8.27.2015

10 Months Old


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 Carlee while she eats. Carlee acts hungry, sucks, and swallows just fine, but based on some sounds Carlee makes while she is eating the speech pathologist thinks Carlee may be experiencing minor reflux/aspiration which gives her discomfort and makes her not want to eat. So she recommended that Carlee'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 Carlee 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, Carlee 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.


Carlee 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 Carlee is progressing and so she won't be coming quite as often any more.


This is Carlee's physical therapist, who also comes weekly. She says that Carlee'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 Carlee 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 Carlee 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 Carlee 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 lifelong 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 Carlee 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!

8.03.2015

9 Months Old

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 Carlee and spend so much time with us at each monthly clinic trying to figure out the best plan of action for Carlee. They value our input and working to keep Carlee healthy truly feels like a team effort. Carlee has so many amazing people that love and are looking out for her!

Developmentally Carlee 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. Carlee's GI doctor sends out a nurse weekly to draw Carlee's blood for labs. In this picture the nurse is drawing cultures on Carlee'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 Carlee. 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. Carlee 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).

Carlee loves watching all of the neighbor girls play perched from her little excersaucer on our porch. They all come running whenever I bring Carlee outside and like talking to her in their baby voices.

This is Carlee'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.

Favorite quote this week:
"Be a warrior, not a worrier."


Life rules!

7.01.2015

8 months old


This little fighter is 8 months old! Every day is a battle for her little body, but she has come so far and is doing so well! She weighs 11 lbs. 12 oz. now and just sprouted her first tooth on the bottom. We didn't have a single E.R. visit this month (yay!), which is so fantastic for her! We were hoping she'd be bumped down to 20 hours of TPN, but she's still not eating quite enough by mouth (still around 35-40 mls per bottle) to have her TPN decreased, so we're still running her on 21 hours of TPN a day. It's hard to know for sure, but based off her weight gain, labs, etc. her doctor estimates her intestines are working at about a 50% efficiency, meaning she is only absorbing about 50% of the calories, vitamins, minerals, etc. that she is eating by mouth, so the TPN really is what is keeping her alive and thriving right now. Hopefully as her oral feeds increase, her intestines will adapt and start absorbing things better so she can be weaned off the TPN, but only time will tell.


She is rolling over both ways--tummy to back and back to tummy--and has started to really enjoy playing on the floor now that she can move around a little better. Recently she has developed restless leg syndrome--I'm sure due to some of her nutritional deficiencies--and is always kicking and rubbing her legs together like crazy, so much so that her ankles have started bleeding from all of the rubbing. She's not quite sitting on her own yet I think because her little tummy muscles are still a little weak from being cut into so much with all of her surgeries, but she's so close and will get there. 


Funny story: So this awesome gal was one of Carlee's favorite nurses in the NICU. Come to find out her daughter has been in Bryson's 2nd grade class all year and we had no idea until we saw each other at an end of year class awards ceremony. What's even crazier is that she only lives a few doors down from us and we had no idea! She usually worked the night shift while Carlee was there, so Mike knew her a lot better than I did, but how crazy is that! Such a small world! She loved hearing about how well Carlee is progressing and it was so great to talk to someone who actually "gets" all of Carlee's medical issues.


These two awesome people are Carlee's dietitian (left) and G.I. doctor (right). They are fabulous and work with us so closely to keep Carlee healthy. Her dietitian calls me weekly to check up on Carlee and to see what adjustments need to be made to her TPN to keep her growing. My degree is in dietetics, so I've really loved working with her and being able to apply my education to helping Carlee. Her doctor spends so much time with us at each monthly appointment and genuinely shows he cares about her development and progress. They have been so great!


Lilly loves to help me prep Carlee's TPN kits. I put all of the supplies needed to unhook her and hook her back up in little pre-prepared baggies so that all of her supplies are prepped and ready to go when we need them.


Adding a child to our family with a rare chronic illness and so many special needs has been a pretty overwhelming adjustment for our family. Our lives are VERY different than they were before adopting Carlee. We've had to make a lot of sacrifices and have had to give up a lot of things that we love doing. The things stated in this article are SO TRUE about how life changes and the feelings that come with a special needs child. It's the hardest thing we've ever had to do, but at the same time has been the absolute most rewarding experience of our lives. She is teaching us things we could have learned in no other way. She is worth every sacrifice, every messy blow out, every E.R. visit, every hour lost of sleep, every sterile dressing change, every doctor visit, every dose of supplements, every homecare pharmacy phone consult, every laundry load of poop covered clothes & blankets, every exhausting TPN hook-up, every homecare nurse visit, every homecare delivery, etc. This little angel is worth EVERY piece of it! We feel blessed, not burdened by Carlee and are so grateful to everyone in our lives who have been there to support us in this journey. Thank you for loving her and supporting us. We couldn't be doing this without you!

Favorite quote this week:

"Difficulties allow us to change for the better."

-Thomas S. Monson

Life rules!



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