NICU AWARENESS MONTH — T H E W E L L P L A C E

“Our baby is in the NICU,” was a statement we said for three months. I spoke that statement to friends and family, grocery clerks, and passersby, and some immediately knew what that meant, but most had no idea. It’s a place people know very little about until they need to know everything, until they are bombarded with the desperate need for it. It’s undermentioned value in the lives of millions of families across the world needs to increase exponentially. So, here is my perspective; a NICU mom’s perspective.

Gideon, 28 weeker, being held by his big borther, Jacob.

The NICU. It’s a place where your most vulnerable moments are met. It’s a place where your eyes are widened and your heart is quickened and your spirit is spurred to hope. The NICU offered us hope when all seemed lost. It is a place that takes a dire or bleak or impossibility and makes it possible. It’s a place they do everything and try everything. It’s where mountains are moved, miracles are witnessed, and some of the deepest grief is felt. It’s where some mommies and daddies see rescue and others, goodbyes. It’s where angels are lifted to heaven too soon and where angels are given the best chance here on earth. The NICU is where the smallest of children cling to life; one breath, one ounce, one beat, one ache at a time. It’s a place that deserves to be known.

The Isolette and lifesaving machines for Gideon

There are isolettes where infants are kept warm, clean and safe from the outside elements. There are machines everywhere; lifesaving and supplementary machines and just in case machines. There are tubes that feed the babies, wires and stickers and monitors, that measure the baby’s vitals. There are I.V.s and breathing tubes. There are beeps and alarms that alert the staff of a problem. Those alarms go off within the walls of the NICU, and potentially echo in your head for months to follow. There is the low roar of the nurses and doctors intensely caring for sick babies. There is calm and partnership of different staff members to effectively turn the potential chaos into a well-oiled process to care. There are tears, shock, fear and terror. There are soft, longing eyes looking through the glass. There are tiny diapers; smaller than your hand, and tiny bottoms to wipe. There is frustration and relief, sadness and joy. There is victory and devastation, there are very sick and those that just need a little extra growing time. There are long term patients and very short term. The range of reasons to be cared for there is wide, and they do nothing short of everything to help. The NICU is a place where Earth Angels walk among you, caring and furiously providing and offereing top notch care for the littlest among us, for our babies.

These are some of the EARTH ANGEL Nurses that helped save Samuel and so many more at the Kapiolani NICU. Not pictured and deserving to be mentioned is one of our sweet primary nurses, TINA!

These are the people who take on all of the tragedy, all of the tenderness, all of the weight. The NICU care team: Neonatologists, Nurses, Nurse Practitioners, Physician Assistants, Pediatricians, Therapists, -etc. These people. These EARTH ANGELS. They are there 24 hours a day. They are the smartest, kindest, most beautiful human beings on earth. I stood in awe on dozens of occasions at the work they performed on the babies. On our baby boy. They communicate, they rescue, they give and comfort, shed light when all you see is dark, they interpret, encourage, build up and care. They test, retest, assess, diagnose and follow up with everything. They speak life over the children, they hold and touch and whisper to them. They pat the bottoms to calm and comfort, they sit with the moms and dads, enduring the grief alongside with them. They are bombarded with longing eyes of parents wanted to have all the answers, wanting them to predict the future, wanting more, always. And they must be true, they must speak the facts and they do so in a compassionate and gentle way.

Then there are the families met there in the NICU. The families became a lifeline for us in the NICU. The community that is the NICU is like no other. You see them from a distance and you feel their angst and you hold the hands of those close by and you greet each other several times a day coming in and out of the unit. You cry next to them and call on them, you pray for them and root them on. It is a way of getting through it, a way to connect and be the compassion that you feel deep in your heart. The amount of families that came and went in our 3 months there gave us a wide range of love, tenderness, hope and perseverance. We were there every day, and most of the time, multiple times a day, so it was a blessing to have such people to meet us there. The NICU community, while in the trenches, stays with you forever. The people you meet and the relationships you build are a lifeline for those who choose to reach for it, and I would assert will be a lifeline long after the NICU experience is over.

