Oso Landslide - Our Mission to Help Support a Co-Worker's Family

March 22nd, our Reece Trucking & Excavating and Northwest Construction Services Family was hit with an enormous loss.  The Oso landslide claimed one of our own, 21yr old Alan Bejvl, his fiance Delaney Webb, and her Grandparents, Thom and Marcy Satterlee.  

Many of our employees grew up and live in Darrington, Oso, and Arlington.  Many of them have been working in the rescue efforts.  Many of them lost and/or are still missing friends, family, and loved ones.

About Alan

Please help us in trying to alleviate any of the extra burden to our loved one's families brought on by this unimaginable devastation.

Jenn and I have personally designed and purchased 500 "I am Oso" T-shirts.  We are selling shirts for $15/ea.  100% of the proceeds and donations will go to directly care for the victims and their families.  To purchase or donate, please click the "donate" button below, and email us with the Quantity and Sizes.  (For shipped orders please include a $5.00 shipping fee.  For orders of 5 or more...shipping is free.)

Checks can be mailed to: 24027 47th Ave SE, Woodinville, WA 98072.  Cash will be accepted in person

Please confirm orders with Tony, Northwest1@Live.com or Jenn, JennMiller@KW.com

Please Give...and Give BIG!  This is OUR Community!

http://dancingintheminefields.wordpress.com/2014/03/25/im-not-oso-but-i-know-who-is/

And...we're back! :(

Dr Miller

Well, it seems to be that the only time I have to update my blog is when I am sitting at Seattle Children's Hospital watching my precious baby girl sleep.  Yep, we're back... in the hospital again.  I really should know by now that when we make a "quick trip" to the ER I might as well pack a toothbrush and pair of pajamas just in case.
We had such a fun weekend last weekend.  We went to stay at our good friends house with two other families for the 4th of July.  There were 6 adults and 7 kids.  We were outnumbered and we had so much fun.  On our way home on Saturday we stopped by Lake Kachees and threw rocks in the water for a few hours.  It was such a great weekend.
Then at 3am on Sunday morning McKinley woke up uncomfortable.  Her pain got increasingly worse and at 4:30am she started throwing up.  She had a fever and was complaining of severe abdominal pain. We called our pediatrician and he recommended we take her to the ER.  So, off we went. After 5hrs in the ER they diagnosed her with a UTI and sent her home with some antibiotics.  But the pain wouldn't go away.  By 7pm that night she was in excruciating pain and had a 106.3 temp.  Talk about being freaked out! We stripped her down, jumped in the car and rushed to the hospital, getting puked on the whole way there. The ER Dr's sprung into action once they saw us and that began some of the most difficult days we've seen McKinley have.  The Dr's decided that she had a kidney infection which for McKinley, with only having one kidney and the one she does have is multicystic dysplastic, this was really not good.  I was doing ok until I heard a Dr describe her as critically ill and decided to have the Risk nurse from the ICU check on her for 3 nights straight.  That might have been the beginning of my breaking point.  For days her fever would spike to 105 and we would pack her in ice.  She was on a constant regime of Tylenol and Oxycodone to try to control her fevers and her pain.  Her IV's wouldn't stay in but her IV antibiotics were crucial so she would get poked over and over again for hours, and for some reason always at like, 2 in the morning.  Her veins are all pretty much worthless right now, they've all been poked too much.
Being in the hospital with an almost 3 year old is way different from being in the hospital with a 6 month old, or even a 2 year old.  She is so aware of what is going on around her. She is very cautious around the Dr's, or anyone wearing blue gloves and tends to not tell them how she really feels because she's afraid they're going to hurt her if she does.  She communicates so well how she is feeling and what hurts, and it breaks your heart when you can't fix it.
We were admitted Sunday night (Monday morning) and not until today (Friday) have we begun to see the light at the end of the tunnel.  She hasn't had a fever for 36 hours and her pain seems to be subsiding.
What is still unknown is how much damage has this done to her kidney. How likely is this to happen again?  Is this the beginning of her kidney failing and are we going to be looking at a transplant sooner than we had hoped?  All of these questions scare me, and probably can't totally be answered by the Dr's.  We have had such an incredible past year, to the point where I had almost forgotten McKinley was sick at all.  I don't like being reminded that she is sick.
As always our INCREDIBLE friends and family have stepped up to care for us while we have unexpectedly checked into hotel Children's.  Katie has organized meals, Jenn had brought us food and shampoo (this was a crucial need for me by day 4!), Alison & Matt brought the most awesome goody bag of treats, Kristin and Sue have brought us amazing meals, Cerissa & Beau, Jenn & Stephen, Mike & Sue, Nana & Papa, Heather and Tony's coworkers have sent flowers, stuffed animals, books, tutus and the most incredibly awesome balloons we have ever seen!  McKinley's room has gone from being depressing and decorated with IV poles and monitors to being overwhelmed with color and cheer.  Every single gift she has received has brightened her mood and brought a smile to her face, which is priceless to her mommy and daddy.
As of this morning the Dr's are talking about discharging her tomorrow!  If she can keep her temp down and her vitals good then we should be out of here, just one day shy of a week!  She most likely will come home on a permanent antibiotic and have some more testing done to see if/what we can do to prevent this from happening again in the future.  For her health and all of our sanity we cannot have this happen again!
As always, thank you all for your kind words on Facebook, by text message or voice mail and above all else, your prayers!  McKinley is once again astounding us all by bouncing back from something that was very, very scary.  I truly believe a lot of the credit is due to all of you, who stop everything to care for her and her family, and pray!  That and her incredible strong will and feisty spirit...

