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!



5.27.2015

7 months old

This little lady is 7 months old! She's slowly gaining weight and at her last weigh-in a week ago weighed 10 lbs. 13 oz. She's 1 foot 10 inches long and is still wearing 0-3 month clothing. Her head and her height are quickly catching up to where they should be, but her weight is still lagging a bit. Thankfully she has been eating SO MUCH better since last months post and now averages between 35-40 mls per bottle. We still add microlipids to each bottle to give her some extra calories. Her TPN has been reduced to 21 hours a day now (yay!). The goal in reducing her TPN is to try to have her feel a little more hungry so that she'll continue to up her feeds by mouth.

At her nutrition clinic this month her dietitian said she felt Carlee was ready to start solids (yay!). We've started her on veggies and meats only as her little gut won't tolerate fruits and carbs well. She's off all meds (yay!) but still takes several supplements (iron, calcium & fish oil) by mouth. She'll always need to be on a variety of nutritional supplements throughout her life since she's missing so much of her small intestine. Overall she is progressing so incredibly well! She's taking her sweet ol' time gaining weight, but slow and steady wins the race!
Carlee has so many medical supplies that I bought this rolling cart to store everything in. We keep it in a corner in our kitchen and it has really helped us keep things more organized. Mike thought it was hilarious how excited I got when it came. I seriously felt like a kid at Christmas! It has been so great!

Whenever we are sick we have to mask up around Carlee. I do my best to keep Lilly masked up when she has a bug, but it can sure be hard to get her to keep it on! A few weeks ago Lilly somehow broke Carlee's line while I was on a phone call, so we had to take another fun little outing to the ER/RTU to get it fixed. Our home care nurse said he has patients that have had 15-20 breaks, so I think we're doing good with only 3 repairs so far. I'm getting to know the staff at the RTU very well...hehe!

Cute Carlee hanging out with me in the mother's room during sacrament meeting.

Lilly loves to hold Carlee. Bryson, not so much. He's usually too busy playing outside with friends or building something out of Legos, but he did sit and hold her the other day for a second, so I had to snap a picture of the rare moment.


Carlee's new favorite thing is this bouncer. She's so small that her feet don't touch the ground yet, so we put a pillow underneath so she has a way to bounce. She just LOVES it and bounces around like crazy.

Sometimes she wears herself out bouncing and falls asleep. You'll notice in this picture her new coiled line, which we are loving. She also just got new updated pumps which have been so nice because they prime themselves (yay!).

Carlee spiked her first fever last Thursday afternoon. Whenever Carlee gets a fever of 100.4° or higher we're suppose to take her to the ER because it might be a line infection. I was pretty sure the fever was related to the cold she had, but I called her GI doctor just to be safe and he said to take her to the ER immediately. When we got up to Primary's they drew her blood for cultures and swabbed up her nose so they could determine whether the fever was due to a line infection or just a virus. Cultures take 24-48 hours to grow, so they admitted us to the IMSU overnight so they could start her on antibiotics and keep an eye on her until they got the results back. The nurses there were just absolutely amazed that Carlee hadn't had a line infection yet. They said they see short gut kids in there all the time with line infection after line infection, so I was just praying this wasn't going to be Carlee's first one. Fortunately, it ended up just being a respiratory virus and so they sent us home. We take so many trips to the ER with Carlee that I've realized I need to have an emergency to-go bag packed at all times with stuff we might need if we have to spend the night so I can just grab it and go. I didn't have one packed for this hospital trip, but I'm now all packed and prepared for the next one.
Carlee loves Skyping with Unky and Nonni who are serving a mission in Budapest, Hungary. They get home in a few months and are so excited to finally get to meet Carlee in person.

I just love this little girl to pieces. She has hiccups in her progress every now and again but overall she is progressing so amazingly well! She has completely stolen my heart and I feel so blessed to be her mama.

Favorite quote this week:
"Children are NOT a distraction from more important work.
They are THE MOST important work."
-C.S. Lewis

Life rules!


5.17.2015

This Girl

This blog (& our life) has been so consumed with all things Carlee over the last few months that Lilly really hasn't gotten much screen time on this ol' blog, so today I'm going to do a little catch up on all of the wonderful things she's been up to.
(Our neighbor is learning photography and asked our kiddos to pose for some photos so he could practice his skills and he captured this adorable shot of Lilly. Isn't she a doll! I could just eat her up!)

Hmm, so where to start?  I guess I should begin with Lilly's greatest accomplishment. She's potty trained! Yay!
I was bound and determined to get her potty trained before we brought Carlee home from the hospital in January because I was not about to have two kiddos in diapers. So we hit it hard and she took right to it! As soon as I introduced her to undies, she wanted nothing more to do with diapers. Like all toddlers, she still has accidents every now and again, but she really has done so great!

Lilly love, love, LOVES singing The Wheels on the Bus, Finger Family, and the Put On Your Shoes song. Here's a cute video that I shared on Facebook of Lilly singing the Finger Family song with Mike.


She loves going on bike rides around our circle on daddy's handle bars:

For some reason Lilly occasionally roams the house at night, so we never quite know where we're going to find her in the morning. Sometimes we find her on the stairs, sometimes in Bryson's bed, on Bryson's floor, in our bed, on the floor next to our bed, etc.

I bought her some cute new bedding and that has helped her want to stay put in her bed a little better, but getting her to stay in her bed all night is still a work in progress.

Lilly absolutely adores Carlee and asks to hold her several times each day.

Lilly changes her clothes at least ten times a day. This is her modeling an outfit she put together wearing her swimsuit:
...and here's another cute one of her modeling our neighbor's sunglasses:

Bryson has started to tease Lilly like all good big brother's do, so I'm constantly getting serenaded by their bickering. It's awesome (yes, I'm being sarcastic). Anything Bryson has, she wants. Anything Bryson does, she wants to do as well. I've learned that the very best way to get her to eat her veggies, is to simply have Bryson eat his...haha!

As cute as she is, she very often looks like a little homeless child because she likes to pull her hair out after I fix it and change her clothes after I dress her.

I had my sis-in-law babysit her while I took Carlee to a doctor's appointment the other day and apparently they wore her right out because she fell asleep just like this at the counter after I brought her home:
A few other cute things about Lilly:
  • she loves to put the forks on the table at dinner time--but don't ask her to say the word fork because it comes out as FU**. She's still learning how to properly pronounce that word.
  • she loves the color pink
  • she loves to play cars
  • she loves to eat nuts--especially pistachios
  • she talks in a super quiet voice
  • she is the most polite little girl and never has to be reminded to say "thank you"
  • she LOVES to dance
  • she is completely terrified of car washes, having water poured over her head, and hair dryers
  • she calls pancakes "hickey who's" (sticky hands) because they give her sticky hands. She hates having sticky hands.
We love her to pieces and feel so blessed to have her in our family.

Favorite quote this week:
" A flower does not think of competing with the flower next to it. It just blooms."

Life rules!

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