Love, Sara

“Dear NICU Mama, As another year comes to a close, I hope you celebrate your continued resilience. You are deeply aware of the strength it took to persevere through a NICU stay, but you didn’t stop there. You endured the emotional transition of bringing your miracle home for the first night without your trusted medical team. You practiced and perfected your words for boundary-setting with friends and family in order to keep your NICU grad safe. You experienced the heartache that came with your baby’s first hospital admission after the NICU, one you thought your heart couldn’t possibly take. And you know that no matter how much time passes—weeks, months, or even years—you will continue to look at photos from the NICU days and admire your baby’s progress. 

Try not to forget that you, too, have progressed, mama. With each passing season, you’ve persevered through appointments with specialists and various therapies. You’ve learned the medical lingo and how to best communicate with doctors so they understand how well you know your baby. But most importantly, you let your NICU miracle give you the clarity you need to progress on your healing journey. As you watch your baby grow into the little person they were meant to be, you can see how their fighting spirit will always be a part of them. That their scars or other physical reminders of their journey is what makes them uniquely them. So as the year wraps up, mark your calendars and celebrate those NICU anniversaries—and celebrate yourself, too, because you deserve it.”

Love,
Sara

More of Sara + Connor’s NICU Journey:

 “My water broke unexpectedly at 22 weeks and 2 days due to preterm premature rupture of the membranes (PPROM). I spent 9 days on bed rest until I gave birth to Connor at 23 weeks and 4 days. He weighed 550grams (1lb 3oz) at birth. We spent 115 days in the NICU, and Connor was discharged on his actual due date!

Our NICU stay was pretty typical with several blood transfusions, brain scans/ultrasounds, eye exams, difficulties with weight gain, slow transition off of breathing supports, etc. Connor will be 3 years old on November 27, and we are down to just one specialist: the ophthalmologist. Connor had stage 3 retinopathy of prematurity (ROP) with plus disease in the NICU. We opted for Avastin injections (which are not FDA approved for children yet, so it’s considered experimental) instead of laser eye surgery, which would’ve meant a hospital transfer.

Once we were discharged, we didn’t get the “all clear” from ROP until 6 months later. We were told Connor’s eyes could be a concern down the line because of the amount of time he was on oxygen. We found out shortly after his first birthday that his vision was quite terrible and is classified as high myopia (extreme nearsightedness) due to the ROP. So Connor has had glasses since then. There’s still a risk that he will lose his eyesight entirely, but the more likely scenario is that it will just continue to get worse over time. We likely won’t know how well his glasses correct his vision until he’s a bit older and can tell us what he can and can’t see, but for now he seems to do really well with his Coke-bottle thick lenses.”