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.

Praying for Poop!

Can you tell who her Daddy is? :)

Over the next few days Tony and I would give each other updates from our respective "posts".  He was with McKinley for most of the days and although I was mostly in my bed trying to recover, I was with Brooks. I think this was the moment I realized how incredibly lucky I am to have the friends that I do.  From the minute I gave birth my friends never left my side.  Since Tony couldn't be there to help me, they stayed with me at night, reminding me to pump every 3 hours and helping me get all my equipment set up since I couldn't get out of bed.  They helped me get from the bed to the bathroom and even bathed me when I was in too much pain to do it.  They helped me with all of my discharge paperwork and wheeled me out to my car. They finished getting the nursery ready since I wasn't done yet.  Since then they've set up meals to be delivered to the hospital, they've sent house cleaners to my house, they've kept people updated on how the twins are doing when I haven't had the time to do it...and so many other things that I'm probably too sleep deprived to remember!  Thank you Katie, Apryl, Lindsay, Jen, Claire and everyone who has brought me meals.  I could not do this without you!!!
After McKinley's colostomy surgery the day after she was born, we had to wait for her to poop before we could feed her.  So she was on IV nutrients, water and fats, but could not get any breast milk.  She continued to lose weight and got down to about 3lbs 2oz.  That entire week we had everyone we knew praying that she would poop.  Days went by; no poop.  The Dr's told us that the normal range that it would take a baby to poop after major bowel surgery would be 5-7 days.  They did x-rays to see if her bowels were ok and everything looked fine.  But as day 7 was approaching, we were getting nervous, and very sad that our baby couldn't eat!  But on the eve of the 7th day our prayers were answered. She finally pooped!  Just 2 days ago they started feeding her for the first time.  Through a binkie with a syringe, she will take about 2 cc's, then she starts to choke and spit up so they put the rest through her feeding tube.  I even got to feed her the other night which was so amazing.  She's still really fragile and every little thing is hard for her right now, but we are determined to make progress!  The story on her colostomy is that she will likely have to wear the bag until she is about 1 1/2 to 2 years old and then the Dr's will do some reconstructive surgery to hopefully correct the problem.  There are a variety of issues that could arise during the surgery and she may or may not need the bag for the rest of her life, but we are praying that as she grows and her system matures that her chances for a successful surgery will be great.  She also has some other "plumbing" issues in that region that are a bit hard to explain but that will also need reconstructive surgery.  She may not be able to get pregnant on her own when she's older but hopefully she'll be able to get pregnant through IVF.  And who better to help her through that experience than Mom and Dad, who had to go through the same thing!
McKinley also still has kidney issues.  She only has one kidney and the one she has is multi-cystic displastic.  They have her on all kinds of stuff that is helping her creatinine levels come down.  Her creatinine levels right now are around 1.1 (down from 1.7) and for a baby her size they should be closer to .3.  But the fact that we are seeing them come down is great news.  They are hoping to get her kidney well enough to be able to get her to 20lbs when she can have a kidney transplant.  The great news about the kidney transplant is that at 20lbs she can take an adult kidney!  That's encouraging for her Dad and I because we are first in line to give it to her!  If her current kidney will not function well enough to get her to 20lbs, then she will most likely come home from the hospital on dialysis.
So, our little girl has a long road ahead of her but we have no reason to believe that these future surgeries won't be succesful, and that she won't be able to lead a normal life.  We are still waiting to get some genetic testing results back that will look for chromosomal disorders so that is a little stressful just waiting, but we are praying every day that they come back negative.
For those of you who are still praying for her - THANK YOU!  Please continue to pray that she will tolerate her feedings and increase the amount on a regular basis so that she can grow big and come home soon.  And please pray that the kidney she does have decides to step up and function well for her so that she doesn't have to be on dialysis, and better yet, maybe it will be healed so that she doesn't even need a transplant.  And please pray that the genetic testing results don't find anything.
Thank you so much, love to you all!!

