I have followed Heather Cox’s blog for a while now. She has quadruplets and their story is inspiring. In gearing up for their march of dimes walk she wrote the following post. I asked her permission to share what she wrote because it’s absolutely perfect. The NICU journey is long and hard and it’s affects never ending. Many people along our path haven’t been able to, and won’t ever be able to fully understand these differences. But, as we gear up to march for our babies on Sunday I wanted to post this to remind myself, and everyone reading this, WHY we are so passionate about March of Dimes and why your support for Team Karsyn and Kaden is cherished. Thank you, Heather, for letting me use your words!
Bringing a new baby into this world is often a long awaited, very exciting time. Most women, from my personal observation at least, are sick of being pregnant towards the end and the last few weeks/days seem like an eternity as they anxiously wait the big “D-day”. The house has been ready, family and friends are on call, and a quiet nursery sits waiting to welcome a new sweet baby into their home. Finally, the day comes. Their water breaks or in many cases nowadays it’s their day and specific time to finally be induced. After a long labor and delivery or a quick cesarean, their sweet baby is here. Visitors come, flowers and endless gifts are delivered and within a few days mom and baby leave for home to start their new life together.
That’s what you think of when you think of the birth of a new baby, right? Somewhere near those lines anyway. For so many families the above scenario is a dream that fell short. Their deliveries were unplanned, unexpected and down right terrifying. One second everything is fine and the next they find themselves being told delivery is necessary for whatever reason regardless of how far along they are in their pregnancy. The complete opposite of something you would look forward to. Ready or not, here he/she comes and prematurity is suddenly on your doorstep.
Everyday thousands of babies are born too early. There are mothers who deliver and don’t hear a cry from their baby due to severely underdeveloped lungs. Rather than the new infant being placed in mom’s arms or on her chest after delivery, many are whisked away by a team of doctors while having breathing machines pushed down their throats in order to keep them alive before the mother even lays eyes on her baby. Their umbilical cords are not cut by their daddies but immediately taken out and replaced with arterial lines. There are new moms and dads who go days/weeks without getting to hold their new baby for the first time. Even worse, some never get to at all.
The parents of premature babies don’t get to experience a lot of what the parents of “take home babies” get to experience. While most go home and get to know and bond this new little life in the privacy of their own home, those parents of NICU babies long for the day they finally get one on one time with theirs. Many spend days/weeks/months asking nurses for permission to hold or even touch their baby. They must learn to know their baby and bond with their baby through the windows of incubators, over machines, wires and tubes. Many NICU parents wait weeks just to see their baby’s sweet face, bare, with no feeding or breathing tubes…which often is a sight of bruised, red and irritated skin due to the tape and equipment used on their delicate skin 24 hours a day 7 days a week.
Parents of preemies walk away from the hospital hundreds of times without their babies. The long drive to the NICU becomes a part of a daily routine. Eat, sleep, work, NICU. Eat, sleep, work, NICU. Forget to eat, sleep, work, NICU. The cycle continues day after day after day. A preemie parent’s medical vocabulary increases just as fast as their baby came into this world. You quickly learn more abbreviations than the average teenager on any social network… TPN, IVH, BPD, PDA, and ROP are just a few that are now in your everyday lingo. Parents of full term babies are at home celebrating milestones like the first smile, rolling over, and sleeping through the night. In the NICU we celebrate the fact that our baby urinated, that they made it almost a whole 3 hours with their vent settings lowered and that they were able to go from one tubed feeding to the next with little residual.
Bret and I are some of the lucky ones who left the NICU with all of our babies. Some parents are not so fortunate. One thing is the same for all parents who spent any significant amount of time in the NICU and that is that it doesn’t end once you and baby come home. I think that’s the biggest misconception about prematurity, actually. Many seem to believe that once a premature baby is discharged, they are a “normal” healthy kid ready to get on with their life. The NICU was a time in the past, something we parents who were there should get over, forget about and move on. It just doesn’t work that way. Many of us see the long term effects that prematurity has on our children daily. I see multiple scars on their bodies each time I change or bathe my babies that remind me of that long NICU journey we were once on. I’ve just recently started answering their “what’s dat?” questions when they look at their baby pictures and see tubes coming from their mouths and noses and IVs and other gadgets coming from other parts of their bodies. Although I am confident my precious 4 will grow up to be happy, healthy, able adults, I expect that they will have struggles they face specifically linked to being born nearly 3 months early.
