Over the past few days, I’ve read over my blog in its entirety to remind myself of the crazy journey we went with Riley during her 73 days in the NICU, and to remind myself of how far she’s come. After reading it, I realized that with every rough patch, every hurdle, and sometimes traumatic experience, there was something positive associated with it. So I’d like to close this blog with a review of these highs and lows…temporarily take you back on this roller coaster of a ride that we’ve been on, as we are about to begin the next phase of Riley’s life….A different roller coaster, a different ride, to home sweet home.
It began with the loss of my grandmother a couple days before my admission into the hospital. I was unable to make it home to be there for my family and attend her services because I was in the hospital, and this devastated me. However, this loss meant that Riley gained a guardian angel to watch over her, and it became a given that Riley’s middle name would be Mae, as this was my grandmother’s middle name.
I obviously had a very unexpected, preterm delivery for reasons we will never know. However, we were able to hold off Riley’s delivery for a week while I was in the hospital, allowing Riley to get the dose of corticosteroids that helped to speed up the development of her lungs and other organs, increasing her overall chance of survival. I also had an easy healing process and have been lucky enough to be able to provide her with what seems like an unlimited amount of breast milk since the day after I delivered her. Not every mother is so lucky.
Although there have been times where I feel like I’ve been mourning the loss of the full-term pregnancy I never got to have, while basically living in a hospital for the past 2+ months, observing countless pregnant women every day as a reminder, we got to meet Riley early and she’s had extra days on this earth.
We will always have emotional scars from the night of Riley’s pulmonary hemorrhage…the extremely rare pulmonary hemorrhage with a high fatality rate. However, I think this traumatic experience gave us a different perspective during this journey, viewing other obstacles that Riley/we faced in a different light, allowing us to appreciate and celebrate what may seem like the smallest gains to the average person. Not to mention Riley gained her first BFF out of that whole experience;)
Riley had those dangeriously high bilirubin numbers, requiring the exchange transfusion and putting her at increased risk for multiple other medical complications. However, we watched Riley beat the odds, test after test coming back negative, as she didn’t have any of the medical complications typically associated with premature infants (NEC, significant brain bleeds, retinopathy of prematurity, patent ductus arteriosus, or difficulty with weight gain).
Despite the respiratory support, feeding tubes, phototherapy, PICC lines, etc. that Riley needed to grow and survive in the world she wasn’t supposed to be a part of yet, it was pretty amazing to watch her go from complete dependence on a machine, breathing for her, and then helping her to breathe, and later seeing her free of tubes…no tubes down her throat or in her nose (except during feedings), breathing on room air…breathing on her own. How amazing. Those things most parents may take for granted when their little ones enter this world. She needed a feeding tube to provide her with the necessary nutrition and hydration in order to grow during those first few weeks of her life. So I felt such an adrenaline rush after that first bottle feeding, as it was the first time my daughter could take something by mouth…another sign of maturing…maturing into the newborn she almost was. God, those damn dings and alarms from the monitors were at first terrifying, then they sort of just became a part of the everyday background noise and a constant reminder that we have a medically compromised child. At times, these alarms would drive us absolutely crazy. However, we watched the decline in those dings and alarms each day, appreciating mere silence like never before, observing the decline and near elimination of b’s and d’s, again demonstrating maturity.
We weren’t able to see Riley’s face for several days after she was born because of the continuous phototherapy that was required to help reduce her bilirubin count. Just a few days ago, we were able to finally see our daughter. We could look at her face, and admire her adorable little features, chubby cheeks and all, being free of all medical contamination. Merely being able to see my daughter’s face and watch her while she’s sleeping or awake is such a privilege…it’s such a remarkable gift to have as a parent.
Ian and I were unable to bond with Riley in the beginning of her life due to her being so fragile…and also feeling a sense of fear…fear of over stimulation or that we were somehow going to break her. We had a limited ability to care for her, and had to watch nurses, who were at the time strangers, doing those things we were supposed to be doing as parents. However, I now realize that a parent-child bond is not something that happens in a day, or even two days…it is something that develops over time and becomes stronger with time. This is a bond that Ian and I will never take for granted, and I feel our bond may be even stronger with Riley because of the hardships and challenges the three of us have already experienced as a family.
As unexpected and at times, as unwanted as this NICU journey was for us, it is now a part of us. It will be a part of what defines Riley…her strength, her courage, her feistiness, and all those other qualities that have defined her as our little miracle fighter. This girl was brought into this world to do amazing things, and there is no doubt that she will do exactly that. We can’t wait to continue on this journey with our little one, watching her evolve into the person she was brought onto this earth to be.
I hope you all continue on this journey with us. I will be writing another blog (rileymaelang2.wordpress.com), so I can continue to provide an ongoing update on our super girl. It may not be an everyday blog, as I believe I may have less time on my hands as I’m now fully responsible for Riley:) However, I hope to keep you informed on our continued ups and downs, obstacles and hurdles, and leaps and bounds. Thanks for coming along on our crazy journey.