This cutie patootie is 9 months old! She currently weighs 12 pounds 1 ounce and is 1 foot 11 inches long. Her head and height are doing awesome and are quickly catching up to where they should be, but she continues to struggle with gaining weight. She should be gaining about 15-20 grams a day and she's only gaining around 6 grams a day. Her dietitian thinks it might be about time to have a feeding tube placed to help with her weight gain, so that may be happening in the near future.
Another major concern right now is that her liver enzymes aren't doing that great. Her total bilirubin is at 5.7 (normal is 0.2-1.3), her ALT is 302 (normal is 5-45) and her AST is 261 (normal is 20-67). She's starting to look a little jaundice because of it. Being on long term TPN/lipids is known to damage the liver, so it's not surprising that her liver is starting to show the effects of it. It's such a tricky balance because she needs the TPN/lipids to survive, but the very thing that is keeping her alive and helping her gain weight is the very thing that is killing her liver. So her dietitian and doctor are constantly tweaking her TPN formula to keep things balanced and to preserve her liver the best they can. Have I mentioned how much we love her GI doctor and dietitian? They are beyond amazing! They are so concerned about little Carly and spend so much time with us at each monthly clinic trying to figure out the best plan of action for Carly. They value our input and working to keep Carly healthy truly feels like a team effort. Carly has so many amazing people that love and are looking out for her!
Developmentally Carly is doing awesome! She is right on track based on her adjusted age (6 1/2 months) and is doing just about everything a 6-month-old should be doing. She's rolling around like crazy, which is awesome, but also a little unnerving to me because I'm constantly worried about her cord getting wrapped around her neck in the process. She loves playing with her toys and tries to scoot herself over to toys out of her reach. She still is not quite sitting on her own yet but is SOOOO close! My favorite part about her age right now is her cute giggles when you make her laugh.
We get lots of nurse visits at our house. Carly's GI doctor sends out a nurse weekly to draw Carly's blood for labs. In this picture the nurse is drawing cultures on Carly's line because she was running a slight fever and was a little sickly looking last week, so her doc just wanted to make sure she didn't have a line infection. Luckily it was just a little virus that antibiotics seamed to help clear right up. Every time we take her in, her doctors are amazed that she hasn't had a line infection yet. Line infections are so darn common in kids with central lines, that it's pretty remarkable she hasn't had one yet (knock on wood!).
We've started having an occupational therapist come to work with Carly. This pic was from her evaluation last week to see where she needs help developmentally. So far she is right on track physically but it's just her eating and weight gain that is lagging. Carly has always been a rock star at sucking and swallowing her formula, but in the last few weeks it's like she wants nothing to do with her bottle. She downs her first bottle of the day (around 5:30am) and her last bottle of the day (around 11:30pm) and sucks them both dry. It's just all the feeds (4-5 of them) in between those two feeds that she doesn't seem to want anything to do with. She'll take a couple of sips and then spits out the nipple like she's had enough. She just sprouted her 3rd tooth, so I think the issue might have something to do with her teething right now, but we'll see what the occupational therapist thinks when she comes this week to work with her on feeding. Hopefully we can get this figured out so we can start fattening this little girl up without having to put her on a feeding tube!
Although she's not eating too much of her bottle right now, she sure loves her solids! She was on my lap while I ate dinner at Mike's parents house and her little death grip caught hold of the cob of corn I just finished and she started gnawing on that thing like crazy! She's really digging banana's right now, and I'm loving the way they thicken her stool right up because it's usually very runny (sorry if TMI...hehe).
Carly loves watching all of the neighbor girls play perched from her little excersaucer on our porch. They all come running whenever I bring Carly outside and like talking to her in their baby voices.
This is Carly's happy place. She loves to lie on my chest while I pat her bum. If she's ever inconsolable, the trick to calming her down immediately is lying her on my chest and turning on a little "Glorious" by David Archuleta...hehe. It seriously works like magic every time! I played that song for her every single time I visited her in the NICU, so I think it became a comforting song for her. She seriously loves it.
I recorded a little clip of how she magically calms down when she hears that song, but in the process of moving the video from my phone to the computer it somehow got deleted, so I'll have to try to record it again. This clip (sorry about the awkward angle) from after she was calmed down is the only clip that survived the transfer. Just imagine her going from screeching inconsolably like a velociraptor (as Bryson calls the sound of her cry) to how calm she is in the video in a single second. I'll try to get another clip of it to post next month because it's pretty darn amazing. Thank you David Archuleta!
This little girl is such a light in our lives. There truly is something very special about her soul. She is a little warrior and I admire the strength she has to endure all that she has to endure each day. She does not have an easy life by any means. Sometimes I feel so sorry for all she has to go through each day, but whenever I have those feelings, I also somehow sense that she chose this trial before she came to earth and that she's knows that by going through all she's going through that she's helping others come unto Christ. She is one amazing little girl and we feel so blessed to get to learn from her sweet spirit daily.
"Life is not a competition with others. In its truest sense it is a rivalry with ourselves. We should each day seek to break the record of our yesterday. We should seek each day to live stronger, better, truer lives; each day to master some weakness of yesterday; each day to repair past follies; each day to surpass...ourselves. And this is but progress."