Potty training a bowel management baby, and my opinion on diapers

Ugh

Yep, I just posted that picture.  I just admitted to the world that that is what my bathroom looks like right now.  What we are going through in our house right now is called potty training, potty training to the 100th degree.  Potty training twins, one that is a boy who is terrified of pooping (nuff said) and one that is an adorable little girl who may or may not control her bowel function.  Meaning, we sit on the potty for hours (literally) multiple times a day.  Today it's been two, 1 1/2 hour sessions, and it's only 2pm.  So we have books, milk, snacks, iphones, stuffed animals, and whatever else will entertain a 2 year old while she sits, for hours on end, on the potty.  I'm really thinking I need a bathroom remodel with a more serene decor...but I'll have to discuss that with Tony later.
So first, an update on McKinley.  Her kidney is doing great.  We had a scare a couple of months ago where her levels jumped drastically, but little did we know that she was coming down with that terrible stomach bug that everyone has had, plus a small growth spurt and was probably a little dehydrated so it's now more under control.  Her levels are deteriorating a little bit, but the Dr's are reminding me that that will continue to happen as she grows.  As she grows, her kidney will likely not be able to keep up meaning her levels will deteriorate.  However, that doesn't stop me from praying for a miracle!
What we're struggling with now is TERRIBLE diaper rash.  The worst I've ever seen.  Multiple open, bloody wounds, need I say more?  She can't sit, walk, sleep...it's not a good situation.  We're desperately trying to get her bowl movements under control so that she can stool once per day as opposed to all day long.  Literally, all day long. (Like how I didn't say poop in that last sentence?  I'm trying to be more "adult" sounding :))  We just started a new medication regimen that seems to be making a bit of a difference so we're hoping that will help get it all under control.  Fingers are crossed and prayers are appreciated!
That brings me to my next topic.  Diapers.  Whether you care or not, here is MY opinion. :)  For newborns, Pampers or Luv's.  Which is funny because one is expensive and one is pretty cheap.  But from my experience, they're pretty much the same.  Both are soft but not necessarily very absorbent.  So they are comfy for tiny babies that you change often or that are going to blow out of any diaper no matter what it is.  But by the time your child is 3-6 months in my opinion, it's Huggies all the way!  The diapers are a little stiffer but those suckers hold in even the worst of over watered kidney diseased babies pees!  I haven't yet found anything better.  Maybe Kirkland Signature diapers from Costco, they're pretty comparable.  Target's brand Up and Up diapers aren't too bad either.  Don't buy the Babies R Us brand.  They're excitingly cheap, but worthless.  For overnight diapers, no surprise here, Huggies Overnights!  They don't keep McKinley dry all night; but they definitely keep her dryer than any other overnight diaper we've tried.  And for what it's worth, the Carter's crib sheets that we bought when she was born have lasted through daily washes (again, not exaggerating, probably over 300 washes each since we have a couple sets).  So those were a great purchase!  And if you have a baby with a feeding tube, or one that you don't want to get out of their crib (not totally sure this works for that but I've heard it from other parent's and it kind of makes sense), have them sleep in the Halo Sleep Sacks.  McKinley is just now growing out of the XL sack so I just ordered the ones that have feet sewn into them.  We'll see how they work.  For the feeding tube it's great because they zip from top to bottom so you can run the tube through the bottom so it doesn't twist and rub as much.  For not getting out of the crib, they can't lift their leg and swing it over the top so it seems like it would work.  McKinley's still in her crib at least and she's pretty resourceful :)
So there's my opinion on diapers, crib sheets and sleep wear.  I'm pretty opinionated so that felt good.  And I'm totally open to any one's suggestions for diaper rash care, nighttime absorbency, feeding tube management...I sometimes feel like I've tried it all but I still find new things out every once and a while, and I'll try anything!  Comment on this blog if you have an ideas/suggestion.  Until next time....

