4.26.2015

6 Months Old

This sweet girl is 6 months old! She just started laughing, which has been so much fun. She can sit with support and her neck is really strong. She is constantly sucking on her hands and loves to follow us around the room with her eyes. Developmentally she is right on track based on her adjusted age. Growth wise, she's lagging a bit and hasn't been gaining weight quite as quickly as her GI doctor would like. She hasn't gained anything since last month and still weighs 10 lbs, which is somewhat concerning.

Carlee is suppose to be eating every 3 hours (minus one night feeding) to help her intestines grow and adapt but lately she just hasn't been wanting to eat as much as she use to with each feed. After a few sips, she just pushes the bottle out of her mouth and acts totally disinterested. So they have given us something called Microlipids to add to each bottle, which will provide more calories with the little bit she is eating. The goal is to keep her progressing along her adjusted growth curve--however, if she consistently falls below where she should be (like she did this time), they will have to put her on a feeding tube. We are really praying she starts eating better so we don't have to deal with a feeding tube in a addition to TPN.
Carlee chillin in her car seat while waiting for her doctor to see her.

At her last clinic (this is what her monthly doctor visits are called) with her GI doctor and dietitian, they were really impressed that she hasn't had a line infection yet. Line infections are extremely dangerous but also very common in short gut babies. I asked her doctor if he's ever had a short gut patient not get a line infection and he said "no." It's not an "if" she gets a line infection, but a "when" type of thing. Sooner or later she will develop one, so they've trained us on the symptoms to watch for. We've been told that if she ever develops a fever at or above 100.5° that we need to rush her to the emergency room immediately. Line infections can be life-threatening and usually require an extended hospital stay, so we are just hoping to thwart off her first one as long as possible.

My sweet niece Zyan has been volunteering her time while she's been off track to hold and care for Carlee. Since bringing Carlee home, it's been really hard to keep up with the housework (I'm seriously considering hiring a maid), so having Zyan help out has been so wonderful and has allowed me to get caught up on some things around the house.

Yummy.

Carlee is considered immunocompromised, which means she is at a high risk of getting infections because of her central line. We have to be so, so careful to keep sick people away from her, which is why we rarely take Carlee anywhere. We only take her to Sacrament meeting on Sunday's and to an occasional family gathering, but that is about it. If you visit us and you are sick, this is what you get to look like...hehe.

And here's a little cell phone clip of our beautiful Carlee just chillin.


We love this precious angel so much! I say this all the time, but she is truly changing us for the better. Change is usually hard and we often resist it and fight against it. We have certainly done that through this life-altering experience, but in doing so, have also learned that shifting our perspective from the now to the eternal makes ALL the difference in the world! We feel so beyond blessed to have been chosen to help this amazing little fighter along her earthly journey.

Favorite quote this week:
"You can't change the direction of the wind, but you can adjust the sails to reach your destination." 

-Jimmy Dean

Life rules!

4.22.2015

Eight is Great

This awesome kid turned eight years old on March 24th!  We just can't get enough of him. He has such a mature little spirit and is always keeping us in line. He just started cub scouts and loves it! He had a great well-child doctor visit and weighs 56 pounds (50%centile) and is 48 inches tall (17%centile). He's kind of a shorty, but totally owns it.

Here are 8 things you might not know about him:

1. He loves BBQ sauce! He puts it on just about everything.
2. He doesn't cry when he gets hurt...like ever! He only cries when he feels really sad about something (like when our exchange student left, or his grandparents dog died).
3. He can wear out the right knee of a new pair of jeans in a week.
4. He's kind of a germaphobe and won't share cups or utensils with other people.
5. He thinks Mike is really a kid that was teleported into an adult body (Bryson's very words).
6. He hasn't had a single cavity yet.
7. He can almost land a double front flip on the trampoline.
8. He loves to climb trees.

I tried to get him to pose for a cute photo and these are the poses I got...haha. Yes, he is definitely a typical 8-year-old.



We only do birthday parties around here on what we call the "big" birthday's (1, 5, 8, 12, 16, 18). The other birthday's we keep pretty low key. Bryson was SOOO excited it was a big birthday year so he could have his much anticipated party. He chose to have it at our house so he could invite more kids. He's so sweet and didn't want to leave any of his friends out. He had a Lego themed birthday party and got tons of Lego's, which he was thrilled with. Of course we had to do the spanking machine, a Hinckley family tradition.

