What it’s (really) like to be NICU parents

I will warn some that this may be a trigger for some parents or people who have been involved with any child in the NICU. While we lived in Texas and our children lived in the NICU, it was the single most challenging time of our lives. We wrote the letters as a coping mechanism. Many “oohed” and “ahhhh’d” but really, life in the NICU sucks. It’s up and down. Here was a post I wrote expressing our reasons for writing. How it helped. Why what our kids were experiencing was just grueling to watch.

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Many have expressed their love of our letters to Phoebe and Xander. And that’s awesome – Brian and I can sure feel the love from everywhere. But I want to share why I’m writing them and why they’re important to us.

You see, this journey has been 2 years in the making. It’s emotional. It’s stressful. And above all there’s very little we as intended parents can control – and their birth is just one great example of how biology has its own way of working and keeps us on our toes. But above all: it’s entirely worth it all.

I write these letters as a way to process what’s going on. Almost a cathartic release for the emotions. It’s a healthy outlet. And I’m glad you can feel the love cause that’s what they are: an expression of our love for our kids.

I want our friends and family to keep a few things in mind:

1) Our babies, while healthy and growing, are healthy for babies born at 33 weeks. That means our kids, for a time, will be behind in milestones. Consider, if you will, that biology says they were -7 weeks old when born. They missed out on valuable lessons and practice while in the womb and these lessons have to be learned. Consider the 50 muscles needed to suck, swallow and breathe, and then coordinating it all. Then add to that regulating body temperature. Then add respiration. And then add…catch my drift? It’s a LOT for them at this age. And they get tuckered out so quickly. While they may lag behind for some time, with effort and good parenting, they should catch up to everyone by the age of two.

2) Celebrating each milestone, no matter how small, is important. It creates positive reinforcement for us and the babies, and allows them to receive positive stimuli. It’s a win win.

3) Skin to skin is an activity all new parents should do (fathers too!). It encourages bonding with our newborns and helps them get into a deeper sleep. This allows better brain development. We’ve also learned it releases oxytocin within us, and that’s exhausting. But it creates an inexplicably special bond between us and our children. Folks said it was unexplainable, and they were right. There are no words. In fact, our nurses and physicians on staff here have expressed how well our kids are doing (for their age) and directly attribute this to the amount of skin to skin. So to the fathers to be out there: whip those shirts off and get skin time with your babies. You won’t regret it. And, you’ll sleep better. I promise.

Which brings me to:

4) When will we be released from the NICU? While I wish we had an answer and I wish it were definitive, there is none. Our doctors have prepared us to be here up until April 7, their gestational due date. Why? See number 1. There are so many milestones that our babies need to meet before that’ll happen. Point one covers some of them but not nearly all of them. So when a friend asks me out of love when we’ll be home the answer is we don’t know. Phoebe and Xander are the bosses for now and as they’re ready and reach these clinical milestones (and not earlier) we’ll be able to head home.

So when we write those letters it’s our way of patting our babies on the back. They’re kicking ass. They’re freaking 34 week rockstars. And when I post tomorrow about their one week celebration, we’ll look back on the amazing accomplishments they made in just one week: breathing on their own, regulating body temperature, getting their bowels to function, regulating blood sugars, learning to suck and swallow and try to coordinate breathing. It’s a tough job and they’re literally amazing. It makes us so proud.

Thanks for following our journey and to everyone that has reached out. Your support has been so important to us as we travel this part of our journey so far away from you all. But most especially we want to give a shout out to Ashly and Mac. You inspire us daily. And your love for us and faith in us gives us strength. To our parents (Marc, Diane, Rose and Charles) for the unconditional love and support each day and night we’re here. And to our close friends that text and reach out daily – it means more to us than you’ll know. We love you all so much!

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