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! :)

Tube in, tube out, tube in....

McKinley with her feeding tube out

So...McKinley is getting ready to come home!  50 days and counting in the NICU at Children's and Evergreen.  She told me yesterday that she is ready to come home. :)  Her hematocrit level has come up to 32.5 and her color is looking wonderful since she is no longer anemic!  She will come home on medicines to regulate that number but the great news is that she is not needing a transfusion currently.  The other amazing news is that her creatinine level has come down to .8!!!  When she was at Children's the lowest it ever got was .9, but after her UTI it was hovering around 1.1 where the nephrologists thought it would stay constant.  But on Sunday it hit .8, the lowest level yet!  Meaning her kidney is working hard to function for her.
We were super excited on Saturday because the Dr's had taken her feeding tube out.  We got to see her precious little face with nothing blocking the view!  Her eyes were bright and shiny and she looked so happy and comfortable without her feeding tube.  However we were disappointed to see that on Monday her feeding tube had been put back in.  And unfortunately it was not a regular NG tube, but a more long term tube that she will come home with.  We had initially prepared ourselves for this, but when I saw that feeding tube out this past weekend I got my hopes up big time!  The reason the tube had to be put back in is because McKinley needs to take in so much more food/fluid than is normal for a baby her size.  They tried to get her to take it all by bottle, but if you could imagine eating a huge Thanksgiving feast every 3 hours, you would eventually lose interest in eating too!  Plus, she burns so many calories while she's trying to eat that much that it ends up being counter productive. So, back in the tube goes.  She definitely seemed like something was irritating her last night, I'm not sure if it was the tube that was just placed, or the amount of food they were packing her with, but I pray that she can get comfortable and used to having the tube since it's going to be around for awhile.  The plan as of now is to let McKinley eat what she wants during the day (keeping track of the amounts) and at night making up the difference through a continuous tube feeding, all night long.  We pray that this will allow her to grow big and strong and that the tube will be able to come out sooner rather than later.
The rumor around the NICU is that McKinley may be able to come home by the end of the week!  We are so excited to finally have our family all together for the first time.  It's going to be crazy busy, but we are thankful.  We have so many amazing friends and family helping us during the night and during the day.  You know who you are!  We could never express how truly grateful we are for your help.  God is so good for blessing us with your friendships!
Please continue to pray for McKinley that she will tolerate her new feeding tube and feeding schedule well, and that she will continue to gain weight.  Please also pray that she responds well to the medicines that they will be sending her home with and that they will work as well as the medicines that she is on now.
Brooks is doing better now that we have him on baby Previcid for his reflux.  He's still a fussy little guy, so we are hoping that having his sister by his side again will calm him. :)
I can't wait to post pics of our family all home for the first time!  Coming soon...hopefully....

McKinley Update

Together again for the first time....9-27-10

The day Brooks came home was a huge celebration, and also a stressful day for us.  The night before, we had been visiting McKinley and something wasn't right.  I've always questioned this "mothers intuition" you always hear about, but man, I experienced it big time that night.  As I'm sitting in McKinley's room listening to her 3 1/2 year old roommate scream at the top of her lungs (because she was throwing a tantrum, not because she was in pain from her broken leg) and watching CPS and the police come in and out of her room; I was having a mental breakdown.  My precious, peaceful, 4 pound baby girl deserved better than this!  She should be at home, with her parents and brother, not in this environment where she lies in her crib all day long until a nurse comes to bug her and take her vitals, or poke her for a blood draw.  But even more than that, I knew she wasn't ok.  I couldn't tell you why, but as I sat there on the couch sobbing with my head in my hands, I just knew something wasn't right.  And low and behold, at 6am that next morning the hospital called to tell us that McKinley had stopped breathing that night and had been transferred back to the NICU.  They determined that she had contracted a urinary tract infection and because she's a preemie, the first thing their tiny bodies think to do when something is attacking them is to stop breathing.  They immediately got her on a two week dose of IV antibiotics, and although this set her back a bit, she is now recovered from her UTI and feeling much better.
Since then, they have done a lot of tests on McKinley, most of them with very positive results.  They discovered that she has a vascular ring, which is a heart defect where blood vessels form a ring around the esophagus which can cause trouble swallowing.  McKinley is having some trouble drinking from a bottle so their suspicion was that the vascular ring could be causing that, but they found that the ring was very loose, and possibly even just a partial ring and shouldn't be causing any problems.  Next they did an esophagram to see if there was an opening between her esophagus and trachea that could be causing problems with swallowing but thank goodness, this came back negative as well.  So at this point we are just very slowly increasing her feeds through a bottle (she takes about 20cc's at a time right now) and thinking that her trouble with swallowing is just because she is a preemie, and that as she gets bigger this will come easier for her.
The Dr's have also been following her kidney very closely.  Since she got her UTI, her creatinine levels have remained steady at about 1.1.  She had gotten down to .9 before her UTI but hasn't been able to get back down there since.  This is still really high for a baby her size (should be closer to .3) but not high enough for them to send her home on dialysis.  They will continue to monitor her kidney every other week or so after she comes home and we're praying that her kidney will remain strong enough to get her past the 20lb mark so she can have a transplant, without needing to go on dialysis first.
Another concern right now for McKinley is her hematocrite level.  It has remained steady at about 19.5 which is very low.  Usually a level of under 20 requires a blood transfusion, so they are keeping a close eye on that and hoping to get it higher with some medications.
The great news is that McKinley was just transferred back to Evergreen after being at Children's Hospital for over a month.  She has just reached the 5lb mark and they are working on getting her to be able to eat on her own.  We are hopeful that she will be able to come home in the next few weeks.

