66%

Well, we’re back. Back in the hospital after a very short lived 20 days home. Lennyn has spent 66 percent of her life in a hospital. Actually, three hospitals. It’s hard to not feel defeated at this point.

Yesterday, after our 2 month check up and vaccinations, Lennyn and I went home to relax. About an hour after Ava got home from school, Lennyn’s monitor started to alert. Her heart rate was 223 and her 02 had dropped below 80. She looked terrible. Very pale, floppy, blue tint around her lips and eyes.

Our owlet is connected on our families phones. When there is a monitor violation, all connected phones are notified. As I’m trying to assess the baby, everyone starts to call. I have Ava call the paramedics and hand me the phone and I stay on the phone with them until they get to our house. Ava took calls from our family to let them know what was going on.

When EMS arrived, they were debating flying her to Tampa but were able to stabilize her with hand held 02 and decided to trek via ambulance. Off topic- that ride was horrifying.

Lennyn came to when we got to the ER. They ran some blood work, and sent some cultures. We had an ultrasound of the head that looks the same since the last one. Her chest X-ray came back fine. They admitted us pretty quickly and we’ve been upstairs since. As I said, She came to for a little bit:

But has been out of it since. As soon as we got up stairs her oxygen started dipping again and she’s been completely lethargic and has slept all day since.

She has been hooked up to telemetry since arrival. She is currently undergoing a 24 hour eeg to track her seizures. She’s on a cannula. Tomorrow she will have a ct of her head and mri. She is also scheduled for an echo, ekg, and swallow study. Pediatrician said we won’t be going anywhere, anytime soon. Everyone is scratching their heads. We had to cancel our ot and pt appointments for this week.

As we start to feel defeated as I started this entry with saying, we meet or speak to someone and get a taste of, “it could be worse”. We met the mom of a daughter who has been here for 8 months. She is 9 months old. They too started in the NICU. They too were home for only 20 days. The husband has left his job, as many of us are forced to do, as day care and baby sitters will never be an option for our kids. We find strength in our encounters with these parents. NO ONE GETS OUR LIFE BUT THEM AND VICE VERSA. Even our closest friends, unless you’re living it, you have no idea. I found strength in that woman tonight. I hope she found strength in us as well. Another #lennynstrong connection as she stopped us because of our shirts.

Quick thank you to our beautiful daughter, Ava. What you had to see with your sister was scary and you handled the situation beautifully. I honestly don’t know what I would of done if you were not home Ava. You are my saving grace. KNOW THAT.

John Ferdinand- your boys from Pasco EMS made us feel safe and got our girl help fast. Your presence was comforting. Thank you.

Jessica Richards, our beloved nurse at our pediatricians office. You have become Lennyn’s advocate outside of the hospital. Thank you for everything. EVERYTHING.

Our St Joes angel, Dahlia- Thank you for texting with me until I got to the hospital. I appreciate your guidance and 24/7 availability.

My sister and her wife for meeting us in Tampa immediately for support. My mom for being my person to vent to all night.

My grandparents, especially grandfather, thank you! You’ve taken Ava in while we’re hospital bound again and made many trips to Tampa. We could never repay you for everything you do for our family.

Last but not least, our dear Lauryn. You stayed up with me until I finally get comfortable enough to shut my eyes early this morning. Appreciate you more than you know.

Will keep everyone updated as results come in and we find out what is happening to our sweet girl.

Those waiting for your lennynstrong shirt to be shipped please be patient. We had them sorted to go out and then this happened. We will send out ASAP!

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