Tomorrow is coming way too fast...

Tomorrow is Paxton's surgery.
Already.
We have to be at Children's Hospital at 7:30 am, they will probably take him into the operating room around 9 am. That's the worst feeling in the world, by the way....handing your baby over the the surgical nurse, watching her walk away with him....
I'm incredibly nervous about tomorrow. I hate the fact he's going to be in so much pain. It's just not fair. He's just a baby.
On another note, thanks so much to everyone that has listened endlessly to my worries and fears, and have lended me an ear. And thanks for all your help with Delaney and Cam. Thanks for all your support. You know who you are....some of you are kindred spirits I met on parent to parent! This is a difficult journey we are on. But we are blessed to have this baby....he's hilarious, cuddly, has tons of attitude, and gives the wettest kisses! He bounces on beds. He loves to wrestle. He's a binky addict. He drowns rubber duckies in the tub. He's such a troublemaker already! I love him with every ounce of my being.
Please keep him in your thoughts and prayers, it's gonna be a tough week.

Why I haven't blogged in a while.

Well, Pax got sick. Really sick, actually. I was positively horrified when I recieved the call from the pediatrician....mostly because she sounded....a little panicked. Paxton was swabbed on Thursday the 30th because he has gone through multiple rounds of antibiotics and still has a bad cough and DISGUSTING nose. And infected ears. This has been going on for 9 weeks. The doctor told me the cultures would sit over the weekend and they would call me with the results on Monday.

The results were bad, probably the worst they couold have been. They found pseudomonas aeruginosa and strep pneumo. A rather lethal pair. Pseudomonas aeruginosas are VERY serious, and are only found in people that are severely immune compromised (think HIV or chemotherapy patients), have severe burns, or have chronic lung disease. Damn. Lung disease it is. The stuff has set up a friggin colony on my baby's lifeline....his NG tube. His link to hydration. It's all through his sinuses, in his ears, throat, and more than likely, his lungs. It's particularly notorious for being antibiotic resistant, so the meds we were giving him had no effect. Might as well have been giving him grape juice. So he needs a round of IV meds...strong ones. Ones that have serious side effects like muscle damage, heart arrythmia (have I mentioned he has a hole in his heart??), blood thinning, and other nasty things. And it's not exactly approved kids. And he has a bad history of blowing veins with IV's, he can't seem to keep a line for more than a day.

Anyway - the NG tube thing kind of became a problem all of a sudden. So Infectious Diseases, Pulmo, his pedi, and Dr. Gorham (not sure what to call her, other than Paxton's main doctor...she oversees everything) all got together and pretty much attacked the pediatric surgery department and demanded he be seen ASAP. We got a next day appointment.

We met the surgeon today, she will place his gastronomy tube (G tube) on Monday morning. He will get a low profile Mickey button, which is nice...no PEG tube to deal with. Those things are mildly appalling. His ENT will also place ear tubes after the stomach surgery is done. Then he will be inpatient until he recovers. Before we go home he has to be able to tolerate pain without morphine, be able to tolerate feedings without vomiting, and we have to know what to do with the button and how to take care of his stoma.

So in a couple of days I will be able to kiss BOTH of my sweet boy's cheeks.

Too bad I am scared to death. I just wish this was all a bad dream. Don't ever take the little things for granted....like feeding your baby a bottle at night.

Wish Paxton luck, and keep him in your prayers.

Yesterday at The Children's Institute.

Our visit to The Children's Institute yesterday went pretty well. They reviewed his most recent echocardiogram with us, and the hole in his heart (in the atrium) is still small and stable, and cardiology signed off on him with our consent. Awesome! The nutritionist tweaked his tube feeds so that we have him on more of a regular bolus schedule, with continuous feeds overnight, so that frees him up during the day more. She also gave us the recipe to start concentrating his formula so he gets more calories per ounce (22 instead of 20). It's just a higher ratio of powder. He needs more calories to grow now that he's active because of how hard he works to breathe. We also discussed his Ng tube. He has had it in for a pretty long time now as far as NG tubes are concerned. They are more of a short term thing because of the damage to the nose and sinuses. Pax has been on some form of antibiotics for the past 3 months thanks to the tube...his sinuses are constantly infected because of the irritation, and his ears get infected because of the drainage into the ear. It's a horrible cycle that leaves my baby miserable. So the next step is a G tube, which is a surgically placed tube (well, button valve, actually....you attach the extension tubing for feeds) that goes directly into the stomach. Each tube has it's pros and cons. But the G tube will allow him to be more normal, and give him more freedom. While I hate surgeries, this will allow him to play with his cousin, breathe easier, and feel better in general. G tubes have their downsides - infections (MRSA) at the stoma site, stomach acid leakage, granulation tissue....but they will be taken in stride just like the downsides we have encountered with the NGT. Tomorrow he sees his pulmonologist, and hopefully that will be our last appointment until we see the pediatric surgeon for his GT assessment.

Wordless Wednesday.

Enjoy Fall!

Thank heavens for binkies!

I didn't think I would ever say those words. Delaney and Cam never took a binky. I actually tried to get Cam to take a binky, thinking it would cut down on the amount of time he spent screaming.

Maybe I should still be trying.

Anyway, Pax started out not liking the binky much at all. In the first 2 weeks of his life, he could take it or leave it.

Then he was hospitalized for the first time. The binky (at the time it was the trusty green hospital soothie) was a savior. The doctors took him off feedings, IV nutrition was his only source of hydration. The binky and little cups of sweet-ease were his new friends.

After that, the binky was ever present.

The bink has seen us through sleepless nights at home and in the hospital, through IV's and blood draws, through surgical procedures and recovery rooms, and has kept him oral through tube feeds.

Pax has his bink plugged into his little mouth about 90% of the day, only popping it out for something more favorable, like Cam's hot wheels cars, or a different binky. The kid cannot seem to pass up an abandoned bink, he has a compulsive need to switch them.

The binky quiets him when he's mad, and soothes him to sleep. What more could you ask for?

This blog is to you, silicone Nuk pacifier. Thanks for the peace and quiet!

Could you repeat that, please???

So I have been sitting here thinking about some of the more ridiculous things I have said as a mother...and how, if you are simply listening in on the conversation, I would sound like I am completely insane, or at least living in an asylum with insane children in it. Here are a few examples from the week -
"Please don't bring your gun to the table."
"Don't shoot the baby!"
"Don't lick the cat, your going to get scratched."
"Stop shaking your p-e-n-i-s at me and get dressed."
"Get your p-e-n-i-s out of your sister's dollhouse potty and GET DRESSED!"
"Farts are not weapons, you're going to poop your pants."
"The IV pole is not a stripping pole, please stop treating it as such."
"Don't wipe your boogers on the bed."
"Get that straw out of your nose! Do you WANT a feeding tube??"
Now as you'll notice, most of these comments are directed towards Camden. No, all but one of these are directed towards Cam. The other is to Pax. This should have been titled "What happens when you have 2 boys in your house." Hmmm....

A little backtrack...

I thought this might help explain my blog title, for those unfamiliar with Emily Perl Kingsley. This little story helped me through a lot....

Welcome To Holland
by Emily Perl Kingsley
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland