A Rough Time

One of the beautiful things about social media and blogging is that we get to market ourselves in our best light.  We have these carefully curated highlight reels, and we get to read comments as people "Ooo" and "Ah" and say they wish they had our seemingly perfect (or perfectly imperfect) lives.

It's also one of the most terrible things about this social media age.  Everywhere you look, you are bombarded with beautiful, adorable pictures of people living their Instagram-worthy lives.  I myself am guilty of this.  If you are going through a hard time in your life, it can be very isolating.  So today I'm going to talk about the emotional roller coaster I have been riding for the past several weeks.

Those who know us or who have read previous blog posts know that our son was a preemie who came nearly six weeks early a little over a year ago.  We were considered "lucky," because aside from William's prematurity, he had no other medical problems.  Despite all of this, he was kept in the NICU for seven weeks after his birth for "feeding issues."  Even just typing about this is making my hands shake.  We begged staff for weeks to try and let us pull his feeding tube and try to feed him on demand instead of on the highly regimented feeding schedules most NICUs in the country use.  It took until about week 6 for us to have a doctor who was on board with that.  Long story short, it worked.  Will actually ended up eating more over the course of the day when he wasn't being pushed to take a certain amount of milliliters of expressed breastmilk every four hours.  And when we got home, we found that he didn't really like bottle feeding at all (which was another suspicion I had), and we transitioned to nursing only.  He thrived.

I'd love to be able to say that was the end of our ordeal, but it hasn't been.  I became obsessed with how he was doing, terrified that any minor weight loss or change in behavior would send him straight back into the NICU.  I bought a baby scale and would weigh him before and after feedings to see just how much he would consume.  I weighed him daily to see how much (if any) he had gained.  The first few months at home were wrought with anxiety on my end, but it slowly lessened as the months went on and we got more and more positive feedback from family, friends, and his pediatrician.

His birthday came and went, and I enjoyed all of it!  I felt like I had finally put everything in the past.  Then a random encounter sent me reeling.

It was so silly.  I was walking into Target after I got done teaching dance, when I saw the head of neonatology across the carts from me.  He was the doctor who sent Will home.  Who had listened to us as parents.  And who had also made me fearful that any misstep could send us straight back to the NICU.  At first, for a split second, I thought I would say hello.  Give him an update on Will, and get the I-told-you-so satisfaction from my mother-knows-best intuition having served me (and my son) so well.  But then something inside of me wrenched, and I turned away, pretending I hadn't even seen him there.  I'm sure he knew.  We had made eye contact, even if for the briefest of moments, and I had seen the recognition on his face.

All of a sudden, as I was walking through Target looking for diapers and wipes, I was back in the NICU.  Nurses watching every move my husband and I made, machines beeping and alarms sounding, my baby attached to monitors, an NG tube connecting him from his clear plastic crib to the wall.

Since then, I have been a wreck.  It all hits me when I least expect it to: in the car, when I'm teaching, when I'm talking to someone.  All the feelings I did my best to push away come flooding back, and it's as though we are still there.  March was certainly the worst time.  Will's due date was in March, and March was when we knew he was fine and were trying literally anything and everything to bring our little guy home.

I had drinks with a friend recently who also experienced a traumatic event many years ago.  She said that for the same time each year, for 13 years, she would have a similar experience.  "The truth is that it does get better," she said, "but it takes a really long time."

But there is another truth I know: this kind of experience is not uncommon in parents of children who have been in the NICU.  And while their job at the NICU is to keep your baby alive, there are little to no resources for parents available to help them cope with the shock, grief, guilt, and anxiety of having a premature infant.  Our hospital had a parent-run support group, a social worker, and pastors available, but no one with a psychological background who specializes in this sort of thing.  And that isn't right.  How can we give so much care to these fragile infants and then send them home with parents who are emotionally fragile?  How can we teach parents how to use a carseat, feed their babies the correct amount of breastmilk fortified with formula, and to know when to call the doctor, but not how to cope with the emotional challenges of being parents of a potentially medically fragile baby?

Of course, I understand on an intellectual level that everything is ok.  Our baby is happy, healthy, and thriving.  We are truly the lucky ones.  And I know that things will get better.  I just wish I had someone tell me a year ago that it would be an uphill battle not just for my son, but for my husband and me as well.

Please know that if you have experienced a traumatic event, you are not alone if you feel this way.  I have found talking about my experience to be really empowering.  And it's also ok if your social media isn't always just roses and daisies and sunshine.  The dark and scary parts of life are what make those carefully curated posts even sweeter. <3

Nothing is harder than being forced to wear gloves "for your protection" from an MRSA outbreak while your baby is in the NICU.

Our sweet, sweet nurses made us this to commemorate this milestone.  The nursing staff was so amazing at our hospital, and they helped keep me sane.

Scarier than it looks.  An IV had to be placed in his head because no other veins were working.  Will was soaking up the rays to fight off jaundice.

Going home day- still a little too small to fit into newborn sizes!

Our first photo of the whole family.  I had been up all night crying because I didn't think we were going to be able to take him home that day as planned.


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