Families Who Have Been Touched
ISAAC JUDE 2.26.2016
Isaac passed away in February 2016 after fighting dipg for almost a year. Isaac was strong in everything he did in life, and he was strong and brave until the end of his fight. Isaac loved school, he loved his friends, but his favorite thing was playing basketball. He lived and breathed hoops; he was a great player as well as a natural leader.
He was a bright student and a great role model for those around him. Isaac left an everlasting mark on those who knew him and on those he never met. Please keep his family in your thoughts and prayers today. Jessica Battle Jaymie Wasserman #DefeatDipg #IsaacJudeStrong
BROOKE AND BABY B
I am so grateful for the pictures that were taken by Dana and the portrait drawn by Rachael of my daughter the day before her first open-heart surgery. Not knowing if I was ever going to hold my child alive again was the hardest thing I’ve ever experienced.
These moments captured have been cherished, and I feel so blessed to have them. Had she not made it, those would be some of the few tangible things left of her. She has survived seven more surgeries; she is definitely a fighter.
I have many more pictures of Brooklyn, but these ones definitely hold a special place in my heart.
REMEMBERING HAILEE ANN
Five years ago, during my 20-week ultrasound, my husband and I found out that our little girl’s heart was no longer beating. After a whirlwind of questions and decisions, we decided to start the inducing process the next day. When we got home from the ultrasound appointment, I decided to contact Dana because I knew she had experience taking pictures of babies in these certain circumstances. Dana was absolutely wonderful.
Dana and I kept in touch throughout the inducing process, and I kept her updated every couple of hours. Dana even brought her camera to work just in case I called during her work hours. The induction took quite a bit of time, and as soon as Hailee was delivered, I had my nurse call Dana.
Dana responded and arrived within minutes. She was absolutely wonderful. She took candid photos that truly captured our emotions. Dana knew from her experience exactly what pictures to take to capture the memories we have of Hailee. She stayed as long as we needed her. Dana gave us the greatest blessing as it is our memories that we look at each day and remember Hailee Ann.
Mark and Tracy Henrich
EMILY AND KLINT
My husband and I spent two long years injecting medications, enduring surgeries, a miscarriage, starting the adoption process, therapy, and emptying out of savings accounts. On March 20, 2012, we got the surprise of our lives, not only had both embryos from our fourth full round of IVF implanted, but one had divided into identical twins. We were pregnant with triplets! This particular type of mixed triplets is often times, referred to as "a pair and a spare." The next thirty-five weeks were scary, amazing, and the most cherished time of our lives.
We made it through the identical twins not being mono-mono at nine weeks, baby C's placental abruption at 11 weeks, preterm labor at 22 weeks, bedrest that began at 27 weeks, gestational diabetes, cholestasis, two rounds of injected steroids for everyone's lungs, our triplet baby shower, to the OR at 32 weeks for a C-section that was then canceled and until finally when each baby was estimated 5 lbs. We finally had a set OR date of October 8! On October 6. I woke up with chills and backache.
The exact details of that morning's appt. will always remain a blur, but several hours later, we finally got an ultrasound with a physician. His next sentence would change our lives forever. "I'm not sure how to tell you this, but baby B's heart has stopped," I remember literally feeling my heartbreak, and I could not catch my breath. My husband crumbled to the ground and made a sound that will haunt me for the rest of my days. I was rushed to the OR to rescue our survivors. Baby Elle was born sleeping.
She was the most beautiful baby I have ever seen, and she was identical to her sister Olivia. From the moment we were told Elle's heart had stopped, my life stood still. I had to remind myself to breathe. Not one person in the OR that urgently staffed with an emergency team took a photo, and my husband was not allowed in the OR. Later that evening, a graceful stranger showed up to our hospital room with a kind smile and stated she was there to capture our angel and our family. It was a true miracle and a gesture we will forever be thankful for.
The only photos we have of our daughter are because of an amazing person who volunteers her time, passion, and talent to grieving families. We will never have Elle's first day of kindergarten, prom, wedding photos, but we do have our cherished photos Dana captured for us. Her breathtaking photos are hung in our home so we can remember her beauty every day.
