We're tube free!

We had an exciting liver appointment last Thursday!  We met with the nutritionist first, she was very nervous about us cutting a full 6 hours from Lincoln’s NG feeds.  She said that was a big cut, usually they go in 2 hour increments, but to continue with it because he was doing well.  Then the liver doctor came in, saw how Lincoln has been growing, and we told him how Lincoln wakes up hungry but eats less while on the feeds.  We've been tracking and charting everything Lincoln eats so we were also able to show them how Lincoln had been trending.  Then the doctor told us to try removing the NG completely!  We were beyond excited! 

This is sooner than we or the doctor thought the tube would be coming out, and I credit pure stubbornness on the part of me and John in getting things moving.  We’ve been fighting for, tracking and charting every half ounce, and will continue to do so.  Removing the tube doesn’t mean he’s better, but it does mean he gets to be a little more “normal”.  And that’s what we want for him.

So far Lincoln’s no-NG calorie intake has been going ok…not great, but not terrible.  He missed his goal by half an ounce on Friday, surpassed it by an ounce Saturday, and missed it by 1.5 ounces on Sunday.  If he can’t consistently keep up his volume the tube may make another appearance.  We need a good day for the next few days!

In terms of stats, his direct bilirubin was back to what John and I consider his “usual”.  He had been sick a few weeks ago and landing in the emergency room and at that point his direct bilirubin was above 5.  Thursday it was down to 4.6.  Not his lowest of 4.2, but at least improved.  His vitamin D had been too low and is now at the low end of normal, but within the normal range. His cholesterol had been well above normal and is now at the high end of normal, but also within the normal range.  So we were excited about that!  Alagille’s kids (and probably liver kids in general, I'm not sure) can get cholesterol buildup in their blood and it can lead to xanthomas – hard bumps in their skin caused by cholesterol deposits.  That’s no fun for anyone so we were happy we’re in the normal range for now.

We had a weigh in with the pediatrician today; this was his first weigh in since we started the weaning process 2 weeks ago.  11 pounds 10 ounces, which is up 6 ounces over 2 weeks.  With the NG he had been growing about a pound every two weeks so we’re a little nervous that his growth has slowed down since the weaning process began.  The pediatrician said it wasn’t ideal growth, but not terrible since normal infant growth rates start to level off in general by 3 months.  And Lincoln is 3 months today.

Hopefully he’ll even himself out and get the hang of eating all on his own quickly.  For now we are loving not having to schedule our evenings around getting the feeds set up, loving having a much less congested little baby, and loving how much more he’s started “talking” since we took the tube out.   He is all around a much happier little man!

Lincoln also had his echocardiogram and EKG last week.  The cardiologist saw some new things he didn’t love, but we’re not sure if things really changed or if they just didn’t show up a month ago since Lincoln was smaller and it can be hard to get a good picture.  No action at this point and still might not be a big deal, just another echo in two months to monitor things.  So for now we’re not going to worry about it.

We really can’t thank our friends and family enough for all their love and support through all this.  Sometimes things get hectic and we forget to respond to messages, but we hope you know that we see them and read them to Lincoln.  I’m sure I’ve said it a hundred times, but everyone’s kind words, thoughts and prayers really help us stay positive and as energetic as possible.

We aren’t going to get around to sending Christmas cards this year (heck, we haven’t even sent Lincoln’s birth announcements yet!), but hope everyone is having a happy and healthy holiday season!