Can we see some pregnancy pictures?
Sure! I have about 5 of them. Jake worked constantly during my pregnancy. We hardly ever saw each other and what was I gonna do, take pictures of myself?

Here I was at about 5 and a half months. (I’m pretending to be Animal from the muppets)

Here I was 6 months along. These are my friends from high school. They threw me a little shower.

This was about 6 and a half months along.

This was just two weeks before I delivered, so I was almost 7 months.

Kind of boring pictures. No line up week by week. Jake is sorry for not being there, so don’t be mad at him.

What was your pregnancy like? Why was it so hard?
Well, for starters I was very sick, with IVs and such. When I was 20 weeks along I weighed less than I did pre-pregnancy. I found out my baby was sick at 17 weeks, but that the problems were vague. So I had months of tests, shots, and doctors visits. I had three doctors visits weekly and they usually lasted about 3 hours each. I had a severely high level of amniotic fluid that had to be monitored with two ultrasounds weekly. I spent hours in an office on several occasions with my doctor, a genetic specialist, a cranio facial specialist and a cardiologist so they could explain any new findings. And since Jake was at a new firm, and had the craziest hours in the world, I was almost always there alone.

Then I delivered two months early with a very traumatizing emergency c-section with no family or loved ones. Just a room full of hospital staff (over 20 people). They rushed Piper Jane off before I was able to see her, and I didn’t even get to hold her for 3 weeks. (I had gone to the hospital the day before because Pip wasn’t really moving, they were about to discharge me after I got an ultrasound so I told Jake just to go to work. Then during the ultrasound they decided they needed to deliver immediately, and that is why Jake wasn’t there). And I missed my sister’s wedding in Memphis. The whole thing sucked. It was the scariest 7 months ever. Please forgive me when you rave about how perfect your pregnancy was and I roll my eyes and then punch you in the neck.  Just kidding, good for you, you lucky little son of a…

The important thing is that Piper Jane survived the dangerous, scary and early delivery. And as terrible as I remember it (I get cold chills just typing about it) I would do it ten times for her. I would. And that is saying a lot because for about a week it looked like I had a smiley face on my stomach. Which is really creepy when it is really a surgical incision.

(note: When Piper Jane was born the economy was booming and Jake’s firm was booming too. The average time he got home from work was after midnight. He still struggles with how much he had to miss out on during that time.)

Did you have pressure to terminate?
Not really. You can terminate a pregnancy up until 6 months in NY, and my doctor reminded me often of how many weeks I had left for that option. I felt like it was more of a legal obligation for her to remind me, rather than “pressure”. I also think she might have just been trying to make me aware of how serious Piper’s situation was. I was in a bit of denial, and just didn’t think “a small chin” sounded serious enough to terminate (the small chin was all we knew for sure at the time). She was very respectful of my choice to continue my pregnancy. My OB was awesome.

How do you stay positive?
Well, I think I’m a pretty positive person by nature, I’m lucky that way. I’m a jokester and a lover and a dreamer all at once. Also I have to fake it sometimes. And when I say “fake it” I mostly mean having to make the choice to be happy when I’m not really feeling it. It mostly works pretty well, but sometimes I do let myself whine and boob. I would say the best way to turn around a negative mood, is to think about all the other things that are going really well for us. Like wah wah wah my baby doesn’t live with me, but hooray, yippee and h’ yeah that she freaking walks now! I mean, Hello, right??!! Also, you might think I’m totally vain for this, but when I’m really missing Piper Jane, I read my own blob. I watch videos, look at piptures and read the cute stories of her sass. It helps! I also pump myself up by remembering how lucky I am to have such an amazing daughter. I’m going to brag for a minute, I am told every day what an inspiration piper jane is to people, and I believe it all the way down to my tippiest toes. Piper Jane is such an amazing little thing, and somehow I am important enough to be a big part of her life. My heart is currently going ape at the thought. I just bragged up a storm, I admit that. But that is how I stay positive, I guess. Self flattery! haha!

What advice do you have for parents who have children with special needs?
Try really hard to be understanding when people say insensetive things. I am still working on this one. But when people are still saying “one day Piper Jane will be totally normal and she wont remember any of this” I’m like, ummmm, that’s not true at all and you aren’t helping things. I still let myself get hurt over little things that aren’t intentionally hurtful. It’s a big waste. Why do I do that to myself?

Find joy in the tiny things. Celebrate a smile, a clap, a yawn, a poop! It will help you love your child more than you can imagine.

Pump yourself up. Sometimes I’m bummed and I want to quit, so I’m like “Reags! freaking get it together, lady! You are the only one that can do this, and you can give that pip things that no one else can! Plus you’re pretty much her favorite person she ever climbed on!”. Then the eye of the tiger plays in my head and the nurse asks me why I’m doing jumping jacks.

How have the nurses doted on piper? stories?
Where do I start? This could have it’s own post! Nurses have sent me texts of Piper doing something new, they have cried when she’s moved facilities, their families know all about her, they have fought over who gets to watch her that shift, they bring her presents, one traveled an hour and a half on her day off to be at a meeting pre-surgery, and many of them read my blog to see piptures! They comfort her when she is sad, they play with her when they’re not busy with other kids. And when I arrive they run in her room to tell me the most recent, hilarious Piper story. One recently told me she requested to work on Halloween so she could see what miss Piper is going to be.

I love Piper’s nurses. From the NICU, the PICU and Blythedale especially.

I of course realize that many of them are just doing their job with her, but for the most part, a lot of them have grown very attached to her in the last 3 years, and I can’t say I really blame them for that.

Tell us more about CCMS? How rare is it?

