10 things I know are true …

Grad mom Kirsten wrote this beautiful post on the occasion of her daughter’s first birthday. We loved it so much we asked her permission to republish it here so you all could see it. Thanks, Kirsten, for sharing this with all of us. 

Check out my fancy new hat!

I don’t know how we have survived the last 365 days since our daughter was born at 26 weeks, still in the second trimester. The first 116 days were spent at the NICU at Sunnybrook Hospital and the remaining 249 days at home in Kingston, Ontario. Having a micropreemie rocks your whole world!! Your values and beliefs change, and who you are is very different after spending over a hundred days in a NICU. What you believe is truly changed by witnessing the fight that your child goes through to hold onto life during his/her stay at the NICU. The relationships you make with other preemie families and the stories you hear about their babies connect you into a strong community of love and support. I always promised my husband that I would write something after the first year of our daughter’s life. So here it is…

THE 10 THINGS I KNOW ARE TRUE AFTER HAVING A MICROPREEMIE

#1. My husband is my rock, my best friend and a truly remarkable individual. The love and compassion that he had for our daughter during her stay in the NICU were indescribable and beautiful. This love and compassion continues at home and my daughter is so lucky to have such amazing daddy who she can look up to with respect and admiration.

In the early days of our daughter’s birth, my husband was my breast milk expression nurse. He did everything he needed to do and more. He sang and read to our daughter and bonded with her like two parents when I was unable to, due to the shock of her birth and my brain coming to terms with what had happened to my body and the unexpected end of my pregnancy. If you didn’t already think my husband was awesome, here is the icing on the cake: he lived with his in-laws for over 116 days while we lived in Toronto. This is no easy feat!!

So the first thing I know for true is that for your marriage to survive a hardship like the scary experience of your child being in the NICU, you need to continue to communicate with one another even though at times it is scary and hard and painful. I now know more than ever before that my marriage can survive anything.

#2. My daughter is truly an awesome individual who teaches me new things every day. She is the toughest kid I know other than her fellow preemies. She has taught me to be more flexible and patient than I ever thought possible. Even a tiny, very sick baby can be tougher and more resilient than you can imagine.

#3. The only thing I can do is the best I can do. No more and no less. I told myself this every day at the NICU so that I didn’t feel overwhelmed and out of control in a life that I had no power over. At times, the only thing I felt like I had power over was how often and how long I pumped. When my daughter was at her sickest, I pumped religiously since I felt like it was one thing I could do that could help her in her fight to come home. Now that we are home, I often tell myself the same thing when I am feeling overwhelmed about my daughter’s dislike of eating and textures and the endless gagging and puking, or the constant feeling that we need to do more physio exercises to help her reach her milestones. This daily motto has me take a step back and remember to breathe and to live in the moment instead of fearing what the future may bring.

#4. I can keep my daughter safe in a world of dangerous germs and viruses. Strong infection control practises like thorough hand washing and home isolation during RSV season have kept my daughter illness-free since we left the NICU. Sure, sometimes I felt lonely and isolated during this past winter, but we survived and I would do it again to keep her safe from sickness until her lungs are strong enough to handle it and to prevent a readmission to hospital, or worse.

#5. Some relationships do not survive the NICU experience. Having a child in the NICU constantly shows you the true nature of human compassion which at times leaves you in awe. Other times, you feel shocked at the inability of your loved ones to support you during one of the worse experiences of your life. I had a few people in my life who were unable to deal with the reality of my daughter’s life and her daily fight in the NICU. As a result they are not a big part of our lives anymore, and I feel sad for them that they do not have the opportunity to know her and see how strong and capable my daughter is. On the positive side, I have met many new people because of my daughter’s experience and feel like I have made many new solid friendships.

#6. This whole preemie thing will never be over. It will be part of our daughter’s life story and who she is. Our constant appointments and eating issues and fear about hitting the next milestone will continue forever. Or at least that is the way it feels now. Maybe next year at this time, I will feel differently. For example, at one point, I thought our fight would be over when we got home from the hospital. Now I know this is what I told myself to get through the hospital time. Had I known what was to come I do not know if I would have survived. That said, I know that my fellow preemie parents would have helped me find hope when things felt hopeless.

#7. Being Deaf is not a disability, though it can certainly put one at a disadvantage in a hearing world. It is a different culture and language. Our daughter is deaf and we are coming to terms with this reality. We are busy learning sign language and are so thankful that we have a language to communicate with our daughter. We are also so thankful that my husband’s family is choosing to learn American Sign Language (ASL) too so that our daughter will not feel alone. We have discovered that ASL is a beautiful language and I am excited to report that my daughter is starting to babble with her hands and it is only a matter of time before she starts to sign.

#8. There is nothing as powerful as the compassion and work ethic of the NICU staff. I would have many more war wounds from the NICU experience had I not had the extreme luck of having so many wonderful NICU nurses, respiratory therapists and other professionals surrounding my daughter’s incubator, and later, crib. I am deeply thankful for their care and compassion during our time of need.

#9. Sometimes you just need to walk away from the bottle. Our daughter has suffered from reflux since last September. I hate it. The fear of puking in public or in the car seat on the way to an appointment is a constant worry, along with her painfully slow growth. I have learned during our months of dealing with reflux that sometimes you need to take a step back from the bottle and feeding your child so that it does not become a power struggle because you are so frustrated and worried about their lack of caloric intake for the day. Remembering this helps me to go on when I have to clean up the puke and to remind myself she will not go hungry and I can try again later. 

#10. Finally, I am so lucky and blessed that I can celebrate my daughter’s first year of life today. I can also celebrate the knowledge of my strong marriage; our great new friendships who helped us survived the last year and our membership in the preemie community.

Kirsten, Ian, and Natasha at home.