Tuesday, November 17, 2015

the 48 hour shock

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. 

Sunday, November 15, 2015

To the ones who deeply care for us-

This past Friday my husband Ian and I found out detrimental information about the health of our baby boy. Specialists have found a hole in his diaphragm that has allowed his stomach/intestines to grow up through said hole and into his lung cavity. This condition is diagnosed as a Diaphragmatic Hernia, for more information here is a link. We are transferring our care as of now to Boston, Ma, as Maine does not have the resources to care for our son.

We will be having an appointment with more specialist and a neonatal surgeon, hopefully this upcoming week. We will then have more information about severity and his current state of lung development. Until then, this is all the information we have. Our lives are and will be continuing to change in the coming weeks/months as we prepare for our baby boy's delivery.

We are asking that you would not forget our baby in this season and that he and our family would be in your prayers.

We will not stop believing in the possibility of full healing- nor will our peace and hope be shaken. We fully trust and are relying of God- who has promised to carry us through the deep waters of life.

Thank you for standing with us