BABY BOATRIGHT'S STORY
Wes, although you were born silent, your memory will never be. Created through love, Mommy and Daddy will carry you in our hearts every moment of every day. You’ve taught us so much, and you have made us so strong little bear. If love was all that was needed to save you, you would be here in our arms. You fought against insurmountable odds, diagnosed with Ebsteins Anomaly and Pulmonary Hypoplasia. You gave it everything you had, and we are so proud of your son.
Your legacy lives on always, your heart and lungs will help the research of preventing and treating Congenital Heart Defects and Pulmonary Hypoplasia. Mommy and daddy will cherish every moment and every kick you shared with us. Please watch after us and give us your strength until we can be reunited with you once again, sweet boy.
Although our hearts are shattered, you are the missing puzzle piece we’ve been looking for. Our lives without you will never be the same. You no longer have to fight, you did your absolute best, and you can rest now bubba. Wesley Izaiah, our little fighter, our Guardian Angel, Mommy, and Daddy will always love you with every beat of our hearts.
To learn more about CHD, You may read Izaiahs' story on Facebook.
One Year Ago. January 29, 2020.
We were able to have some professional family photos taken courtesy of Gentle Wings (an AMAZING non profit who offers free photos to families facing similar situations as ours). These are photos that we will truly cherish forever.
Both sets of Gianna's grandparents arrived in Rochester!!! Gianna's amazing Godparents also came down. And since we were in our own room, they all finally got to get some long-awaited Gianna SNUGGLE TIME! It was so beautiful to see the most important people in our life cradle our perfect little girl in their arms. The amount of love that was shared on this day was truly something words cannot describe. The Lord's love and goodness was ever present in Gianna's hospital room.
Oh Gianna, you sure are blessed with the most amazing grandparents and Godparents. The love they have for you is so beautiful. And I know that you love them even more ❤ Please continue to keep all of them in your prayers, sweet little saint. We love you forever, Gianna Theresa.
Miss Emily... strong and fierce!
A perfect picture by Gentle Wings to share on World Prematurity Day and a few words from my 18+ years of experience in the neonatal world.
Many people don’t know much about the NICU world until they are, under unfortunate circumstances, having been invited because of their own child or someone else’s child spending time there.
There is a HUGE spectrum of what premature means. Premature can range from being born at the youngest of limits at 22 weeks gestation up until 36 6/7 weeks gestation, just shy of ‘term’.
Many people take for granted a healthy pregnancy and haven’t a clue on all the things that could go wrong or cause complications, prompting an early delivery.
If you’ve never had the experience of what a premature baby is, it would seem they are just ‘small versions of term babies’. Yes...these babies are small but they are cut short of development of their entire body. These preterm babies can be at risk of gut infections and rupture, severe lung disease with the need of homegoing oxygen or even a tracheostomy to breathe for them before they can get home. Their eyes are at risk for poor development and need for intervention to prevent blindness. Their brains are fragile and can have bleeding and brain matter changes that can cause lifelong neurological impairment. Their immune system is so fragile that a common cold can send them from the comfort of their home to an ICU.
But what many don’t realize is the STRENGTH of these patients, their family and those caring for them all. The energy, emotion and know-how to get these babies to grow, mature, develop and get home are also often taken for granted. The turmoil and pain of the ‘roller coaster ride’ of ups and downs these families go through in the hundreds of days spent in the hospital is like no other. As caregivers, we forget unlike us, this ISNT their norm.
It’s an honor and a privilege to care for these babies. I can’t imagine what life would be like without them in my life. But what I wouldn’t give for there to never be a baby that needed to be born early.
So I’m sharing this post to bring awareness to those who have not been ‘part of this club’. If you or someone you know ever needs to go to a NICU - know there are good people caring for and even stronger families and babies in there to show you the way!
💜 ‘Who knew something so small could take up so much room (with all their equipment 🤷♀️ and...) in your heart.’ 💜
Photo Credit Gentle Wings