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.... ;)

And...we're still here

Don't ask me how she does it, but she manages to smile even through the puking!

Wow. It's been 11 days since we "stopped by" the ER. And we're still here. McKinley isn't really showing many signs of getting better and the Dr's are still baffled. The CDiff does not seem to be the cause of her sickness as she has continued to throw up constantly regardless of the antibiotics she's been on for the infection. And now the latest news is that she has RSV. She is soooo congested, it sounds like the worst cold I've ever heard! She's having a harder than normal time breathing due to the congestion, but has not needed oxygen so far. The Dr's aren't sure if she contracted the RSV at the hospital or if she had it before she got here. They're currently going with the theory that she had the RSV prior to coming to the hospital and that the virus caused an ileus. An ileus is when the bowel decides to shut down and not function. This would explain why she has very little stool output, no gas output, distention in her belly, leakage around her g-tube and throwing up. Unless they are suctioning her stomach through an NG tube, and draining her g-tube, she throws up large quantities of mucus. It's basically like she's pressurized and she'll explode if we don't get the stuff out another way. So, for the past 11 days we've been suctioning and venting her stomach. The mystery has been that even though we're doing that, she's still been throwing up. With suctioning her stomach you'd think she wouldn't have anything to throw up anymore, but somehow she does!
Having said all that, it has officially been 24 hours since she last threw up! She seems to be in much better spirits today, and I'm praying this means we're on the road to recovery. Tonight they have turned off the stomach suction and clamped her g-tube so I really hope she doesn't start throwing up again!
She's also started to act hungry for the first time which is amazing to me since she hasn't eaten in 11 days, but I'm hoping that's a good sign.
Thank you for all of your prayers.  We feel so loved and would not make it through this without knowing that so many people love our McKinley and are praying for her.  We're praying this hospital stay doesn't extend much past the two week mark!!

And back to Children's we go...

McKinley at Childrens

On Wednesday night McKinley started throwing up, and continued to throw up once a day until Saturday morning when she decided to throw up every 10 minutes for 4 hours.  We took her to the ER and after 9 hours of trying to get her to keep fluids down, and giving anti-nausea meds, they decided to admit her.  So here we are 3 days later, and we're still not really sure why she's so sick.  She hasn't eaten anything since Saturday morning, yet she continues to throw up.  They've done x-rays every day and don't see any abdominal blockage and she doesn't have a fever so it's not really presenting itself like a virus.  But she sure is one sick puppy!  Tonight they are going to start TPN, which is an IV form of nutrition since she hasn't been getting any food.  They really wanted to avoid starting it because it can be damaging on the liver, and McKinley has already had it quite a few times in the past.  But...she needs to eat!
One thing they did find is that she has a bacterial infection called CDiff.  That is probably a lot of what is making her feel yucky, but they're not sure it's entirely the cause.  They started her antibiotics last night and so far there hasn't been any change, I'm hoping they kick in soon.
We could really use prayers for McKinley right now!  Pray that the antibiotics start working soon, and that she feels better soon.  Please also pray that Brooks does not get this infection.  One sick baby is enough for me to deal with!!  Please also pray that McKinley will get some rest.  It is so hard to sleep in the hospital with nurses and Dr's coming in and out every 20 minutes.  She is way overtired and I think would feel a lot better if she could get some sleep.
Thank you for keeping us in your prayers.  I will try to keep you updated when I can!

Miracle McKinley

McKinley getting her night time medicines....

