We hit breaking point, but we chose to drive through it with a force field of positivity & love.
Updated: Mar 28, 2019
Six weeks and two days later, I haven’t been home since I was in labor. This is so surreal I never in a million days thought bringing Brenden home was In site. I feel as if I’m waking up from this horrible nightmare at last! I can not fathom enough how these past six weeks have dragged on and brought so many different emotions I didn’t even know existed. Seeing things and making decisions I didn’t know anyone had to deal with has definitely woken me up to a whole new world. Being a parent in the NICU is crazy, no one could possibly describe it properly because everyone is here for a different reason facing horrors or miracles.
Brenden got surgery last Friday and has been healing, he has a Gtube now.
I'v spent the last week learning how to feed my son through bags, tubes and a machine which pumps milk directly through his Gtube into his stomach. We are going home with a suctioning device, a pulseOX monitor & a Kangaroo Joey pump for his feeds… Nevertheless, we are going home. HOME I remember the first time we heard that word we looked at each other and repeated the word home, as we started to cry. No one spoke of taking him home for weeks, we didn’t know if he would make it... or what condition he would be in, we still don’t, the future of Brenden is untold. I am scared to question the reality of being home. This feels like a wonderful dream; everything is perfect and going so smoothly. I hesitate falling asleep, what if I wake up in the morning and this isn’t real. Watching Brenden experience this world is truly a blessing, the way he looks at the trees & clouds brings tears to my eyes.
Saying goodbye to the NICU was emotional on so many levels, for the last six weeks this was our home. We have bonded with so many amazing people here sharing so many terrifying, sad and happy beautiful moments together. We are so incredibly blessed for John Hopkins All Children’s Hospital we couldn’t thank everyone enough for the beautiful love and support we have received here.
Our last set of rounds were filled with so much excitement and love. As one of his Drs hugged me goodbye she left me with some tearful words that touched my heart “I wish we had more parents like you guys, people ask me all the time how do I do the NICU… It's babies like Brenden that makes it all worth it. He's doing better than any of us ever thought, we are so proud of you guys, you've been through so much. Bless your heart. We are going to miss you guys, but are so happy you're going home altogether.” It’s impossible to feel lonely at John Hopkins All Children’s Hospital you have so many kind-hearted people looking after both you and your child. Child life, Lactation Consultant, Social Workers, OT & Speech Therapist, Musical Therapists and many more. Although at times it is truly difficult to cope with the terrifying times your facing nothing feels better than a smile to bring you back to life.
Early on in this journey Child-Life came by and spent the afternoon with us is doing Brenden first footprints. We did enough for all the grandparents and even the great grandparents. We turned some into elephants and others into butterflies; we even made one into a bus. It felt so lovely to be able to take our minds off the worries and fears from life in the NICU.
The Social Workers were kind gentle souls as well and always around whenever we needed them, always asking us our personal goals with Brenden. They were always apart of the bigger nerve-wracking meetings with the all his Drs constantly making sure we understood what was being discussed. They were also always there to listen whenever we needed to vent or just share our fears with someone.
The Musical Therapists came in a few days after he arrived to play guitar and sing Brenden his first lullaby, twinkle twinkle little star... there were definitely beautiful happy tears, they really touched our hearts. They continued to check in and sing to Brenden during his stay. https://youtu.be/_O9rUvM-or0
Even something as simple as dropping my milk off at the milk depot was a personal and exciting experience. The team there are always working hard and doing an amazing job 24/7! The lactation consultant was always around whenever you needed her, even though I never did she would always come in and catch up with me and ask about Brenden. We even ate lunch together outside by the garden... YES! There is a beautiful seating area outside with flowers and herbs. The milk depot provides two meal passes a day to mothers providing milk for their babies.
Brenden's Speech and OT Therapists were such a blessing, I wish we could keep them forever. Every visit was like catching up with a life long friend. I couldn’t have asked for a better team for Brenden, they were also there to support us in during this hard time. I learned a lot from them, there’s nothing like the feeling of knowledge to give you power and strength. They spoke to Brenden with such love and compassion, they brought tears to my eyes as we said our goodbyes.
Even the front desk, security guards & cashiers were cheerful and happy spirits. We always had amazing conversations and everyone asked about Brenden by name, our updates and pictures made everyone so happy. My point is no one works here because they have to, they work here because it’s their passion and they LOVE what they do. You can truly feel the compassion they have for your child, I believe everyone who was apart of this chapter in Brenden's life helped him heal. All the soft whispers in his ears of encouragement and love made the world of a difference. Seeing these lovely people in the elevators and hallways made me feel at home. It was comforting that we never felt alone, especially while walking back to the Ronald McDonald home after being with Brenden all day.