At the beginning of each month Ella's Halo will have a NICU family tell their story about life in the NICU with their baby. Our hope is that by featuring different families others will have a better understanding of the difficult, roller-coaster ride many face when their baby is in the NICU. Ella's Halo created the Feature Family series, if you are interested in sharing your story, please email us at info@ellashalo.com to share your NICU story and to be a future Feature Family.
Our November Feature Family are very special to us. They are friends that we didn't meet in the NICU but through our Support Group. If you have been following our blog, you know that the friendships we made in the NICU and in our Support Group are so very important to us. When we first met Molly and Zach, they did something very special, they held their very own blanket drive and donated them all to Ella's Halo. I know Molly doesn't know this, but their kind gesture is something I will always remember and that touched us. To know these two parents were wanting to help others during their first holiday without their little baby boy was just so special. Their NICU experience may have been short, but it left a huge impact on them as they continue to give back to the NICU.
Dylan Quinn
Written by Molly Quinn
Former NICU Mommy
Our son Dylan was born on August 10th, 2009 at 29 weeks 1 day gestation. We were going along in our pregnancy with no problems until we were told at our 20 week ultrasound that he was sick with what is called Fetal Hydrops, we were shocked. Hydrops causes a baby to develop at a poor rate due to fluid filling the body in two or more cavities. The fluid is a result of and underlying problem, we never found out what this was. My husband Zach and I were heartbroken. Nobody really thinks something like this will ever happen to them.
Upon finding out that Dylan was sick they told us our chances of him surviving this was somewhere around less than 5%. The following weeks were filled with countless doctors visits and a lot of waiting. We were waiting to feel because we did not know what the outcome would be. Our doctors thought that our little boys heart would stop by 22 weeks because there was so much fluid throughout his entire body and at times I was essentially waiting for that to happen. At 22 weeks his heart was beating and he was still strong. Over the weeks he started to move more and grow a lot. We of course were so in love with this baby and thought "we are going to make it!“. At about 27 weeks they started to become very concerned with my health and feared I was developing mirror syndrome which would cause me to mirror Dylan’s’ fluid, and also be at risk for preeclampsia. At 28 weeks I had developed polyhydramnios, too much amniotic fluid, and they decided to do steroid shots to try and mature his lungs. They also offered to do a thoracentesis. This is a procedure where they use a needle draw to remove fluid from the baby’s lungs. We decided it was our best option to help save Dylan who had plural effusions (fluid in both chest cavities), ascites (fluid in the tummy), and skin edema (fluid under the skin). He was a very severe case. The main concern of Dylan’s survival was lung development due to the fluid preventing this from happening, so we scheduled the procedure to be done.
As we were getting closer to a possible delivery we went to meet with our neonatologist at the University of Minnesota Riverside NICU on the morning of August 10th. We really wanted to plan and be ready for Dylan’s visit to the NICU after he was born. Everything went great, we were even shown a hydrop baby in the NICU that was doing really well. Our doctor explained all of the machines and what they did, he also went over detailed information on what exactly would happen as soon as our baby was born. We left feeling happy and full of hope because of the staff making us feel so welcome and we knew they would love and care for our son when he arrived.
Immediately following our meeting we were scheduled for the thoracentesis. The doctors were able to drain almost all of the fluid off of Dylan's left side of his lung and a liter and 1/2 of amniotic fluid from me. It was quite painful and I had been contracting through the entire procedure. We were done and happy, they actually said let's do the other lung but take a break first. We were put in a recovery room to monitor his heart and his movements and I felt so great, I kept thinking that we were on the road to taking our boy home. Then my water broke, my heart broke, I knew this was not good.
They delivered Dylan by Cesarean at 4:58 pm. I was able to see his perfect face and kiss him before I handed him over to the NICU team. Dylan was in the NICU for almost an hour as they worked on him. The doctor called my husband Zach down to show him x-rays of Dylan's chest and show him all of his vitals on the machines, he was very sick. Dylan was trying so hard, yet his oxygen levels had now affected his health even more, and Zach and I knew it was time to let him go. I will never forget the sea of sad faces that received me as I was wheeled in. They handed Dylan to me and he was at peace, he took his last few breaths in my arms. He was there with Zach and I as we told him we loved him and kissed him.
Not all of the NICU stories end how the parents and staff would like them to. Although we only spent a short time in the NICU with our son, it is the only time we ever had with him. The doctors and nurses made sure it was something special, and what happened in the short time we had with Dylan was somewhat magical. We were able to baptize our perfect little angel and spend almost 3 hours with him after he went to heaven. We were able to have the time to stare at him and kiss him like any parent would. Our amazing nurse Michelle took many pictures and also allowed Zach to give him a bath and change his diaper. Michelle brought us many different outfits, allowed us to choose our favorite one, and dress him. These are the moments that every first time parent dreams of, and she knew exactly what we needed. She will never be forgotten, she holds such a special place in our hearts.
We just celebrated Dylan’s 2nd angel birthday. For the past two years we have gone to the NICU on this day. We love to bring the staff flowers and say hello. We have also chosen to donate books, clothes, and other items that will allow the current NICU families and their babies to feel more at home. We continually want to let the staff know how much they impacted our lives. As parents that had only hours with our son, we feel lucky to say it was such a positive and memorable experience. This is because of what these nurses and doctors do each and every single day. The true sincerity we felt from each person that day will never be forgotten, and we thank them for that.
Dylan touched so many people that day and throughout his journey, as his parents, we hope he is never forgotten. Our wish is that his story can inspire even a small amount of greatness in anyone reading it. He was a fighter and has changed our lives for the better. My husband and I look forward to telling his little brother Brody his story someday.
Thank you to the staff at the University of Minnesota Amplatz Children’s Hospital. A special thank you to Ella's Halo for all that you do, we are lucky to know you Taryn and Ryan. And lastly, thank you for allowing us to share our son Dylan’s story.
~ Molly Quinn (Dylan and Brody’s mommy)
