Briella's Journey

Tuesday, October 4, 2022

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

Tuesday, March 3, 2015

Briella's 2nd Birthday Party Photos

Last year we had Briella's first birthday a month early so we could celebrate with family before RSV & flu season started. This year we were able to celebrate on her actual birthday (Oct 4). We rented a bouncy house and had lots of pink & gold desserts. Briella had so much fun, it was the perfect birthday. She was able to have fun all day.

2nd Birthday Girl!

I kinda have a thing for desserts ;)

Dessert table

Sugar rimmed milk bottles

Her own cake

2nd Outfit, it says "Birthday Girl Briella" & has the picture that was on her invite

Someone enjoys the Bouncy House!

Weeeeeeeeeee!!!!!!!!!!

Tasty!

Playing with her bestie (nicu neighbor)

Reading a card

Monday, February 2, 2015

All things Brie Update

I am so sorry it's been so long since I have posted! We have (knocking really hard on wood) been so lucky to have had a really healthy winter so far. Briella had strep throat over New Years, but that's about it!! I will make a 2nd post for all Briella's 2nd birthday pictures. Thanksgiving was celebrated at home since some of our family had been ill too close to the day. We did get to celebrate Christmas with our normal traditions. It was Briella's 1st Christmas with all the family. She got to go to her Great Grandma's house on Christmas Eve & then visited both Grandparent's house on Christmas Day. She tore into the presents and totally had the hang of opening presents since she had great practice on her birthday in October.

On January 13th, Briella graduated from her Special Care Clinic at the Children's Hospital. The doctor scheduled another visit to see the OT the next day about Briella coughing while drinking water and juice. She doesn't cough with Milk or PediaSure. Well we found out the Briella is aspirating when drinking water/juice as it's thinner then milk. But her cough saves most of it as she coughs it back up. Apparently her tongue doesn't thrust to move the food or liquid to the back of the throat, it just lays flat. Try to swallow without using your tongue-it's hard. But this kiddo has taught herself how to eat without using it! We've also realized that this is probably causing an issue with her speech as well, not using her tongue. So we were given a lot of exercises and therapies to strengthen that tongue. We were given until the Spring to get her to stop coughing/aspirating before they do a more intensive therapy 3x a week (which we hear includes shocking her throat muscles.)

We were also sent to an ENT last week. At that visit the doctor was concerned that Briella has something called a Laryngeal Cleft (in her throat.) So today we will have a swallow study done at the hospital. Then, Briella might be having surgery to put a plumper in her Laryngeal Cleft. That is a tenporary fix. If it works and she stops aspirating she will have the permanent surgery to fix it.

At the ENT visit, the dr and NP heard a murmur in Briella's heart. Briella is seen frequently and has never had any other issues with her heart since she was cleared of her PDA in the NICU. So of course this was very alarming to us. This morning we had her Cardiology appointment. Briella had an EKG, which showed a normal heart beat! She then had an echocardiogram, which showed a completely normal heart with NO congenital heart defects!!!! She does have two new heart murmurs, both innocent! God is good!!!!! I had been in such high anxiety fearing the worst. But my father told me over and over that god saved Briella and he wasn't going to let us down now.

There had also been some concern about Briella's changing muscles. With her Cerebral Palsy she has tight muscles on the right side. Well within a matter of days her left leg became pretty tight, more so than her right side. So we had her semi annual Rehab Clinic visit (CP clinic) moved up from the end of March to this last Friday. We brought in her MRI that she had done in the NICU before she came home. Since it was a different hospital they didn't have the record. So our doctor viewed it and did confirm what we knew about the left side brain bleed, which had resolved in that MRI. He also found an area of brain damage. The GREAT news is the area affected does NOT control thoughts or emotions or cognitive! We already had a pretty good idea that Briella wasn't affected cognitively as the last couple months she has shown as that she is smart! She has become a chatterbox and has such a since of humor! She plays tricks on us and laughs. Anyways, the area of (small) damage controlls her movements and reflexes. So the dr said she will have trouble walking. But she walks!! Praise God! She will wear her braces, but down the road probably only need one, for her right leg. We also have discovered that her right arm is also more involved than we knew. But it has great range of motion! The doctor thinks the left side has become more tight do to Briella's growth spurt. She is now 26 pounds!!!!! And 33 inches tall. He said that growth spurts are going to be hard on her muscles due to the CP. But overall she is doing so amazing. She doesn't even need a follow up MRI at this point. praise God.

We just need to get passed the aspirating and she will be back to having a clean bill of health!!

Thank you for praying for our little girl. Prayer works!!