Huge Success!!!!

Reading with Papa after being home from the hospital for only a couple of hours

McKinley's surgery was a huge success!  We are blown away by how amazing she is doing now that she is home.  In fact, she was doing amazing just hours after her surgery.  She came home in less than 24 hours and even the nurses were amazed.  In fact her nurse that discharged us wanted to make sure she had all the "drugs" she needed just in case and she hasn't needed anything.  I gave her Tylenol before bed last night and first thing this morning just because I was sure she needed it, but I really don't think she did.  She is an amazingly tough girl.  She has 5 incisions on her back and every time she cries I ask her what hurts (she's two so naturally, there's lot of random crying) and every time she shows me a tiny scrape on her finger from a fall last week!  I'm thinking...do you even know there are holes and stitches in your back?!?!  I'm just praying that she continues to get even better from here on out.  God is so good and I cannot tell you how thankful I am for all of the friends and family and strangers that were praying for her and us.  It is bringing tears to my eyes right now.  We are so blessed and thankful for all of you!

McKinley's next surgery...

Mommy and McKinley

So it looks like I will start off each blog entry complaining about how long it's been since my last post. But 7 months?!?  Really?!?!  I'm so disappointed in myself!  Where to even begin.  McKinley is walking now! Scratch that, she's running.  Just like her brother.  In fact they are both running and screaching at the top of their lungs as they chase each other around the house cracking each other up. It's really pretty hilarious!  I believe she started walking sometime in April, so it was a bit later than her brother but once she started she acted like she'd been doing it for ever!  She amazes me every day.  They both do.  Their vocabulary is getting so big, every day they have a new word.  When Brooks wants another of something he says "more one".  And when he sees a lot of something he says "many!"  When McKinley wants to ride her bike she says "in a bicycle!" and she loves to sing "twinkle twinkle".  They both can sing their ABC's and count to 10!  I'm sure they'd be accepted into Mensa if we had them tested. :)  (or maybe I'm just a proud mom...)
We have had an amazing summer.  We've visited with family, been on vacations, watched Uncle Ian get married and best of all, spent very little time at the hospital!  McKinley is down to only 1 or 2 clinic visits at Children's per month, compared to about 3 per week when she was first born.  Her last surgery was 11 months ago so we almost know what "normal" life feels like.
Unfortunately she'll be going back to Children's on Wednesday August 22nd for her next surgery.  This is her heart surgery where they will remove her double aortic arch.  I feel more anxious/nervous about this surgery than any of her other surgeries.  I think with all of the others they were just happening so often that I didn't have time to get used to being at home, or having McKinley feeling and doing really great.  This is supposed to be the most minor of all the surgeries she's had with only 1 - 2 nights in the hospital and a speedy recovery but I'm just really dreading it.  McKinley is doing so awesome right now!  She is so happy, healthy, energetic and un-suspecting of what's coming.  I was complaining to Tony about how I didn't want to disrupt this great stage of her life with another surgery and he reminded me that this really is the perfect time to do it. We don't want to wait until she's not feeling well to do a surgery.  But still....
The surgery will be thoroscopic where they'll make 3 tiny incisions under her left arm and hopefully be able to cut the double aortic arch (a form of vascular ring that is not functional so they can just cut it and let it fall down and be absorbed by the body) and that should be it.  There's a chance that they won't be able to reach it thoroscopically and have to go in through the chest but we are desperately praying that won't be the case.  One of the major risks is that the double aortic arch can be near one of the vocal cords so she could have a partially paralyzed voice for a while so we're also praying that doesn't happen. This surgery is not with her normal surgeon (our hero Dr. Healey) which makes me feel a little uneasy but I also know that the surgeon that will be working on her is also amazing and came highly recommended by Dr Healey for this particular type of surgery.
Our prayer is that the surgery is a huge success, that McKinley has as positive of an experience in the hospital as she possibly can, that she comes homes quickly and recovers fast.  In fact we want to go to the zoo on Saturday (wishful thinking maybe?) so I'm hoping she's even healed enough to do that.  Thank you all for being our prayer warriors!  McKinley is truly a miracle baby and I am so thankful that God has chosen to bless us with her and her story.

