The weekend that followed our Friday diagnosis, was filled with stretches of distraction as well as little to no sleep. Thankfully, we found moments to laugh and enjoy the company of new friends and tender forever moments from seasoned friends.
By Sunday evening, Ian and I were physically and mentally exhausted, still overwhelmed in shock and beginning to grieve.
Our son's diagnosis of a congenital diaphragmatic hernia (CDH) is a life threatening and serious condition, but with that being said it also has huge thriving success rates. We believe our son will live and will grow to be a healthy child, despite the heavy road that lay ahead.
We praise God for the discovery of our baby's condition, because without God we are unsure if this would have been detected. My midwives, nurses, family, friends and ourselves include have all marveled in thankfulness at the time we've been given to save our baby.
Our son was growing phenomenally, we had seen his beautiful face and his long legs during my bout with kidney stones. We had heard his heart beat time and time again, and I kid you not, nurses and doctors always marveled at his development. It wasn't until I fell down our front stairs on my way to work and landed on the side of my belly, that there was any cause for alarm.
Within minutes, my tummy began to feel tight and I started cramping. I headed to L&D to make sure I hadn't bruised or tore my placenta. While I was there, my midwife ordered a bedside ultra sound where they checked my placenta, fluid levels and also preformed an anatomical scan (a proceeder we previously didn't get). They told us my placenta, fluid levels looked great but something didn't look right with baby. It was then, the news no parent ever wants to hear, became our new normal.
At the time, they gave us incredibly limited information, saying they found fluid in areas "that fluid isn't normally found," specifically the lungs. We were immediately referred to a maternal fetal medicine specialist to run more tests.
The three days we had to wait for our appointment ached on and I desperately restrained from scouring the internet. Faithfully we believed for healing and faithfully we clung to each other. Our appointment finally arrived and with it came the diagnosis of CDH.
Our journey is just beginning though it feels like many years have already passed. I spent the entirety of yesterday on the phone with different people from the Children's Hospital of Philadelphia (CHOP). With which we have decided to move our care forward with and our first appointment with them is on November 23rd.
We cried for hours, holding each other, trying to grasp the reality of our lives changing so quickly. Clinging to God in our time of uncertainty and trouble is the only way we know how to make it through this. Thankfully by the true and utter goodness and grace of God our friends and family have set a canopy of hope, love, generosity, compassion, and togetherness that has already engulfed us tightly.
Our prayers are with you, Raelyn! Hang in there, and keep the faith. You are doing everything you possibly can for your little one. The rest is the in hands of your medical team, and God. Hugs. <3
ReplyDeleteThis is a beautiful entry and I am so pleased you have chosen to allow us into this journey of vulnerability. Your fervent faith and hope in our all powerful God speaks so loudly amidst the ebbing and flowing waters of trust. We love you both so very much.
ReplyDeleteI am thinking of you, your husband, and your sweet baby boy. In times when we feel lost.... Cling to the fact that the best is yet to come. So glad we serve such a loving God... Who will provide! I will continue to keep your sweet little family in my prayers.
ReplyDeleteMy Dear Raelyn and Ian, As a mom who raised a child to age 22 and then lost her to cancer, let me please share some words of wisdom. Once you conceive it's been said that your heart no longer remains only inside you. You will forever be at the mercy of life and all the trials it gives once you parent a child. You say you are grieving. You have not lost anything yet other than the expectation of a normal pregnancy resulting in a healthy baby. At this point take things one day at a time and leave your worries with God. Do not think about what might go wrong. Instead, imagine a medical team that repairs your baby boy's problem, instead feel the love and support of all the people around you. Without this experience you would never know how much you are surrounded with love and caring. You would never know the strength you possess.
ReplyDeleteYou probably cannot imagine what your world would be like if you lose him. My advice is: Don't imagine it. Put all your strength in imaging a positive outcome as that is what will most likely happen. I love you both and wish you peace and I will pray for all three of you. Love, Georgie