Day one was long. Starting at 4:30 AM, we left our home in the keys. We were worried about traffic, so even Justin wanted to leave early (He usually likes to get to the plane right when the gate is about to close). We arrived at the airport with plenty of time to spare. Our plane ride was uneventful, Noah did absolutely amazing. He slept the entire ride and didn’t make a peep.
We were greeted at the airport, by Laura, the angel that coordinates all of this. I quickly learned that we have something in common, Laura is a nurse too! On the car ride, we learned that we weren’t going to the hotel, instead straight to the Hospital. They didn’t want to waste time, not one second.
We went straight to the NICU. This NICU is like none I have seen, there are 120 beds and 60 nurses on the floor at any given time. Wow! A team of doctors awaited us, and greeted us with smiles.
After introductions, they immediately started drawing labs, and getting his baseline measurements. We were soon seen by the PICC team, to insert a PICC line. A PICC line is like an IV except the tube goes all the way to tip of the heart. This allows doctors to not only administer the drugs through the line for seven weeks, but also draw blood. A little invasive, but this means Noah only had to be poked once. No more needles for a little while. Thank God.
Labs came back, and they decided it was time for the first infusion. They came in with a syringe of the drug that will give us hope. VTS-270, also known as cyclodextrin. They hooked it up, and infused over 2 hours, He was in my arms the entire time. Was it scary? Of course.
My baby is so brave. So Strong. So Innocent. I wish that Justin or I could just take it all away from him and absorb it into our bodies. I know that either of us would without question. Unfortunately it is not an option.
One thing is for certain. Our baby is cute. Adorable actually. Of course we have always thought this, but the entire staff seems to reinforce that. They all stop by and talk about how cute and handsome he is. One going as far as to say he is way too beautiful to be a boy, that he must be a girl. It felt good to laugh, when she said that. There has been so much crying lately, that I forgot how good it felt to laugh.
Everyone has been so nice. So supportive. We took a little while to read all of the amazing comments on our social outlets. What a blessing to be loved by so many people. If there was any question that God would get the message about our little boy needing help, there is not anymore. Literally thousands of prayers are being said every day. Thank you all so much.
We will keep fighting. Thank you all for the support. The Army that Noah has behind him is huge, and getting bigger everyday. This boy is going to change the world with the help of all of you.
My sweet little Lari, all I can think of as I read and glance at your picture is that you could be at home, but you left your home to fight for baby Noah not looking back. Instead, you are filling your heart with hope and gratitude. You are also taking time to share with us. I pray that every person who reads your story or messages has a spirit of love and compassion to pray for your family and encourage you every day. You are strong! Every day is a new gift little Noah , love you and we pray for you child of God.
Noah is one lucky little boy. He has parents that are strong and willing to do it all for him. Noah is a miracle baby that will continue to show he’s strong and willing to fight. I’m so proud of you and your family. Ozzie, Olivia, & I will continue to pray. Stay strong mommy! 😘🤗
Reading your journey is inspiring. Thank you for sharing, justin and you have a beautiful way of writing. I love your son through your eyes, may God bless you guys with much much time.