Huge Miracles

Brooks Anthony Miller born September 8th, 2010 3:25pm

After the babies were born they were quickly whisked away to the NICU. About an hour or so later as I was back in my room trying to recover from my c-section, Tony came to tell me that McKinley was going to be going to Children's right away.  Originally we had been told that she would be transferred within 24 hours of her delivery so this was unexpected.  He then leaned over and with tears in his eyes began to explain that in addition to the problems that we had already discussed McKinley having, she was born with a Imperforate Anus and some other "plumbing issues" down below. Within the hour McKinley was packed up and on her way to Children's, her first car ride just hours after she was born, and she was leaving mommy and daddy already. On her way out the ambulance team brought her by my room so that I could hold her for the first time.  What an amazing moment that was.  With her beautiful long blonde hair and deep blue eyes, I was instantly in love.  Tony gave me a quick kiss goodbye and hopped on the road to be with his new daughter, leaving me more determined than ever to be the quickest c-section healer ever so that I could go see my new son, Brooks!
Later that evening Tony called with some MIRACULOUS news.  McKinley did not have the heart issue that was originally thought.  I repeat, McKinley's interrupted aortic arch and ventricular septal defect were GONE!  Immediately when she got to Children's they started an echocardiogram on her.  What was supposed to be a 45 minute procedure turned into a 5 hour procedure.  As you can imagine, Dad was more than nervous that it was taking so long.  But when they came out they simply could not explain what they had found.  What was clearly on the in-utero ultrasounds was not there.  There was no explanation, it was basically impossible for this to happen.  Which is why they spent 5 hours doing the echo!  All they could find was an aorta that curved the opposite way that it should.  The only thing this might effect is that later in life as the aorta gets bigger it may bump into the trachia causing McKinley to have a bit of a rattle/raspy-ness when she talks, but would not require any surgery.  I repeat, NO HEART SURGERY!!!!!!!!!  God is not just good, he is AWESOME!  They immediately took McKinley off of the drug they had put her on to keep her heart functioning with the IA and VSD because she no longer needed it.  They set her up in the NICU and explored her a bit further.  Unfortunately she did end up going to surgery the next day to have a colostomy bag put in for her imperforate anus, but she came out of that just fine.  Tony spent the next few days with her as she was getting morphine for the pain from surgery.  He said they read Hunting Magazines and cried together.  It's a good thing Mom wasn't there because I'm confident I would have been an absolute mess seeing my baby girl in pain like that;.  Meanwhile at Evergreen, just 6 hours after surgery I was out of my bed, in a wheel chair and on my way to see Brooks.  The most precious sight I have ever seen (in addition to McKinley of course  ).
Brooks was doing great.  They had put a feeding tube in and slowly started feeding him, 3 cc's every 3 hours.  He was so tiny, but I could tell he was going to be a strong boy.  It was amazing to be able to hold a child that I never thought I would be able to have.  7 years later and my prayers had been answered, times 2!

Welcome McKinley & Brooks!!!!!!

