More Thanks

A huge thanks to Grandma Kaye for her time out here in LA with us. Her help has and will continue to be invaluable, and this whole thing would be infinitely harder without her. She put the rest of her life on hold for us, which is truly heroic.



Also, enormous thanks to Grandpa Jim for keeping an eye on our two pups as well. This task is not an easy one, especially with Esme who's a real handful. We're grateful our little ones have Jim's Cheesedogger Emporium to hang out in, so they didn't have to be boarded for over a month.

Thanks in advance to Grandma Donna as well, as I am positive she will be a big help with Parker when we're consumed with Kris' recovery from surgery.

Love,
Mike & Kris

Phase 1 Complete

Today was a glorious day as we all walked out of the hospital as a family. OK, so hospital policy requires patients to be wheeled out and Parker is still a few weeks away from walking, but you get the idea.





It feels great to be back in the comforts of our home away from home, much more spacious fo sho. I know Kris is thoroughly enjoying the nap she's getting in a real bed right now, without some eastern European nurse barging in to take vital signs or whatever the inconvenience of the hour happens to be. Don't get me wrong the people at Cedars-Sinai were outstanding, I'm just saying that hospitals just aren't all that awesome for extended stays is all. But I digress....

We're all really happy now, and we can rest a little for a few weeks while we prepare for phase 2: Tumor extraction. We're anxious to get Kris on the better side of this tumor, but the surgery is still a very scary endeavor.

It'll be pretty quiet here for a few weeks so you probably won't here much from me until the date of June 4th draws near. Perhaps in the meantime I'll try and convince Kris to put some of her thoughts down on paper for a different perspective on all this.

Special shout out to the help on the ground hear in LA: my great aunt Myrtle who lent us her car (for our entire stay!), my cousins Nancy & Mary who delivered the car and lent their car seat/stroller system, Amanda Carpenter who cooked and gave us rides (looking forward to you visiting more if you're reading this), Kris' co-worker Billy who lent us some baby gear, the ANA folks who gave Kris and Kaye rides before I got here, the list goes on.... We couldn't feel any more comfortable away from home and it has a lot to do with these folks.

Thanks for listening and thanks again for the support.

Homeward Bound

Parker's Pediatrician stopped in today and let us know that he's doing very well, and has a good chance of going home (meaning the hotel) with us when Kris is discharged tomorrow. Truly fantastic news. Right now we're in no rush, we're just enjoying having him around and going through the routine with him. Eat, poop, sleep. Eat, poop, sleep. Where do I sign up?

He's a super good baby so far, and is not fussy in the slightest. Eats well, sleeps well...just like Dad. I know this will likely change, but that's okay too. Health = happiness for us.

Everyone likes to play the game of "who does he look like?" I personally am not a fan of this game because I can't relate baby features to big people features very well, but let's see what all of you think. Here's a point of reference as well...my baby picture. I don't have a copy of Kris' scanned in so you'll have to use your imagination.

Graduation Day!

Our little dude continues to impress, and he is moving out of the NICU and down to the observation nursery right across the hall from us. No cords or monitors for him anymore, he's free wheeling now. They still will keep an eye on him in the nursery because of his age, but I think we're pretty much responsible for all his care, which is fine by us. The goal is for him to go home with us on Saturday, so we'll here's to hoping we hit that. Right now we've got visions of a Billy Madison type party for him at each stage of his progression (Parker, passed the 3rd Grade, ohh what a glorious daaayyy!).



Very exciting news indeed!

Kris is doing well too, and obviously her spirits have been lifted with him moving even closer to us. Her mobility continues to improve from the C-Section and she's walking around more now. She still has symptoms from the tumor, but they have eased some as compared to pre-delivery. Her neuro team has checked her out here in the hospital and they see no reason for any concern or haste in moving up her surgery. As of now, we're still on for June 4th, but we'll let you know if that changes of course.

Thanks for all the support and well wishes, they're greatly appreciated!

Action Packed Day

Sorry for the lack of updates, but it has been a day full of activities. We had an early morning visit with Parker and then met with his doctors. They were pleased with his progress and took off the breathing supplement and said he could start feeding normally! Here's a pic without the tubes getting in the way of his handsome mug.



The big task of the day has been getting him to feed. A little awkward for both parties at first, but they'll get the hang of it. I've gotten to change his diaper and dress him in some of his own gear, which was actually pretty awesome. I'm sure this thrill will pass, but right now it's all good and I'm loving it.

Today was a little more challenging because they didn't transfer Kris out of ICU until late afternoon, and ICU is not in the same building as the NICU. We had to make several trips back and forth with a nurse wheeling her over, which adds to the rigors of the feeding schedule. We're now in the maternity ward, which is only a floor below the NICU and I can wheel Kris up to see him whenever we want. MUCH better. We're told if he feeds well and his breathing continues to improve, he may be able to come down to our room to hang with us instead of the NICU. We can't wait to have him around full time!

