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....