Briella is 10 Years Old!

I knew I was going to make a 10th birthday blog post, but I have been putting it off until the last minute. It is hard to come back here and feel everything. It reminds me of just willing her to live and pleading for prayers. And the unknown of what was next. I am not sure where to start since it has been 8 years since I last posted, so let's just start at the present.

Briella is 10!!

In the photo Briella is holding of herself, the picture is larger than she actually was by about 4 inches! 

The photo in the frame. 12 inches long, 1 pound, 6 oz

When covid hit, we were pros at isolating. We did it every year from October-May since she came home from the hospital. We would stop going inside public places, move to online shopping & limit visitors. We kept such strict isolation with covid for over 2 years. Both of our daughters switched to virtual school. Briella left school as a 1st grader and she just went back to in-person school this year as a 4th grader! We also moved during the pandemic, so she is in a new district and is the new kid at school. She is in a typical classroom with everyone else! When we received the Cerebral Palsy diagnosis, we did not know what the future looked like for her. It has not been an easy road, but we are so proud of Briella. She is amazing.

While isolated, we all had to give up seeing our friends & family in person, Briella was able to continue to FaceTime her cousin across the country. They have become besties and are able to play together almost as if they were in person. Thank God for technology! 

Briella loves building with Legos. That has been her go to activity for 2 years now. She also likes to play pickleball and basketball, she took swimming lessons this summer, started practicing golf, likes to fish, boat & swim in the lake, and go on hikes. She loves to find a good walking stick on her hikes and search for fossils. She would love to one day go hunt for dinosaur fossils. It's on our bucket list to take her to western Colorado to a place where she can dig for them. Before covid she played 2 years of softball. She loves playing with her 2 dogs. Briella has an awesome knack for telling you animal facts. You name it & she can rattle off an entire encyclopedia of knowledge about the most random animals. 

She has traveled so much! One summer, we did a 10 week European road trip! She has been to France, Italy, Switzerland, Germany, Austria, Liechtenstein, Monaco & the Bahamas. She has hiked a mountain in Colorado, swam with dolphins & pigs in the Bahamas, played on the beach in Hawaii, DisneyWorld, NYC, DC...we have really tried to show her the world we told her about while sitting in the NICU, begging her to live to see all the amazing places there were. I just couldn't understand how a baby who had never experienced happiness or joy could fight through all of this pain and everything she was going through. So I just told stories of the places she would go. We love going back to France to see my family. We also love to go to the Amalfi Coast. Those are our favorite spots to visit as a family. Briella loves visiting Natural History Museums with Vienna, Austria being her fav. She tells a story of how she got bit by a shark in Vienna haha. There was a large shark jaw & lil Miss Briella put her head inside it, I guess to get a closer look, and the teeth scraped her. So in her 5 year old brain, she was bit by a shark. You can see more of her travels at our travel blog, OurKidsTravel

The pandemic has halted our traveling. We need to be close to her healthcare team. Briella being born before her lungs were developed & previously ventilated makes her high risk. She spent the 1st two years of school always pretty sick in the winter months. I am hoping that the last 2 years we were isolated allowed her lungs to heal & grow healthy! We shall see! Briella is currently wearing a mask at school, and it has worked. She has not picked up any illness and has stayed healthy. Being the new kid and wearing a mask has not been the easiest to make friends. The same goes for her sister who is now in High School & wears a mask to protect Brie. 

Briella had to have her liquids thickened until 2018. She aspirates when drinking, but she is old enough now to clear it herself. She had continuous therapies until the pandemic began. The hardest one was VitalStim. She basically had targeted areas of her neck & esophagus muscles shocked to retrain them to swallow correctly. 

