I am honored to announce a very special partnership between PreemieWorld and CareNav.

CareNav is an international company serving to disrupt the marketplace in terms of providing families with a better way to handle major transitions in healthcare scenarios, namely from hospital to home.  For the preemie community this is a huge benefit in that preemie parents can gain access to neonatal nurses to help in navigating concerns surrounding baby care with a special needs infant.  While this is not meant to replace the care by community professionals such as pediatricians, family doctors or pediatric specialists, it is to help smooth the transition home so that the parents feel comfortable even prior to that first post-discharge appointment at the pediatrician.  It can also help over time when working through various diagnoses because it is coming from a professional specific to your needs.  CareNav is well-suited to help every age in the lifespan in healthcare transitions from infancy to geriatrics.

I would have jumped at CareNav for help with my preemie had it existed then.  For me, 13+ years out from the NICU stay, I clearly remember the extreme stress involved with my daughter’s homecoming with medical equipment, medical supplies, medications and the xeroxed infant CPR instructions from our required Infant CPR class.   That gap of time between the NICU and the first pediatrician appointment is not about crying babies at night.  It is about bone-chilling fear when the apnea monitor blares out in the middle of your dream and you don’t really fully wake until you are running halfway to the nursery and desperately trying to recall the CPR instructions.  Yes, that was me within a week or so after my daughter got home.  After my daughter was roused and came back to us, my husband and I both shook as we waited for everything to normalize, to log the incident in the Durable Medical Equipment log for the tech to capture during the next day’s monitor download.  My husband was able to go back to sleep, but there I was at 4 a.m. shaking and wondering if this was longterm or not and checking on my now peacefully sleeping daughter.  Sleep did eventually come, though fitfully.  And we did eventually get Becky off both the oxygen and the monitor.  But to this day if I hear a truck backing up with a beep-beep-beep noise or a french fryer alarm also going beep-beep-beep I am immediately transported back to that moment.  Now it is a clear memory, but a while ago it was enough to make me freeze in public and desperately look around for my daughter and want to call out “Breathe Becky! Breathe!”

I thought I was the only parent in the world that was going to have a nervous breakdown about bringing home my NICU baby.  It turns out I wasn’t at all alone in this.  This is extremely common.  And we have to do better by all of these families.  We have to provide meaningful support – part emotional, part solidarity, and yes, part reassuring voice on a phone when we need it. This is why PreemieWorld decided to sponsor a set number of sessions with NICU nurses so that we could show how post-hospital access to a knowledgeable voice in the wilderness could make a huge difference.  Afterall, a positively-supported parent is one that is confident, capable and is less likely to feel depressed and stressed. And research directly correlates a mother’s mood to that child’s success developmentally over time.  It is time that we realized that post-NICU is a huge challenge and that families deserve more than just discharge papers for the pediatrician and specialists.