Meet Mandy Gramkow….one of NICU Helping Hands bloggers and also the Parent Coordinator for our Topeka, Kansas NICU Mom CONNECT group. Mandy is mom to two beautiful, wonderful premature babies and recently she answered the question of what the reality of parenting a premature baby is like that was posed by the Kansas City Moms Blog:
What are the things you wish people knew about the reality of parenting premature babies?
So I thought I’d share my response here in honor of Preemie Awareness Month!
I’m Mandy. Mom to two preemies. Not twins. Just “got” to do the preemie thing…twice. Ellie was born at 27w6d due to PPROM, and is now 5 years old. Beckett was born right at 25w due to preterm labor, and is now 25 months (21 months adjusted age).
1. Just because you are home from the NICU, doesn’t automatically mean things are going to be like a “normal full-term baby.” While we are SO thankful for the prayers, thoughts, and support during those very scary hospital days, it’s still pretty stressful. Our attempt at trying to “recreate the NICU at home” fails (I did this with Ellie). Feeding issues most likely continue. We have many different doctor appointments (we’re talking cardiology, neurology, ophthalmology, pulmonology here) and multiple weight checks at the pediatrician. Premature birth disrupts the nervous system’s natural development, so add therapy appointments to that list – physical therapy, occupational therapy, speech/feeding therapy, etc. So if you see preemie parents that are home, trust me…they are maxed out on excitement, worry and anxiety. They are pretty sleep deprived too. Often times the “never wake a sleeping baby” to eat notion does not apply.
2. It is hard. Not only are you facing the challenges of unmet expectations from your pregnancy and labor, but you’re also having to be SO brave in helping your preemie thrive, grow (ALL we want is for them to just eat and gain weight, really!) and try to “catch up.” War veterans are not the only ones to suffer from Post-Traumatic Stress Disorder. Seeing our babies in a near death situation, and the trauma of some of our labor stories are REAL situations that definitely affect our mental health. We go into survival mode to get through those first few hard years of feedings, weight gain and growth. (Actually I think we’re in the first stage of survival mode while we’re in the NICU and the second stage when we’re home). And then when things “maybe” slow down, you catch a breath. You then reflect back, and just cannot believe what happened. Preemie parents are the strongest, most brave parents I know. But we need each other. So reach out and make sure you are supported by fellow preemie parents who may “understand.”
3. The days in the NICU were the hardest days of my life. Whether it’s 1 day or 100, it’s 1 too many. Literally, each day could be an up, down or both. Think of 88 days (in Beckett’s case) in a row, going in to see your baby in the NICU and wondering IF your baby was going to actually come home with you. It’s so taxing on your emotions. My advice to those who have friends with babies currently in the NICU? Ask mom, “how was baby’s day today?” NOT “when will baby get to come home?” One day at a time – always take one day at a time. And for those fellow graduate NICU moms (no matter how long they have been home), it’s hard for us mentally not to just “wonder when the next bad day is coming.” The first days of our babies lives were setting a precedence. It’s hard not to continue that mind set, EVEN if they are “healthy.”
4. Even though we’re thrilled to have our baby out of the NICU (And yes, we all know how many days we were there. We counted. Yes. We did.), we’re still terrified that our baby is going to get sick, and end up BACK in the hospital. So yes, a majority of us are germ-a-phobes but for good reason. A simple cold could throw our preemie’s lungs into over-inflammation mode, and land us right back in the hospital needing oxygen. It’s SO scary. So if you see a parent in the doctor’s office waiting room that is trying to be in the corner away from everyone else…or one that feels the need to karate chop a curious, snotty-nosed lingering toddler, just know that we’re being protective. We are protective because we know too much.
5. I can pretty confidently say that none of us wanted to earn the title of preemie parent. With this title, like I said previously about the “unmet expectations,” comes bucket-loads of guilt and grief. Guilt that we weren’t able to carry to term. If we could have carried to term, we wouldn’t be in this situation. We all wonder what “we did” to deliver early. Not helpful. Not helpful at all. We know this. But this is reality. Grief that we missed out on the perfect delivery. For me, the whole last trimester. Grief that we never got to see baby kick across our shirt. My husband actually never even felt Beckett kick. Not once. Grief that we honestly, didn’t get to the “complain stage” of pregnancy. Yep, any of us would trade spots immediately. And yes, we would have hands down gained 60 pounds until the very end, the very FULL-TERM end. It’s a lot for us to process. And it is SO hard not to compare. To see people who have easy, no-complication pregnancies. It’s hard to be a pumping queen instead of a breastfeeding queen. It’s hard that our stories often times seem so far from the experiences those closest to us have. But you know what? It’s a process for us. It takes time, but we still want to be included in your lives. We don’t want to always be the “well, I shouldn’t be complaining to you” token. Thank you for being sensitive to our needs, but know first and foremost, we ARE going to be the ones cheerleading you to the end of your pregnancy. Your FULL-TERM pregnancy. We do NOT want you to have to go through what we did. And we’ll just be the one reminding you that when you feel the kick that hurts…it’s just baby building muscle tone, and doing some amazing physical therapy! 🙂
6. Normal. Oh, this word. It’s a difficult one in the preemie world. While each one of us prays that some day that our baby would get to the “normal” stage, often times it’s a long, patience filled road. And normal in a preemie parents world is definitely reframed. Of course we want our kiddos to do everything a normal kid does. But sometimes the road to get there is not so normal. My son, Beckett, had a brain bleed a degree higher on the right side of his brain. So with learning anything gross motor related, the left side would be behind. His amazing brain had to create different “pathways” of getting to the end goal. Think of it as you’re on a highway, and both cars are heading to a destination. For some of our kids, they just need to take a few more exits, and detours. Our physical therapist gave me that analogy that really hit home. Who cares about the “normal,” we’re just overjoyed they are on the road! Now, some things just won’t ever be normal for our preemies. Beckett was born at 25 weeks. So he has 25 weeker lungs. As we all probably know the lungs and the brain are the last to develop. So a 25 week delivery disrupted that pretty significantly. Sure his lungs technically “function” like the rest of us. His just look more “simple” than a full-term baby’s lungs. And they will always be “more simple.” His lungs don’t have as many alveoli sacs, and therefore has less oxygen reserve. So without getting too complex in the medical jargon, (which all of us preemie parents should have earned college credit for all we’ve learned about the human body!), this means that respiratory illness will affect them differently than a normal child, and it will likely have a longer course. We long for normal, but we have an appreciation for our brave preemies that overcome against the “norm.”
7. We, Preemie Parents, appreciate and celebrate EVERYTHING. Our perspective has been forever changed watching our miracle babies grow on the outside of the womb. EVERY SINGLE breath, every single feeding, every single milestone, every single movement, is CELEBRATED in the NICU. Our firsts are different than maybe a full-term baby, but they are SO worth celebrating. And beyond the NICU, every single step forward in their therapy – whether it’s physical, occupational, speech, feeding…ANYTHING and EVERYTHING is celebrated. Every weight gain, along their curve is celebrated. When they actually get “on” the growth chart, we celebrate. We are so thankful for the simple, often little things because we know how far they have come. We want you to celebrate with us too!
I LOVE that November is Prematurity Awareness Month. We have SO much to be thankful for…so SO much.