I will never forget that she IS, they ARE, an absolute miracle

"Eskimo kisses"

I love blogs.  They are an online diary, that you can share with people.  With mine I've been able to go back and read what the past 9 years has been like for us.  Especially the last 2-3 years.  With how crazy life gets it's easy to forget where we were, and take for granted what we have been through.
I'm not sure if it's just because I'm getting older and meeting and getting to know new people, or if it's this new facebook world; but I have been praying for SO many babies lately.  I have been praying that so many babies would be healed, and come home to their families and lead "normal", happy, wonderful lives.  And I feel like my prayers are going unanswered.  Child after child is going home to be with Jesus.  Don't get me wrong, I know they're in a wonderful place where there is no more pain, and we will see them one day again.  They are ok, it's their parents that I am heartbroken for.  I truly cannot imagine the pain of losing a child.  I've been faced a few times with the possibility and that is almost more than I can stand.  I hate standing by, and watching these families learn how to "deal with" and move on with life after losing a child.  It's unimaginable.  It hurts to even think about.  I said out loud to a friend the other day "I don't understand why there aren't any prayers being answered for these babies?  Where are the miracles that I've been praying for??"  And like a ton of bricks it hit me.  Her name is McKinley.  McKinley should not have survived.  I never gave it the consideration that the Dr's asked me to, but she was not supposed to make it past birth.  And she certainly wasn't supposed to still be surviving on her one, sick kidney.  She was supposed to have a massive heart defect.  She IS a miracle. What I struggle with is why me?  I know it sounds silly because I am beyond thankful, but why do I get to experience such joy when other mothers (parents) don't?  I'm not even sure what the purpose of this blog is.  But I guess to let you know that if you've been praying for lots of babies like I have and feel a little hopeless, remember THIS baby that you prayed for, and remember that miracles do happen.  My little miracle is waking up from nap right now..... :)

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!!

An amazing girl...

I cannot imagine the pain a family feels when they lose a child. Just thinking of losing either one of my children hurts me to the core, it's almost unbearable just to THINK about. Unfortunately I've seen one of my dear friends live through this pain. It is a daily, no, minute to minute battle for her to go on without her precious son. And now, another family at my church is living this nightmare. On Saturday, they had to take their beautiful daughter off of life support after she was critically injured in last weeks car accident on I-90. There is nothing that can make the pain of losing their daughter more bearable, but her story is one that needs to be shared. Rachel Beckwith had a wish.  And that wish was to provide people in developing countries with clean water. For her 9th birthday she asked people to donate money to an organization called charity water, rather than giving her gifts. Her goal was to raise $300, and she fell just short by raising $220. Since she has gone to be with Jesus her story has spread and people have donated to this cause in her honor. At last check, she has likely saved over 28,000 lives by raising almost $575,000. It is truly inspiring. I believe that Rachel is smiling from heaven to see all of these people, people she doesn't even know, supporting her wish. If you haven't already heard this story, please check it out. And if you can, donate to her wish, or to her family. But most importantly, pray for them. It's all we can do & hope that they will feel God's arms wrapped around them for the rest of what is going to be a very difficult life without their beautiful daughter.
Rachel's Charity Water:
http://mycharitywater.org/p/campaign?campaign_id=16396
Donate to her family here:
http://bobnw.org/

Did I mention we're home? :)

McKinley in her beautiful helmet decorated by mom with the help of her good friend Kendra Farmer :)