McKinley Grace 1st born, September 8th 2010 3:25pm

Where do I even begin?  It all started Wednesday morning at 2:30am with a massive gush of water in the middle of a deep sleep. I sat straight up in bed, grabbed Tony's arm and said "I think my water just broke!" His response of course was "are you serious?!?"  In a matter of seconds we had both jumped out of bed, all the lights in the house were on and we were running frantically all over.  Ok, I have to admit, I may have been the only frantic one running all over.  At least Tony was being productive, grabbing our bags etc... I just remember running all over shaking and frantically talking (that's what I do when I'm nervous).  I have no idea what I was doing.  Thank goodness Tony was there or I probably would have forgotten to actually go to the hospital!
I think we arrived at the hospital by 3am. We checked in (BTW, why do they make mothers in labor stop at the front desk and sign paperwork?!?!?  I could have been signing to give away my first born for all I knew, I didn't read any of those papers!)  They took me to triage where they hooked me up to monitors to check the babies heart rates and monitor me for contractions.  I was having some contractions but I couldn't feel them and they weren't super consistent.  They ran a test to see if my water had actually broke and that came back positive.  They hooked me up to all my IV stuff and then the Dr. checked my cervix.  It was closed and about 1.2in long.  They checked me into my room around 9am and decided that they were going to give me a steroid shot for the babies, hook me up to antibiotics, and give me a Turbutaline (sp?) shot to stop my contractions.  They explained that they wanted to keep the babies in until they were at least 34 weeks gestation and would deliver me most likely on Monday the 13th.  Since I wasn't going to have the babies that day they fed me breakfast and lunch, thank goodness since I was starving! :)  During lunch my contractions started to come back, they were a lot more painful and more often then before.  They finally decided to give me magnesium sulfate which they really didn't want to do, but they needed to stop those contractions.  After lunch they hooked me up to Mag.  Apparently this usually makes women very sick.  I didn't get any sickness from the Mag, and it also didn't stop my contractions.  They kept coming stronger and stronger, so they upped the dosage of Mag. The nurses and Dr's kept talking like I wasn't going to deliver until Monday, but I knew that wasn't going to be the case.  At this point my contractions were so painful.  I could have sworn that I was moaning and groaning like a big baby but apparently that wasn't the case.  No one was paying attention to me!  My Dad was at my bedside looking at the contractions print out and trying to figure out how far apart they were.  Apryl and Tony were sitting on the couch checking Facebook, or by my bed checking my reflexes.  (Thanks Dr. Tony!)  Mom was trying to decide whether or not to go home for a bit and Lindsay was at my house finishing up the nursery.  The nurse was asking how I was doing but seemed to question me when I said on a scale of 1-10 my contractions were a 9.  Finally I yelled out "listen, I've never had a baby before so I don't know what it feels like to be dilated, but I'm pretty sure a head is coming out!"  Hesitantly the nurse decided to call the Dr., I'm sure thinking that I was being over dramatic.  The Dr. wandered in and started explaining to Tony that if I was 1 cm dilated, we have time and if I was a 5 then we might want to head towards delivery.  She finally checked me and quickly said, "she's a 9 - let's go!"  Immediately I panicked.  I started crying uncontrollably and was shaking from the pain.  (Later the Dr's and nurses congratulated me on a completely natural labor with no pain medication as well as a c-section.  Lucky me, I got to do both!)  They rushed me to the operating room and most of what happened after that is a blur to me.  I remember them trying to give me a spinal but I was in so much pain from the contractions I couldn't stay bent over well enough, so he had to try 5 times before it finally worked.  Then I remember needing to throw up.  Then I remember lots of pressure and pulling and feeling them pull McKinley back out of the birth canal where she was already on her way out.  I also remember Tony telling me that everything was going to be ok and consoling me like a champ.  I remember hearing McKinley cry once and then Brooks almost immediately after.  I remember Tony leaving my bedside and going over to the babies, and giving me 2 thumbs up from across the room. I remember them saying how pink both babies were and how much blonde hair McKinley had.  I remember them whisking both babies out of the room and off to the NICU and my mom coming in to be with me.  I remember thinking, "what just happened....this is way too early to be having these babies!!" and being scared of what was to come as far as their health was concerned....

Grow Babies Grow!

My last summer vacation! Thanks for coming on vacation with us and to my last Dr's appt Kendra!

Yesterday I had another growth ultrasound where we discovered that the babies are really enjoying all of this protein I am choking down.  (Thank goodness somebody likes it because I am not a fan!)  Brooks gained a whopping 1 lb 2 oz in the last 2 weeks, which now makes him 4 lbs 10 oz, and McKinley gained 1/2 lb now making her 3 lbs 7 oz.  The great news of course is that they are both growing.  The not so great news from yesterday is that McKinley is not growing as well as they were hoping.  It's not just weight they measure but they also measure the size of her head, stomach, length of arms and legs, and probably a few other things.  The combination of all of these things is what makes up her overall growth, and where they get the percentiles they give us.  For instance, Brooks is considered to be in the 65th percentile, which for a twin is amazing! McKinley however was hard to give a percentile to.  They said that if they were only to measure her head, stomach and arms, she'd be somewhere in the 20th percentile which for a twin is fine.  However her legs are not growing at the rate they should be.  This could be due to her heart defect, or her placental defect.  If it's due to her heart, it doesn't make any sense to deliver her early since her heart is actually functioning better inside the womb than it will out.  However, if it's due to her placenta, then it makes more sense to take her out where she can get nutrients directly, rather than through the placenta.  So, basically we left the appointment with a "let's wait and see how she's doing next week".  My next appointment is on Thursday the 9th in the afternoon, I also have an appointment with the nephrologist at Children's that morning.  It's going to be a big day so any and all prayer you can send our way would be much appreciated.
All in all, everything else at the appointment went well.  Aside from McKinley's growth she passed all of her other tests amazingly, and even passed the NST before her brother did. :)
We're getting super excited and nervous all at the same time to meet these precious miracles!

