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10/31/2016 Latest post:
Cutler was born on 8/13/16 at 27 weeks weighing in at 1lb 11oz. He is one of the bravest and strongest little boys we have ever met. I discovered this amazing website on day 78 of our journey with Cutler. I will give you a brief snap shot of the past 78 days then begin journaling moving forward. Cutler started his journey at Methodist where he resided in the NICU for 44 days then transferring to Riley for a PDA Heart Ligation so we could attempt to get him off the ventilator that has helped him breath since the moment he arrived. Riley is where we still currently reside. Cutler was born with a bilateral cleft lip and palate, IUGR diagnosis due to his size/weight and ventriculomegaly. My husband and I became of aware of our sons issues roughly 3 weeks prior to his arrival as you can imagine that is only enough time to arrive at the point of devastation and no time to make any plans for the future. We knew in those early days that Cutlers survival rate was very minimal as he did not weigh enough to even survive the life saving intubation of the vent tube and if by a miracle he did survive no one could tell us what state he would be in. Cutler was so small that they could not tell if all parts of his brain were present nor could they tell if he had a cleft palate. At his early age all we could see was his cleft lip. We knew he had fluid in his brain that was abnormal and that if it continued to grow brain damage along with many other factors could occur. We knew in those moments that nothing moving forward was never guaranteed. We only knew hours before our son was born that he had grown enough to have a fighting chance to be intubated for his breathing tube. From those moments forward we were surrounded by the most wonderful group of people. From our fetal medicine specialist who cried with us as we discovered the issues not knowing what the outcome would look like to our first NICU stop. We must take a moment in time to thank the wonderful group of people that were they're for us in the most trying days of our new journey. The nurses and doctors that nurtured not only Cutlers life but ours in the first 44 days of our journey! The staff at the Methodist NICU are the most amazing group of people! They not only loved and cared for our son through the roughest times they supported and educated us through each crisis as we lived moment to moment. A journey through the NICU is an indescribable experience that very few can understand. I describe the journey as a rollercoaster ride that your child controls - as the parent your roll is to latch your safety bar and hold on for dear life because it's going to be one hell of a ride!