Rules of Engagement

As we are getting Miss Lennyn ready to come home there are a few things that I should mention since my last few updates have been short:

1. She’s coming home before her due date. She is preemie and more prone to become ill (seriously, we’re good on infection- sepsis almost killed her). This means we HAVE to isolate her. We’re in the beginning of RSV and flu season, we’re not taking any chances. She will need monthly shots to prevent RSV as it is. We waited 2 months to bring her home. Immediately family only, no exceptions, we’re firm on this. Please understand. Please don’t take it personal. When she is healthy enough, we promise to have a big ole party and meet and greet. We know she’s the “People’s Baby” and the people want their baby. 💟

2. She still has a brain injury and life long neuro disease. She still has a clot. She still has blood in her cerebellum and ventricles. She is not cured from Hydrocephalus. There is no cure. We will be having MRIs regularly (next one in 2 weeks) and according to Dr. Haridas following up with neurosurgery and neurology, biweekly, for AT LEAST the first 6 months- 1 year. We bought time with her second surgery. It’s not a guaranteed fix. She still very well may need a shunt. If her ventricles start to swell while she’s home, we will know because she will get sleepy and she’ll stop breathing and eating again. We will be on constant alert. This is extremely scary to have in the back of our minds 24/7. Our future is uncertain; that goes with her motor functions and basic abilities. The odds are in her favor to have Cerebral Palsy. All we can do is pray that she continue to beat the odds and take her to her pt/ot appointments 2 to 3 times a week. I don’t stress in my updates these things because I am a firm believer of positive energy and if we put it in the universe she will not have these issues, then so it will be. However, sometimes text book says otherwise. We will deal with this as it comes. Come what may. 💕

3. We have no idea what we’re doing. We are still very much so trying to figure out the logistics of our new life. Bare with us while we figure out our new norm.

4. We’re scared. Lennyn has been off oxygen for only one week by the time she comes home. She’s been taking bottles for less than that. One week ago she had her second surgery on her brain. Two weeks ago she stopped breathing all together and had sepsis. This is all happening so fast. This has been a rollercoaster. This is Seth’s first baby. This is my first baby in over a decade. AND she has special needs. The biggest thing you can do for us is continue to cheer us on and pray for our babes. We have a heart/ o2 monitor at home. Jesus is taking the wheel and we’re letting him drive.

5. Ava needs love too. Follow her on IG and remind her what a bad ass sister she is. @itza_potato. She had to cancel her bday party in August. She is the most selfless little girl in the world and is still maintaining honor roll during this crazy time. She’s a baller and she needs to be reminded of this from outsiders, not just Seth and I. Give that bad mamajama a big pat on the back. On top of all, she’s so proud to be Lennyn’s sister.

6. I’m really gonna start a blog. Looking at domains now. Life, Love, Lennyn. I don’t know. Trying to think of something witty. I want to help other moms. Not everyone has the patience to read through medical journals during chaos. If our trails and errors and success help one person, then we’re doing something great and turning a shitty situation into a beautiful one.

7. We are so thankful for all of you. Every single one. From the frozen lasagnas, to the fundraising, to the handmade goods- i hope y’all know we couldn’t do ANY OF THIS without you guys. You are our backbone and we love you all more than you know.

8. Dahlia, LeAnn, and Lauryn: can we just move one of ya’ll in with us? Thank you for loving our baby like she was your own.

#lennnystrong guys and Happy Tuesday to you all 💕

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