Janessa had her ICARE appointment yesterday. It went very well! Janessa weighed 13lbs 14oz which is more than 2lbs from last months appointment which is very impressive! They were concerned that she wasn't gaining any weight from the TPN, which that is what it seemed like, she was 11lbs 5oz for three months straight! At November's appointment we got the okay to start feeding her rice, fruits, & veggies. It seems very coincidental that as soon as we started feeding Janessa a variety of food more often she started putting on the pounds! So they decided to increase her feeds and they would work with her lab work with me. So she eats her baby rice, and food three times a day, apple juice, and formula twice a day! So hopefully we will continue to put on the pounds!
Even though Janessa's bilirubin is down, her liver enzymes are still high, but I was ensured they are coming down, slowly but for sure, so our hope is to possibly get her off the liver list when she gets a bit older! As she ages she will have less TPN time and more feeding times which is great for her liver! We found the main problem to this problem awhile back with her lipids, and they put her on omegaven which has HELPED a lot!
Everybody is really impressed with Janessa. Her OT is amazed that she can feed herself, and her doctors are amazed she is doing so well despite this horrible prognosis of her condition(which I didn't believe from the start)!
Hopefully next month we will see more improvements and maybe finally cut her TPN down to 20 hours! But we shall see! Up next now is Christmas, which we are very happy Janessa is well(knock on wood), and we can enjoy it with our families!
Thanks for reading
Marybeth
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