No Problems

Ok ok, I know I'm about a month late but it was so precious I had to post it! :)

You know what is a great problem to have....no problems!  I was thinking about updating my blog the other day and came to the conclusion that I had nothing to say because we currently were having no problems.  Then I realized, a lot of people blog who don't have problems!  I can blog just because I want to keep people updated, or put my thoughts down on "paper".  It doesn't have to be because something troubling is happening in our lives!
The kids are doing AMAZING!!!!  Brooks is walking.  Scratch that, he is running!  And I love it!  A lot of people told me, cherish the moments when they're not mobile, once they start moving you'll never sit still.  Honestly, I find it completely the opposite.  Now that he's walking he can get what he wants, when he wants to get it and he can entertain himself.  I have so much more free time now that he is mobile!
And McKinley is a crawling machine.  We're still working with a PT to get her to crawl appropriately but regardless, she gets around.  She keeps up with her brother quite nicely.  She walks with assistance which is extremely encouraging.  I can't wait until she can walk; I can see how frustrated she gets now wanting to do everything that her brother does.
Brooks likes to imitate almost anything you say.  Today Nana was teaching him how to say "stab it!" as he was learning to use a fork while eating lunch. :)  He says Nite nite, Milk (Mog), Sissy, Bath, Ball, Kitty, Eat, Yum Yum, Banana (nana),  Mama, Dada, Papa, Nana, Star, Wow, More, Down, Up, Nose and so much more.  I wanted to teach him sign language but I haven't needed to so far because he just tells me what he wants.  I'm really amazed by him!
McKinley is doing so awesome.  We're still trying to figure out her whole "pooping routine".  (I'm clearly going to have to hide this blog from her when she's older, she would be mortified by all of this pooping talk!!!)  She's been a bit uncomfortable lately and has been throwing up a lot and we've found basically that she's full of poop (insert funny joke here :)) So we have her on Mirilax and some other meds to get her bowels active to try to clean her out.  So needless to say, I need to buy stock in diapers.  (Check my next blog for which diapers I will be buying stock in :))  This morning I changed 4 poopy diapers in 1 hour and even got poop in my hair.  Don't ask....  All I know is the kids immediately went down for nap whether they liked it or not and I got right in the shower!
Each day I am able to enjoy and see the blessings in my life more and more.  It's been a challenging year to say the least but these two little miracles bring smiles to my face daily now! :)

Life is...normal???

Our latest family pics by the amazing Amy Walton :)

