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!! :)