Today’s post comes from preemie parent Ashlee, who shared her experiences in honor of World Prematurity Day. To connect with one of our mentors like Ashlee did, click here.
First, I’d like to give a little backstory to how I became a micropreemie mom. On September 13, 2017, I woke up with my pants soaking wet. I went about my business getting ready and heading into the office. I decided I’d better just call my OB when they opened and hoped they’d tell me “welcome to that awkward part of pregnancy”. Instead, they asked me to come right in and I was given an ultrasound, and in a room with two nurses, my doctor came in and informed me that I would need to head to the hospital and have my son at 22 weeks 6 days, that I had ruptured my membranes. I’ll never forget the look on her face.
The medical term is PPROM, preterm premature rupture of membranes, and it is the cause of 40% of premature births. I was lucky to not have an infection and our little boy stayed put until I went into labor at 26 weeks 1 day, he was born just after midnight via emergency (classical) C-section weighting 990 grams and 13 inches long. The room was quite, he didn’t cry, the lack of fluid really hindered his lung development in spite 2 rounds of steroid shots, his Apgar score at 1 minute was 1. At birth, his left lung was completely underdeveloped. We are grateful to of had the doctors, nurses, and RT’s that cared for our son, the choices they made, when they made them, undoubtedly saved him.
Throughout his 158 day stay, in 3 different NICUs, he suffered multiple collapsed lungs, 9 blood transfusions, PDA ligation, stage 2 zone 2 ROP (self-resolved), 4 rounds of dexamethasone (10 day dart protocol), pulmonary hypertension, chronic lung disease (BPD), 2 picc lines, he went through opioid withdrawal, he spent almost 8 weeks on a ventilator, 3 of those weeks on an oscillator, a week on nitric oxide, and at 41 weeks actual, he had a tracheostomy and g-tube placed, as well as, a umbilical hernia repaired. He was discharged exactly 6 months after I was admitted with a trach, vent, oxygen, and a g-tube.
Here is a list of things I wish I’d known about from day 1:
*Actual vs. Adjusted Age
Actual age is the chronological age from the actual date of birth, adjusted (or corrected age), is based on their due date. Before a baby reaches their due date, their corrected age is the gestation they would be if you were still pregnant. For example, if a baby was born on September 1st at 28 weeks, on September 8th, they would be 1 week actual, 29 weeks adjusted/corrected.
*Don’t be afraid to be a parent to your baby!
You are all your baby knows, your scent, voice, heartbeat, they need to feel your touch and hear your voice. I get it, it’s hard to feel like a parent when you are afraid to touch your baby with IVs, breathing tubes, wires everywhere, but get involved in cares, read to your baby, and hold them when you can! We were lucky for our son to have some awesome nurses that encouraged us to be involved in cares and really made me feel like a mother on the days I needed it the most.
Our son spent Halloween, Thanksgiving, Christmas, New Year, and Valentine’s Day in the hospital, there were times I felt ridiculous buying my son things, not knowing if he would get to come home. I am not sure why I felt this way, but I want to tell you DON’T, dress your baby up for holidays, decorate within your what your NICU allows, take TONS of pictures, you should not feel any sort of shame for any of this, celebrate your baby!
*Every preemie is different
Babies born at the same gestation under the same circumstances will still have a VERY different journey. Every preemies journey is different. While I wish I could tell you exactly how everything is going to unfold, no one can. I had so many people tell me you just have to take it day by day, I HATED hearing that, so I am so sorry to say it now, but you really just have to take it day by day and sometimes, hour by hour. And even now, there are times I have to take it day by day.
Here I’d also like to add, DO NOT COMPARE YOUR BABY TO ANYONE ELSES, repeat after me, every baby is different, and that is okay. This is extremely hard to do, but trust me, it isn’t helping your mental or emotional wellbeing or helping your baby grow and thrive.
*Advocate for your baby!!!
I met this wonderful woman at the Ronald McDonald house in DC, we spoke a few times (her son had spent all but a few days inpatient at 2 years old) gave me the best advice, that we, as mothers, know our babies best and that it was our job to advocate for them, to SPEAK UP for our babies, we are their voice. Do your own research, reach other to others that can relate, and be prepared to make informed decisions when needed.
