Marci came to see Piper today. It was a complete joy to show my baby off to her. Of course, Pipes was adorbs as usual and displayed trying to roll over and escape her bouncy chair (actually they put her in Jace's by accident). Piper has been enjoying larger portions of formula these days and has packed on about a lb and a half. She is up to 14 lbs. I can tell not only when I look at her, but also when I hold her it's like holding a total fatty. Is it a mom thing that I'm now worried she'll grow too fast? She gained a total of 2 lbs the entire year of 2008, and has almost already matched that by the middle of the first month of '09? Did that sentence seem weird? And does it seem weird that "adorbs" isn't a real word? It should be. I have lots of big news, so you better read on if you know what's good for you. I've met someone with CCMS. My evil plan worked and someone found me by googling Cerebro Costo Mandibular Syndrome. I'm genius, right? It has been wonderful to correspond with another mommy who has worried, wondered and dealt with similar things I have been, but for 17 years! Although it sounds like Piper's case is more severe in most areas, this young boy has still endured mountains compared to most people and has been effected daily by this syndrome. The family is amazing and such an inspiration. In some ways it was a difficult awakening to things I had been in denial about. I sort of hoped (naively) that once Piper got off the ventilator, got a little older and through some therapy, this would all just be a memory. I'm understanding more and more that this is Piper's life forever. She probably wont be able to run long distance like I love to, she probably wont be able to take gymnastics like I always wanted to and because of the way her spine and hips are, she may never even walk unassisted.

What talking to this awesome mom, and being Pip's mama has tought me is that you figure out a way to refocus on what really matters in life. Piper knows I have a short attention span, so she is my daily/hourly/minute by minute reminder that so much of the things I worry about, shouldn't be worried about at all. I wish Pippy could run through our long hallway, collect rocks, tie her feet together pretending to be a mermaid and come with us on vacations, but it's ok that they may not happen. What matters is that she is comfortable, happy and that we love every minute the time we spend with her like we should. I hope to contribute to her comfort and happiness in everyway I can.

With that said, our other big news is that we aren't moving anymore. So, at least one more year of this. Jake (via speakerphone) and I had a meeting with Piper's doctor and our social worker today. They told us that although the progress Piper has made in the past few months is very impressive and important, they don't think that coming home will happen in 2009. I respect and trust that Dr. Mitchell knows best for Piper, so we aren't going to get upset about it. Even though Pipsey is completing several hours of trache collar every day, the percent of oxygen she gets is too high for what the home equipment can handle. Basically, it would be very dangerous for her to be home.

I'm not devistated. I'm not even very disapointed because I understand that it's the best thing. Piper is doing great and who is going to complain about that? I just hope that she continues to learn and beef up those gams.

Labels: ccms, friends, piper jane

The title is just a fancy way of saying HOLY CRAP PIPER IS AWESOME!!!

That's right, feast your eyes on the puppy (or Pippy) that I'm about to reveal........Piper Jane completed two hours of trach collar yesterday and more than three hours today! That means, NO VENT! Just oxygen. Pretty amazing. I mean, seriously amazing.

I'll be honest, there have been times where I thought Piper would be vent dependant the rest of her life, but I'm starting to think that one day she'll be totally off the ventilator completely and maybe even trach-less! I'm so proud of her. I had cold chills when I saw her today with the little misting collar. She was just kicking around and playing like....."yeah, I'm on trach collar. so what?". Show off I guess :)

She was supposed to do 4 hours today, and I think she could have, but she started to get a little tired from breathing all on her own like a big girl. At the first sign of fatigue, we decided to not push it and give the champ a rest.

Did I mention that Piper is my everything? I want to scream down the stairwell that I have the most amazing baby in the world. And don't get me wrong, I would, but I just don't think I can scream louder than my neighbor's music. Piper, I just love you so much that I want to wallpaper my apartment with your pictures. I would like to snuggle you until you turn 30. Maybe I will.

Oh yeah, Piper also sent her first text message today. It said "Jjhj". Every time she sees me holding my phone she reaches out and swipes it from me like, how dare I play with something so fun right in front of her?

Labels: ccms, mother in smother, piper jane

This is what Piper Jane's condition is called. I decided to write about it even though many of you already know a lot about it. I chose to make the name of it the title of this post because I'm hoping it will come up if googled, creating a way to get in touch with other families who are experiencing it. It is an extremely rare syndrome, making it a sort of isolating experience. I would just die at the opportunity to meet a family going through what Jake, myself and especially Piper have gone through. With less than 50 recorded cases and most of them not surviving birth, it's trick-freakin-y. I google it every once in a while hoping to find out more information, or recent discoveries. Who knows, maybe some other hot, young mother is doing the same!!

I'm going to write some important details in Piper's history, just to fill everyone in...

When I was 17 weeks pregnant, I had an ultrasound resulting in two important finds: a sack of fluid on the back of pip's neck and a very small, underdeveloped chin. Both big, red flags that there were probably many more problems not able to be seen while in utero. The rest of my pregnancy was blood tests, an amnio, millions of ultrasounds, fetal echos, MRIs and such to try to figure out how to save this special baby and treat her properly. She was of course born 8 weeks early through emergency c-section.

They diagnosed her shortly after she was born with CCMS. The two most common factors in CCMS is the Micrognathia (underdeveloped chin) and the rib/ chest abnormalities. Piper is missing half of her rib cage, which is the suspected reason she has so many breathing issues. She has six on one side and seven on the other. Since the structure of her chest is so abnormal, her rib cage is also too small, so her lungs are prevented from expanding all the way, resulting in quick/short breaths....resulting in burning pretty much all of her calories on breathing so hard, resulting in the teensiness. Along with many of her ribs, one of her scapula and clavicles is still cartilege, so positioning and therapy is vital for her comfort. Her scoliosis and kyphosis (curved and "humped" spine) is taking a negative turn, so I expect we'll be working on that soon.

I have spoken with a surgeon in Philadelphia specializing in rib surgery and while he thinks Piper is a great candidate for rib expansion, he doesn't know that she would survive such a major prcedure at this time. He thinks we should wait. I concur!!!!!

Piper has pulmonary hypertension which used to be a really serious thing, but thanks to her incredible doctors, they have found the perfect cocktail of medications to keep it under control and stop scaring the pee out of us. She has mostly been cured of cross-eyedness and has full hearing in only her left ear. Her right nostril isn't an open airway and the right side of her heart works harder than the left. Making a thick muscle around it. I think that's it!!

This is a small post compared to the procedures and episodes she has endured. Really, microscopic in comparison. Writing and reading about her makes me love her, apreciate her, adore her and completely stand in amazement at her fighting power! Piper, why do you want to be here? Why are you so awesome? Why do you hate getting your nose wiped? Why did you choose to be a Breinholt? I know I'm going to be answered all of my millions of questions some day. I know a lot more than I did before Piper. How does a baby do that?

I feel it is very necessary for me to be open about Piper, mostly because her condition is so rare and she is such an inspiration. I do try to be respectful to her in the way that I write and hope that I'm doing a good job of it. I love her to the depth of my soul and the tips of my toes. I'm proud of her every day for her progress, strong will and just for being her unique little self.

Sorry I brag so much! Don't be jeal!

Labels: ccms, piper jane