Introducing new regular blogger and Tiny Sparks WA Volunteer April Ratajczak

My name is April Ratajczak and thanks for taking time to read my blog entry today. I am the mum to an ex 29+6 week premature daughter, Emily, who was born prematurely due to severe pre-eclampsia. Emily spent 11 weeks and 5 days in the King Edward Memorial Hospital NICU. Which means my husband, Wayne, and I spent 11 weeks and 5 days in the NICU as well. From the moment I was hospitalised on Friday 6 June, 2014, we entered a new life we called “limbo”, especially after she was born. I was no longer pregnant, yet at home we had an empty cot. An empty cot which haunted me every single day that I walked by the room. “Be thankful she is alive and doing ok!” I would try to tell myself, but there were still days that empty cot just was more than I could bear. This past Saturday marked one year since that date. Once Emily came home and life settled down (or as “settled” as it could ever be with a baby – prematurely born or not!) I felt the need to “pay it forward”. Tiny Sparks and its merger company, Parents of Prems had been a massive support network to Wayne and myself during our journey so I felt like it was a no brainer of what I would do. I would volunteer with Tiny Sparks!

When I made the decision to volunteer with Tiny Sparks, I was asked what I wanted to do. I excitedly answered “ANYTHING!! (Except sewing.... it’s not pretty when I attempt it!). After the conversation with Michelle, the contributions I walked away with are Social Media two days a week and blogging about once a month. I love to write so I was really excited about the blogging part!

Until it came time to write. The first hurdle I faced was Emily’s first winter cold (have to “love” chronic lung!) The second hurdle I had was a form of writer's block. I said my first blog entry would be my birth story. Perhaps “writer’s block” isn't the right terminology. The words are there, but putting the words onto paper is not something I have found easy to do. Discuss and talk about it in person with basically anyone, no problems. Writing it out seems to bring back a lot more emotions and memories and is so much harder. So bare with me. It’s “in progress” and I will share it... soon. I hope.

In the meantime, I came across an article recently that made me smile, but also made me think of all the points not mentioned for parents of prems or infants who spend time in the NICU or SCN. The article is called “You won’t remember, but I will”. Perhaps you have seen this in your feed on Facebook. If you would like to read it, the link is:

http://www.huffingtonpost.com/jessica-dimas/you-wont-remember-but-i-w_b_6357936.html

A lot of the points in the article are spot on... once we brought Emily home and started living our “normal” (or version of the word) life. A couple though could not be more far from what some of us experience. So I thought I would not delay the posting of my first blog any longer and list some of the things that for me, Emily won’t remember, but I will.

You won't remember the day you were born and the pure panic I had laying on the theatre table watching the doctors work on you. It wasn't until one of the Neonatologists looked at me and gave a thumbs up that I knew you had survived delivery. I can still see his face and anytime I saw him in the NICU or even now when we return for any of our appointments I instantly flash back to that very moment.

You won’t remember the day I finally got to see you. You were two days old. As your daddy led the way to the back of the NICU, I was overwhelmed with the number of incubators and babies in the nursery. Finally in the back corner, there you were. Tiny but perfect. I felt so many emotions, and despite being a nurse for many, many years, I never realised one could actually experience that much at once. Love. Pride. Guilt. Fear. Oh, did I mention Guilt? Let’s discuss that one next.

You won't remember that I felt so much guilt the first time I saw you laying in the incubator. You weren't supposed to be out in the world yet. All of these cords and monitors and wires would be unnecessary had my body cooperated, I thought. I wanted to say “I'm sorry”, and while the words never came out of my mouth that day, they were in my mind and heart every single day for your entire NICU stay.

You won't remember the first time I held you after several days of waiting to hear the words “stable enough”. It was a moment full of so many emotions at once, but in that daily cuddle, I found so much strength. Those daily cuddles kept me going.

You won’t remember my visits to you at night while I was still upstairs on the ward. I would often wake up to the sounds of the babies in the next room crying from the full term babies who were healthy and able to stay in the room with their mum’s. Nurses in the NICU would kindly tell me I should get some sleep, but I knew I didn't have the strength to be honest about escaping the sounds of healthy babies crying and the emotions that was giving me. Plus, there was something about the quiet and darkness of the night and the still of the NICU at 3am that gave me comfort being with you. It felt like it was just the two of us. It was "our" time.

You won’t remember the terror I felt every time your monitors alarmed. As a nurse monitors were a part of my professional life for 15 years. Not any of that was spent in the NICU. I knew nothing. I didn’t know what was normal, and I certainly didn’t know what was beeping when. Between IV’s, oxygen saturation, respiratory rate, heart rate.... they all had a different beep and initially I had no idea what each beep meant. (In time though, we became “beep” pros)

You won't remember all the pain you endured. All the IV’s, blood work, scans, tests, etc. I knew it was necessary but that never made it easy. One day you needed an IV for antibiotics. The doctors asked me if I wanted to leave the room. “I'm a nurse, I'll be ok” was my answer. This is when I learned I am no longer a nurse, I am now a mum. Finally on the third attempt of the IV I broke into tears. For years I had heard “it’s different when it’s your own child” and moments like this taught me that was one of the most accurate statements for mums.

You won't remember the tears I cried on the way home from the hospital many nights, thinking “This isn't fair” “This isn't natural” “Why us?” “What did I do wrong?!” I still remember the darkness of the freeway on our long commute home. I wondered if we would ever resume a life with you at home where you belonged. I also wondered if there would be ever a time on this drive home where the backseat would no longer be empty.

You won’t remember the nights I couldn’t sleep so I decided to Google any medical condition you can think of to see if there was any link to premature birth and pre-eclampsia. (disclaimer: don’t do this. Ever. Ever.)

You won't remember the pure panic I felt when the phone wasn't answered when I called at 3am to check on you. Realistically I knew the nurses were busy (their job is to nurse, not answer the phone after all) but that didn't stop the irrational thoughts from running through my head. “Something is wrong, they should have answered by now!”

You won't remember the day I watched your blue, lifeless body be resuscitated. Very likely the absolute worst day of my life thus far. I have never felt so terrified in my entire life. Once you were moved back to critical care, my mother instinct said “hold your baby, let her know it’s ok”. However you were back in an incubator in isolation and we could only touch you, but even then sparingly as to not over stimulate you.

You won't remember how huge little moments were. Moving off CPAP, off HI Flow, off PBF, your first bath, your first outfit. All are quite little things to some, but not to the parents of a premature or sick baby in the NICU/SCN. These are huge steps, and massive steps towards the finish line. The finish line of going home!

You won't remember the day you finally came home. Your daddy and I stopped outside the NICU with you securely fastened into your capsule to stop and have a quick hug as we both cried tears of joy. We felt like we had won. For the first time, we were leaving as a family of three and no longer saying goodbye to you for the night. You were coming home. Our life of “Limbo” was becoming a chapter in our past, and we were finally starting our next chapter. You won’t remember, but I will never forget.

April Ratajczack