Hummmmm....so....it doesn't get easier to find time as the kids get older??? :)  Holy Moly, it's been almost 2 months since I last updated my blog!!  I hope most of you have other ways of finding out how the kids are doing because clearly I am not doing a good job of keeping you up to date.  Rest assured though...at some point I WILL update you! :)
So, after the last blog update McKinley's surgery was delayed once again due to a family emergency with her surgeon.  Maybe that's why I stopped updating, I was tired of saying "this is our last ostomy bag!!"  But low and behold, the surgery did finally happen on Sept 23rd.  She was admitted on Sept 22nd, our 10 year wedding anniversary, even though we had childcare lined up so we could go on a 4 day anniversary trip but...who's complaining. :) Someone once told me you'd make many sacrifices for your children....they were right.  But as I was complaining about missing out on our 10 year anniversary trip to a good friend of mine who has endured the worst tradgedy you can ever imagine said, "well, at least you won't have to deal with poop bags anymore, that's a great anniversary gift!"  And that put it all into perspective.  Not celebrating our 10 year wedding anniversary the way we wanted to was the least of our worries.  Our baby girl was a day away from being put back together! :)
So the next day, the 23rd, she had the surgery.  It was a 5 hour surgery and was a huge success.  She woke up the next morning a little sore but all in all in good spirits.  5 days later she was home and pooping like a champ!  Since then we have been dealing with some pretty horrible diaper rash.  Bless people's hearts when they ask me if I have tried A&D or Desatin....this is diaper rash unlike anything you have ever seen.  Which the Dr's have been warning us about for quite some time.  It's actually more of a chemical burn with bleeding and a ton of pain.  We have all kinds of speciality/prescription diaper creams and the "rash/burn" goes from good to bad to worse to ok again.  Over time it will eventually go away, but for now this is the side effect of the surgery.  But aside from some painful diaper changes, McKinley acts like she's been pooping her whole life. :)  She is a happy, healthy, thriving 1 year old and she brings us so much joy!!  We do have the occasional set back with her that reminds us that she's not 100% healthy every once in a while.  Last weekend we had to call 911 (I've never done that before in my life!) and escort paramedics into our home because McKinley had a febrile seizure at 4 in the morning.  After doing a little more research I've learned that they are usually fairly harmless however in the moment it was extremely scary.  It turns out she had another UTI (at least her 5th this year, I've lost count) which can cause a fever, and a rapid rise or loss in body temp is what can cause a febrile seizure.  Unfortunatly McKinley is now in a high risk group for having more febrile seizures so we're seeing her surgeon next week to see how we can hopefully prevent future UTI's and in turn prevent future seizures.  Thankfully we had a good friend Matt Abers show up to our house that morning, he was the paramedic/firefighter on call.  I have never been so glad to see a friends face in my lifetime!!  If you ever have an emergency, make sure Matt comes to your rescue.  He's a godsend. :) 
McKinley is continuing to see a few different Physical and Occupational Therapists for her crawling/walking.  She's recently started crawling and although it has more of an appearance of a frog crawl than a human crawl, she's still getting around which is exciting. :)  The therapists would like to see her crawl a little more "normal" but we're proud of her nonetheless.  She still doesn't like to bear weight on her feet/legs but she is making baby steps with that and doing it sometimes as opposed to never.  And what's really exciting is that she's started to drink a little out of a sippy cup!  It's not really measureable but for a girl that we were beginning to think would never drink ,this is very exciting!
On Friday McKinley went to see the orthopedic surgeon and continued to show us how miraculous she is.  The nurse that led us into the room said "I understand we're here to check up on McKinley's scoliosis?"  When the surgeon came in he reviewed her x-rays from that day and said "well, it appears that McKinley does not have scoliosis like we had originally thought, and her hips look really good considering the PT's concern for her low muscle tone".  This was all amazing news and of course not surprising.  What else would we expect from our miracle McKinley?!?
And never to be forgotten there is Mr Brooks.  We call him Bubba which he loves.  It's one of his favorite words.  Along with Papa, Nana, Mama, Dada, Kitty, Dog, Bye Bye, No, and Dooooo it! :)  He's quite verbal for a 1 year old!  He's almost walking on his own, getting braver each day with going from couch to couch.  He could do it if he only realized he could.  He just started crawling and has recently learned to go up and down the one step in our rambler.  He's gone from my high maintenance cry baby to a total sweetheart Mama's boy.  He is so funny and makes us smile every day.
I always knew God had something special in store for us but I never imagined the story our life would become.  Two miracle babies that continue to amaze us each day.  Thank you for praying for us!  We cherish each and every prayer and will continue to as these miracle babies continue to grow and thrive!! :)

It's finally here....

We're 1!!!!

On Tuesday (the 13th) McKinley will be admitted for her ileostomy takedown surgery on the 14th!  As I'm typing this I am realizing that I only have 2 more days dealing with ileostomy/colostomy bags....hopefully for the rest of her life!!!  And the one I put on this morning was a really good one so I'm hoping it will last until her surgery :)  After her most recent scoping Dr Healey decided that we should just go ahead with the surgery and pray that the narrowing of her intestine will widen as stool passes through.  We are very, very hopeful that the surgery will be a success and she will not have a blockage.
I am more anxious than normal about this surgery because as McKinley gets older she gets more active and more aware of what is going on around her.  I'm sad that she is going to have to go through the pain of another surgery but I'm so glad that we are rounding the corner and can see the light at the end of the tunnel where surgeries won't be every few months for us!  Hopefully this will be the last surgery in 2011, and we are only anticipating one surgery in 2012 (to remove her vascular ring).  Please pray that this surgery is a success and that she will be able to pass stool through just like the rest of us!! :)
On a more fun note, Brooks and McKinley just turned 1 on Thursday!!!  We had a birthday party for them on Saturday and went to the Puallup fair today so we've had a very fun weekend.  The weather has been beautiful and the kids have had a blast.  They are getting to be such a fun age, I even find myself enjoying them at times!!! :)
I will do my best to post an update when McKinley is out of surgery!  Thank you for your prayers!

