A Micropreemie in the NICU

This month is a special time as I celebrate my son’s 4th birthday. He began his journey as Micropreemie in the NICU, graduating to go home for the final time after 4 months. When he was born, about three months early, he defied the norm of what a pregnancy and birth should be. He miraculously survived to the 26-week gestation period in the womb with barely any amniotic fluid. There was only a small bubble of fluid around his face for weeks since my water broke. It was as if God had held our baby in His hands, and said, “Let there be life.” God allowed this pocket for him to be able to breathe.

My son was considered a Micropreemie in the NICU due to his extremely premature birth. Not all NICU babies are born early. Some, however, have been born as early as 23 weeks gestation. My son’s birth and survival was not the first of its kind. We would be an epic tale to tell of to those in our circle.

After several returns, my son’s entire NICU stay lasted only four months total. Yet, my son’s journey and battle with medical concerns would not end there. He went on to suffer from severe allergies. It was an ongoing issue with multifaceted symptoms. These could not be pinpointed by the medical teams at hand. Even while still a “newborn” at home, he was on supplemental oxygen as well.

Despite all the troubles, our son would be one of the most resilient people I know personally. His story would echo the profound goodness and mercy of God in our life. We were living in the unbelievable grace God bestows on us every day.

Looking Back on our NICU Journey

Nobody could have ever prepared us for the NICU. Even with several weeks of waiting, wondering if my baby would even make it, there were a plethora of unknowns. There was no real “research” that could have prepared me for my son’s NICU journey precisely. The only thing we could do was pray, and trust God. He was doing what was best, even if it hurt in the moment.

Each day, and every tiny victory, was a win for God’s story. He was unfolding miracles in the life of my son. There were good days, and there were not so good days. God gave us those precious days. We were blessed, even in the mess.

My son had to return to the NICU more than once. We would look back at it as one long NICU stay. We try not to think about it too much, however, because it was such a difficult time. Yet, where would we be if we didn’t look back now and then? Just to reflect on how far he’s come? Sometimes, a little introspection is necessary.

When I look back on my son’s NICU Journey, it wasn’t even nearly as difficult as the post-NICU trials. It was its own kind of journey. No parent really wants to go through it, especially as a micropreemie in the NICU. But God was there the entire time, and He lifted us up many times. We were frequently on the receiving end of blessings. Sometimes it was the kind gifts of someone, other times, prayers others lifted up to God on our behalf.

Remembering the impact of being a Micropreemie

Not many in my small circle of family or friends know much about the impacts of being a micropreemie. We all hear about preemie babies, the ones that were born maybe a week or two early. We don’t think much of it. They were little, sure, but they were in and out of the NICU in less than a few weeks tops. That was a majority of preemies, including my husband and his brother. Then there were the micro preemies. These were born before 26 weeks gestation, or weighing less than 1 pound and 12 ounces, like my son.

Every year there are greater chances of a micropreemie being born and surviving. Yet there are still underlying health problems that occur just by the nature of being born so early. Some of the concerns are short term and are usually caught while in the NICU. There are long-term issues too, and sometimes don’t fully develop until home from the NICU.

Long-term Impacts of a Micropreemie

Some of those impacts include developmental delays and Chronic Lung Disease. We were fortunate that our son really only had the two. Bronchopulmonary Dysplasia (BPD), also considered the Chronic Lung Disease of Prematurity, was a result of being on supplemental oxygen. The other impact was developmental delays. Sometimes taking years before beginning to do the things that the average baby would be doing at certain ages. Our son still is delayed in some areas, like communicating, but is making progress.

A majority of the longterm impacts of micro preemies are severe, like cereal palsy or hearing impairments. Our son has been blessed to be relatively unscathed by the possibilities of those impacts. As for him having had BPD, he has been officially graduated from the lung doctor’s care for two years now! We are so thankful that our son has been able to breathe normally. He can run and play, and live a relatively normal life since his first birthday.

Celebrate every victory with your Micropreemie in the NICU

We had to take each day at a time when our son was in the NICU and after. If you are a parent of a micropreemie in the NICU, celebrate every little victory. No matter how small and insignificant it may seem at the time, celebrate. Each little victory will shine hope onto your situation.

When we were in the trenches of the NICU journey, we looked forward to every ounce gained. Every moment we had with our son was cherished. I documented the details of our visits and phone calls. We took thousands of photos in his first few months. Even if you can’t do all the things you want to, try to find little things. Look forward to and celebrate the small things you are grateful for. These little nuggets of gold are invaluable. You will gain hope and resilience in the journey with them.

Every little memory will help make your NICU Journey a little lighter, and brighter. Sometimes we don’t get to enjoy all the things we imagined when talking about motherhood. No glamorous photoshoots of baby, or precious moments of cuddling our newborn just after birth. But we can be grateful for all the little things we did get to share with our precious baby. Sometimes it will be easy to find something to be grateful for. Sometimes we might need to try a little harder, but each little gem is worth it.

Hope for the Future

My little one isn’t so little anymore, now a rambunctious 4-year-old. Sometimes he wants to be held like a nine-month-old baby. It may be difficult to imagine that we still have any hurdles. We have a few that we are hoping will pass soon. Until then, we hope for the future of our son, and just keep chugging along, one day at a time.

I hope for my son to communicate better with us. I can’t imagine how difficult it is for parents who have a truly mute child. My son knows his alphabets and can count to 20. Still, he won’t tell me what he needs half the time, or if he is hurting, or where he hurts.

Even so, I will celebrate how far my little one has come. The hymnist said, “It is Well with My Soul,” and I echo it because we are truly blessed. Hopefully soon, he will open up in areas he has not been. I want him to enjoy the feel of water at the splash pad. I want him to keep singing, playing, and laughing hysterically.

Thoughts for Fellow Parents of a Micropreemie in the NICU

Are you are walking this journey as a NICU parent? Take a moment to write down the things you are grateful for with your baby. Are you are a parent of a micropreemie in the NICU? Find support from others to help walk this journey with you. I pray that your faith will grow alongside your baby. May hope abound, that you may be able to spread hope to others in your circle.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God.

2 Corinthians 1:3-4 NASB