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?

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.

McKinley comes home

On Friday October 29th, McKinley finally came home!  It was an incredibly exciting moment for us, all to be home, as a family....together.  Since then it has been amazing to get to see her and hold her whenever we want, without having to drive to get to her, but at the same time it has been hard work!
McKinley came home with her feeding tube and heart monitors.  We spent all of Friday morning getting trained on how to work those, as well as getting training on the cocktail of medications that we have to administer each day.  I feel like our living room looks like a hospital room, and that I should now be a certified nurse!  And this all happened overnight.  It's quite overwhelming, but as a great friend reminded me today, God chose us for this for a reason.  I never really liked it when people said "God won't give you more than you can handle."  When one of my very best friends lost her 4 year old son to a short, brutal bout with cancer I thought, "I could not handle that Lord, how is she going to do it?"  There are some things that I knew I just could not handle.  But then someone reminded me that I needed to finish that sentence.  God won't give you more than you can handle...through him.  With God by my side, he will get me through anything.  It doesn't mean that I will like it, or that it will be easy, but with God as my supporter, I can get through this.
So here we are, 2 1/2 weeks later and we are starting to get the hang of this family of 4 thing.  Actually, it's more like a family of 100.  We have been surrounded by friends and family all day and night helping us take care of our two little miracles.  They have been a handful, and we would be zombies without the help of the people surrounding us!
McKinley is doing wonderful since she's been home.  One of the very hard things is that we are constantly on the road visiting Dr's.  Having to get out of the house 2-3 times a week with newborn twins is quite the challenge!  I have decided that McKinley is on a mission to visit all of the Dr's at Children's Hospital. She has 7 different Dr's that she sees and since most of them want to follow up monthly we are there about 2 times a week.  She is seen by nephrology, cardiology, orthopedics, genetics, surgery, urology and her pediatrician.  She is one popular girl!
So far most of McKinley's levels remain consistent. She has her labs taken every other week so while I have to see my baby girl poked often, its good for us to be able to track how she's doing. She is also gaining weight steadily which is great!  At 2 1/2 months old she now weighs 6lbs 15oz and her brother weighs 7lbs 11oz!  I'm still anxious for them to get even bigger but we are taking baby steps!
With her weight increases McKinley needs to be fed more.  Since she is already being asked to eat twice as much as a normal baby her size this is getting very difficult.  It is looking like she may not be able to keep up.  She currently has an ND feeding tube in place, but most likely will have a more permanent G tube placed in the coming months.  A G tube is a tube that is surgically placed directly into the stomach.  While I'm not excited for her to have another hole in her stomach (she already has a colostomy), it will be nice to not have the beautiful view of her face blocked by the tube that is there now.  Plus, her ND tube has already come out once and it's awful seeing her get that put back in.  Not to mention that we have to go to the emergency room to have it put back in which is a total hassle!
Right now our entire focus is getting McKinley to eat and grow.  Please pray that she does not get overwhelmed by the amount that we are asking her to eat and decide not to eat altogether.  Please also pray that my milk supply will increase to be able to keep up with her demands.
And then there's precious Brooks.  He is doing so much better!  He's learning to sleep for longer chunks of time and although he still has fussy tendencies, he's no where near as bad as he was when he first came home.  :)
We are settling in to being a family and are so thankful for everyone who is praying or us!  Thank you for being patient with me as updating a blog is nearly impossible with newborn twins! :)