A bit of a setback...

McKinley watching Auntie Erin at her bike race last week :)

Last week McKinley had a procedure called a contrast enema done. They basically ran a bunch of barium (liquid you can see on an xray) through her bowels and intestines to see if there were any blockages and make sure she would be ready for her surgery on the 24th.  During that procedure they saw what looked like a narrowing of the lower intestine but were very hopeful that it wasn't as serious as it looked.  So yesterday McKinley had a last minute procedure where they had to put her under anesthesia and scope her rectum/lower intestines to get a better look at what might be going on.  And what they found was what we prayed they wouldn't find.  The scar tissue from her last surgery is causing a narrowing of her lower intestine.  If she were to need to pass something through there it most likely would get stuck and cause a blockage.  So Dr Healey determined that her surgery next week will need to be postponed and we are going to try to manually dilate that area in the hopes that we can reschedule the surgery in 2 - 4 weeks.  We will be meeting with Dr Healey on Tuesday so he can show us exactly what he needs for us to do, but it doesn't sound fun at all.  Not for us, and especially not for McKinley.  If our dilation's don't work then she will require a surgery to open up this area before her surgery to take down her ileostomy.  That would mean we're looking at another 2-3 months with the bags!  Nooooo!!!!  So, that is where we are for now.  McKinley on the other hand is happy as a clam.  She came out of her anesthesia grabbing for all the nurses glasses and IV lines, cracking everyone up.  I was told to expect 2-4 hrs in the recovery room and they let us go in less than a half an hour.  That girl is such a trooper!  Hopefully we will know more soon about what our next steps are and I will keep you posted.

Last Surgery of 2011

Getting ready to go swimming at Grandma's, chewing on Auntie Erin's watch :)

On August 23rd McKinley will go in for what had better be her last surgery of 2011!!!  This is the surgery that will be the final step bringing together all the surgeries of the past.  They are hooking up her rectum and we are praying that it works!!  She will be admitted on the 23rd for a bowel prep, just like last time, and her surgery will be on the 24th.  It is supposed to be a 2-4hr surgery, a breeze compared to the last one!  They will take down her ileostomy and we will see our beautiful baby girl without a bag attached to her stomach for the first time since the day she was born!  I cannot tell you how excited I am.  The bags and I are having a hate-hate relationship right now.  I cannot get them to stay on for the life of me so I end up changing her bags 2 or 3 times a day.  They should be able to stay on for up to 3 days, but at the very least 24 hours!  It's a huge poopy mess and usually happens the minute we wake up so it really starts my day off stressful.  And as she gets older she moves more, grabs her bag, gets poop all over everything....ok, no more details, needless to say it's a huge mess and quite frustrating!  I will admit that Tony is much better with getting the bags to stay on than I am, but of course they never come off when he's home!  It's always when I'm here by myself with a hungry or sleepy Brooks screaming in the background.  See, I told you, the bags hate me! :) Anyway, I am counting down the days and repeating to myself only 16 more days, only 15 more days, only 14 more days....
The other awesome part is that once she comes home from the hospital (it's supposed to be about a 5 day stay) she should be done with the hospital for quite some time!  We are hoping to make it through the fall and winter with only seeing Children's hospital for clinic visits.  She will have to have her vascular ring (heart condition) fixed in early 2012, but even having 6 months between hospital stays will be a huge treat for us.  We are so eager to have McKinley home for a stretch of time where she can begin to grow and develop consistently.  She has just recently started trying to sit on her own, and she's eating 2 jars of food a day now!  She is making such amazing progress.  We are so proud of her!
And then there is sweet baby boy Brooks.  He is so sensitive.  Always hugging and cuddling, a total mommy's boy.  He still says "oh wow" & "woah!" and his latest word is "uh-oh" (which actually sounds like "oooh-oooh)  I think he's going to start crawling or walking any day now.  He loves to walk with help, and he's starting to figure out that he can move by rolling and wiggling.  I'm not in a huge hurry though, I have a lot of baby proofing around the house to do!
As always we thank you so much for your prayers.  McKinley's surgeries have gone better than expected so far so we are praying for the same result this time.  Thank you for keeping up with us and her progress and for keeping her in your prayers!!