Today is a day we have been planning since Lennyn’s diagnosis. I don’t think we actually thought she’d be home by the time this day came though, when we were planning.
Today was the Hydrocephalus Associations Walk to End Hydrocephalus. Not only does this walk raise awareness to the disease locally, but money raised goes towards research and better treatment options. It’s 2018, shunts suck. There has to be a better way!
As you know, we’ve been trying to avoid shunting since Lenn was diagnosed. So far, so good. Still praying daily that her ETV/CPC surgery holds up so she can live life without one.
Shunts are great but they have a 50 percent fail rate the first 2 years AND need multiple, sometimes hundreds of repairs – which are all done via brain surgery. Lennyn is 10 weeks tomorrow and has already had 2 brain surgeries without a shunt. We’re giving it our all to see she can avoid this life and not become a shunt/hydro statistic.
We have been selling #LennynStrong t-shirts for about a month now. It’s literally the only thing I’ve been wearing since. Proceeds from the shirts resulted in our team raising a staggering $865! For only being out of the hospital for 2 weeks, being 4 weeks post op from our last surgery, AND living in the NICU for 2 months, I think this is pretty damn good and I’m pretty damn proud of it and our team.
We got the approval from the doc to bring Lennyn outside for a little fresh air and sunlight, packed up our bags, and headed to St. Pete this morning.
Seeing these kids and adults that have had a TON of surgeries to maintain their brains was moving. The amount of resilience in a 3 mile radius could move mountains. What was even more moving were the smiles on everyone’s faces. Everyone there understood what the person standing next to them was going through. Everyone was thankful. Everyone appreciated how precious life is and the ability to overcome it all. We were really lucky to share this time with our family and friends and a VERY special person.
We met Lauryn almost immediately after a Lennyn was born at Countryside NICU. We INSTANTLY clicked and really favored her over basically everyone there. Every nurse there was fantastic but you could just tell that Lauryn genuinely cared for our Lennyn on a different level than just your typical nurse/patient level of care.
Ava asked one night how I knew Lauryn and I asked her what she meant. She said that Lauryn and I had a “connection” and she was inquiring where we met. I told her that we just met and Lennyn was our connection. Ava genuinely thought we knew each other outside of the NICU.
Seth and I were so overwhelmed with everything that was transpiring in the beginning. I was sick on top of it all. Lennyn was still hooked up to God knows what, was like 3 pounds at this point, and still in an incubator. She didn’t feel like our baby. We were never asked if we wanted to hold, or touch, or assist in any of the care at that point. She was the hospital’s baby and still cooking before she could be ours.
I’ll never forget the night I met Lauryn. She asked if I wanted to touch Lennyn. She open the doors on the incubator and showed me the button to press to keep the air warm when the doors were open. “Go ahead. She’s your baby”
A few nights later she asked if we wanted to help her sponge bathe Lennyn. “It’s ok. She’s your baby”
I’ll never forget the next night. She simply asked, “do you want to hold her?”. I was so taken aback by the question because I didn’t even think it was a possibility. She always reminded me, “it’s your baby”. Seems like a silly thing to be reminded of but NICU life doesn’t really make you feel like your baby is YOUR baby.
The funny thing about this little statement is, as time progressed and even to this day, Lennyn is not just my baby, she’s our baby. I gladly share that entitlement with Lauryn. She was there many nights for our baby when we were not. She was her nicu mom. She was our breath of relief because we just knew Lenn was safe with her.
Our transfer to a bigger hospital was FAST after Lennyn’s bilateral brain bleeds were found. The report of an ultrasound was read overnight, and we were moving a few hours later. I never got to say goodbye to Lauryn and more importantly, she never got to say goodbye to Lenn. I told every nurse I saw on our way out how heart broken we were to leave without this goodbye.
Ironically, I knew a mom who had a baby in Lauryn’s nicu and a begged for her to give Lauryn my number. I never heard anything for a while. Lauryn wanted to get approval from the hospital since we were still patients of a hospital under the same umbrella. We would pass messages through this friend of mine. I’m very happy my friends son is thriving, I’m also happy she was there to do this for us because I don’t know if we would of ever connected with Lauryn again had she not been.
After a few weeks of relaying messages through Cortney, Lauryn texted me. The message came in as Lennyn was being moved into ICU after her first Neurosurgery. Instant tears. It was so comforting and relieving to hear from her, on this day of all days. We have kept in touch via text but today we were all reunited and my heart is so happy.
I’m not sure what the final factor was that made Lauryn go into the NICU but my family is so grateful she did. After all, the Lennyn Lauryn love story is clearly fate. Just look at their names.
Today Lauryn was unsure if she’d be able to hold Lennyn with all of her restrictions, but today I got to tell her, “Go ahead, it’s your baby” ❤️
Lauryn, we will forever be grateful for all that you did, as small as the gestures may have seemed, to us they were huge. You forever have the biggest place in our hearts and I’m so happy that you’re apart of our #lennynstrong journey.