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Surviving the NICU – My NICU Experience

Surviving the NICU – My NICU Experience

On December 27th, 2014 Matt and I received the news we had been waiting for so long. Finally, after years of trying, 3 IUIs and one round of IVF, we were pregnant. Our hearts were full! Like most expectant parents we ached to tell our family, but because of a previous loss we kept the news close to our chest until we reached 12 weeks.

My pregnancy was amazing, until it wasn’t. After two abnormal ultrasounds, the due dates were off, our OBGYN sent us to a Maternal Fetal Medicine Doctor to get checked out. So, on June 1st, after attending a morning movie with my students, Matt and I sat impatiently to hear what the specialist had to say. At the appointment the doctor determined that my blood pressure was out of control, and because of this, Zoe had severe IUGR (intrauterine growth restriction). She told us that I needed to head to the hospital immediately. In an instant my anxiety was through the roof.

As we drove to the hospital, literally a two minute drive, I choked back tears and called my parents. They had been in this situation before- my younger sister was born prematurely, and unfortunately didn’t make it. This memory was front and centre in my mind. Were we going to lose this baby that we tried so hard for and already loved so much?

When we arrived at the hospital I was immediately checked in, and given a room. This is where I would live for the next two weeks as the doctors and nurses tried their best to manage my blood pressure while keeping Zoe safe inside me. I met with so many doctors during my stay including the Neonatologist that would soon save Zoe’s life. I remember our first conversation with him. He asked us what measures we would like taken to save Zoe; without hesitation I advised him to take every measure to keep her with us. 

Two weeks later on June 13th (I was 28 weeks 5 days) my blood pressure spiked again. This time, as they worked on lowering my blood pressure, Zoe was going into distress. It was time for her to make her entrance. At 6:14am on June 14th, 2015 Zoe was born weighing 1lb 6oz. She was born not breathing and was immediately taken from us to be intubated and put on a ventilator.

As I went to recovery, Matt followed the team of doctors and nurses assigned to Zoe to what would be our new home for the next four months. Room 33 at the Surrey Memorial NICU.

24 hours after Zoe was born I was able to head to her room to meet her. The first meeting was so overwhelming. Until that moment I had only seen photos of her. She was tiny, red, fragile and had tubes, wires and probes all over her teeny body. My baby was sick.

Our lives changed over night, not only were we new parents, but we were new parents navigating the medical system. We were learning new terms, about new equipment and watching other people provide the necessary care for our child. I felt hopeless and useless.

At first we watched the nurses provide the care, but soon, as she grew we were able to to start with some of her cares. We got to change her diaper, check her temperature, and give her hand hugs.

The first two months, although there were some struggles, seemed to be easy. We didn’t know any different. Zoe battled a couple infections and was on antibiotics for a long period of time. One day in August everything changed. Zoe’s breathing tube was occluded and she wasn’t getting enough oxygen. I watched as the doctors and nurses piled into her room trying to save her life. I called Matt and told him he needed to come to the hospital right away. They needed to change her breathing tube but her throat was swollen. They tried re-intubating her 5 times as I watched her oxygen level and heart rate drop lower and lower. I crumbled to the floor. They called us into the room and asked me to talk to her, to touch her. They had just given her a dose of steroids in an attempt to reduce the swelling, to make one last try at re-intubating her. On the sixth try they were successful in intubating her. Zoe was still alive.

This day was the beginning of Zoe’s recovery, but definitely where I started to crumble. I struggled with anxiety and dreaded going into the hospital to see what had changed, or what was worse than the day before. I was having panic attacks daily to the point where I thought my heart was stopping or beating incorrectly. I went to the Emergency Room a couple of  times and ended up spending time in the Neurology Unit because they thought I had a stroke.

I couldn’t cope or care for her on my own anymore. I needed help. Thankfully at the hospital there are many people there to help you. Luckily the NICU offers family centred care. The nurses and social worker would check on me daily. Once I built up the courage, I asked for help. I spoke to the social worker and she referred me to Maternal Mental Health.  Through that service I was set up with a one on one counselor as well as a group for parents who were having the same struggles. I was able to meet other parents feeling the same way. We shared our feelings and gave each other advice and encouragement. As time passed and our children were discharged from the hospital they soon joined the group.

Once I was able to put words to my feelings it felt like a weight was lifted. I found that spending all day at the hospital was draining and soon found myself taking breaks during the day. I wouldn’t go far, but would make sure to head outside for fresh air and exercise. I would spend more time at the Ronald McDonald House where I could meet other parents, eat some food, drink some coffee and watch some TV. 

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As parents in the NICU, it’s important to remember that you still matter. If you are unwell, how are you supposed to care for your medically fragile child? Yes it’s tough to leave their side, but without proper self-care you are doing a disservice to yourself and your child. I believe that had I sought mental health support and practiced more self-care (not sitting on my phone watching netflix and online shopping for 22 hours a day) our stay would have been a little easier.

Zoe was discharged from the hospital on October 15th, 2015. This was an amazing day, but we were so nervous to take her home. She came home on oxygen support as she still needed a little help breathing. Matt and I were now responsible for this 6lb four month old baby. We no longer had 24 hour care from doctors and nurses. We were definitely ready, but leaving our home of the last four months was sad. Leaving our new friends and makeshift family was sad.

Looking back on our stay in the NICU, I would say it was relatively positive. Here are some things that helped me survive:

  1. Accept help from family and friends. If you need food, coffee, or even a conversation make sure to reach out.
  2. Build relationships with the nurses. They are a wealth of knowledge. 
  3. Don’t be afraid to ask questions.
  4. Participate in daily rounds.
  5. Practice self-care: go for walks, eat healthy, colour, knit, or whatever your hobby is.
  6. Meet other parents, but don’t compare your situation.
  7. Set boundaries, if you don’t want visitors don’t have visitors.
  8. If you feel like your mental health is struggling: talk to people, ask for help.

Our experience in the NICU, although long and emotional, was what shaped us into the parents we are today. As NICU parents we needed to advocate daily for Zoe. We attended the rounds with the doctors so we were updated with her care and needs. We were active members of her team and would voice when things weren’t going the way we thought they would.

To this day we maintain relationships with the nurses who cared for Zoe as if she was theirs. Her pediatrician is the Neonatologist that saved her life countless times. We may have left the NICU but it will always be a part of our lives.

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