Penelope is only a few weeks old and she’s already done things we’ve never done in our 30+ years of life… MRIs, EEGs, blood panels, a spinal tap, an echocardiogram, urine exams, innumerable tests that I’ve never heard of and would like to never hear about again. Here’s the story.
September 26 was the best day of our lives. Penelope Joan was born at 4:18 am, weighing 7lbs 13oz, 21.25 inches long (SO LONG!). Perfect in every way. Fast forward to the worst day of our lives – September 27. She had been having episodes with rapid fire hiccup-like movements. Several caregivers told us not to worry, just the hiccups, just adjusting to life outside the womb. One angel of a nurse Lyssa watched a couple of videos Javier took of the episodes and reported it to the neonatologist, who very discreetly took her to the nursery without saying a word to worry me (thank GOODNESS) and immediately had her checked into the NICU when she saw one of the episodes occur. Turns out these episodes were seizures.
September 27 was a long, long, LONG day. I’ve never cried so much in my life. We only had bad news: seizures, possibilities of infection, meningitis, metabolic disorders, or brain development issues. No real answers about whether the seizures were getting worse or if they were a permanent feature of life. We were absolutely miserable until we met her neurologist Dr. Puri. He very carefully gave us the facts: she had an MRI and it showed some damage to her occipital and left-side parietal lobe. The damage was caused by a stroke that likely occurred during labor. Fortunately, 2 subsequent MRIs showed that the damage was limited and not spreading or getting worse. Then the hunt began to find the cause of the stroke and determine if it was likely to happen again.
They hooked her up to an EEG, which quickly became my least favorite machine on the planet. It’s designed to monitor her brain activity to record any seizures. While she was hooked up to this machine we weren’t allowed to stimulate her in anyway, so there we were with a 2-day old daughter that we couldn’t hold, comfort, or cuddle. I distinctly remember thinking “if I can just hold her again I’ll never, ever complain about getting up in the middle of the night for her sake. I’ll never resent changing a diaper. Just let me hold her.” Meanwhile, they were dosing her with two different anti-seizure medications and two different precautionary antibiotics, and all I could think of was that her tiny body was too small to have all of those drugs in it at once. The 42 hours that she was hooked up to the EEG were the most painful, helpless hours of our lives.
While she was hooked up to the EEG she underwent a variety of additional tests in the hunt for the cause of the stroke. She had an echocardiogram, I lost count of the number of times her heel was pricked for blood (over 60 during her whole NICU stay), and they collected her urine for other tests. They even tested my placenta for infection…which was a huge surprise to me because I didn’t know they saved it. All the while we continued to receive updates from her neonatologist and her neurologist that confirmed how healthy and normal she was despite her MRI, and how big of a surprise it was that she was in this situation at all.
Penelope spent two weeks in the NICU. Javi and I wanted to be in her room for every day-time feeding and her feeding times were every 3 hours, so we’d mostly stay in her room the entire day with quick breaks to feed ourselves. I was nursing and pumping so that she could have breast milk at night when I wasn’t there to feed her. Javier’s parents arrived at the start of the second week, and they accompanied us in her room for that whole week before we were discharged.
^^ getting a sponge bath in the NICU
It was hard waiting on test results. Penelope was improving every day – eating all of the time and doing all of the normal baby things. Infection and meningitis were ruled out as possible causes of the stroke. She passed her eye exam, which was a big deal given that her occipital lobe received the most damage. She passed her hearing exam for the second time, and the occupational therapist was very pleased with her reflexes and muscle tone. By Saturday of the second week in the NICU we learned that the plan was to release her on Monday, October 9. She was healthy and stable without any diagnoses of metabolic disorders or otherwise. She had been seizure-free since her second day of life, and from what I understand, all signs point to the stroke being a one-time event with chances of recurrence at 3-4%. We have to wait until November for her genetic test results, and those tests would have us on pins and needles if she weren’t doing so well. We’ve adopted the “healthy until proven sick” attitude, enjoying her milestones and her overall health every day. We’ve been to the pediatrician twice and she’s gained two pounds since birth and grown almost two inches, which is quite a feat for a 4-week-old!
Those first couple of weeks of Penelope’s life were difficult for everyone, but our girl handled it like a champ. We’ve been finding the silver lining of her NICU stay: she’s been on a schedule that they established, which is great. The alarms and hustle-and-bustle of the NICU have conditioned this gal to sleep through absolutely anything. Between all of the tests she underwent, we know ALL about the state of her health, reflexes, senses, genetics, etc. We will be watching her development obsessively, and she has follow up monitoring with the neurologist, geneticist, neonatologist, development clinic, First Steps Occupational and Physical Therapy, and regular pediatrician…in other words, she’s going to be very busy! The important takeaway now is that we have a beautiful daughter, she’s adjusting to life at home with us and the dogs, and we’re completely out of our minds in love with her. We want to send out a huge thank you to everyone who sent us messages and kept Penelope in their thoughts and prayers – your messages and prayers meant the world to us during a very difficult time. Our lives are better in every way for having her around and we can’t wait to see what the future brings all three of us!
** Update: Many people have asked how they can help. At the moment we have everything we need, but we are facing some unexpected medical bills and have set up a GoFundMe to help offset these costs. If you are interested in contributing, please click here. Thank you to everyone who has reached out to us over the last month – all of your support means so much to us!