Ryan’s Story

Site created on October 23, 2021

Hi Everyone.

Thanks for being here. Over the last few weeks, Tom and I have felt so much love and support from such a huge community of people. Please let us start off by saying how much we love and appreciate you!

We've been wishing that it was easier to provide updates about the boys and thankfully, this website was forwarded on to us to assist in that. Hopefully it will make it less stressful for us. I'm sure you can imagine we have quite a bit on our plate already.

This will be a place for Tom and I to provide updates as we can, about Ryan and Ben on their day to day journeys. Each boy is on their own path to better health. Please keep in mind, our boys are very sick. The doctors and nurses remind us of that every day. We have to stay realistic and understand that our small victories are just that. Nothing is guaranteed from hour to hour and things change SO fast. Please know that we will do our best to update this site as often as we can, but we're only human and our first priority is being here for the boys. 

Again - we love you so much for being here and caring enough to follow along on our families journey to going home. We are already missing a huge piece of our hearts and hope not to experience any further loss. While we navigate Ryan and Ben's lives here in the NICU, we do so in honor of sweet Chase's short life. 

Thank you for your prayers and your encouragements. Thank you for your kindness and generosity. Thank you will truly never be enough.

Newest Update

Journal entry by Taylor Ortolani

It's with great excitement that I get to share this news! Ryan is home. 🥰

Here's how it went down:

On March 11th, Tom and I went to the hospital together to visit and when we walked into Ryan's room, I noticed something was different about his nasal cannula. We quickly put two and two together to see that he was weaned from 2 liters of oxygen to 1 liter. We knew this wean would be coming and that it would put us closer to discharge but it all happened MUCH faster than we could have imagined.

At that point, our nurse said that the team was working toward discharge later in the following week. We knew Friday the 18th would be the best case scenario for us, given Tom is back to work.

On March 13th, the team weaned Ryan to half a liter of oxygen which is exactly where he needed to be to come home. We spent the rest of the week doing ALL the things to prepare for taking our little guy home. Visits to the hospital were chaotic. There was lots of "training", coordination with the oxygen and feeding tube companies, coordination of all (one million) follow up appointments... There were a ton of visitors from all the specialties, clearing Ryan to go home.

Thankfully, everything worked out the way we'd hoped and on March 18th, we walked out of the hospital with our little miracle. What a bitter sweet day. Taking this boy home and having him here has been nothing short of wonderful. We are missing his brothers like crazy. Having Ryan here all the time makes me wonder what life might be like if Ben and Chase came home too. I will never not miss them. I also miss our NICU family and seeing/talking to them everyday. We met some of the most amazing people at Yale - people who we now consider family.

One feeling was consistent through all of the chaos. I kept saying, "I never thought we'd get here, and now were here and I feel like it's only been a few minutes." I guess you could call it some twisted form of whiplash? It's crazy to think about all that we've endured as a family to this point. We would do any of it 1000 times over again to have this little boy in our arms. 

So now we soak in all the good stuff and feel all the feelings. Every day gets sweeter, if I'm being perfectly honest. I feel without question that we were meant for this little boy. Being his parent is the greatest job title ever. I could sit here and stare at this beautiful and resilient boy for all of eternity. We've made the decision that this announcement will be the last via Caring Bridge. 

We are and continue to be so thankful for your support through all of this. The journey doesn't stop here for us. Ryan still has a ways to go - eventually getting off oxygen, learning how to take full feeds by bottle, and who knows what will come of his visual impairment. 

Please feel free to continue following along our journey.
Instagram: https://www.instagram.com/justanortolaniday/
My Personal Blog (historically more about me than Ryan, but there will be a variety in the future): https://justanortolaniday.com

I'll leave you with this amazing video made by the incredible family support specialist and music therapist in the NICU. Grab a tissue and enjoy seeing how far we've come, accompanied by a beautiful song. The lyrics are the words from my favorite children's book, "Wherever You Go, My Love Will Find You".

Thank you for being here with us. ❤️

https://www.youtube.com/watch?v=wzUAYAv-cfI

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