*Keep a journal.
I had this doctor tell me to keep a journal, and I took his advice. I kept everything in there, I tracked his weight, medicines, doses, future plans, vent settings, fio2 amount, food amounts, EVERYTHING. The doctors and nurses switch fairly regularly, you are the only person that is always there. Having all of this information in one place is invaluable. It keeps you involved and informed so you can help make choices for your baby.
*It is okay to cry!
Having a preemie brings your world to a standstill, everything you planned out in your head when you imagined having a baby, the maternity pictures, having a baby shower, decorating the nursery, packing your hospital bag, taking Lamaze classes, your ideal birth, holding your baby at birth, newborn pictures, and leaving the hospital with your baby is all thrown out the window. You don’t get to redo any of it, it’s done, over, and now you have to accept it and move forward. It’s heart shattering, although I am SO grateful to have my son and have him home (because not every story ends that way), I still get upset over missing out on not having my baby at home for the first 5 months or his life, that I’ll never get to hold my son as a baby without wires, tubes, and cords. There were days in the NICU where his alarms would go off ALL DAY LONG, it is mentally and emotionally draining, it took me months to realize how exhausted I actually was. Some days where you just need to cry and it is okay, just don’t stay there too long, we preemie moms (and dads) have to stay strong for a little ones. Which brings me to my next point.
*Stay POSITIVE (especially around your sweet baby)
While it is completely okay and normal to cry, we need to stay positive for our babies. Babies feed off their parents vibes, keep it positive, especially at bedside!
*Having a preemie doesn’t stop when they are discharged
There will be a ton of follow up appointments, therapies, they still need their time to catch up to their actual age, and that gap could be non-existent or it could be a gap that continues to get bigger. It is stressful, and sometimes, just down right frustrating (because after all, we are human). I really wish I would have had a better understanding of this earlier on. I thought we’d hit Jensen’s due date, he’d come home and everything would just go smoothly. Boy was I wrong, he sees occupational therapy and speech therapy biweekly. He will inevitably be behind in speech because of his trach. He doesn’t eat anything by mouth and we are working on getting him into feeding therapy. Although he is hitting milestones, he struggles because of his respiratory problems and prematurity. It is still too early to tell if his prematurity will have long lasting effects on him, which at times can be hard not to dwell on, but I am here to tell you DON’T.
*You will forever be changed!
My perspective on life has changed, what is important, what isn’t important, I will never think the same way as I did before having my sweet Jensen. Listening to people’s complaints and problems are almost comical sometimes. After spending days wondering if you would ever get a chance to bring your baby home, certain things just don’t really seem that important anymore. I am a lot more grateful for little things and value time spent with my family over everything else.
*People around you just may not understand.
Your friends and family likely do not understand what you are dealing with having a preemie and the risks associated with having a preemie, even after they leave the hospital. Some people don’t understand that a preemie getting sick is not the same as a full term healthy baby, especially with something like RSV or the flu. There are people that we have cut completely out of our lives because of their inability to respect our choices as parents in wanting to protect our son from illness. However, on the other hand, there are other people that we know we can truly count on when things get rough. Be prepared to see a different side of people, it may not be the side you thought you’d see.
People close to you may not understand, and that’s okay, reach out to someone that does. I personally found it easier to talk to someone I had never met in person about the struggle of having a preemie, the Graham’s Foundation was a wonderful resource! There are also a ton of Facebook support groups that allow parents to connect with each other and relate in ways that other parents cannot.
Jensen is now a happy (mostly) healthy 1 year old in spite of his rocky start to life. Since leaving the NICU, he has completely thrived in all areas, he works hard in OT and ST in spite his stubbornness, he is completely off oxygen, off all medications, but his one reflux medication, and is currently working on crawling! It is amazing to be a preemie mama and watch my son continue to make great strides every day. You can follow me on Instagram: ashleecolley if you’d like to see him continue to grow and follow his journey!