Peanut has been doing very well the last few days and continues to gain weight – 4lb 5 oz as of yesterday. Little things are signs of big progress – recently, she’s starting to wake up hungry and take at least a portion of her feedings by bottle – earning her the nickname “Rock Star” by her nurses. (Though the one bottle I fed her wore her out so much that she slept right through her next feeding and needed to be feed by tube.) The doctors have been happy with her ability to digest the milk so far, but are still watching how the loss of intestines will affect Peanut nutritionally.
Until Peanut is able to get up to “full feeds”, she is receiving a majority of her nurtition & lipids (good fat) through TPN – Total Parenteral Nutrition or IV Nutrition. The doctors are also keeping an eye on how her short intestine, along with being on TPN effects her other organs, like her liver. Peanut’s labs recently showed that she had high liver enzymes. This means her liver is working too hard to move bile through the ducts to the gallbladder and small intestine. Bile helps the intestines breakdown fats (like the lipids found in TPN). On Monday, she started on a medication called Ursodiol, and in one day it brought her enzymes back to a normal level. As a precaution, she will likely continue on this medication until she’s completely off of TPN.
Peanut also had her eye exam yesterday for Retinopathy of prematurity, also called ROP. ROP is a disease that affects the blood vessels in the retina in a preemie’s eyes and can cause problems ranging from nearsightedness to blindness – just think of all preemies you’ve seen as the young kids with coke-bottle glasses. Luckily for Peanut, her eyes checked out just fine.
Now that things have calmed down a little bit, we’d had time to notice some of the more unique things in Peaunt’s room – one of those things would be “the Zaky”. You might have noticed the big blue pillow-like thing in some of the pictures we’ve shared – That’s “the Zaky”. Think of it as a large arm length glove made out of a soft blanket and filled with the same material as a Beanie Baby. During some treatments in the NICU, babies can’t be swaddled (like when Peanut was under the bili lights or when she had her silo), so a Zaky is used to comfort them and give them the sensation of being held. I’m not sure why it has fingers – apparently they used to make them in a tan (flesh) color, too. Creepy. I’m just glad that Peanut seems to be comforted by it.
Peanut sure looks cute in her new clothes. I’m glad the “Zaky” is keeping her snuggled during the day. Grandpa says she would be a Rock Star even if she didn’t eat!
Wow, 4lbs and 5 oz. you keep it, Peanut!
Way to go, peanut!!!