The days surrounding coming home from the hospital are always so crazy that I'm often a little late letting people know. :)  We were discharged one week ago today and could not have been happier to all be home as a family again!  The look on Brooks and McKinley's faces when they see each other for the first time gets more priceless each time the older they get.
McKinley has been doing amazingly well. I keep saying that if she only knew what she had been through, she'd be in a lot more pain!  I think I hurt more than she does just knowing what all she has had done. :)  We have a follow up visit with the urologist and nephrology on Tuesday, and then a follow up with surgery on Thursday, where they will hopefully tell us when her ileostomy take down will be.  Her incisions are healing, and although they are very itchy and she scratches them a lot, they are healing beautifully, and we have steered clear of any infection.  Our latest problem is that we can't seem to keep her ostomy bags on.  This new ostomy site does not work as well as the old site for bag "stickage" so it's quite messy, and very frustrating.  I'm counting down the days until we may not need to deal with ostomy bags any more!!
The other newest thing that McKinley has had to undergo is that she now has a helmet strapped to her head 23 1/2 hours a day.  She looks like a motocross racer, or a hardcore rollerblader or something.  She needs the helmet because her head is severely enough flat on one side that it won't correct itself without the help of the helmet.  In classic McKinley fashion, she seems to be adjusting to it quite well.  The biggest annoyance so far is that she has a hard time falling asleep.  I can only assume it's quite uncomfortable to sleep in a helmet!  Other than that, she hasn't missed a beat.  She's her happy, smiley self and I can tell that she is sooo glad to be home.  And we are so glad to have her here!

To blog or to sleep...

McKinley going for a stroller ride around the hospital!

....that is the question. I'm sorry it's taking me so many days in between blog updates. I've been choosing sleeping over blogging since it seems that the longest stretch of sleep I'm able to catch is about 2 to 3 hours at a time lately. Hopefully you don't run into me in the next few days, I'm looking a bit like a scary zombie! But thank you so much for patiently waiting and for wanting to be updated in the first place! But enough about me :)  McKinley is doing great!  Unfortunately she didn't go home yesterday like we had hoped. Dr Healey told us to not expect to go home before Monday, so I'm hoping that Monday is the day.  Any longer and we will have been here for over 2 weeks.  The reason they want us to stay longer is because they are monitoring McKinley very closely to be sure that she can maintain her goal feeds and fluid level requirements.  So far she's been doing really good.  She had her drains and catheters taken out on Monday and we're hoping that her IV's might come out tomorrow.  We tried to use her new GTube on Monday night and that was too soon for her. It was extremely painful and she sure let us know it! So, we might give it another try tomorrow, we'll see. We had to give her some extra doses of her narcotics after that incident but since then she's been able to control her pain on just Tylenol and occasional benadryl when her stitches itch.  In the mean time, we are starting to be able to hold her more, play more and even go on stroller rides around the hospital.  She seems happiest when she can get out of her room.
Today she was fitted for a helmet.  She's going to need to wear the helmet until she's about 13 months old. We're not really looking forward to that. I pray that she adjusts to it well and after a short time doesn't even notice it's on her head!
So many people have come in to talk to us about whether or not we have people supporting us at home.  Social workers, Dr's, nurses, everyone wants to make sure we have a support system. Its so great for me to be able to tell them what an immense support system we have. We are SO blessed! This week alone we have had meals from Jen, Katie, Michelle, Claire, Kendra, Jenn, Apryl, Kristin... childcare help with Brooks from Teresa, Paula, Linda... Social support from so many including Pat and Linz.... Thank you to everyone!  I know there's people I haven't mentioned, I'm so sorry, my brain is functioning at about 1/2 capacity right now. :) You are what makes this possible for us. Your prayers, your support, we love you all very much!  I hope to be updating you very soon that McKinley is home again!