We are so proud of Bryson for making the choice to be baptized. In our parenting we strive to follow the admonition of the prophet Joseph Smith when he said: "I teach them correct principles, and they govern themselves." We truly wanted baptism to be Bryson's choice, not ours. We've taught and prepared him but then left the choice to be baptized entirely up to him. He's been praying about it for quite some time and it touched my heart when he finally told me he felt it was something he needed to do.

Here's a copy of the baptism program (for records sake).


While we waited for Bryson to change his clothes after he was baptized, the Primary had everyone in the room write a letter to Bryson. That evening before going to bed, we sat with Bryson and read all of the letters with him. Man, talk about opening the flood gates. The letters were all so touching, but the letter that touched me the most was from his birth mom Kim. She talked about how the Holy Ghost helped her make the decision to place him for adoption and helped her know who she should pick to be his parents. We just love her so much for following her heart!

Here are a couple of shots of some of the people who came out to support him on his baptism day.
I'm telling you, Bryson is one lucky boy to have so many people to look up to. Each person in these pictures is an incredible example to him.


And here's our yearly video of Bryson talking about his life. We'll see how many more years he let's me do these...haha.
We love you to pieces Bryson!

Favorite quote this week:
"It is our choices...that show what we truly are, far more than our abilities."

J.K. Rowling

Life rules!

3.31.2015

5 Months Old

This gorgeous lady is 5 months old! She has finally hit the double digits and now weighs 10 pounds even. She is doing so incredibly well! She is still on TPN for 22 hours a day and is eating around 35-40 mL by mouth now. We disconnect her from her TPN around 5:30pm in the evening and then hook her back up to her TPN around 7:30pm. It's so nice to have her cord free during those 2 hours. As her oral feeds increase they will gradually reduce the number of hours she has to be on TPN each day until hopefully she'll be able to get completely off of it. Some kids with similar intestinal situations are off TPN in a couple of years. Others are still on it into their teenage years. We are definitely hoping it happens sooner rather than later, but only time will tell.

She has been all smiles lately and it has been so fun. She loves to suck on her hands, is starting to bear weight on her legs, and has a really strong little neck. Because of her central line we can't bathe her but she enjoys her sponge baths and the tummy massages I give her to help her scars heal.

She loves her grandpa

...and getting smothered with attention whenever we take her to family gatherings. 

We finally got the okay to start taking Carlee to church for a little bit. We've only been taking her to Sacrament meeting so far because it falls between her feeds. Feeding her in public places is kind of risky because she will usually have a major blow out with each feed, which equals a huge mess to clean up. You've never seen a real true blow out until you experience a short gut baby blow out. Wowzers! Believe me, it's something else! We usually go through many, many outfits, blankets, and diapers each day. Yesterday I put a brand new outfit on her and within 30 minutes it was covered in poop! Yeah, it was pretty awesome. This girl knows how to let it rip!


Whenever I take Carlee outside on the porch, she's like a little girl magnet and all the neighbor girls immediately swarm around her and start talking to her in their baby voices. They like to bring over their little crying doll that you can see in the picture. Carlee loves it when she hears the baby cry. It makes her smile.


This is how we look every Sunday evening when we do Carlee's dressing change & line cap change. We get the older kids tucked in bed first so we can do the change distraction free. We wrap Carlee's arms in the first part of a double swaddle so they stay down. Carlee usually stays pretty calm during the dressing change but if she starts to fuss, Mike's job is to give her a binky and keep her happy while I do the change. When we first learned how to change the dressing, it took us forever, but we've totally got the process down pat now.

Carlee has truly been such a blessing to have in our home. Yes, her care is far more time consuming than a regular ol' baby and sometimes her TPN changes and dressing changes come at very inconvenient times or when we are completely exhausted from the day, but she is so worth it! She is such a strong little girl. She has the scars to prove it!

Favorite quote this week:
"I've never met a strong person with an easy past."

Life rules!

P.S. I know this blog has been consumed by all things Carlee lately, but I promise to get some updates about all of the amazing things Bryson and Lilly have been up to very soon!

Related Posts Plugin for WordPress, Blogger...