Emotional Roller Coaster!

We're so excited to meet these babies!

First of all, thank you all for riding this roller coaster with me!  I have days that are great, days that are bad, days that are hopeful, days where I cry....I hear much of that may be due to me being in my third trimester as well! :)
I am now seeing my Dr's 2-3 times per week, for ultrasounds, non stress tests, OB visits, cardiology visits and nephrology visits.  So, I'm not sure if I'll be able to post after each visit but I'll definitely try to do it weekly.
This weeks visit went much better than the visits of weeks past.  McKinley is really hanging in there!  She passed her non stress test with flying colors, the nurse even commented that she was very impressed with how much these two move considering I'm only 31 weeks along.  I'm so proud of my kids already!  This ultrasound was a quicker one but as they do every week, they are checking to see that McKinley is staying consistent in 5 areas.  1 - Her amniotic fluid level needs to remain within the criteria, 2 - She has to continue to grow at a steady rate, 3 - she has to maintain the appropriate amount of blood flow to her brain, 4 - she has to show movement, and 5 - she has to show fluxion in her limbs.  She passed all 5 of those on Tuesday!  The Dr also mentioned that her kidney (which has been our latest huge concern) really seems to be functioning.  It's a little perplexing, because if she's missing one entire kidney, and the other one is full of cysts, she shouldn't be showing the amniotic fluid levels that she's showing and a few other things they're looking at that seem to be going well.  So each week they look around for that mystery right kidney.  It's almost like it's there but they just can't find it.  The Dr. was really impressed with not only how she was doing, but how I was doing as well.  My cervix shortened a bit, but not enough to be super concerned about.  They are going to try to get me to 38 weeks to get these kiddos as big and healthy as possible, and it looks like I have a good chance of making it that far!  And we can't forget Brooks.  He is doing awesome and I know that he's taking good care of his sister in there.

Your prayers are working, I can't wait to blog about our miracle babies in a couple of months!

Great

GREAT

I am reaching out to you

In desperation I need you

This want is taking over my life

Glorious Father I hold you high

To know that you are by my side

I'm overwhelmed I can't deny

That you are Lord and King of all

And now I know that above all

You're great

Bigger than all my mistakes

Savior I'll do what it takes to bless your name

To you my hands I'll raise because you're great

You're great

And worthy of all my praise

Humbly I'll fall on my face before you're throne

Forever singing songs of how you're great

Jesus you're great, all to you for you are holy

Jesus you're great, Father God send your glory

This is a song we sing often at our church.  I've found that since we've received this news about McKinley, I literally cannot sing the first 2 lines without absolutely choking up.  (Which is really a bummer because this is probably my favorite song to sing!)  And it's now been proven that I can't even type the first two lines without tearing up!  This song rings so true in my life right now.  I am so desperately reaching out to God to heal our McKinley, but above all else I want to bless his name and glorify him no matter what the outcome.

This has been a hard week for us.  We've seen a variety of different Dr's and gotten different reactions from each Dr.  But the underlying theme is that everyone is very concerned.  There is no way to sugar coat what McKinley has.  She is VERY sick, and we need to start to prepare for taking care of her outside of the womb.  I met with my OB yesterday and she was already apologizing while she said it, but her words were that she's "very concerned about McKinley's survival".  Those words sear through me like nothing else ever has.  I'm not willing to go there, or even think about that.

I KNOW that God can heal.  I'm not sure if that is his plan for McKinley, but I desperately pray that it is.  I am so thankful for this precious life that I have already bonded with as I feel her kick and squirm inside of me daily. I'm so looking forward to meeting her and spending as much time with her as God will give us.  My prayers remain consistent, please heal our McKinley and let her spend a long life with us.  Thank you to all of you who are praying the same prayer!

What a day....

