We went there everyday and were told terrifying things, like “Jasmine has brain damage and we are monitoring her for seizures” and “Zoey just can’t breathe on her own and is having episodes of apnea often.” And even more, “Jasmine in in DIC and has a heart defect,” and “Zoey has a mass on her adrenal gland.” And worst of all was all of the “We don’t know” answers we often received, especially in regard to Jasmine’s DIC and brain bleed.
After an anxiety-filled nearly one month stay at Hopkins and a week long stay at AAMC, the girls were able to come home! It was relieving and exciting but also scary and lonely with the Covid pandemic still raging. No one could visit, or hold them or take the big girls somewhere for a break. And I was terrified that out of the small amount of people we did see, someone would give my family or my tiny babies this ugly virus. That we’d be separated or wind up back in the hospital, especially because they were still so medically fragile. I found myself again daydreaming of my beautiful girls at 6 months old. I was getting maybe 2 hours of interrupted sleep at night, struggling with my own health and well being and wishing for 6 months with all my heart. “If we can just make it to 6 months, everything will be different. Everything will be easier,” I would say to myself. They would be happy, healthy, thriving and far away from this pandemic.
Then in July, we found out that Jasmine was still very sick. Her liver was not well and a routine visit turned into a hospital admission and turned me into a blubbering mess. Rounds and rounds of tests and genetic panels and nothing was coming back conclusive. I found myself again, wishing for her to be 6 months old and for this to all be behind us. After a week long stay we were sent home with a quasi-diagnosis of a rare genetic disorder that meant a liver transplant was in her future. As we were monitoring Jasmine’s bloodwork to see if she was getting better or worse, she indeed got worse and was readmitted to Hopkins in early August. She went in for a liver biopsy and more precise genetic panels as I sat at home (one parent only Covid rules) wishing and praying for good results and again wishing away the time. Wishing to fast forward to a time where my baby would be healthy and could be at home with her sisters, with me. “6 months,” I prayed, “please let her make it to 6 months old.”
We left again with no real answer for her liver’s condition but did have some follow up bloodwork that showed she contracted the CMV virus sometime after birth, which took a toll on her poor liver that was already damaged from the hypoxia she experienced at birth. The longer we were home, the better Jasmine got. Her numbers looked better. She looked better. And by the end of September, we all felt better. And 6 months old wasn’t so far away. Happy, healthy and thriving... far away from liver panels and genetic disorders.
Fast forward to now... Zoey and Jasmine are 6 months old. They are a half a year old?! As much as I dreamed of this milestone, I still can’t believe it’s here. This milestone means so much to me, to Aaron. These tiny little 4 pound babies are now our chubby-cheeked, not-so little 15 pound babies. They are such a light in all of our lives and they do something new almost every day. Their smiles, giggles and belly laughs make up for all the scary, terrible things we went through with them. And sometimes when I look at their sweet little faces, I find myself wishing to freeze time, instead. Let’s just stay here for a little bit longer. Let me hear that adorable giggle again, let that sparkle in their eyes linger, allow their little fingers to hold tightly onto my shirt a little longer.
6 months old. Happy, healthy, thriving and far away from all they’ve been through. Proving every day that they are fighters, resilient and miraculous.
They made it.
