like Sip! And pippy is like sippy! Naming Piper-Piper was basically the best decision I ever made. She has more nicknames than you can dance a jig with. Anything with a ”P” is a candidate. PIPsqueak, P-body, Pippin, Pipsey, Pippet, Pipster….A million. Pip, Pip, Hooray!

How did you come up with the name Piper Jane?
I heard the name Piper when I was in high school from the TV show “charmed”. I was flipping through the channels and didn’t actually watch that show, but just caught enough of to hear the name. I never forgot it. When I was pregnant I told my mom I like that name and she told me about the actress, Piper Laurie, and I looked her up. I named my daughter after her. She is so beautiful and that name is just spunk-city. I was still throwing around names up until Pip was born, but after she came (and was rushed out of the room before I got to see her) my doctor peeked around the curtain and asked what her name was. I told her Piper Jane and it just happened to come right out of my mouth like it was never a question. My doctor said “I like it! It’s upbeat!”, which is exactly the kind of name Piper needed. When Jake arrived at the hospital I was in the recovery room and sheepishly confessed that I had accidentally named our child without him, but that her middle name was after his sister, Sarah Jane. He was happy and I was happy and pip was happy and our family was happy. It’s like this, every once in a while you do something so dang smart, and on May 21st 2007, I did something dang smart…

What is the next weird meal you’ll make for dinner? What other weird food have you made?
I don’t really know. It will most definitely have a superfluous amount of cheese smothered in every nook of it though. -Other weird food I’ve made is the burger melt (look it up in my June 2010 archives)…and when Jake and I were first married I’d make him crazy food that we had on hand. Like Pop tarts and Ramen Noodles together.

Where are 3 places you shop for clothes?
Modcloth.com, Urban outfitters and Anthropologie. Can I throw in Madewell too?

What is your tattoo of?
It’s a cute little flower on my foot. I think it’s pretty, and I like where it is, but I wish I had put some thought into it, being that it is a permanent thing on my body. I’m not anti tattoos, but I never really thought about getting one. When I was 20 my friend asked me to go with her to get her tattoo touched up, and I ended up getting one out of no where. Basically my flower-pants-tat was a total impulse. If I could redo it, I’d probably get my favorite music lyrics or a Peanut Butter and Jelly sandwich. PB and J are my two loves. (Piper Breinholt and Jake).

I’ll answer some more questions pretty soon!

*I’m addicted to formspring. I love the questions I’m getting. I’ll call Jake and be like “Jake some-one’s question was “Your husband is Hot” and that is all they said! and then we laugh and laugh! And then some of the questions I can tell are from my family or friends and those are awesome too. So many of you are the funniest people ever and I will just laugh out loud (I don’t write LOL because for some reason I always think it’s a lie. If you write LOL to me I automatically assume that you didn’t really laugh out loud. I don’t know why…) at what I’m reading and then look crazy for laughing out loud in a public place by myself.

Also, really, the longer questions and statements are getting cut off like I said before. So if I don’t respond, it is most likely that I don’t know what your whole question is…

Thanks for the questions guys. It has been really fun!

So the most popular questions by a landslide are along the lines of “Why can’t Piper come home?” and “will she always be on a ventilator?”.

I think I kind of made the mistake in my last post of making it sound like we have the option of bringing her home and we just choose not to. That isn’t the case at all. Having Piper Jane at home isn’t even possible at all right now, not because we have chosen that, but because it is much too dangerous and risky to have her out of an acute care situation. Her doctor wont even let us, and we trust that it is in Piper’s best interest to not argue with that decision. We wish we could, but we can’t.

Piper is missing half of her ribs, she has severe scoliosis and kyphosis. The majority of business going on in her chest/spine area is a little jumbly and funky, causing a lot of problems with her breathing. Her lungs can’t expand all of the way, so she can never take a deep breath. The ventilator gives her a higher percentage of oxygen (normal room O2 percent is 21%, and she gets 28%), and a higher volume as well to make up for the short/quick breaths she has to take. She used to have extremely high vent settings, her O2% was around 60, but was weened significantly when she was about a year and a half old. Unfortunately, since then she hasn’t budged at all with the weening. Absolutely no progress at all. Sucky.

Until she turned one, she was on a gigantic Ventilator called the Servo i. It was huge and not portable, so we couldn’t take walks or bring her out of her room. If she was still on that, she wouldn’t be able to go to school or be taken out for therapy. Switching from the servo to the portable vent was a huge deal for Piper Jane. We were very excited.

Yes, sometimes people live at home on ventilators, but they are obviously not as sick as Piper. She is doing great, really great, but easily will still turn blue if she is disconnected from the vent for any amount of time. She is so dependant on the support she gets from the ventilator, that it is just very dangerous to have her away from a hospital.

And next. We have no idea if or when she will come home. No idea. Neither do her doctors. No idea.

We’ll have a better idea If/When Piper Jane can get off the ventilator. When it happens, we’ll let you know and then we’ll have a party.

With the vent, like I said, she is completely stagnant with her settings. CCMS is so rare, and Piper’s case seems to be the most severe of any cases still living, by a lot….so the doctors don’t really have much to go by. With a more common disease, they might be able to compare cases and see when progress can be expected, but with Piper Jane (and you all know this by now….and love her to pieces for it) she is her own spunky/unique/individual Pip that can’t be figured out. She has made us all very VERY aware that she is doing everything on her own watch. Just when we think we have her number, we are completely thrown for a loop. Way to go Pip.

I hope this answer is thorough and that you will stop asking me when she is coming home, haha! (I guess I don’t really blame you)

For the record, you all asked nicely