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Hi! My name is Emily and I'm a writer, a wife to Nick and mother to two very sweet little girls named Daisy and Ella. We live in a quaint little town outside Philadelphia, PA, with our two black lab sisters.

 

I started this blog as a way to stay connected with friends and family after Daisy was born and it has now become a home for musings on everything from our favorite family recipes, books, travel destinations and, ultimately, my quest to balance work, life, self-care and family - all while staying grateful. Happy reading!

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My First Work Trip, The In-Law Jackpot & An Exciting Update from CHOP Metabolic

August 28, 2016

I have officially survived my first work trip since Daisy was born. I was hanging by a thread by the time I got off the plane in Philadelphia, but I made it, and I didn’t cry in public. I did, however, cry three times overall including one five-minute sobfest (like the can’t-breathe-crying-too-hard kind) before I went to bed alone in my hotel room without kissing my daughter goodnight. This does not bode well for the three-night sales conference awaiting me in November...

 

Fortunately, Nick’s parents, Daisy’s beloved Granny and Granddad, made the trip from Baltimore to stay with Daisy and the dogs while I traveled and Nick shot a commercial. Friends who read this blog have heard me often say that I won the “in-law jackpot” - I even feel guilty sometimes describing how wonderful Nick’s parents are because so many people have rocky relationships with their mother-in-laws, specifically. Mine, however, is the absolute best.  The Sullivans arrived in Philadelphia this week with a car full of groceries and pre-made food - pork chops, pasta bolognese, breakfast yogurts and granola, deliciously fresh salads, homemade sugar cookies and cherry pie - and gifts for Daisy.

 

Once they settled in, Mr and Mrs Sullivan took careful notes and quickly learned Daisy’s daily regimen, which is not easy. Every four hours her diaper needs to be changed, the placement of her tubes needs to be checked to make sure nothing has migrated from the belly to the lungs before feeding (requiring a measured pump of air and a listen to the stomach with a stethoscope), her formula has to be mixed and measured carefully then loaded into a feeding bag and primed into the tube which needs to be connected to Daisy’s tube… It’s a lot to remember and it’s nerve-wracking to administer because any error could be dangerous. I would never have been able to make this trip if hadn’t known our sweet Daisy was in the good, capable hands of her grandparents who absolutely adore her. They must have known my heart was aching for her because it seemed every time my mind started to drift from sales methodology to Daisy’s sweet face, a text popped up on my phone with a sweet photo of my girl. 

 

I knew my first trip away from Daisy would be hard but I underestimated just how emotional I would be. I haven’t allowed myself to dwell too much (beyond this blog, anyway) on how attached I am to Daisy, I think because I was programmed to expect that I might not have her for always. For so long, I was prepared for the reality that she might be taken from me - either before she was even born or some time thereafter - so I have always loved her with a quiet caveat that she might not always be here. Being physically away from her for two days was a harsh wakeup call. 

 

Working from home, I spend every waking minute with Daisy. She likes to be physically close to me (or she cries) so for much of the day, I have her laying on my chest as I work on my laptop or she is nestled in the crook of my arm while I take conference calls. Not having her warm little body by my side felt like a limb was missing. Not being able to kiss her soft little cheeks was torture. Not being able to snuggle up to her in bed before sleep made my heart hurt so much. 

 

As you can imagine, if she had been in the hands of anyone other than family, I would’ve been a complete wreck and the trip would’ve been a disaster. Instead, thankfully, I came home to a clean house, a fridge full of leftovers, laundry done and a very, very happy little baby.

 

Like I said, in-law jackpot. 

 

 

In other news, at long last we got Daisy in to see the metabolic specialists at Children’s Hospital of Philadelphia (known around the world as CHOP, one of the best medical centers for pediatric care). We have been waiting for this appointment since her discharge from the NICU on June 7. The Metabolic Disease Program at CHOP is so sought-after, even with referrals from Philadelphia’s best doctors, this was the earliest we could get an appointment. We were not sure what to expect but we knew the team had been reviewing Daisy’s case, calling me for all sorts of records, in the weeks preceding our appointment so I knew they would have a good picture of her story. 

 

The pair of doctors who met with us were visibly taken aback by Daisy’s appearance and demeanor from the moment they walked in the door. She was undressed down to her diaper for a weigh-in and her chubby, rosy little body was squirming all over standard issue tissue paper. She was smiling wide and cooing while busily flailing her little arms and legs as she does all day and the doctors looked a little stunned. They peered down at her, then at their notes, then at each other in disbelief.

 

We went through a series of questionnaires and the doctors did some physical examinations and when they finished, they left the room to confer. When they returned, they explained that they were indeed shocked by what they saw. The Daisy they met was nothing like the Daisy they were expecting to meet based on the medical records. They saw no evidence of a metabolic issue - it isn’t likely she would exhibit this much physical growth and developmental progress if she had any of the lysosomal storage diseases that were presumed to have caused her ascites in the womb. They were delighted with what they saw and felt there was no reason to test her further. They essentially congratulated us on what seems to be a rather miraculous transformation and sent us on our way with no instruction to return.

 

I am still pinching myself several days later. I am so proud of this little fighter who I get to call my daughter. She is the most determined, hard-working person I know and she’s barely even a person. I watch her day in and day out struggle to reach for things, hold her head up, crawl and stand. She tries to communicate with us by making sounds and using her facial expressions and she seems so desperate already to be a big kid. She is so strong, so resilient, so brave and smart already… I don’t want to entirely get my hopes up but I am starting to think we really have a miracle on our hands. And I plan to spend every day for the rest of my life trying to earn this gift that has been given to me - and to the world. I just know Daisy is here for a reason. I really believe she is going to do wonderful things and leave this world a better place. I am so honored to be her mom.

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