6 months pregnant

It all started at 9am this morning with a vanilla steamed milk brought to me by my good friend (and this mornings ultrasound companion) Sweina!  We sat through about 2 hours of ultrasounds and about an hour of Dr's updates and genetic counselor visits.  Not much new was discovered at this visit, but it was brought up that McKinley's left kidney looks to be multicystic dysplastic which is not a good sign especially since they still suspect that she does not have a right kidney.  At this point I'm not sure what all of this means, most likely we'll be meeting with a urologist at Children's next.
Then it was off to Children's where thankfully, Tony was able to get off work early and accompany me. 2 hours on the ultrasound table only being able to view McKinley's heart was the longest 2 hours ever!  However, she did wiggle around a bit and show off her practice breathing and then got the hiccups, so that was entertaining. :)  After that we spent an hour with Dr. Meg Vernon (an AMAZING Dr!!! - thank you Neinabers for the recommendation!) and the genetic counselor.  What they can see is that McKinley most likely has an interrupted aortic arch and a ventricular septal defect (better know as a hole in her heart).  Every baby in utero has a hole in their heart between the right and left atriums which McKinley also has, but she has an additional hole between her right and left ventricles which is not normal.  We talked for quite some time about what this could mean for McKinley after she is born and Dr. Vernon's best guess is that she would be sent to Children's no more than 1 day after she's born and monitored there for about a week.  After that first week they would then chose to operate on her heart either by going in through her side, or the front of her chest or both.  Most likely she will spend 3-4 weeks at Children's right after birth, hopefully with no side effects so that she doesn't have to spend any more time there.  Dr. Vernon also suspects that McKinley might have a disorder called DiGeorge Syndrome.  This syndrome has a wide variety of symptoms and severities of those symptoms.  They will do a wide variety of genetic testing when McKinley is born to see if that is what she has, or if it is something else, or possibly nothing.
There are pieces of good news that I can share as well.  McKinley continues to grow and now weighs 2lbs 15oz.  Brooks has slowed a bit in growth but we're told that is normal for twins around this gestation and he weighs about 3lbs 8oz.  McKinley's amniotic fluid has increased again to a level of 5 which means she has more room to move around.  And my cervix actually lengthened a bit up to 2.1, so while still on "princess mode" I'm not on bedrest!
I feel like I ran 10 marathons today.  My mind is spinning and the questions I have are never ending.  Our faith continues to be unshaken and we are confident in God's plans for our life and our childrens lives.  We know that he heals and are still praying for the miracle that he will heal McKinley.  But we are so blessed to have these 2 little lives, for as long as we may have them.  We prayed for them for years and will continue to pray for the rest of our lives....

1/2 time is better than full time...

Getting the room ready!

....when you're talking about bed rest that is!  Yesterday at my weekly Dr's appointment things went pretty well.  My cervix is still a bit short so they have me on 1/2 time bed rest, but I'm feeling fortunate that it's not full time!  At least I can still get out occasionally!  They also did a fetal fibronectin test that is supposed to detect whether or not I'll go into labor in the next couple of weeks and that came back negative, so that was great news.  The best part of the day was the Non Stress Test where they get a base heart rate for the babies, and check to see if they are having an adequate amount of movement and if their heart rate increases when they move.  Both babies passed with flying colors, so to me it's just another sign that McKinley is hanging right in there with her brother. :)
Next week is a big week for us.  On Tuesday we have our growth ultrasound at Evergreen in the morning, a meeting with the genetic counselor after that, and our echocardiogram at Children's that afternoon.  We are praying desperately that the Dr's at Children's will not see what the Dr's at Evergreen saw.  We are praying for a clean bill of health on McKinley's heart.  Please join us in that prayer request!!  Then on Thursday I have my first appointment with my OB since all the news we've gotten about McKinley so I'm sure we'll be discussing a plan for my delivery, whether it will have to be a c-section or not and whether they'll schedule my delivery or let me go as long as I can.  So, next week we'll probably be getting a lot of answers!  Thank you for your continued prayers for us and our babies.

Tiny Miracles

Part of my prayer team...

