Summer is 8 lbs. 8 ounces, 21 inches longLife has been nuts lately. I finally have some computer time and thus I am posting all kinds of stuff today :) I suppose you are all curious about how Summer is doing...
She is doing great! As you can see in her recent pictures, she has been quite jaundice. This is because of the constant use of TPN and Lipids. She needs these while we slowly increase her breastmilk intake to the point of weaning her completely off the IV TPN. When Summer was first diagnosed with NEC and had surgery to remove all but 10% of her intestines, we were told she would have to be on IV TPN for the rest of her life. She would more than likely develop serious liver damage and eventuall lose her life early from liver failure. Well, with lots of prayers and a little body with incredible healing power, she is proving them wrong!
At 4 months old on the 14th, Summer weighs 8 pounds, 8 ounces (6 pounds bigger than at birth!) and is getting about 3/4 of her nutrional needs from breastmilk in her feeding tube! Each week we visit the GI clinic, they are happy with her bloodwork and increase the milk per hour. This week she goes up to 25 MLs an hour...her goal to be off TPN is only 30 per hour!! Each time the milk is increased, the TPN is weaned down...getting closer to exclusively taking breastmilk. This week we are getting rid of the Lipids (she has had a pump for TPN (the vitamins and minerals) and a pump for the Lipids (omega 6 fats) This is sooo great for her! The Lipids are believed to be a major part of the liver damage problem and would have been replaced with Omegaven, if it were available to her. However, now that she is getting so close to not needing IV nutrition, she won't need Omegaven at all! It may take a few more months with small amounts of TPN while we fatten her up a little more, but the future is definitely looking bright for her! :) With the new change this week, we also get to have a 4 hour break without anything running....next week we will get 8 hours and so on.... Her Bilirubin had gotten as high as 12 a couple of weeks ago, then down to 9.6, and was only 8 yesterday. Her jaundice is getting better as a result and she is looking closer to pink than yellow...we like pink :) Wow, we are being blessed!
In addition to all that good news, last week Summer had another CT scan. A month and a half ago she had a scan that showed some fluid where brain should be. The neurologists were concerned with this and so were we. The current scan shows she still has some swelling in some ventricles, but the areas of fluid are filling in and everying looks like it is improving! You can't imagine what a relief this is for us....ok, maybe you can :) We will still have to watch her, but things are turning more positive than we thought they could. Summer is starting to really respond to us. She smiles a lot and is starting to make cooing sounds...it is really cute.
Here are some proper "newborn" pictures (only 4 months late, ha ha) I took after she yanked out her feeding tube again. They remind me of the pictures the photographers that come to the hospital get. The lips are always pursed and they grimace when you take away the binky...I have to snag every opportunity to see her cute little face without tubes I can! She tends to cry alot when I do.....you'd think she would have learned by now how many pics I take! 
Notice the nasal cannula halo on our little angel, ha ha :)
Grandma Norris and Summer
Brianna is the oldest on my in-laws' side of the family...she loves the little kids...we love her! Hi Brianna! :) I am very tempted to rent her for a couple of weeks to help me at home!
Who could resist this face????
Jared is getting big :)
