Wednesday, June 20, 2012

Scars and Memories

By Rob Berry

Every once in a while I am taken back to the time our daughter Hazel spent in the NICU. Being born at 24 weeks she certainly spent a fair amount of it there.

    What takes me back? Sometimes it is just a moment of quiet reflection. Sometimes it is a picture I stumble across on my iPhone or a conversation with a friend or family member I haven't seen for a while.

    Recently it has been the physical scars left on our daughter's body that take me back. They are a very real reminder of just how perilous and uncertain her early days were.

     There is the obvious scar from her PDA ligation which immediately jumps out. The surgeons did a great job, it is just obviously a rather large mark on a still rather small body.

    As our daughter has grown, we have noticed new scars appearing on her hands, feet, forearms and legs from IV's, blood gases and PICC lines among other things. They aren't new really, they've just become apparent as her little body has grown more ample.

    I can't help but think about some conversations that we had with a few doctors right around Hazel's birth. These chats irreversibly altered what my wife and I would consider to be normal talk about babies.

    Our first such conversation was with a doctor who joined our ultrasound tech in the hospital to deliver some somber news. It could be worse but our situation was not enviable.

     He estimated that our daughter was around 1 pound 6 ounces and told us babies that size and gestation usually have a hard time making a go of it.

    Numbers like 50-60% chance of survival and possibly 80% chance of moderate to severe long lasting issues still echo in my head.

     The look on his face was telling; we were up against it. Finally he wished us luck and left us with the thought that every day Hazel stayed inside, she would have a 2% better chance of surviving.

     Well maybe that extra 2% was all she needed. Fast forward to the delivery room a day later. One of the Fellows from the NICU joined my wife and I to tell us a bit about the NICU and what we would be in store for.

    Again, the message was honest. There was no sugar coating the fact our daughter was in for a long, hard go of it if she survived. We had no idea at the time what that meant but did we ever find out.

    I think back to the second time I saw our daughter about half an hour after she was born. Her body was purple from being so early and also as a result of delayed cord clamping.

    We were informed that this was normal and that it was a good way to help with iron stores as well as reducing the risk of Intraventricular  Hemorrhage  (brain bleed) and Late Onset Sepsis (infection).

    Those words should have freaked me out but at that moment they didn't. I heard the words but at that moment all I remember is thinking how beautiful Hazel was and how much I loved my wife.

    About a half hour after Hazel was born, I joined the Neonatal Transport Team in a side room where she had been stabilized. She was intubated minutes after birth and was packed up in blankets. I was told I that if I scrubbed up well I could touch her.

 Naturally I was ready to go quickly and returned to Hazel's side. I was told babies this size have extremely underdeveloped nervous systems and so you can't caress or stroke their bodies like you might a 'regular' newborn. Firm hands and containment were the way to go.

    Hazel grabbing the tip of my index finger at that moment is an image that is burned deeply in my brain. Her whole hand and all her fingers wrapped around the tip of my finger with some room to spare.

The best way I could describe how she looked in that moment to someone who has never witnessed a micro preemie at birth is to say she looked like a newborn baby bird without a beak. Crazy right? But how else would you describe it? There is no frame of reference that would even come close. She was perfect. She was beautiful. Looking back it all still boggles my mind.

    There were many more lessons about preemies over the following days, weeks and months. One such lesson was the meaning of a 'honeymoon phase'. This is where even micro preemies often appear to do well for the first 48-72 hours and then may start down a different road.

     We were graced by God and a bit of luck that our little one pulled through that critical time but we also saw others that weren't so lucky. I never thought I'd feel guilty (yet grateful ) that my child survived her birth but it is something my wife and I grappled with a lot early on. This feeling has lessened over time but it will never leave me completely.

    Being through all of this has done many things. I know for a fact that there is not a moment in our daughter's life we will take for granted and believe it or not for that I am grateful.

    The NICU has left many scars on my young family, some which will never heal and some that over time will slowly fade. Our daughter's 107 days took me to some really dark places and pushed me way beyond what I thought I could handle. Endless days and nights in a Level 3 nursery will get to even the strongest of people.

    It also left our little family with some amazing memories and many firsts most people never experience.

    I will never forget seeing Hazel's eyes open for the first time. It was approximately three weeks after she was born as her eyes were still fused at birth. When they finally struggled open, it was a breath taking.

    Hearing her cry for the first time after two months of being on the vent will always stay with me. The sweet sound of her little lungs doing what nature intended gave me goose bumps.

    Putting her first preemie onesie on her after 2 months and seeing it actually ALMOST fit her, wow.

    Finally, my wife and I met some amazing people in the NICU. Doctors nurses, respiratory techs, unit clerks and social workers became friends.

     We met a couple that took us under their wing while they were still going through their own NICU journey. We remain in touch and recently both families were together to celebrate our children's first birthdays.

   As we neared the end of our NICU stay we looked for ways to pay forward the kindness bestowed upon us and tried to reach out to other parents through a support group.

    I think very few people know how close we came to losing Hazel. It is because of this fact I cherish every moment I get to be with her and my wife.

    As I continue to write, I hope my words may offer insight and a sense of normalcy to people as they go through a very abnormal experience.


  1. This comment has been removed by a blog administrator.

  2. I found your website the other day and after reading a handful of posts, thought I would say thank you for all the great content. Keep it coming! I will try to stop by here more often.

  3. This really hit home. Beautiful to hear other paren'ts thoughts. Very touching. NICU is a rough road!

  4. Your experience is very similar to what we went through with our 23 weeker, Jaxon. From the talk with the doctors, to all of the scars, and especially the feeling of guilt because our child survived. I'm relived to know that others have had that same feeling. Thank you for sharing!

  5. Thank you for sharing this. I went through many of those same issues with my 24 weeker who is now 5.