She most likely will come home with her feeding tube in and on lots of medications as well as her colostomy bag, but hopefully it won't be long before she'll be eating and growing on her own.
In the mean time I am home most days with Brooks. Unfortunately he's been diagnosed with reflux which from what I am reading, is basically the same thing as Colic.  So, it makes days and nights with him very difficult as he doesn't sleep without being held, and when he's awake he's crying because his tummy hurts.  It's going to be exciting when they are both home!  Please pray for our family that the sleep deprivation doesn't drive us too crazy.  And please continue to pray for our beautiful McKinley that  as her body grows that it will heal and function for her in the best possible capacity.
Hope to update you again in the nearer future.... :)

Brooks comes home!!!

Brooks' first car ride!

Wow, if I thought it was hard to update my blog when both babies were in the hospital, I have another thing coming now that Brooks has come home!  I am so flattered by the amount of people that are following this blog, I apologize for the amount of time between posts, but hang in there, I promise I will keep updating!
So much has happened in the last few weeks!  For starters, our amazing friends surprised us with a stay at the Willows Lodge in Woodinville for our anniversary.  Our amazing friends Cory and Cassie Noel went out on a limb and called the manager at Willows, told them our story and they offered to comp us a room for the night of September 22nd, our 9th wedding anniversary.  I cannot tell you how important and special this was to us.  Every year since we've been married we've made a huge deal out of our anniversary. And we always celebrate it on the actual day, whether it's a Wednesday or a Saturday.  We always go somewhere overnight and no matter what is going on, we make it a priority.  With all of the marriages that are not staying together these days, we feel that an anniversary is a huge event to celebrate.  We had plans to go somewhere before the babies were born but once they decided to join us earlier than planned, all anniversary plans went out the window.  So when our amazing friends told us that they had planned our anniversary for us, we were over the moon excited! Yes, it was very hard to be away from our babies for the day, but it was a much needed mental break, and so great because we were only minutes from the hospital should we have needed to go somewhere.  And the managers and staff at Willows Lodge went out of their way to make us feel like royalty.  We were greeted at every place we set foot in, brought extra special appetizers at dinner, had fondue in the room, comped a free in room movie and so much more.  If any of you have not yet been to Willows Lodge, please go!  The Barking Frog Restaurant is incredible, or if you aren't up for a fancy meal, check out their happy hour in the lounge.  Delicious food in a beautiful setting and great half priced drinks form 4:30-6:30.  If you are a business professional that take clients out, take them to the Willows Lounge.  Really, they are incredible and we can't thank them enough for what they did for us.  We were total strangers to them, yet they treated us like family.  They will never know what an impact they made on us....
Anyway, back to the kiddos. :)  Brooks came home on Monday the 27th.  So we've been sleep deprived ever since! :)  He weighed 5lbs 5oz when he was discharged and went straight from Evergreen to visit his sister at Children's.  The poor guy didn't even get to come home and get comfy first.  But it was amazing to see McKinley and Brooks together again, for the first time since they were born.  I didn't know what to expect, but we immediately put them in the crib together and they were so calm.  They knew each other were there and it was like all was right in the world again.  So now we take him with us every time we go to visit McKinley.  We think it's good for both of them to be together.  It will be amazing once they can be together at home.
Brooks is doing well.  He has his days and nights mixed up, and just yesterday was diagnosed with reflux. :(  But, we're learning how to live with each other and falling more in love each day.  Small pieces of the puzzle are finally fitting together, we are so anxious to have all the pieces in place.