One of our good friends came up with the name Miracle McKinley and it is so fitting for her.  She continues to surprise us and the Dr's with encouraging news. 
We got the MRI results back and both the Urologist and the Surgeon were encouraged by what they saw.  It appears that McKinley has the muscles needed to make a functional rectum!  Although she doesn't have the actual rectum, that is something they can build, but they can't build the muscles, so it is so great that they are there!  We're not sure if the muscles are functional or not, but we'll cross that bridge when we get there.  In the mean time, our surgeon feels that it would be best to do the reconstructive surgery sooner rather than later.  The reasoning for this is that 1. she is in good health currently, her kidney is functioning well so let's take advantage of that  2. she isn't eating solids yet so her stool is softer and will be easier on the rectum as she begins to use it.  (Did you ever think you'd be following a blog that talks so much about rectums and poop??  I sure never thought I'd be blogging on these topics. :))  We have a meeting with the surgeon (Dr. Healy) and the Urologist (Dr. Grady) on Feb 24th and we're going to discuss a timeline for surgery then.  Most likely it will be within the next month.
The surgery will be 7-8 hours long and will require a 7 day minimum hospital stay.  This is by far the longest surgery and hospital stay that McKinley has had yet. (Aside from her NICU stay of course).  I am worried about her being under anaesthesia for that long but I know that the anaesthesiologists at Children's are amazing and that she is in great hands.  I'm also worried about a hospital stay that long and how I can be with her and Brooks at the same time.  But once again, thank goodness for friends and family who are willing to help!  The surgery will likely be done in 4 stages with the reconstructive surgery being the first.  The second surgery will be a few months after the first, and this is when they will take down her colostomy, and she can try using her rectum.  The 3rd surgery may or may not be needed, but this one would be for her incontinence, and they'd want to do that surgery before she goes into elementary school.  There is something with her bladder that needs to be worked on and Dr Grady is concerned that it may damage the nerves and cause her to not be able to feel when her bladder is full, and therefore won't know when she has to go to the bathroom.  This would be a problem with any person, but is even a bigger problem for McKinley who pees 4 times the amount of a normal person because of the fluid intake she needs to keep her kidney functioning.  The 4th surgery would be after she hits puberty to make sure all of her reproductive organs are hooked up and functioning properly.  The Dr's keep reiterating to us how difficult it is going to be to potty train McKinley so we're expecting that to be a challenging time. (As if it's not challenging enough with a perfectly healthy child!)
So, we continue on this crazy journey with McKinley.  She has a long road ahead of her and at least 2 more surgeries before she turns 1, but given every thing that is "wrong" with McKinley, she is doing so amazing!  She is a happy, beautiful child that captures everyones heart the first time they meet her.  Thank you for your prayers and please continue to pray that God will guide the hands of the surgeons and anaesthesiologists.  Our prayer is that the surgeries are a success and that McKinley will heal well, and quickly. Love to you all!

Waiting for results...

Brooks - he sure loves to eat :)

Last week McKinley went in for an MRI to check out her lower abdomen and search for different parts and pieces that need to be hooked up.  I always say that she's my little puzzle that just needs to be put back together. :)  Since she is so little she had to have anasthesia for the MRI, but she's getting to be quite a champ with that and went under and came out of it just great!  We are hoping that the MRI will reveal that she does in fact have a rectum that can be hooked up so that she won't end up with an ostomy for the rest of her life.
I've had to pray really long and hard for McKinley over the last year, and for myself to be able to deal with everything that is McKinley. It has been amazing to see how God has changed my perspective and given me the ability to deal with everything that comes our way.  This is our normal, and we are embracing it.
The other day Tony was You Tubing ostomy care and came across a video from an amazing girl. She has made it her mission to change the way people view ostomy's.  She has a blog called uncover ostomy, and it actually really helped me to relax a little bit about what the results of McKinley's MRI will be.  If you get a chance, check her blog out.  She's very inspiring to me.
Don't get me wrong, I'm still praying that they will find McKinley's rectum and that the surgeon's will be able to hook it up and that it will be perfectly functional for the rest of McKinley's life.  But if that is not God's plan, we are embracing beautiful McKinley and all of her uniqueness.
As for how she is doing, she is much better now!  She is over her UTI that she got after her G tube surgery, and smiling again, thank goodness!  She is 13lbs 8oz and has taken a new interest in growling and screeching, kind of like a dinosaur.  It cracks us up!!
And then there's darling, precious Brooks. He loves to talk, coo, babble, constantly.  He just recently started laughing and I can never get a good video recording of it because it makes me laugh, and then that's all you can hear on the video!  He is an amazing sleeper at night (not such a great napper) but absolutely refuses to go to bed before midnight, no matter what we do.  It's crazy.  I think he's like one of those E-trade babies and has an I Phone in his crib or something, because somehow he knows the time.  I actually waited to put him down last night until the clock struck midnight, because I knew that at 11:59 he would still get up. :)  However, this morning, he is still sleeping!!!  It's 10am!  Unfortunately his sister goes to bed around 10pm and gets up at 6:30 so that means I'm not getting as much sleep, but I'm hardly going to complain about 6 hours.  That's way better than the 2 hours I was getting a few months ago!
So....we are currently waiting for McKinley's MRI results.  Please pray that we get great news!  I will update you as soon as I know anything....Or actually, as soon as the kids give me a chance to sit down at the computer :)

