Hand to Hold's Official Blog: Written by Parents for Parents

Confessions of a Preemie Papa

You are my everything, son

You are my everything, son

As our son Jayden closes in on three, I have learned so much as the parent of a former preemie. We have seen all sorts of ups and downs, laughter and tears, milestones and obstacles, and I wouldn’t trade any of it to do it over. When I reflect on where we started and where we are at, I can’t help but have these thoughts at the forefront of my mind:

If I had to choose now, chances are Jayden would/will be an only child. While my wife and I may change our mindset, we are running out of time. At the forefront of that choice is my wife’s health. When Jayden came early my wife was developing pre-eclampsia, and with a family history of blood-pressure, she will be considered  high risk pregnancy from the outset of a second potential pregnancy. Heaven help us if something were to happen to my wife. She is everything to me. I am the youngest of three boys, and I cannot I imagine my life without them, which makes the decision even more difficult. I know that family and friends would love it if we tried for another child, but right now the risks and uncertainty outweigh everything else.

I officially loathe winter. While we are drawing near to the end of the Flu/RSV season, I cannot wait for the earth to thaw, the temps to rise, and for outdoor activities to resume. I know that every preemie parent can relate to the anxiety this time of year brings. We were on lockdown under most circumstances. Sanitizer and wipes have become an extended part of our family. When your child is not well, it’s such a helpless feeling. Amazingly enough, Jayden had the flu for the first time in his life this last week. I am a stay at home dad, and Jayden has a love of the outdoors and exploring, much to my delight. But when we are cooped up in our cozy home, keeping him entertained can be tall order. I am by no means crafty, and keeping things fresh and new for him has been a lot more difficult than I anticipated. When its warm out, it’s easy to pack a bag, hop in the van and go exploring for a couple of hours. Spring cannot come soon enough.

While the NICU was the hardest part of our journey, each stage of Jayden’s life has provided a new set of challenges, fears, and accomplishments. This may be a tough pill for some to swallow, but life doesn’t just magically turn back to normal the day your child graduates from the NICU. As I mentioned in my last blog, I had such a singular thought process when our son was in the NICU, that compartmentalizing my emotions was a lot easier to do. I remember feeling all the emotions that come with a stay in the NICU, but I kept an even keel as I was naive enough to think that everything would change outside the walls of the hospital. It doesn’t. It just becomes different. I also battle feelings of guilt. Should I really be stressed when I know so many other parents have to overcome so much more than we do? Jayden has come so far since the day he was born, and we relish all the amazing things he has accomplished. But we still have a long way to go.

With every day that passes and Jayden hasn’t turned the corner with his speech delays, I feel in some ways I am failing him as a parent. I know it’s an irrational thought, but I crosses my mind a lot. Am I doing enough? Has keeping him home and out of daycare robbed him of crucial interaction with other kids his age? I feel like every day I’m holding my breath to see if he’ll say something new,  if he will start stringing words together. We are working tirelessly to teach him new words, to speak slowly so he understands what we are saying, and reinforcing and praising him when he properly uses words or phrases in their appropriate context. I know in hindsight this will seem like a small bump in the road, but I will happily reflect on that once we get there.

I’m sure there are other parents who can relate to these feelings. Are you one of them?

Joel Brens About Joel Brens

As a father, Joel Brens (IL) wants to dispel the idea that dads can't be scared or emotional beings. His wife gave birth to their son via emergency c-section due to complications from diastolic umbilical artery flow at just under 33 weeks. Their son was born in May 2010 at 3lbs. 6oz. and spent 25 days in the NICU while his lungs developed and he learned to eat. Presently, he is undergoing evaluation for developmental and speech therapy but otherwise doing well. Community and support have been essential to Joel and his wife. You can connect with Joel on his Facebook page, via email or on his blog, Papas of Preemies.

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