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.