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.