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....