SelfMade ElixCade

Update on Elix
Last night when we left he was somewhat doing okay. He was working harder to breathe. They called me after we got back to the Ronald Mcdonald House and they informed me that had to put him back on CPAP. I was just woken up by the nurses to let me know that Elix had to be reintubated due to his heart and lungs not properly working. I'll keep yall updated when I know more. Pray for our boy !!!

Elix had surgery today and is now resting in his room. Everything went okay.They are going to monitor him over night to see if he will need to go back on CPAP. Greatful there was no problem with extubation. Now to see what comes next. Please keep Elix in your prayers

Today we have another surgery to get through. Elix will have a gtube and nissin fundiplication. He has regressed on his eating to the point we have exhausted all options. The nissin will stop the reflux from coming back up his throat and the gtube will help vent the gas from the nissin and start to help him get to the volume of feeds that he needs to survive. He is still on TPN and Lipids due to his inability to eat. This should be a big step for him today and hope all goes well!!!

Living in this Muggle world. Just making magic 🪄🪄🪄

Elmo and Rosita came by to say hello to Elix today

Elix before and after eating for the 1st time!!! Slow to start but that's expected. 1st feed.. nothing. .5. The 2nd feed he tooka swallow and choked but got down 3mls. Last night he ate a full 5ml and kept it down. No throwing up!!! He had a big ol burp but did fune. Hopefully it stays this course. Only time will tell!!!

Big things starting this New Year!!! On my birthday we were finally blessed to be able to hold Elix in our arms!!! This was absolutely amazing and one of the best presents I have ever got 🥰

Happy 2024!!!

Happy 1 Month BIG Boy!!!
He is 6 lbs 3.5 oz
To think... they told me there was a 15% chance you'd survive and today your a whole month. You are so strong. The RT nurses have to fight you back so you dont rip out these tubes.🫣 You've tried to crawl out of this bed 👌 You can pick your head up and do a one handed pushup. 💪 Your Mr. Petty Freddy 🤣 and love to keep all the nurses on their toes. But laying in the bed you have to find something to do . Within a few days, hopefully Saturday , you will be extubated and I can finally hear your voice for the 1st time. All of these very 1st I can't wait to see.
Daddy & I should start this New Year with holding you tight! We love you Elix!!!

Santa came to see our boy!!! He let him know he was on the nice list. The 1st outfit and his 1st picture with Santa!!!

They made changes this morning to slow down the wean plan and try to focus on weaning the nitric oxide and Fio2. Those are helping his body oxygenate his blood. His oxygen is sitting at a nice 100 on both leads. He is sitting at 58 right now on the Fio2 and they will try to get it to 59 or under. Pray everything goes smooth and steady.

Happy Holidays from Elix 🫶👣

His SMILE 🥰🥰🥰
Today we have the start of talks about taking the tube out. He's weaned multiple times in a row without becoming acidotic. He's making big steps in the right direction. Today he put his little hand down on his bed and pushed his whole side of his body up. He's getting to be strong. This boy seems to amaze me with every milestone I see him pass.

Elix had his 1st taste of milk. He was given oral care today and with that, the sponge was dipped into my breastmilk to clean his lips. He got his very 1st taste of what food will be like. These little things add up to everything he's already overcome. He was given a 15% survival rate, and look how far he has got. I'm so proud of him!

One of our favorite nurses. Mrs Courtney has now been accepted into the Navy. She's going to save so many lives!!! I'm so grateful for her to be a part of our journey!!! Way to go!!! I hope you find this post one day and know you touched my heart and I appreciate you so much!!!

Happy Saturday. Wide eyed and ready this morning. The 10:00pm and 6:00am blood gas were not in the range they wanted so we're still at 72. He's definitely interested in everything this morning. We're waiting on rounds to come around and give us an update.

For the holidays the Tampa Bay Buccaneers came and sung songs on the CDH floor. They gave Elix a baby blanket and these lovely ladies came in to take a picture with Elix. Thank yall for being so kind to us and taking the time to see us all!