All of the harsh therapies are in the past. Today Briella is your pretty typical 10 year old girl. Eager to make a ton of friends, always wanting to change up the decor in her bedroom, getting into big sister's makeup, avoiding chores...We are so so blessed. I am thankful everyday for Briella. She is our miracle & I will be forever grateful for all of your prayers that got us through the hard times. <3

For her 10th Birthday, Briella did a book drive for her NICU. She collected 120 books to donate to families that have a baby admitted to the NICU. 120 books represent the 120 days she was in the NICU before she came home to complete our family. She also did the same book drive for her 5th birthday! Every year we also raise money for the March of Dimes. Without their research & development of a drug called Surfactant, Briella would not be here. Thank you to everyone who has donated books for her 2 milestone birthdays as well as your March of Dimes donations! 

Briella keeps her Amazon wishlist updated with her wants, you can find that here

If you would like to purchase a book for the NICU to donate to a baby, you can do that here

Our annual March of Dimes donation link is here

Here was the video we made for Briella's 1st Birthday: http://youtu.be/G-AsuWcmtL0

Briella, a couple weeks old in her Daddy's hands

                    

We still hold hands like this, she just holds my finger.

Footprints the size of a paperclip!

Picture from: Stephanie Photo KC

Here are some amazing posts to read back on to see how far she has came:

http://www.briellasjourney.com/2012/10/i-tried-to-tell-them.html

http://www.briellasjourney.com/2012/10/her-1st-day-update-on-her-delivery.html

http://www.briellasjourney.com/2012/10/day-10-first-time-holding-her.html

2 Steps Forward, One Step Back

We received really great news this week! Briella passed her hearing test in both ears!! Mom and Dad had been a little concerned about her hearing. She hadn't been responding to us when we talk to her, apparently she's just really tired. She also slept through her MRI and never woke up-but they put little yellow ear muffs on her.
The MRI results came back normal! They could see old blood from her brain hemorrhage. But nothing new!

Briella has been taking every bottle every time for days now. Her feeding tube was pulled out a couple of days ago. However, she is so sleepy now from all the energy it takes to get up every 3 hours & eat at least 60ml. Being sleepy causes her to not want to finish the full 60ml & then when we try to get her to take her full amount she has spells. She had a big one yesterday. Her discharge date WAS tentatively Wednesday. But we are now pushed back to next week (hopefully). Also, she has to stay because her lack of weight gain is now an issue. Since she is waking up around the clock she is burning so many more calories than before when she just slept through her feedings & it was just sent to her belly by feeding tube. Brian & I & her nurse made the decision to put the feeding tube back in for a couple days. We are hoping that her sleeping through a couple feedings will help her alert level so she can have quality bottle feeds when she is awake with no spells. We are also hoping it will help her gain weight again. I feel like we made the right decision & she will be back to her great ways in a couple days.

Please pray that the ROP goes away on its own & that Briella continues to stay healthy. And also please say a prayer for Briella's sister Aubrey who is having her tonsils taken out tomorrow morning.

Pictures are her ear muffs from MRI & her without a feeding tube!

Thanksgiving Came Early For Us!!

Briella's heart PDA/murmur is sounding softer!! I am sooo happy I could scream. She had a new nurse last night & a new one this morning. Neither nurse even charted a murmur on her paperwork because they didn't hear one! I told the day nurse what the dr said about it sounding softer and she said she didn't even know she had one. I told her that for the last month everyone has said how loud it is when they listen to it. So it sounds like a huge improvement. Thank you God!

Briella is a whopping 1 pound 15 ounces! She looks so big to us! She has stayed the same weight the last 2 nights. Now that her murmur is closing they can up her dose of food quite a bit. They were restricting her liquids to try and prevent fluids in the lungs. Hopefully now she can start putting on the pounds :)

Briella had her 1 month head ultrasound today.....and..... Her brain bleed is gone!!!!!!!!!!!!!!!!!
No evidence of blood in her brain at all!

I finally caught her smile on camera!!! I had to sit with the camera pointed towards a mirror & tell her story after story. The one that got her to smile was when I was telling her about the play area I was making for her & her Sissy. I told her that her sister can't wait to read her books.

Many prayers of thanksgiving from our house tonight!!!!!!