This blog is about Adeline. This blog is about our family. This blog is a culmination of the struggles we've faced together over the last x years. Before Adeline. Leading up to Adeline. After Adeline. This blog is a stream of consciousness from our daily life. This blog is a catalog of everything we've learned, experienced, and persevered through. This blog is about the product of our infertility treatment; 5 failed cycles of IUI, 1 IVF followed by a miscarriage at 10 weeks, and our final, successful IVF. This blog is about our life with our rainbow baby. This blog is about our life with our rainbow puppy. This blog is about the love that John & I have built, the growing up we've done since that fateful night when he refilled my solo cup with fresh Jungle Juice and asked me for my AOL Instant Messenger screen name. This blog is filled with images from our life, unfettered, unedited, but usually filtered. This blog is about the two parents who once fancied themselves amateur photographers and now fancy nothing more than focusing the lens on the light of our life.
This blog is about our medical journey. The surgeries, the procedures, the tests, the hospital stays, the insurance fights, the specialists, the therapists, the countless members of Adeline’s ever-growing team of people [usually] smarter than us. This blog is about the resilience and strength of a tiny human with a heart of gold, the drive of an Olympian, and the fight of an army of Dothraki. This blog is about the tiny, 1 pound 8 ounce, 12-inch human that was born against all odds. This blog is about the mother who endured weeks of dangerously high blood pressure, doing everything she could to hold on as long as possible.
This blog is about the family that announced their first pregnancy over Thanksgiving. The same weekend that was spent dry-heaving into the toilet. This blog is about the family that was told “There is no baby anymore.” This blog is about the family that adopted JPEG to fill a void left by the loss of the life they had created. Even after Addie, that dog has continued to be a centerpiece of our life. This blog is about the mother who gave her up her career as a special educator to focus solely on caring for Addie.
This blog is about the daily medical regimen that we continue to follow, the hours of cares, the countless syringes, bags of additives, medicines, tube extenders, alcohol wipes, adhesive remover, Grip-Lock, Tegaderm, sterile gloves, IV 3000s, line breaks, infections, hours of wretching, feed bags, pump alarms, sheet changings, poop explosions, cans of Neocate, and everything else in between and on either side. This blog is an extension of the social media presence that we’ve created and grown since the day after Addie was born. This blog is a continuation of the Facebook group we created after her birth to keep our family and friends informed.
This blog is a progression from the Instagram feed that has grown to thousands of followers and that has connected us to many other families experiencing something similar. This blog is about the child with a range of expressions that rivals Jim Carey. This blog is about the kid who’s smart as a whip, testing at almost a year over her chronological age, in spite of everything. This blog is about the kid who can’t go to bed without her entourage of Wrog, Chun, and D. This blog is about the kid who wakes up every day yelling, “Baby! Dada! Baby!” This blog is about the kid who elicits “cutest kid I’ve ever seen” from everyone we meet – even parents with their own kids in tow.
This blog is about the kid who shows a innate tenderness towards others with special needs or challenges of their own. This blog is about the kid who has a truly pure and gentle soul. This blog is about the kid who fake laughs when you’re feeling down. This blog is about the kid who asks for “Row Your Boat” over and over, each time acting like it’s the first time she’s heard it. This blog is about the kid who can sign with the best of them. This blog is about the kid who’s spent most of the first two years of her life behind the doors of a hospital. This blog is about the kid who’s had an intestinal stricture, an NG-tube, a malrotation, a G-tube, Nissen, a GJ-tube, and a BROVIAC catheter.
This blog is about the kid who needs two hands to count all of her surgeries up to this point. This blog is about the kid who spent 100+ days in the NICU, fighting everyday – fighting through NEC, weight-gain problems, feeding issues, vomiting. This blog is about the kid with as-yet-undiagnosed metabolic issues. This blog is about the kid who needed PN to finally start growing. This blog is about the kid who, when she got her PN, began maturing cognitively by leaps and bounds. This blog is about the kid who brand reps like it’s her job. This blog is about the kid who loves Disney movies, her dog, her mom, her dad, and life.
This blog is about our continued journey. This blog is about the struggle to wean from TPN. This blog is about the struggle to increase feeds. This blog is about our life as we continue to work with specialists to find out what exactly is wrong with her. This blog is about the kid who’s been given so many wrong diagnoses that her mom & dad have begun to shrug them off. This blog is about the kid who’s a medical mystery. This blog is about the kid who “looks so good”. This blog is about an invisible illness. This blog is about living life with a smile in your heart, no matter what.
In no particular order and with all the structure of an ee cummings poem about a Jackson Pollock painting, this blog is about us.
Listen to our podcast we recorded with Child Life On Call that shares our entire story of infertility, premature birth, life in the NICU, and our long journey to Adeline’s diagnosis.