Recovery

McKinley right after being wheeled back into the room after her 10 hour surgery

We finally have our precious baby girl back in our arms again. Well, not exactly in our arms, we can't hold her yet, but at least she's near our arms. Yesterday was a LONG day. We walked her to the OR around 8am, handed her to the anaesthesiologist at 8:40am and saw her again around 10pm. I think she was actually in surgery for just over 10 hours. That's a long time. Surprisingly, we were very calm. I'm sure it was because we had so many people praying for her and us, that we could feel God's arms around us, and we were calm. We went to lunch, went shopping, watched You Tube videos and had a nice day together. The hard part came when she was wheeled back into our room. I was prepared for what I would see, and all in all she looked pretty good, but it's never easy for a mother to see her child in that state. McKinley was heavily sedated with two IV's, one in her hand and one in her foot, an NG tube in and 3 drains including a catheter.  She was pale, and would occasionally wake up with a hoarse cry and big fat tears would roll down her face. I found myself feeling light headed and needing to sit down. Not because I was queasy from anything I saw, but because seeing my baby girl in such pain simply made me want to throw up.  I've felt that way a few times today but I'm slowly getting more used to it. I'm thankful that they're able to keep her so sedated on Dilated (sp?), Valium (sp?), and now Bendryl.  The meds makes her so itchy that she's literally given herself a black eye! The plan was for me to spend the night with her by myself last night but thankfully Tony noticed real quick that that may have been a bit much for me and decided to stay and keep me company. I also thought I would go home today and take a shower and see Brooks, but I can't pull myself away from her. I want to be here the few times that she decides to open her eyes so that she'll see her mommy.  I know she's scared.  She doesn't know what's going on or why she hurts so badly.  I'm sure all she wants is to be held, or to play with her taggy blanket. But she can't, not just yet, she has a lot of healing to do.
Having said all that, it appears that her surgeries are going to be a total success! I have never witnessed a more powerful testament to the power of prayer than with our little girl. I'm not sure why God has decided to say yes to our prayers for the time being, but I am thankful that he has. The surgeons expected to find a complex set of issues when they opened McKinley up yesterday. In a nutshell, they found almost everything the way it was supposed to be, just not hooked up properly.  So rather than needing to reconstruct a bunch of stuff, they mostly just needed to hook it up. All of their concerns with future incontinence and poor bowel function are pretty much out the window now.  There's a very good chance that after this surgery McKinley's lower half could function like a normal child's! And that is something that we will certainly pray for.
The only complication they ran into was that there was not enough of her lower bowel to pull through to her rectum and divert to a new colostomy.  So they had to put in an ileostomy, which is higher up in the intestine. For the average person this shouldn't be a problem, but because McKinley only has 1 kidney, and the one she has is sick, she needs to maintain a much higher fluid intake than the average person. It's very possible that she will not be able to maintain the fluid levels that are needed to keep her kidney functioning in which case she may need to stay in the hospital longer on IV fluids, come home with a PICC line and IV fluids or worse case scenario, have the ileostomy taken down and start using her rectum before it's fully healed.  Which could open her up to infection and could be very painful. So we are praying that she can maintain her fluid levels and let her rectum heal for a couple of months before she needs to use it.
Right now I am praying for a speedier than normal recovery. McKinley is way tougher than me so I don't know if I can handle seeing her like this for much longer!!  I know that they're going to have to back off the pain meds at some point, and she's going to have to become more awake and aware of what's going on, and I'm nervous for when that time comes.  I just hope that God lays his healing hands on her and continues the miracles that he's been working on her and heals her quickly!
The amount of people that are praying for her is truly overwhelming. Thank you to all of you, God hears your prayers and he is answering them so please keep it up!!  Love from the Miller Family to you....

Waiting....

McKinley yesterday in her hospital bed, happy no matter what the circumstance...

So the day has finally come. We said goodbye to McKinley around 8:30 this morning, and at this point (4pm) we are hoping the surgery is more than halfway over.  I've been able to speak with her nurse 3 times now and each time she has told me how great McKinley is doing.  They have taken down her colostomy and are now working on building her rectum. One big question they had was whether her muscles would function well enough to be able to create a working rectum. Dr Healey said he would test the muscles with an electronic pulse before starting the surgery and at last update he thought the muscles worked great!  This is such an answer to prayer!!
We've been prepared that McKinley's recovery could be very difficult. They are hoping that she won't have to go to the ICU tonight but it will all depend on how well she comes out of her anesthesia, and whether she'll require her breathing tube for longer term or not. The longer the surgery, the harder her recovery will be.  So far, we're going on 6 hours.
I will do my very best to keep you updated after she gets out of surgery, but I'm sure it will depend on how she's doing and whether or not I'll be able to leave her side.  I miss her beautiful, smiling face so much and hope that I will see it again very soon.
I am overwhelmed at the amount of people that are praying for McKinley.  People that we know, and people that we don't know.  She is one lucky girl.  And we are some very blessed parents.