Success!

McKinley, seconds before I had to hand her to the anaesthesiologist....

McKinley's G tube surgery was a success!  It took quite a bit longer than expected (2 1/2 hours instead of 45 minutes) which made Mom and Dad a bit nervous, but all in all it went great, and McKinley is now home and healing well.  The reason the surgery took a bit longer is because they were looking to see if she had malrotation of the stomach, which they would have needed to fix while they were in there.  Thankfully she did not have that, so they didn't need to do any other procedures.  So, the G tube is in, and even better news is that the NG tube is out!  We got to use the G tube for the first time yesterday and all went well, so she no longer needs to have a tube blocking the beautiful view of her face.  We absolutely love that the G tube is hidden under her clothes, and there is nothing the outside world can see now that makes her look like anything other than a normal 4 month old baby girl.  Since she has been home she has had a terrible rattling/congested noise in her throat that can best be explained as sounding somewhat like a diesel truck!  Because of this she coughs and chokes a lot, especially at night, which has made sleeping for all of us very difficult!  We have asked many Dr's opinions as to what this might be from, and finally have come to the conclusion that it seems to be inflammation in the trachea from the breathing tube being in there during surgery.  This causes the mucus to not be able to pass through so it gets stuck in there and she can't get it out.  So, the Dr prescribed her 4 doses of steroids and we are hopeful that when she is done with those she will be cured. :)  While Dr Healy (McKinley's AMAZING surgeon) was doing her surgery, he noticed that her liver looked a bit yellow.  His conclusion was that this could be from her getting too many calories and the liver storing too much fat because of it.  The nephrology team was consulted and they've decided to cut back on her calories, but up the amount of fluid she needs by adding more water to her diet.  They figured that a 3lb weight gain in one month was probably good enough progress, and that it would be ok to cut back a bit. :)  We are still struggling a bit to get the amount of fluid that McKinley needs into her without her throwing it back up, but other than that, everything is going well.  McKinley is now 12lbs 2oz, 23 1/3 in long and as of yesterday her creatnin was .5 - the lowest it's ever been!  Dr Flynn (McKinley's AMAZING nephrologist) said that if this continues, we may not need to do her kidney transplant for a few years.  God is working awesome miracles in McKinley's life, I can't wait to see what he's going to do next!!
And never to be forgotten is sweet baby Brooks.  He is (one of the two) lights of our life.  He has turned into a happy, sleepy baby; one that is much less fussy and smiles all the time.  He is 11lbs 12oz and 24 1/2 in long.  He is so fun to be around and although I haven't heard it since, I definitely got him to laugh a few days ago.  Turns out his as ticklish as his mom. :)
As the days go by we are getting more and more settled into our "routine", if you can call it that.  We are so incredibly blessed.  Dare I say life is getting a tiny bit easier for the Miller clan?