A busy couple of days leaving us with optimism

Heading out of the weekend, we knew Zoey was going to be busy this week with a couple of labs, her post-surgery eye exam, and her 2nd contrast study of the lower portion of her bowel.  Ironically almost all of this happened on Tuesday.  She started out with a heel stick to test her glucose level, then had her eye exam while stopping feeds for about 4 hours, then went straight into having the contrast study done, and 2 rounds of x-rays after that throughout the afternoon and evening.  Like always, she was a champ and took it all in stride and did well through it all.  This left her feeling VERY tired and she slept the rest of Tuesday night and has been asleep all of today for the most part only waking up for a short time during her cares and her bath which she enjoyed as usual.  She also had blood work done this morning to check her levels and her direct bilirubin level seems to be just a tiny bit lower than last week so they have been managing it well.  That being said, they decided to increase her TPN and decrease her milk so she's getting them at a 50/50 ratio which is a slight step in the wrong direction and increases the risk of more liver damage, but it's what she needs right now to gain weight since we hit that wall at the end of last week.  The past two nights she has had a 10 gram and 20 gram weight gain so I'll take that since we were going negative in weight before this.  It's possible she might lose some tonight since she had her feeds stopped yesterday for so long, but maybe her body is truly absorbing the milk more since they have her on much less than what she was used to getting.

Oh, you wanted to know the results of the eye exam and contrast study?  The eye exam shows that the right eye has a "little angry spot" still but overall they were pleased with how both eyes look from the report I got.  They will re-check them in another 10 days.  This does not mean that she won't need cataract surgery later or won't need corrective eye wear as a little girl, it simply means it went well and she's probably not likely to have retinal detachment anymore so that's very good news.  No going blind right now for this girl!

And we are very pleased with the contrast study.  On Feb 26 she had one done and it went about 15cm before they had contrast coming back at them which meant there was an obstruction.  Her contrast study on Tuesday (a little more than a month later) showed no obstruction and that the contrast was able to go all the way through the lower part of the bowels.  Sometimes, they just clear up themselves and we are very fortunate that this was the case for her.  She may still need a little fixing of some unhealthy parts (which they'll determine when they go in and put her back together), but overall this is great news because they can start re-instilling some of her output from the ostomy bag back into the bottom half of the bowel to get it used to working again.  It will remind that part of her bowel how to work but also will give her body a chance to absorb more from the milk and hopefully help her grow!  They are starting out with 2ccs put in over 2 hours and only twice a day but it's going to be a slow and steady process and if she tolerates it they can push it a little faster.  The eventual goal is to have a continuous flow of everything from her stoma going into the mucous fistula (this is the end of the top of her intestine and the start of the bottom of her intestine).  I told her today that now she has to Grow Zoey Grow!  No pun intended but hopefully the scales have been tipped in her favor again and we can continue with the progression on the long road towards home.