McKinley's big surgery

7 months old

I can hardly believe the time has come for McKinley's big reconstructive surgery.  I feel like we've been talking about this forever and now, it's a week away.  On Tuesday May 31st McKinley will be admitted to Children's hospital at 8am and they will prep her bowels all day for the big surgery on June 1st.  When the nurse called yesterday to confirm the surgery I asked her what time it would start on Wednesday.  She said, "well, McKinley's the only one on the schedule since she's taking up the whole day!!"  That was just another reminder about what a big deal surgery this will be.  2 amazing surgeons will be working on her for 8-10hrs, most likely starting at 8:30am, Wednesday June 1st.  We will probably hand her to the anesthesiologist at least an hour before that.  They will be hooking up her rectum, taking down her colostomy, putting up a new colostomy, relocating the site of her G tube, and urology will be working on a lot of plumbing stuff as well.
I am nervous.  Nervous for how the surgery will go, whether or not it will be successful, nervous about how that long day of waiting will go for us, nervous for her recovery.....just all over nervous.  And I already feel so bad for her.  I can only imagine that the recovery from this will not be a walk in the park, and it's so hard for me to see this happy, healthy (meaning no cold for the first time in months!) little girl who's just starting to learn to roll, and maybe even try to crawl, and she has no idea what's about to hit her in exactly 1 week. 
On the other hand, she is such a trooper.  She has shown us over and over again over these past few months how tough she really is.  That little girl has been through SO much, and she still smiles for us every day.  She hardly cries when they cath her to check for a UTI or draw her blood.  The other day I yanked out her GJ tube (on accident of course) and she cried for about 30 seconds and then was over it.  I on the other hand cried for what seemed like forever as I stared at the gaping whole in her stomach and waited for Tony to rush home from work and rush her to the emergency room. 5 hours later she was home with a smile on her face and a butterfly beanie baby in her hands. I however, am still traumatized by it. I am so amazed and inspired by this little girl.
I know that God will have her in his arms all day on Wednesday.  I also know that he will be guiding the surgeons hands.  Whatever is meant to be will be, and McKinley will have a beautiful life no matter what the outcome.  But having said that, if you could add her to your prayer list we would appreciate it so much.  I would like to pray that the surgery goes without a hitch, that it's successful and that her recovery will be smooth.  McKinley says thank you, and we'll keep you posted on how it goes.... :)

Reflections

Truly Blessed

I can't believe it took me this long to figure it out but on Saturday night it hit me.  I now understand why we had to go through 6 1/2 years of infertility, failed IVF attempts and a lot of heartache over the past few years.  God was preparing us for what we are now experiencing!  I couldn't see it then, and I didn't even understand it immediately after the babies were born, but now it is clear as day. And God was amazingly smart about the way he went about it. :)
All my life I have "complained" about not having a real testimony.  I always found it hard to witness to people when I had nothing that exciting in my life to prove that God was real.  I mean, I was pretty much born a Christian, raised in the church, went to private school blah blah blah. Nothing very interesting. But oh my goodness do I have a testimony now!  Let's lay it all out.
Tony and I were married for 9 years before we had Brooks and McKinley.  For 6 1/2 years we desperately tried to become pregnant.  Along the way I developed a passion for helping other women with similar experiences through this difficult time. I led growth groups and friendships were formed because of our struggle. When these babies arrived it was like getting hit in the face with a TON of bricks.  I had no idea what I was getting myself into.  I mean, I've watched numerous friends have babies, and I've even been super involved in many of their lives.  I thought I knew exactly what to expect when it came to having a baby. I remember saying, "I won't mind getting up in the middle of the night with my baby because all day long I'll be able to lounge around the house in my pj's and catch up on the rest that I'll need". HA! I can't even say that without cringing now. After bringing home newborn, preemie twins, and 1 with medical complications I seriously wondered if we had made a mistake. The only thing that kept me going was remembering how badly I wanted these babies, and how hard we tried to have them. Not only were these babies hard on me personally, they were hard on our marriage. I don't know what would have happened if Tony and I hadn't had the 9 year foundation of our marriage. We really understood each other, and loved each other through this. In the 6 1/2 years that we were trying to get pregnant we both switched jobs (I switched my entire career) we bought 3 homes, went on tons of vacations, found a church family and built amazing, amazing, amazing friendships. If we'd had kids when we first started trying I would guess that most of that would never have happened.
And now I have a testimony! Our little McKinley is an absolute miracle! The Dr's didn't think she was going to survive after birth, let alone thrive like she has! Her heart is absolutely unexplainable (unless you believe in miracles of course!) Her interrupted aortic arch and hole in her heart were clear as day on the EKG, less than a month before she was born. That type of heart defect doesn't just fix itself in utero.  But low and behold, it was non existent when she was born. McKinley continues to amaze us each day as she continues to thrive and develop. She's taken us on a roller coaster in her 7 months of life, in and out of the hospital, (did I mention we were there again this past weekend?). But through it all we have managed to stay positive and just "roll with it". And as much as I would like to take credit for that, it's not me! I can do all things through Christ who strengthens me. It is so true, and I need to give credit where credit is due.
Thank you Lord for this past 9 years of marriage, 6 1/2 years of infertility and 7 month of CRAZINESS! We are SO blessed.  I know we're only at the beginning of this roller coaster, and I can't wait to see what you have in store for us next. :)

Home again Home again

Brooks eating his first solids!

