2015 was undoubtedly my most challenging yet rewarding year. My faith remained steadfast that each bump in the road, God knew I could handle, even when I doubted myself. Leaving the job I loved, raising precocious little Gracen through all of the teething fun and milestones of her first year, moving cross-country back home to California when I never envisioned being back on the West Coast, selling my condo and our townhouse back in DC, finding out I was pregnant again, buying our home (the first with a yard and no shared walls)... the day before I was put on hospitalized bed rest, being released from bedrest after a month- just days before I'd give birth to our sweet Emerson Claire at just 29 weeks gestation - 11 weeks early and then navigating the last 48 days of the year in the NICU - uncharted territories for our family. The year was filled with tears, tantrums (from me as well as Grace), heartbreak and a heart overflowing. Likening the ride to a rollercoaster doesn't give this year justice, it was a long, difficult ride and at times, I was honestly unsure we would survive.
But we did!
I have been meaning to write a thoughtful reflection on that rollercoaster ride, but as the past 72 hours have been most eventful, I fail to focus on the big picture as I am processing the ride fueled by raw emotion we have just been on these past few days.
As I mentioned last week, Emerson underwent a blood transfusion and fortunately did very well - instantaneously we witnessed a jump in her energy around feeds and her monitoring improved all around, in just 24 hours her crit had jumped to 35.5! The talk of going home began. On Thursday, the 30th - we nervously met with Dr. B to discuss what going home would look like - what medications we had to be prepared to give, safety (we both took an infant CPR class before Grace was born but needed a refresher), and answers to a bevy of questions - including an inquiry about the RSV vaccine, Synagis.
Gracen's pediatrician had asked us if Emme would be on the vaccine as she was born in November and would be coming home at prime RSV season. Turns out, insurance only covers preemies born 28 weeks + 6 days and below - as we were at 29 weeks to the day, Emme didn't qualify for the RSV plan by a single, even though she was at higher risk having a 16 month old sister at home. Out of curiosity, I asked if we could find the out of pocket expense - with the understanding she would need one dose every month until April. Dr. B had Michelle look into it... and that is when the fun began.
Friday morning, New Year's Eve, I did the 5am feeding and Emme did quite well, with the exception that after 8 minutes on the breast, she had a pattern of choking with her heart rate, resperitory rate and oxygen saturation all dipping. Typical of preemies for her gestational age, we switched to the bottle for the remainder of the feeding and I was handed information on the Hep B vaccine she could get before discharge. I had also lugged in Grace's old infant carseat for the pending "Car Seat Test" - preemies have to sit in a carseat for 1.5 hours hooked up to the monitors to ensure their vitals stay appropriate while in the seated position of a carseat- something new for a baby used to lying in an isolette.
Normally I skip the 8am feeding, but I went back knowing I wouldn't be able to make the 2pm as we were having friends over to celebrate "Midnight in Paris" with all of our kids. I quickly went grocery shopping, got home and made breakfast for Grant & Grace before they awoke, and then got back to the hospital at about 7:35am when Financial Services approached me asking me to come to the office.
Apparently when researching the potential to pay out of pocket for the RSV vaccine Synagis ($2000 a dose x 3 doses), our insurance BCBS came back and casually mentioned that, "Oh, Emerson isn't covered under insurance until 1/1/16!" What?!
The news hit me like a ton of bricks. Doing the math in my head, we were averaging over $13,000/night with our NICU stay... multiplying that by 47 days so far... the math was dizzying... How were we not covered? How had this not been brought up before? I had paid bills... My husband has a great job, with good insurance... how could this be possible? What went wrong?
I panicked. I called Grant to have him get on the phone with his HR team ... a task that wouldn't be so easy as he works for a Swiss company that was 9 hours ahead and it was New Years Eve. I had to calm down enough to feed Emerson, and oddly found some peace over the next half an hour - I had a beautiful, healthy baby girl in my arms, and at the end of the day, it was only money. I could go back to work, we could get help from family, but the bills would be taken care of eventually but more immediately, this sweet little girl would be growing up with the protection of her big sister - causing trouble together - making me sweat the little things, but appreciating those little things at the same time. Yes, the dollar amount was daunting, but we would make it work. One of the nurses looked at me with worry and gave me her breakfast card, telling me to grab a coffee and something to eat and have a few minutes to myself to process all of this. Gosh there are good, no great, people on this earth.
