12.09.2014

6 Weeks

Our sweet Carlee is 6 weeks old and now weighs a whopping 4 lbs. 1 oz. She's starting to really chub up and is looking so good. She needs to weigh at least 5.5 lbs before they will do the surgery to re-connect her intestines, so we are just patiently waiting for her to grow and gain weight so they can get that scheduled. She's had quite a few apnea and bradycardia episodes (periods where she has stopped breathing), which have been kind of scary. They were pretty consistent for about a week, but she isn't having them as much any more and seems to be doing much better.

She has been sucking really well on a Binky and loves it when the nurses put chap stick on her lips. So for Christmas we plan to get her some yummy flavored chap stick so she has some fun flavors to enjoy. Her heart murmur has all but disappeared, so that is good news. They also do regular tests on her eyes because the oxygen can cause eye damage and vision loss. So far her eyes are looking really good and don't seem to have suffered any damage yet. The picture above shows her on a smaller nasal cannula, which is what she is currently sporting.

Her feedings are going really well and she is absorbing about half of the breast milk they are putting in her through the feeding tube (the tube you see going into her nose). They are gradually increasing the volume of her breast milk feedings and as they do that, they are gradually decreasing the TPN. The goal is for her to be completely weaned off TPN by the time she goes home from the hospital. She still has the little stoma bag that her stool is going into and that will be removed once she has the surgery to sew her intestines back together. The doctors haven't given us a time frame of when she'll be able to come home yet, but we're guessing she probably has a good two months or so before that will start becoming a possibility. She still has quite a ways to go, but she really is progressing so incredibly well and our prayers are being answered.

Here's a little video of Mike Skyping with his mom, who is serving a mission with Mike's dad half way around the world in Budapest, Hungary. It is totally killing them to be so far away right now but we truly feel that their service and sacrifice is blessing little Carlee in amazing ways and helping her to heal.


Mike still visits her most days after work and I go every morning and hold her skin-to-skin for about an hour. I love that time with her and I can tell she really looks forward to it too. I have a little routine that I do when I hold her. First I tell her about what we've been up to back home and about all the fun/silly things Bryson and Lilly are doing. Then I play her some music on my phone, which she just loves. While I talk to her and play her music, she just looks up at me and all around the room with her big dark eyes and I can tell she really enjoys it. Then she falls asleep for the rest of the time and I relax, read the news, read scriptures, answer emails, Facebook, etc.
While I spend that time with Carlee every day, Lilly gets to spend time with her cousins. My sister Rachel and sister-in-laws Michelle, Heather & Kellie have been so amazingly generous and rotate days watching her so that I can spend time at the hospital. It has been such a blessing to me and to Carlee and I am so grateful for their willingness to help out like they have.

Bryson and Lilly are really learning their way around the hospital. We bring them up on the weekends and they love it. Lilly loves pushing the buttons on the elevator and Bryson loves hanging out and playing games with the amazing volunteers in the play room. Seriously, the volunteers are incredible! They all know Bryson and Lilly by name and we appreciate them so much!

I know all I've really been posting about is Carlee lately, but Bryson and Lilly have also been up to a lot of great things, so I'll try to get a post up soon about them.

Favorite quote this week:
"The only person you should try to be better than, is the person you were yesterday."

Life rules.

12.05.2014

Bryson's Christmas List

So I just had to share this little experience because it has touched me so deeply tonight. This week Bryson decided he needed to write Santa a letter to be sure Santa knew everything he wanted for Christmas this year. This is his letter:

It's a list of a bunch of Ninjago Lego mini-figures he wants but it honestly all just looked like a foreign language to me. Here's the translation (as best as I can tell...haha):

Dear Santa,

For Christmas I want 2 Pythors, 2 Skalidors, 2 Skales, 2 Acidicus, 2 Fangtoms, Sensei Wu, Kai ZX, Zane ZX, Jay ZX and Cole ZX, Nya and the 4 Fang Blades weapons. I want 2 Toxic Vipers, Golden Fangpyer Staff, 2 Golden Constrictai Staffs, Golden Hypnobrai Staff, Dragon Sword of Fire, Scythe of Quakes, Surikens of Ice and Nunchucks of Lightning.

So I mailed it off to the North Pole just as Bryson asked me to. A few days later, he received this reply in the mail from Santa:
Surprisingly, Bryson took Santa's reply very seriously. I saw him re-reading it over and over again and seemed to really be thinking about it. Then today Bryson told me he had a new letter that he needed me to mail to Santa "ASAP." Here's what it said:
Translation:
"For Christmas I actually want $70 dollars to give to the hospital. I want to help all the sick people. But it would be nice to have all the Lego's. But this Christmas present is better."

FYI: $70 is what we've told him his Christmas budget is ($10 for each year of age). When I read it, tears started streaming down my face and I was completely speechless...and to be honest, also quite shocked! I asked him if he was really being serious and if he was really willing to give up everything on his Christmas list to help the sick kids at Carlee's hospital (Primary Children's) and he looked into my eyes with absolute sincerity and told me "yes."

For the past 15 or so years, I've kept a book of hero's where I list the names of people who have touched and influenced my life in great ways and have helped me become a better person. This 7-year-old kid made it into my book of hero's tonight. His simple choice was a great reminder to me of what it means to truly "share The Gift" this Christmas and always. I am so grateful not only for Bryson, but for all of the sweet little children that surround us on earth because they are often so wise beyond their years. They teach us, they humble us, and they show us through their innocent examples how to be more like the Savior and bring glory to His name.


Favorite quote this week:
"You don't have to be larger than life to be a hero, just larger than yourself."

Life rules.

P.S. Another Carlee update is coming soon!

11.25.2014

1 Month Old

This little lady is one month old today! She has gained one whole pound since birth and now weighs 3 pounds 4 ounces. She has also grown one inch and is now 15 inches long. They finally took out her breathing tube and she is now just using a nasal cannula, which she is totally rockin'. As you can see in the photo above (sorry about the poor photo quality), it is way too big for her tiny little face & nose but it's doing its job and she is liking it a lot more than the breathing tube, which she was always trying to pull out.

Here's Carlee making her video premiere (this was taken about a week ago before her breathing tube was removed):


They have finally started allowing me to do skin to skin with her, which has been so, so huge for me. I spend an hour every day snuggling her and it has been just what I've needed to finally bond with her and feel like her mommy.  She totally digs it too.
Mike got to hold her for the first time a week ago Saturday. This is Carlee's amazing nurse and respiratory therapist getting her positioned just right.
One proud papa.
Here's another picture before the breathing tube was removed. They started her on a very small amount of breast milk via a feeding tube, but unfortunately her remaining small intestine didn't absorb/digest any of it and it basically just went right through her and into her little stoma bag. So they've switched her to a more broken down "elemental" formula which she'll hopefully be able to digest better. They are still monitoring her heart murmur. They said it use to be a "moderate" heart murmur and now it's just a "small" one so it's improving and will hopefully resolve itself. If not she may need another small surgery to correct it. Overall, she is progressing really well and the goal right now is just for her to stay healthy and to GROW so they can sew her intestines back together in a month or so.
Bryson loves the playroom because he gets to play video games (which we don't have at home) and he also gets to play board games with the volunteers or with Mike. This kid loves Battleship and is a Monopoly genius.
Lilly loves to proudly show her cousins around the playroom when they come to visit. We always love having visitors.
Favorite quote this week:
"Live for a purpose greater than yourself."

Life rules!





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