And this is where my blog becomes current.  After our last ultrasound the only thing I felt like I could do was send an email to everyone I knew to ask them to pray for us.  The response was absolutely overwhelming.  Never in a million years did I imagine that so many people would get behind us, so many people that we didn't even know!  God gave me a peace that passes understanding in those following weeks and I know it's because of the multitudes of people that were praying for me.  Immediately my close friends organized a group to come over and lay hands on McKinley and me and pray for us.  I could feel God's arms wrap around me and her, and I knew that no matter the outcome, we would be ok.  Of course I never stopped praying 100 times a day that God would decide to heal McKinley.
On Tuesday we went in for our first ultrasound since the "bad news" ultrasound.  It was 2 hours of anxiety waiting for the scan to be over so the Dr could come in and give us her report.  Last time when the Dr came in she gave me a big hug and immediately said, "I'm worried about McKinley, she is not normal".  This time the first words out of her mouth were "I'm encouraged".  I knew it!  God had already begun his work!!!  The Dr went over all of McKinley's problems again since Tony was there to hear it this time.  They still could only find one kidney for sure but thought it might be possible that she has a tiny "bud" of a kidney on her right side that is not functioning.  The kidney she does have seemed "bright" and enlarged on the ultrasound so there is some concern that it might not be functioning as well as we had hoped.  But the praise is that her amniotic fluid is increasing.  Her amniotic fluid level had always been at the very minimum level of 2.  At this ultrasound it had increased for the first time to 3.5!!!  This means that her kidney is working because she is producing her own amniotic fluid and that has to be processed through the kidney.  Yay!!!
She still has a coarctation of the aorta but what was a bit perplexing to the Dr is that the blood flow to her brain seemed very normal (in fact, she has a bigger head than her brother right now!) and her arms and legs were long.  (Thank you Tony for the long arms! :))  Usually with a coarc the babies extremities tend to be a bit shorter because blood does not flow there fast enough.  The Dr's guess is that the coarc is higher up in the aorta which is the best place to have it, if you're going to have it.  So this was another praise!
The spine is still a concern, however Tony and I, and the ultrasound tech sat and watched her move her head up and down and to the side for a few seconds which was something we had never seen before.  Praise Jesus!  The Dr's still concerned that she doesn't have a full range of motion, suspecting a fusion of the spinal cord at the back of the neck, but I figure we're just taking baby steps.  Let's give God time to work his miracles. :)
Probably the best news of the day is that McKinley is continuing to grow at a steady rate.  She is still only in the 15th percentile, but at least she's staying there and not dropping.  They estimated she weighed about 2lbs 4oz and Brooks is 3lbs.
One of the things we were concerned with was whether or not we needed to do an amnio.  At the end of the appointment the Dr said they were less concerned with needing to do the amnio now because McKinley is making progress and still growing.  So that was a major answer to prayer, we didn't have to make that decision on our own, it was made for us!
So all in all, we're taking baby steps.  God is already working tiny miracles on our baby girl and I can't wait to see and share the miracles that he's going to continue to work.  Please continue praying for us and for her, it's working!!!!

The News....

A very special gift given to me at my first baby shower

On July 22nd we went in for a routine bi-weekly ultrasound.  At this point the Dr's had decided to see me every other week.  Since McKinley was quite a bit smaller and probably always would be, they wanted to check her often to make sure she wasn't in any distress.  They had also ordered an echocardiogram on McKinley's heart just to be sure that everyone was ok. After almost 4 hours on the ultrasound table and many ultrasound techs coming in and out to look at and discuss what they were seeing, I started to get a little uneasy.  When the Dr came in I was hit with news that I never in a million years expected to hear.  The Dr said that McKinley is very sick. To try and sum it all up, she only has one kidney, she has a heart disorder called a coarctation of the aorta and a possible spine problem. Any one of these issues alone can be survivable and possibly even operable, but all together does not bode well for McKinley. The Dr's are very concerned for her. They are sending me to Children's Hospital in the next month to get a second opinion on the ultrasound, as well as register McKinley in their system since that is most likely where she'll be headed after she's born. With all three of these problems (kidney, heart and spine) there is a suspicion that she may have some sort of chromosomal disorder or syndrome. We need to decide whether to do an amnio to help diagnose this or wait until she is born to do the blood work. Some of the disorders may be survivable, and some may not.
Of course this news for us has been extremely difficult and the helpless feeling of not being able to do anything is almost more than I can handle. However I know there is one thing I can do, and ask everyone I know to do, and that is to please pray, as often as you possibly can. I know that God can heal, and if he wants us to deliver a healthy baby girl in Sept/Oct than we will. I believe in the power of prayer and I believe that God can work miracles.

We're pregnant!!!!

