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 :)