I went home. Grant was pale. We had 20+ friends coming over at 1pm to toast 2016 with the kids when the clock struck midnight in Paris (3pm). We had to get through these next few hours. I had to celebrate the coming of a new year - I was ready. Grant went to the 11am feeding to talk with Michelle about our financial options. She assured us we would make this work somehow. He also got a surprise from Dr. B - Emerson was to come home tomorrow!
She had to pass the carseat test and a few others, but we were getting to bring her home to start 2016! Grant texted me this information, I was ecstatic. Of course I called my mom before even texting him back - we needed a game plan! This was the day we had been waiting for - it was all coming so quickly - I was terrified (would I be able to care for this little preemie who has been on monitors the past month and a half? She was still supposed to be cooking until February 1st...) I was excited (finally my girls under one roof) and I was numb questioning everything under the sun with all else we had going on with insurance.
Our friends came, we celebrated! Everyone was so excited for our good news that Emme was coming home - and all thought we were crazy for not canceling the party :) The afternoon was a blur, we brought over sweets and party favors to the hospital for all of the nurses who were taking care of babies in the NICU instead of ringing in the new year with friends and family. We went back home, watched the ball drop in NYC at 9pm with my parents and Grace, then disinfected every last inch of the house in anticipation of bringing Emme home.
I went to sleep by 11 and woke up a new woman, filled with excitement (regardless of the potential NICU bill coming our way) - my family would be complete in just a few hours! A feeling of sadness crept over me as I entered the NICU for our last 5am feeding- I had grown to love spending time with the amazing nurses, learning about their families and adventures. I would miss them - they had become such an integral part of our story, of our family. Emme's nurse for the shift greeted me with adorable photo of her wearing a "Happy New Year" Tiara during her carseat test- she passed!! We were waiting for the doctors rounds to hear what time Emerson would come home, so we decided to go downtown to Rick's for a New Years breakfast followed by the Los Altos New Year 5k.
Grant forwarded me an email. After back and forth with BCBS, Fidelity, the hospital and HR, lesson learned: be careful if you give birth during open enrollment. It seems that the mid-November birthday had registered not as a life event, but as new coverage starting 1/1/16 with the new plan. Fortunately it was chalked up to a clerical error, so we should be fine - but knowing insurance companies, I am sure something else will come up. What a sigh of relief.
After we were home from the 5k, "NICU" flashed on my caller ID. I answered with excited anticipation, yet instantly my heart sunk as we found out Emme just wasn't ready to come home - she was still choking and holding her breath during feeds so she needed to stay a bit longer. It was with bittersweet emotion we heard the news- of course we wanted to bring her home the second we could, but I think we also felt relieved that we had such great care looking out for her best interest, and if there was any hesitation, we agreed we would rather have her there. We had already spent 48 days in the NICU, what was a few more?
I called my parents to let them know they didn't need to take Grace for a few days, when my mom let me know that my Great Uncle Roland had passed away. He was an incredible man who always dazzled us in his wild pants and stories of his days as the Police Chief. He never had any kids, so we were like his grandkids, I always looked up to him as another grandparent. My heart broke. I was flooded with memories as a kid when Pat and I somehow convinced him to let us order Edward Scissor hands on paperview, ride a skateboard in the living room, get toys from the "treasure chest" up in the attic and when he surprised me last November at Grace's baptism in Washington, D.C. Heaven sure is lucky to have Uncle Roland move in. I am heartbroken I cannot fly back East for the services, but his memory will live on with so many wonderful stories to share with my girls.
2016 was supposed to be a fresh start... and boring. So far it has been more eventful than planned but I continue to have faith in God's plan for us, with another guardian angel overlooking Emerson's courageous journey home.
Happy New Year to each of you - all of our love for a happy and healthy year ahead!