September 11th, 2018 – Update 2

What an emotional day. We are finally settled at St.Joesph’s NICU. The rooms are private with a shower and a small couch that Seth and I will squeeze on together tonight. Seth has been my rock today and I’m so grateful for him. I can’t imagine going through this with anyone else. The girls and I are so lucky to have him. Tomorrow morning Lennyn will be having an MRI of her brain to determine the extent of damage the clot and fluid have caused and to evaluate how bad the PVL (brain damage) is. From there she will also have an EEG to see if she’s been seizing. A lot of times you can not tell in babies this small by just looking at them. Our wins today are she can see! She was so happy when we got to the hospital. She was following our voice- turning her head to us and full of smiles. She is also 4 pounds and 6 ounces and 18 inches long, bigger than her birth weight. The hardest part of today is the unknowns. Because there is a substantial amount of fluid on the brain and where the clot is located in the brain, she is at risk for cerebral palsy and severe development impairment. Sitting at home this morning and waiting for Seth to come home early from work, it was hard to not look at all the toys she already has and pray she comes home at one point and is able to use all of it. She could also work through this and live a very fulfilling life and be just like any other kid. There is literally no way to predict her outcome and that’s the hardest part. Any parent wants their babies to grow up one day, and marry, and have their own babies. REGARDLESS of what Lennyn’s prognosis is, one thing is for certain, she will have THE BEST LIFE. Seth and I spoke a lot today about that ultimately being our goal as her parents. She will have the best life she can possibly have. We also told her that we have big baby plans for her so she’s gonna need to get it together. A lot of people have asked us what we need, or what ya’ll can do. Honestly, we could probably use a lot but we don’t know what we need right now. We’re living second by second and our future is unclear. We are beyond appreciative of all the love and support. Keep the prayers coming. Keep the vibes flowing #lennynstrong

 

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