I’ve talked about the missing ribs, the scoliosis and kyphosis, but there are a lot of other ways Piper is affected. All the kids with CCMS also have really small chins. This is actually pretty common with a few other syndromes, and there are a lot of problems a small chin causes. There is a procedure to extract the jaw, but it is long and very painful and they don’t think it will do much good for Pip. Cognitively, kids with ccms are all over the place. Some are 100% up to speed, and some have had damage due to episodes with lack of oxygen. I’m not sure where Piper Jane is, and I’m going to stop there for now.

Piper Jane has been up and down with pulmonary hypertension her whole life, and there are a few handfuls of other ways Pip is affected. It is just a really long and complicated syndrome. All of the other kids with it have hearing aids, and although Piper Jane had a recent hearing test, I haven’t heard the results yet.

CCMS is really rare. I don’t know how rare specifically, but it is really really rare. There are a few other cases that I have heard of, and I’m in touch with a few mothers around the world. Just so we’re clear there, I said WORLD, not city, county or state. I said world. Yeah, ccms is really rare.

The life expectancy isn’t very good. Most kids with it don’t survive the delivery, then less than half of them survive the first two years. It’s basically a miracle that Piper Jane is doing so well for having such a severe case, not to mention the incredibleness of surviving the delivery. She is the absolute most severe out of all the cases we know of. (none of the other kids live in hospitals or need vents, but they’re not coasting easily through life either.)

Share your darkest times and how you got through them…What helped and what didn’t?
The first year of Pip’s life was very hard. And I tried my hardest to fake happiness, but I often was just plain sad. Pip was sick all of the time, she was tiny and premature, she was very fragile, she turned blue about 10 times during every visit, would get ambu-bagged regularly, had a tracheostomy at just 3 months (weighing only 4 lbs), caught nasty infections and was constantly having to get IVs in places like her head. I don’t know why, but when things are tough in the NICU and you don’t think things can get any worse, they suddenly shave your child’s head to stick an IV in it after they’ve tried every other possible body part. At that point you just feel like it is a sick joke. It makes every mom crazy. I didn’t get the hardness of the shaved head until it was our turn. Then the hair grows back just in time to be shaved again in an emergency.

It was a very hard year for her especially (obviously), because of how uncomfortable she was all the time. We hardly got to hold her because she was always hooked up to so many things and she was so little and fragile. She was so small, I was a little bit post partumly depressed and we had absolutely no idea if, how or when things would get better. Doctors wont tell you anything that they don’t know for sure, so we just didn’t have any idea. I had a hard time dealing with being a mom of such a unique child in the NICU. I had no one to talk to. The moms with twins would gravitate to each other, the moms who had kids with heart conditions would group together, and I never felt like there was a place for me and Piper with the other families. I saw so many families come and go in that 7 months, and it’s really hard to be the one who is always staying there. There were support groups in the NICU, but again, I felt like they were focused on people who stay for about a month or less.

What was the least helpful in that first year, were all the questions I got from people. This is hard, because once again, people were trying to be loving…but when over and over, multiple times a day I’m getting asked how much she weighs, and how much weight she needs to gain to go home, I would feel like no one was listening to me. It would crush me to be asked that…my child has severe health issues, she’s not just premature. It seemed like no one wanted to believe that, and it was very difficult for me to be able to accept it myself when I felt so misunderstood. People would say things all the time like “my baby was one pound and now look at her!” or “my niece had a major surgery when she was a week old, so you have nothing to worry about”. I knew right when Piper Jane was born that this wasn’t just something she would grow out of, unfortunately. I wanted to avoid people so I could avoid questions. Those kinds of questions eventually tapered off for the most part. But I still struggle with things people say when they are trying to relate. It can feel sometimes like people are trying to compete for who has had it harder or scarier, which seems weird to write out. Maybe that’s not actually true. I hope I’m not hurting anyone’s feelings. Sometimes all I want is to have someone to relate to, but I guess the way it is pointed out is the key. Every once in a while I will read a really beautiful comment and immediately put it in my starred folder. I need those.

What helps is friends and family. My sister Kelly is probably more of a support than she even knows. I know that if I called her in the middle of the night, she would answer, listen to me, say the most amazing thing that only she would know to say, then hop on the soonest, most expensive flight from Atlanta to be with me. Then she would somehow find a way to make me laugh. I always call her first. That’s not to discredit the rest of our families, they are all unconditionally supportive. Kelly just immediately comes to mind first and I know she worries about Piper as if she were her own.

When Piper has been sick, like she was in January, we have friends who do everything for us. We don’t have to worry about anything but Pip. It makes me sad to think about all the times we’ve had to be helped, but it makes me smile that we are such a fortunate family. We have really wonderful friends.

This post was a serious downer. Reagan’s blob hooray isn’t a sob-fest. It’s a smile-fest. Thanks bye. So here is a fun one.

What the hell do you mean by “moving the car”?
Hahaha. When Jake and I talk about moving the car, we are reffering to the street sweepers. There are millions of people living in this city, so there is also lots and lots of trash to pick up. There is a schedule of street cleaning, or “sweeping”, where all the cars have to be moved from a certain side of the street for an hour and a half so the sweeper can come through. If you don’t move the car, you get a ticket. Parking garages and lots cost a fortune, about 5,6 or 7 hundred a month, so most people park on the street. Since most streets are one way, one side of the street will have sweeping monday and thursday, and the other side will have sweeping on tuesday and friday. wednesday is no sweeping except for on really busy streets (broadway, etc.). Weekends and holidays are also suspended. Since we are at work during the sweep, some times we have to move the car really early in the morning. And that is everything you ever wanted to know about street cleaning.

This might be the longest post ever written in the history of blogs.

(ps I disabled formspring, but first I copied a bunch of the questions into an email so I could continue with the ones I planned to answer)