164 NICU Days and Beyond

164 NICU Days and Beyond

“Motherhood requires women to muster more strength and fortitude than they could have ever imagined. But some mothers, need even more than the rest. Amazing Moms like Raquel Lee, have survived unimaginable challenges and continue to face them on a daily basis. I'm honored to share Raquel’s journey and her words of wisdom for all moms facing the daily grind.”

Before motherhood, I was an energetic, hard-working, fun-loving, work-hard-play-hard type of girl who gave her 110% to everything, including work, family, friends, and my husband. I worked as an ER nurse for 7 years, and I loved the adrenaline rush of saving lives.

Now I’m the same hard-working, fun-loving gal, with a little less energy and free time. My heart lives outside of myself, in the form of an unbelievably happy (and stubborn!) nearly three-year-old boy, who happens to have cerebral palsy. I have worked as a nurse practitioner for Baptist Hospital for the past 3 years. I feel blessed to be able to work in a place I love, where I get to continue helping people heal, with a team that I love.

On family:

I'm the youngest of four siblings of an immigrant Filipino family. When I was two, my parents decided they wanted a better life for us. They gave up their lives and their family business, and made the move to Florida. My parents have always been exceptional role models. It is from them that I learned the values of putting your family first, and working hard to make your goals a reality. They just celebrated their 52nd anniversary. This amazes me because it’s so rare today. They have endured quite a few hardships during their marriage, but they always stuck together and worked through it.

I keep this in mind when my husband and I are feeling overwhelmed by life's stresses. Amidst a very busy period, with my husband being in his first year of his Emergency Medicine residency, we found ourselves unexpectedly expecting. We were thrilled! I was having a wonderful pregnancy. But in my 24th week, I suddenly began cramping and found out I was in preterm labor. After 5 days of a roller-coaster ride in the hospital, trying to keep him from coming out, my water broke, and Nicholas arrived a few hours later. He spent 164 days in the NICU. It was the longest roller coaster ride of my life.

He is now nearly three. Though he has a long road to go and many physical limitations to overcome, he is the happiest, most stubborn, tenacious, (did I mention stubborn?) and playful little boy with the most infectious laugh I've ever heard.

On the challenges of motherhood:

Being the mother of a special needs child provides a constant daily challenge. If I thought I was good at time management before, I'm definitely an expert now! Between taking Nick to multiple doctor's appointments, physical therapy, and feeding therapy sessions each week (and often multiple in a day!), I am still working to find a balance being a mother, wife, daughter, sister, coworker, and friend.

On a more serious note, there is the continuous challenge of questioning myself, whether we are making the right choices for our little one, or if I'm doing enough as a mother for him to reach his potential. At some point, I'm sure that all of us mothers question ourselves. But in our particular situation, I'm not talking about making choices like what little one should have for lunch (although that is another discussion on its own since Nick is a difficult feeder to say the least!), or what VPK we should put him in.

During Nicholas' stay in the NICU, he had two nearly-fatal infections and spent weeks on a ventilator, more than once. In his first year of life, he underwent no less than 10 neuro-surgeries. Two of these led to meningitis due to infections. Since then, he has undergone about 5 more procedures. On more times than I'm able to keep track of, we have had to make the choice to put our sweet boy through yet ANOTHER surgery. Not doing it could mean further delaying his development, but performing the surgery could lead to another infection and irreversible damage. There has never been an easy path with Nicky, but we have been blessed to come across wonderful doctors, nurses, and therapists that have, no doubt, made our challenges much easier to face.

On her best mommy moments:

During our journey with Nicholas, there have been so many rewarding moments amidst the challenging ones. It's a tough thing to watch your child endure so much so early in his life. How Nicky has turned out as happy as he is, is a mystery to me. But there he is, my happy boy. One of my favorite moments of the day is when he wakes up every morning with a toothy smile, calling "Mama!"

One of my other favorite moments, is each time he surprises us by doing something we weren't sure he would ever be able to do. Having some degree of cerebral palsy, he has right sided weakness. We thought he would not be able to use his right arm, but lo and behold, he recently started reaching for things with his right hand, and even gave me a high five the other week! The great thing about having a child who develops at his own pace, is that you are constantly surprised and amazed! We are often told by his doctors and therapists, that most kids who have been through what he has, would not be doing as well as he is, and that it is due to our perseverance and positivity. That, by far, has been my proudest moment. It makes me think that maybe I'm on the right track with this motherhood thing.

On finding time to take care of herself:

On a day-to-day basis, the challenge I find myself struggling with the most is making time for myself. Although I was the youngest of four siblings, there is quite an age gap between myself and my next older sister. My brother and sisters all moved out of our house by the time I was 6 or 7, so, for all intents and purposes, I grew up like an only child. Although I was always a social butterfly, I was used to having a lot of time to myself. That all changed after becoming a mother, as most of you know too well. I can't say that I am the best spokesperson for a perfectly-balanced life, because three years in, I am still trying to find my way. But here are a few things I've learned along the way.      

1. Make a conscious effort to do something for yourself each day. Even if it's just for 10 minutes, go read, take a bath, eat ice cream in the closet, watch cute animal videos, or whatever it is that lets you escape from "mom" mode.     

2. Don't be too proud to ask for or accept help. We see too many posts on social media of moms who make it appear as though they have super powers. You know, those moms who shipped 3 kids off to school with sandwiches in the shape of butterflies, went to the gym twice, cooked for the next 3 weeks, and saved the world, all in a day. But we’re all aware that none of us can do this alone. If you’re anything like me, it's a miracle if you make it to the end of the day with the same clothes on that you started with, and have 3 decent meals. Do your sanity a favor, and accept that offer from your mom, sister, neighbor, or best friend to watch little one for an hour. Get something done that you've been putting off. Or for your health, take a nap at least!        

3. Don't neglect your significant other. It might sound cliché, but my hubby and I have made it a point to have date nights regularly. I can’t stress enough how important it is to spend time together, not performing to-do lists or singing The Wheels on the Bus. Especially when you have the extra stress of raising a special needs child. Taking a little time to de-stress together, and just staying connected as a couple, makes us stronger parents and helps us focus on the continuing journey of raising Nicky. It also makes me feel more accomplished to be able to     balance work, hubs, and baby. 

4. Don't forget about your own health. It's so easy to put your health on the back burner, and I definitely did that for the first 2 years. It didn't help that Nicky decided he wanted to be in the hospital every 3 months, like clockwork. But this past year, I have made a conscious effort to get back into being active, and having a more balanced diet. Note -  effort is the key word. I may not get to the gym as often as I want, but I've at least started incorporating walks, home exercises, and a better diet (sometimes!) back in to the routine. 

5. Lastly, keep the laughter and fun alive. No matter how hard things get, acting silly and having some fun never hurt anyone. There have been many moments that I felt overwhelmed and depressed. But after having a good laugh with hubs, my sister or a friend, I didn't feel so overwhelmed. It gave me just the boost I needed to face whatever challenge I was going through.

The Lee family recently participated in the March of Dimes Walk 2017 in honor of their son Nicolas. The March of Dimes organization funds "lifesaving research and speaks out for legislation that improves care for moms and babies." Please support this very important cause by donating to the March of Dimes here.

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© Nicola Rios Nogales and ispeakmom.com, 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicola Rios Nogales and ispeakmom.com with appropriate and specific direction to the original content.

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