Hopefully I'll have more time tomorrow to post some more pictures.

Another huge breakthrough!

Parker said his first words today. It was a little garbled, but I'm pretty sure he said "Go Blackhawks".

Finally They Meet!

Kris was allowed up to see Parker for the first time, and it was a special reunion!



We're so pleased with his progress already. They extubated him around 4pm pst and he's breathing on his own now. They say he'll be ready for feeding tomorrow. Obviously we were able to hold him, and I was able to take part in his bath, hair combing and diaper change (ewww!) - all awesome experiences. Truly as good of outcome as we could have hoped for so far (knock on wood).

Peace out probably for tonight. I'm pooped and so is Kris.

Update

Kris is doing very well. They put her under general anesthesia for the procedure and then stuck her in ICU mainly because when people here brain tumor they freak. At little extra precaution never hurt anyone and I is for the best, but it has kept Kris apart from Parker thus far which is a big bummer for her. We're working on getting her IV out and sent up to seem him real soon.

As for Parker, he's doing very well. As you can see he's a big boy for his age, much more filled out than I expected! He initially let out some good cries, but then had trouble sustaining good breathing after that, so they intubated him. They did the thorough workup on him and the only thing out of order is RDS (respiratory distress syndrome), which basically means his lungs are a bit immature. They gave him some meds for that and his readings are steadily improving! They're hoping to extubate (take the tube out) him later today, which will be super exciting so we can start feeding and holding him.

Thanks for all the support via email, text, posts etc. Can't wait to bring him home soon.

Welcome Parker Kristian Siwek!

Our little guy is here. 6lbs 14oz, 19" (who won the pool?)



His lungs are a little under developed so he is on a little bit of help from a respirator, but they're hoping he can be weened off soon. They'll be alittle NICU observation after he's off the respirator.

Mom is doing well and recovering now. More later!

It's go time!

Well, we've made the decision to go ahead with the C-Section tomorrow, May 18th @ 9:30 pst. At this point our OB is comfortable where we are at with the pregnancy especially since we're past 34 weeks and have gotten steroid shots to help lung development. The chances at a healthy outcome are very, very good at this point and it is time to have a healthy delivery so we can shift the attention onto Kris getting well. She's put her physical and mental well being on the line for 3 months while her symptoms consistently increased, which is on top of the usual challenges of pregnancy to boot. The surgeons have expressed an urgency to get on with her surgery as soon as possible, so the time is now!

She'll always be my hero for what she has endured for our son. Her time to get well is coming soon!

Can't wait to introduce our little man to you very soon.

Mike

Testing

Hello All, Not to much going on here right now...it's a waiting game until we meet with the surgeon again on Monday. So with us having some down time I thought I'd test out our new camcorder and see if I can post a quick video to this blog successfully. Here goes.

Till next time...
Mike

The dates are ever changing....

Okay, so here is the latest. My mom and I made it safely to LA! The weather here is awesome and people have been great. I have met all of my doctors...they are wonderful...I am in the right place.

My neurosurgeon wants to see me again on Monday to assess how I am doing. The brainstem compression has made me quite symptomatic. Between the tumor and my ever expanding belly it is difficult for me to get around without holding on to my mom.

If all is the same on Monday, I am delivering the baby on the evening of 5/20. My neurosurgeon doesn't want anything going on with my spine right now, so unfortunately I will be having my c-section under general anesthesia (ie knocked out vs epidural or spinal block). I am sad to miss out on those first moments of my son's life and meeting my him for the first time with Michael, but I don't have a choice and I trust my docs to do what is best for me.

Then as soon as I am cleared and moving around post c-section they are going to knock me out again and tackle this tumor.

So my dates are ever changing. Right now tumor day is 6/4 and that date will only move up.

Mike will likely be updating this blog from here on out...I may post here and there as the spirit moves me :)

Thank you everyone for your ongoing thoughts, prayers and support!

I am now taking guesses on baby weight. I am predicting 6 lbs 10 oz (though it feels like he must be at least 10 lbs)...Just hoping his lungs are good and that he doesn't require any NICU time! He has dropped I am told, so I am hoping that is a good sign!

Love to you all, Kris

Thought you all might be interested in an upcoming article in Harper's Bazaar on Tara Subkoff, a designer and actress who recently had surgery to remove her acoustic neuroma at House Institute in LA (where I am having surgery:


http://www.harpersbazaar.com/magazine/feature-articles/tara-subkoff-brain-tumor-0510

Also for any of you who remember the group TLC from the 90's (Waterfalls), here is video clip of T-Boz talking about her acoustic neuroma and Dr Rick Friedman who is also my doc...

http://www.comcast.net/video/t-boz-s-brain-tumor-battle/1313634743/Comcast/1313496770/