Our BabyMoon

On February 17th at 12:30pm my Fertility nurse called me to say that our 4th cycle had worked!!!  We were pregnant!!! I literally could not believe it.  Even after our first ultrasound at 7 1/2 weeks where we discovered we were having twins, I still couldn't believe it.  Even through all the morning sickness it seemed more like I kept eating something bad than actually having morning sickness!  Somewhere around my 3rd month I started showing more, clothes stopped fitting and it became a little more real.
We ordered the nursery furniture, decided to go on a "babymoon" on a Royal Caribbean Mexican Rivera Cruise and really enjoyed my growing bump.  Aside from the morning sickness, flu in my second trimester, kidney stones, carpel tunnel, acid reflux and early swelling in my feet and hands, this pregnancy was going very well!! :)
At 16 weeks we found out that we were having a boy and girl.  Our girl was always curled up so she was harder to confirm, but after a few more ultrasounds, around 24 weeks the Dr's were confident, she was a girl.  We immediately picked names without much hesitation.  McKinley Grace and Brooks Anthony.
The Dr's had always been a bit concerned about McKinley during the ultrasounds because she never really moved to give them a good view of her right side.  They had discovered that she had a 2 vessel umbilical cord early on.  They warned us that this could be an indication of a heart defect, but that the chances were less than 1%.  A few weeks later they also discovered a velamentous cord insertion, meaning that her umbilical cord inserted into the side of the placenta rather than in the middle.  This meant that McKinley would automatically get less nutrients than Brooks, so I was put on a strict diet of drinking 160g of protein daily (in supplements/shakes) in addition to any other protein that I could get.  She also runs a risk of early term labor, so they wanted me to bulk her up as much as possible.  They also put me on "princess mode" which is not bedrest but very close to.  Just as we had learned to adjust to this new news about our baby girl our whole world was flipped upside down....

The beginning....

Our 3rd IVF attempt, picture of our embryos

September 22nd, 2001 was a beautiful, wonderful day.  It was the day two best friends were married.  Tony and I had known each other for 3 years at that point.  We met at Western Washington University in Bellingham and once we decided to commit to each other we never wavered.  After 2 years of marriage we decided it was time to start a family.  In August of 2003 we decided to just see what happened.  After a year of trying we headed to the fertility Dr to see what might be wrong.  After extensive testing they could find nothing.  So, another 2 years went by, charting basal body temps and trying every home remedy in the book.  (Robatussen, Black Licorice vodka, baby aspirin....we've heard them all!!)  When we were having no luck with our own methods we decided to try some fertility medication.  The Dr. said it was a slam dunk, no problem.  We were young, healthy and had nothing wrong with us that they could find.  After 3 months of Clomid and still no pregnancy the Dr. suggested an IUI.  She was sure this would work.  Alas, it didn't.   After that we'd had it.  We needed to take a break for awhile.  It was tiring, emotional, time consuming and expensive.  After another two years, still nothing.  With some much needed motivation from some close friends, we decided to visit a different fertility Dr.  At this visit we got the same optimistic news.  This should be easy!  Let's try 3 IUI's and then go from there, but one of the IUI's will definitely work so we won't need to worry about anything further than that.  3 IUI's later...nothing.  That's when we made the big decision.  We had saved up and were ready to put all of our savings into trying IVF. In August of 2009 we had our first failed IVF attempt.  Although extremely disappointing, we had prepared ourselves for having to do more than one cycle so we immediately tried again.  After a month of IVF medications my body decided it didn't want to cooperate and at the last minute our cycle was cancelled.  So, we jumped head first into our third cycle.  In October of 2009 we found out that our cycle had resulted in a bio-chemical pregnancy, meaning the embryo may have tried to implant for a day or two but ultimately could not hang on.  After three failed attempts we were feeling a bit disappointed to say the least.  At this time I had come to a place where I was so content with God's plan for my life.  I can truly say that I was able to give it all to him and was at peace with whatever he wanted for our life.  We were exploring an opportunity to adopt a little baby boy, so we were already remodeling the nursery in preparation for that.  We took some time off, went to Cabo, and enjoyed the holidays.  After the holidays were over we decided to try another IVF cycle.  In February of 2010 we went to the Dr. to get our pregnancy test result and this is when our lives changed forever.....