Merry Christmas from Wenatchee!!!

Yes, you heard right, I said Wenatchee.  I can hardly believe it, we actually made the 3 hour journey in the car with 2 newborns!!  It actually went surprisingly well until about 30 minutes before Great Granny's house when they started to wake up and cry.  We even made it all the way without stopping once.  Let's hope the trip home is as smoothe. :)
Update on Brooks.  He is doing really well and his development seems to be following his adjusted age right on target.  So even though he's 3 1/2 month old, he really acts like a 2 month old.  He's started sleeping more, which is great!  He actually goes down for naps during the day.  Unfortunately McKinley is a social butterfly and prefers to still stay awake for most of the day, unless someone is holding her.  So...my amazing friends and family are still providing support during the days, and some nights to help me manage it all.  Brooks' reflux is still a problem but it's definitely better than it was.  He's on medicine still and sleeps in an upright wedge so those things really help out.  We are falling in love with him more and more each day as he starts to smile and "talk" to us.  I'm pretty sure he's going to start laughing soon.
McKinley is still doing miraculously well.  Her sick kidney continues to function with strict management of her medication and feeding.  She continues to grow (she is 10lbs 10oz now!!).  Most babies with kidney disease don't grow well and her Dr's are thrilled at her progress.  She has even taken over her brother in weight, he is only 10lbs 5oz. :)  She is still eating twice what a healthy baby her age would be eating and this feeding schedule will likely continue until she has her kidney transplant.  Because of this, she will need to have a permanent feeding tube placed into her stomach called a G tube.  We are hopefull that the G tube will make her more comfortable at night. Currently she is extremely stuffy, to the point where she can barely breathe.  It causes her to be awake for a good portion of the night and needing to be held by someone.  She will have the G tube surgery on January 5th and will stay two nights in the hospital.  Although this is a very common surgery we are still nervous about having our baby under anesthesia and would appreciate all the prayers you can send our way!
The other issue McKinley is having is that because we are forcing so much food into her, she is losing the desire to eat on her own.  We had a meeting with the occupational therapist at Childrens last week and it appears that her vascular ring (heart defect) is also causing an issue with her eating.  The vascular ring is a ring of blood vessels that formed because of her backwards aortic arch, and it's squeezing her esophogus.  We had an upper GI study done and it's very apparent on the x-ray slides they showed us.  With her NG tube going down her esophogus, it causes the passageway to be extrememly narrow.  Milk can back up because of this narrowing and reflux back up and out of her, or back into her lungs. So she often chokes during feedings and gives up early because it's so unpleasant.  Originally they had hoped that her vascular ring wouldn't be an issue until elementary school.  If it wasn't an issue until then, the surgery would be very minor since she would be so much bigger.  However if they have to operate on it now, it will be much more of a major surgery.  We are praying that the placement of the G tube and removal of the NG tube will free up enough space for her to want to eat on her own. We don't want her to lose the skill of eating and have to retrain her later in life.
All in all we are adjusting to life at home as a family and feel so blessed to all be together this Christmas.  Wishing you all a very Merry Christmas - God is good!!

Doing great!

So....it seems that it is taking more and more time between blog posts. :)  Life is pretty crazy around the Miller household!  Somehow the twins are now 3 months old and a whopping 9lbs each! :)  We are getting more and more used to our new life with each passing day.  Brooks is finally starting to be a little less fussy and even will sleep 6-8 hour stretches at night on occasion!!  We had a wedge made for him (a foam "bed" that allows him to sleep upright to help with his reflux) and we can finally put him down to sleep! He just started sleeping in his room a little over a week ago and he's doing pretty well.
McKinley has actually passed Brooks in the weight department!!!  She is being fed so much in order to keep her kidney functioning that she just zoomed right past him, which is pretty amazing since she was born a pound less and didn't eat for the first 2 weeks of her life!!  The kidney Dr's are so proud of her progress and told us that most babies in her condition don't thrive, let alone gain weight like she is.  We are on a strict feeding schedule and she is taking in almost twice what she would normally eat.  So, most of her feeds are done through her feeding tube.  We would love to be able to feed her more with the bottle but right now that is a major struggle. We will be seeing an occupational therapist at Childrens next week so try and determine why it is so difficult for her to eat on her own.  There could be a number of reasons but we pray that it is something that is fixable and as non invasive as possible.  The Dr's continue to tweak McKinley's medications to make sure that her kidney functions.  She's currently on 4 medicines in the morning, 2 in the afternoon, 4 at night at 1 bi-weekly shot.  The dosages continue to change with each lab draw she has (usually 1 or 2 blood draws per week).  She is still seeing the Dr's about twice per week but luckily we have wonderful family and friends that will look after Brooks while we're going back and forth between Children's hospital.
We are so blessed to have these two miracle babies!  Something I occasionally need to be reminded of when they're both crying, or keeping me up all night long. :)  And God has been so good to watch over our sweet McKinley and keep her healthier than she probably should be.