Here are some of the people, the lifelines, that we met through the NICU; people who endured and know the true meaning of what it is to have a child or children there:

Michelle and Alan: They were there the night Samuel was born and admitted into the NICU, and their sweet Alyssa was discharged shortly after Samuel was. They were there every day that I can remember, and here is a short synopsis of their Alyssa in the NICU:

"Alyssa was born very premature at 23 weeks weighing in at 1lb 3.2oz and 12" long. She had stayed in the NICU for a total of 178 days. The whole situation with giving birth early to Alyssa's life wasn't easy. During the duration of our NICU days, the staff in the NICU made the journey a lot easier to handle as days went by. With Alyssa being our first born, they not only taught us how to care for her and explained to us her progress each day, but gave us that emotional support every single day. They, especially her primary nurses, gave us the trust and confidence in caring for our baby, and with that we grew as a family. We are so deeply appreciative of every single doctor, nurse and the entire staff at Kapiolani Hospital NICU who have been on this journey with us."

"Today, Alyssa is 19 months, and although weight gain will always be a factor, she progresses with her milestones. She is full of character and brings so much love and joy to our loves. We thank God for this precious blessing."

Derrick and Kristy: We met them and their twin miracle boys about halfway through our NICU journey and we experienced some similar struggles toward the end of our NICU stay. Here are their twins in all their "twin-ness," and Kristy recalls a bit about the time there in the NICU below.

“I was on bed rest from 22 weeks due to a shortened cervix and my water broke at 27 weeks, which led me to then be on hospital bedrest. I delivered Trystan and Traysen at 29 weeks at 2lbs 5.4oz (Trystan) and 2lbs 5oz (Traysen). They were in the NICU for 2 months and 5 days. The most precious thing (besides my sweet boys) that I got from our NICU experience was the ability to immediately bonded form such deep friendships with our primary NICU nurses and other NICU parents. No one can truly understand all of the emotions and fears that this experience takes you through unless they live it and go through it. And that’s why I will always have such love and appreciation for our nurses and NICU friends because it was in those moments when I was scared and at my most vulnerable, and all I had to cling on to is hope and faith. It was the angels that held us up to continue to not only be positive but encourage and support others as well! It’s an experience that I feel has made me a better person, wife, and mother, simply because it pushed me to my limits and made me realize that I’m truly stronger than I think, that there isn’t anything that I can’t handle!"

Kristy and her twin boys, Trystan and Traysen

Emily and Andy: My soul sister, Emily, and I, met while on bed rest through instagram (of all places) and she was at the military hospital, Tripler, a few miles from us at Kapiolani. Although we weren't near each other physically our hearts became connected and rooted to each other in the journey from then and through the NICU journey. Below is a photo of one of her first times seeing and touching her sweet Gideon, born at 28 weeks and weighing 2lbs 7oz. She had been on bed rest due to PPROM (Preterm Premature Rupture of Memebranes) at 20 weeks. There were so many unknowns to what the outcome would be, and yet Emily and Andy fought for Gideon, and in turn he continues to fight. Gideon's strength and will and spirit is a direct reflection of who not only his mommy and daddy are, but who God is. He is strong and powerful, a mighty warrior.

Emily is not only now a NICU mom, but is also a NICU Nurse, and was such a source of encouragement for me, as well as all the other mommies and daddies enduring the NICU process. Her strength and faith and steadfast spirit was a shining example of what the NICU community is all about. Gideon was a fighter from day one and continues to fight every day.

As a NICU mom, I have had the distinct honor to be surrounded by such beautiful people, served by a top-notch NICU facility, and witness miracle after miracle from 21 weeks when my own water broke until this very day. And, in the spirit of NICU Awareness Month, I would urge you to please look into your local NICU, find out what they need or how you can support them. There is always a need and now we all know how crucially important the unit is to not only the babies, but also to the families that surround them. Below is a link to Children's Miracle Network if you feel inclined to donate to the NICU that helped save Samuel and so many other lives.

https://hawaiipacifichealth.childrensmiraclenetworkhospitals.org/