Cameron's Story: January 2009

Well, it's been almost a month since I last posted. A ton has happened since then and I just haven't been able to find the time to update the blog. Cameron's surgery was a success, but his recovery was a little rough. He was back on the ventilator for quite a few days and then pulled the g-tube out after about a week! He finally has his 'button' now and it seems to be healing nicely. His scary death spells have stopped, but as a result of the surgery he isn't able to burp as easily and has become very gassy (read- fussy).

The most exciting news of all though is that our little Cameron is finally home! He was discharged Tuesday of last week, after an excruciating 115 days in the hospital.

**Note- the above was started on 1/28. Today is now 2/13. I have been trying VERY HARD to update this thing, but for some strange reason all my free time seems to have disappeared. :) Continued....

So Cam came home on 1/20, the same day our new president was inaugurated. Who knows, maybe Cameron will be president one day and tell the story about the day he came home. It has been a whirlwind three and a half weeks with an average of 3 doctor appointments and/or nurse visits and/or AZ case workers coming by the house. Every outing is an adventure to say the least.

Cameron is doing great so far at home. He seems to be adjusting to home life well, although he does not like to sleep during the day for more than 15 minutes at a time. Complicating matters, he still has some 'positional' apnea whenever he starts to doze off and happens to be laying flat (or in a swing). At night he sleeps pretty well and we have this nifty wedge and sling positioner so he can sleep elevated and on his side. He'll sleep for 2-3 hours straight at night, mostly just get up for diaper changes which is nice. He is still on his oxygen, gets his food through his 'g-tube', and is monitored for apnea by a pulse oximeter. Thankfully, his pulmonologist let us ditch the apnea monitor. That thing never seemed to work right and was just one more set of cords to get tangled with everything else.

As for Mike and I, we are so thankful to have him home finally, although admittedly are feeling a bit overwhelmed. I am still pumping 6 times a day to keep getting Cameron all the great nutrients and antibodies that come from breastmilk, so that's enough of a time drain in itself. Fortunately for me, and unfortunately for him, Mike continues to work from home so he's been able to watch Mr Cameron during my hours of pumping. Somehow he is still able to get some work done and has even brought on a couple new clients! We are newly appreciative of all the parents in the world, and are even more impressed with parents of special needs kids. Although Cameron is lumped into that category, fortunately his doctors are confident he will outgrow most of his 'special needs'.

Some quick medical updates on him-
He is finally out of the woods for ROP (that means his eyes are clear and no surgery).
He needs to be retested in his left ear for hearing, but was screaming during the intital exam, so that's pretty normal.
He'll probably have his cleft palate surgery in December (they like to wait until they are about a year adjusted).
His 'button', or g-tube, has healed very nicely and doesn't seem to bother him at all or discourage him from laying on his tummy. It still gives me the heebie jeebies though.
He gaining weight like a champ, up to 10 and a half pounds already!!

As far as his development, they judge everything based on his 'adjusted age'. Which means his age if he had been born on his due date. So right now he is approximately a month and a half adjusted. Some awesome developmental milestones he has achieved since coming home-
He rolls from his tummy to back pretty easily.
He likes to bat at his toys hanging from his play gym.
His neck is getting really strong and he will turn towards our voices.
He's just starting cooing, making the most adorable noises when he's falling asleep.

I'm working on uploading our piles of pictures to a picasa web album, but who knows when I'll complete that. :) For now, here are some cute pics from the past month or so.

Also, thank you all for your continued support and prayers. I owe many of you thank you cards for your wonderful gifts (I'm getting about two written a week at this point). I also owe ALL of you a birth/welcome home announcement for Cameron as well. Working on that one as we speak. Hope you enjoy the pics!

Final days in the hospital and most of Cameron's friends (I'm bummed we weren't able to get pics of his docs and we missed a couple of his nurses too!)-

Get me out of here guys!

Lori (one of Cameron's primary nurses) kept us entertained on nights and I swear we'll get her to give Sauce one more chance.

Kathy Forbis (it's weird I know the RTs last names but not Cameron's primary nurses). Must be because they are all named Kathleen or Kathy. :) Kathy and Lori helped me hold Cameron the first time while he was still on the dreaded oscillator.

Speaking of RTs named Kathleen...Here's Kathleen Mittendorf (left) and Jessica (one of Cameron's primary nurses). Kathleen's aunt in law runs the Jack Russell rescue we adopted Max from. Small world! Jessica loved holding Cameron while she charted.

And of course Miss Carrie (one of his primary nurses). She swears she only work 3 days a week but I don't believe her. Seems like she was always there! I think she just couldn't stand to be away from our Cam bear.

Discharge day! A different Lori (left) helped send Cam off. Thankfully she was a familiar face and she was very gracious as we monopolized her time. Tracie (our social worker) was also there to make sure everything went smoothly. Tracie was a godsend and helped us save our sanity on several occasions. One of these days I'll have to meet up with all my girls for happy hour. :)

Here we are ready to run for the door.

Cameron and daddy have *almost* matching outfits!

Finally home!

"Oh no, did someone say hospital? Don't take me back there!!"

Our future Sun Devil loves to blow bubbles. Don't worry, we cleaned him up right after the pic.

First bath at home! You can see his 'button' in this pic too.

Just hanging out with daddy in our well used glider.

I love those big eyes!

Our first walk up to Fresh and Easy. Although he is quarantined from visitors with icky cold and flu germs, we can take him on walks to break our cabin fever. Fortunately for us, it's warm enough in AZ in the winter to do this.