This little fighter is 10 months old! She has gained a couple of ounces in the past month and now weighs 12 pounds 8 ounces. Her weight gain is still struggling due to poor eating so we've started working with a speech pathologist, who has been coming to our home on a weekly basis to observe Carly while she eats. Carly acts hungry, sucks, and swallows just fine, but based on some sounds Carly makes while she is eating the speech pathologist thinks Carly may be experiencing minor reflux/aspiration which gives her discomfort and makes her not want to eat. So she recommended that Carly's doctor prescribe a reflux medication and since starting her on that about a week ago, she has been eating SOOOO much better! It's been pretty amazing. She also ordered a swallow study that Carly will be having done in 2 weeks to see if that can pinpoint any additional issues that might be causing her poor food intake. We are crossing our fingers we've found the cause of all this and that she'll be able to start eating more and packing on the pounds now.
We are also very concerned about her liver right now. Her liver enzymes are still very elevated. Her total bilirubin two weeks ago was at a 7.1 (normal is 0.2-1.3), her ALT is at 379 (normal is 5-45), and her AST is at 360 (normal is 20-67). These enzymes are indicative of liver damage so it's concerning that they are so high. Her doctor took her off of her lipids/fats (the white line that was going into her heart) and now she's just on the TPN (the clear line). Since taking her off the lipids a week ago, her total bilirubin dropped a little to 6.4, which is good, but the other liver enzymes still increased. The problem with taking her off the lipids is that she really needs those to gain weight, so it's a slippery slope. Her poop has turned a pale yellow almost whitish color, which can mean that there is an obstruction in her bile duct or some type of gallbladder issue, so her doctor ordered an ultrasound on her gallbladder, which she will also be having in 2 weeks to see if we can figure out what might be going on there.
Other than all of that, Carly is doing awesome and has been sitting on her own for about 3 weeks now! She loves to sit and play with her toys. She also loves to sit in her high chair and eat her solids. Short gut babies can't have any sugar (not that I would give her much anyway), so her diet consists mainly of pureed veggies, meats, and non-sugary finger foods. The only fruit she can have are banana's, which she LOVES. She doesn't eat a ton of solids right now volume wise as she still really needs the nutrition and calories provided by her formula, but we still let her sit and play in her food and with her spoon during dinner time and try to make eating a positive experience for her.
Carly has a very busy schedule and gets lots of visits each week. This is her occupational therapist, who has been coming weekly to work with her. She has been very impressed with how fast Carly is progressing and so she won't be coming quite as often any more.
This is Carly's physical therapist, who also comes weekly. She says that Carly's gross motor skills are not too far behind where they should be and that she is making really fast progress. She's been working on helping Carly strengthen her arms and working with her on weight transfers to get her ready for crawling.
When I see babies without a line and backpack attached to them, it almost seems weird to me because I've grown so accustom to having a baby with those things. Picking up the backpack along with Carly really has become second nature to me. We still have to be careful about not getting the line caught on doorknobs, cupboard handles and things like that, but through trial and error we've learned how to tape her dressing (the bandage on her chest that covers where the line goes into her heart) in a way that helps prevent breaks when the line is pulled on, so that has really helped minimize our ER visits for line breaks.
I tried to get a better video of how the song "Glorious" by David Archuleta immediately calms Carly down and this is the best I could do. Usually I'm holding her when she needs to be soothed, which makes it hard to take a video, but this does show how hearing that song immediately gets her to stop crying. She seriously loves it.
Finalization update: we've had a lot of people ask us when her adoption will be finalized so we can have her blessed and sealed to us. Finalization usually happens at 6 months but because we've been trying to get her qualified for medicaid before we finalize (she won't qualify anymore after finalization), it has postponed finalization a bit. This little girl has already had and will continue to have massive medical costs, so we are just trying to be sure we have all of our ducks in a row with medicaid/insurance before finalization. Our case worker at LDSFS has been amazing and has been working her tail off trying to get that all sorted out for us. It's a very long drawn out process and will probably take a few more months to get it all figured out and then we'll finally be able to finalize the adoption and have her blessed and sealed to us. In our supervisory visit last month, our case worker told us that Carly will be LDSFS's last and FINAL adoption! That's a pretty cool claim to fame to have! We sure love her!
Favorite quote this week:
"Between stimulus and response, there is a space. In that space lies our freedom and power to choose our response. In our response lies our growth and our happiness."
-Stephen R. Covey
Life rules!