Sorry for the late notice but...we're out of the hospital and home again!  After a surprise 2 1/2 weeks at Children's, McKinley was released on March 9th.  We brought her home with a GJ tube, unable to feed her by mouth and still with symptoms of RSV, but at least we had her home!  The first few days were rough with occasional throwing up still, and still having a difficult time breathing, but little by little she started to feel better.  And for now, we have our happy, vibrant McKinley back!  In a nut shell it was determined that her Gtube was likely placed in the wrong spot, and will need to be replaced.  So in the mean time she still has to be fed by her GJ tube on a slow drip, 20 hours a day. One of the many frustrating things about this experience is that McKinley has decided that she will no longer eat by mouth, not at all.  I'm sure this is a result of not being fed by mouth for over a month. We will be meeting with physical therapists next week that will hopefully help her learn to eat again.  In the mean time, she watches her brother begin to eat solids! That has been quite fun.  Brooks wasn't sure about it at first, but has now decided that he can't get enough. In fact, I've had to google what to do if your child won't stop eating! So far he's had rice cereal, oatmeal, chicken, turkey, squash, sweet potatoes, pears and apples.  I think the pears are his favorite. :)  He has grown into a very sturdy boy that is either insanely happy, or insanely fussy.  He certainly is extreme!
We are finally getting the hang of this parenting thing and even maybe having some fun with it?? We are anxious to get past McKinley's next big surgery which will most likely be on June 1st.  We are praying that she stays healthy until then because if she doesn't the surgery may be postponed.  She has one of the best surgeons and urologists at Children's working on her and since it's an all day surgery, it's very hard to find a day that they both have totally open.  So having the surgery postponed could be a real pain.
So for now, we are home as a family, enjoying each other and watching the kids change by the hour it seems. I have finally had enough down time lately to be able to admire these little miracles that we waited so long for. We are truly so blessed!!

The problem has been found....hopefully!

McKinley, Brooks and Me not long before our stay at Children's

So...we're still here. 17 days in the hospital and counting. 14 of those days came and went with McKinley only getting worse, not better, and us not getting any answers as to why.  Then came day 15, Friday night around 8pm we were told that McKinley would be going into emergency surgery.  During a routine procedure to place an ND tube they hit resistance, and couldn't figure out why.  After doing an ultrasound it appeared that she had duodenal intussusception, a very rare problem that had actually never been seen by the Dr's at this Children's Hospital. Thankfully, once they went in with a scope they realized that in fact that is not what it was, her problem was that her pyloric valve was incredibly inflamed.  So inflamed that it was completely blocking her stomach. The reason it was inflamed was because the balloon at the end of her G-tube was inflated inside of the pyloric valve, when it really is only supposed to be inflated inside of her stomach.  We're unsure of how long it has been that way but our suspicion is that it has been that way since January 5th, when she had the G-tube placed.
So, during the procedure they decided to place a G-J tube which is a feeding tube that bypasses the stomach. Today they started feeding her through that tube and so far she is tolerating her feeds.  They are increasing the feeds every 6 hours and so far so good.  They are still draining her stomach so she is not throwing up as much. At this point we are just waiting for the swelling to go down, I don't think there is much that can be done to expedite that process.  Her breathing is the main concern at the moment.  She's having to be suctioned every few hours because she can't breathe well if she's not suctioned.  It's probably a combination of her RSV and being intubated for her procedure on Friday. We're not sure when to expect that will get better either.
So...now we wait.  The question is, will we wait in the hospital or at home? It looks like they are leaning towards sending us home. We would love to be back together again as a family, but not before the time is right. We also want to be sure that her RSV is gone so that Brooks doesn't get it! We are praying for the Dr's good judgement and McKinley's speedy recovery so that we can get back to "normal" life...whatever that may be.... ;)