Author: Ariel Thorne, mother of 23-weeker Levi
Life before the NICU : Levi's Birth
I often joke that I'm such an emotional being because I was born with a broken heart. The joke stems from having been born with a heart murmur that has been followed by cardiologists since childhood. When I learned of my pregnancy, a full health history was taken. Due to my murmur, we thought it wise for me to also have the baby's heart checked just in case. It was at a routine fetal-echocardiogram (look at the heart) appointment at 22 weeks where the sonographer gave me news that would change my whole life.
"Baby's heart looks fine. However, it looks like your cervix is shortening. This is now a high-risk pregnancy." That initial discovery lead to conversations with professionals about “the numbers” and that is when reality set it. After a pretty uneventful pregnancy, I learned that I could be having a premature baby soon. Soon as in about a week later. And at 23 weeks and 4 days, I gave birth to my 1lb 3oz baby boy who was given a less than 20 percent chance of survival.
Life in the NICU : Watching the Miracle Unfold
I remember feeling a variety of emotions. The most present one being fear-- fear of losing my child, my mind...or both. Suddenly there was so much that I didn't know. But what I DID know was that as long as Levi would fight, I would be right there beside him. And we did fight! For 150 days we endured the wildest ride of highs and lows. Every day was different and things changed from moment to moment. Thankfully, The Ronald Mcdonald House allowed us to be close enough to the NICU to be present for each round of the battle. And boy did we battle!!
We conquered a gamut of things common to most micro preemies including a grade 4 intraventricular hemorrhage (brain bleed), retinopathy of prematurity (vision impairment), jaundice, anemia, severe apnea, necrotizing enterocolitis (sometimes fatal infection of the intestine), patent ductus arteriosus (hole in heart), hearing loss (failed the screen 3 times), an aortic thrombus (blood clots in the aorta), a few surgeries and more blood transfusion than I can count. Finally, on September 13th 2019, we celebrated our NICU graduation and were able to take our boy home. The fight was over. Or so we thought.
Life after the NICU : One More Miracle
I wish that we were better prepared for what would come next. I wish that we knew that war was still underway...and that our next battle would soon begin. It happened on October 3rd--the first (and worst) of 4 readmissions.
Unfortunately, many micro preemies leave the hospital with a condition called bronchopulmonary dysplasia. It is a type of chronic lung disease that results from having been on a ventilator for extended time periods. The air being pushed into the lungs in order to keep our children alive were also causing damage to those same lungs. In Levi’s case, this condition is worsened by a very narrow airway. Prior to our
NICU exit, we knew that any exposure to germs would be a threat to his weakened immune system, small airway and damaged lungs. And so we tried our best to keep him well. We were never strangers to social distancing. But somehow sickness still came close. Close enough to close his airway and cause mucus to form in his already hurting lungs.
I remember the night that the doctors gave up hope. Levi had slipped into respiratory failure and was back on a ventilator. At the highest settings, he was still not responding and had co2 levels that were poisonous. We were told that ECMO was our last resort. This meant putting Levi on a full life support system that would drain, filter and oxygenate his blood before returning it to the body. The chances of survival were less now than those given before his birth. In a small room, we had to make a big decision. Ultimately, we decided to take our chances. Three hours into the surgery, the surgeon reported that they were unsuccessful and that I should prepare to say goodbye. There isn't enough time or even the right words to explain the miracle that happened next. Without any human/medical intervention, Levi recovered! All glory belongs to GOD!
This is just a glimpse of some of what families can endure post-NICU. Though there will be amazing moments, the reality is that there may also be some hard ones. Caring for medically-fragile children can cause an increase in emotional, mental and physical deterioration. And if not for a strong community, we would not have survived. If you or someone you know are navigating life after NICU, I urge you to connect with another #miraclemomma. We are all in this together!