You know what is really fun? Hospital Bills

Ugh. The dreaded "Stanford Health" envelopes. From a brand perspective, they did a great job. The stationary is not only welcoming, but also alludes to the fact that they mean business... and boy do they mean business. A few weeks ago, I posted how elated I was that I thought we had received the very last bill for Emery's NICU journey, but unfortunately that stay keeps taxing our bank account. Fortunately, insurance has covered much of the costs of her 63 day NICU stay and my 31 day hospitalized bed rest "vacation" in 2015... but we are finding out the hard to swallow truth about "preferred providers" even when we had no preference and we would have preferred to not have been in the situation. 

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Each insurance company negotiates directly with the hospital on a "deal" and our BCBS just doesn't flow well with Stanford unfortunately. This afternoon I came home to approx $2750 worth of bills - which when you boil it down, isn't so bad. $2,069.50 was for 20x doctors visits in the NICU. Just routine, each visit lasts about 3 minutes. Deemed "Critical Care", the hospital charges $351.00 per visit, the hospital "deal" gets an adjustment of -$33.23, then insurance pays -$254.22 and we are left with just $63.55/day to pay out of pocket... which I get could be a lot worse -- but it adds up and with Emery's "High Risk" Clinic coming soon and ongoing appointments, blood labs, etc. 

The $675.43 bill was for the ROP Eye exams back in February which our insurance doesn't cover at all. Now if you remember the discussions on Retinopathy of Prematurity, being born at 29 weeks, there was a high likelihood that Emerson could be blind and have a detached retina, but we went for weekly exams at $515 a pop to determine severity/risk as if she had been found to have damage, we would have options to proceed surgically in hopes of maintaining the possibility for vision. 

To date, we've paid out of pocket over $20k for Emerson's premature birth, and obviously every dime is well worth it now that we have this beautiful, happy little girl home with us. But man, the pain keeps coming... and we are in a fortunate position... I cannot imagine a younger couple facing the situation who may not have the savings and "cushion" we do. 

We are blessed with the greatest of wealth with a healthy family right now, but if you are sending some prayers up to the big guy tonight, please pray for the families who aren't as fortunate as we are...

 

Big Day: Paid off (hopefully) Emery's last $900 of doctors bills!!!

The haunting doctor's bills from our NICU journey have been overwhelming. While we fortunately have the $$ to pay them off, receiving $900-$5k doctors bills (after insurance) each week, spending hours negotiating them, and frustrated moments trying to maximize payments on credit cards so at least mama gets some points to shop with (okay, guilty pleasure/silver lining) I believe that aside from the upcoming payments for the Stanford High Risk Clinic, we have paid off all to-date bills! It feels as if the biggest of weights has lifted off our shoulders...

Even with our amazing insurance, we have spent about $18k out of pocket. The biggest reason, is our insurance only covered visits from some doctors, not all - but when your child is put in the NICU, you have no choice which neonatologist is on-call that day and obviously we were not going to ask that our daughter not be seen for days at a time until someone in our network was available. It is a tough call, one that I have spent hours upon end negotiating with the hospital and insurance - and, fortunately, had pretty great resolution. While we have tucked away HSA from Grant's paycheck, HealthScope actually makes us pay everything out of pocket and we get reimbursed at the end of the year- which is frustrating. That said, hopefully we are now on the other side of things, looking forward to saving again!

Two months of thriving!

 

Three months ago to the day, I walked in to a routine MFM appointment and was immediately put on bedrest at just 24 weeks- instantly my whole life changed. The trip scheduled for the next day to Palm Springs cancelled, my daughter and husband moved in with my parents and I spent a month flat on my back in a lonely hospital room praying my sweet girl would keep cooking. After a month of bedrest I was discharged but within days I ended up back in the hospital and in labor.  

Tomorrow, our courageous Emerson Claire turns two months old. The past 9 weeks have been a whirlwind of emotional highs and lows- but each day we were blessed to witness this wee little thing grow stronger and learn how to thrive in this world she entered 11 weeks early...  

Due February 1, 2016, giving birth on November 15, 2015 came as a huge surprise- and the past few months have been peppered with long days and tough nights by her side at the NICU and balancing logistics of soending time with Grace and figuring out childcare. Until a reader mentioned it, I never realized that I hadn't shared why we named her Emerson... Emerson means "Brave" and when she came too soon, we didn't have a name picked out yet but in the labor room ran Emerson/Emme by her grandparents and all agreed on it. But it wasn't until the first time I saw her little body fighting so hard to stay with us that I knew there was very little I could do but giving her this name was my way of instilling the little bit of bravery into her life that I could... I knew she would need it... We both would.

Again we have been told tomorrow is the day we get to bring her home (we had a poll, and if she does come my mom wins!) This time, I am not nervous- only excited. I am ready. Emme has doubled her birth weight and looks strong- her feedings are going really well and she hasn't had an episode since the early hours on 1/12. God willing, tomorrow I will have my family together - the ultimate pay off for all of those tough days on bedrest and in the NICU. While Grace and Emme did meet on Christmas Eve, they haven't seen each other since aside from Facetime. We are SO close... And recognize we wouldn't have made it this far without the continued support of our friends, exceptional care by our nurses and the power of prayer. Thank you!

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A Thank You Note for the Zuckerberg Family

Dear Mark & Priscilla-

While breastfeeding my 29 weeker at the NICU just miles from you, the photo of Mark & Max at the doctor's was at the very top of my newsfeed. Our daughters were born the very same week just a few miles from each other. There is a strong possibility that they one day may play sports against each other, celebrate a music recital, or even be in the same class. 

My husband Grant and I sit in this NICU day-after-day, night-after-night buzzing with beeps from heart rate alarms and air filled with tension as parents hope for the best yet prepare for the worst. But we can only take care of our own children. I NEVER want to see either of my daughters in pain or sick - especially from something that can be prevented. I also hope to never hear of anyone else's child suffer from polio, measles, Hep B, or any of the other diseases preventable by vaccination. Being a mother bedside and helpless is a feeling unfathomable - yet in the instance of vaccines - avoidable. Your simple act of sharing a photo of your daughter receiving her 2 month vaccines was so much more than a photograph to us, it was a call for humanity - a reminder that all too often we are focused on our selves and our own families, overlooking the impact of our parenting on society as a whole. 

I did everything I possibly could to prevent my pre-term labor. A month away from my 1 year old daughter in an isolated hospital room on bed rest with daily injections of progesterone and frequent blood labs and experimental pessaries- yet I still gave birth to our beautiful Emerson Claire at just 29 weeks of gestation - 11 weeks early. The guilt of not being able to stop it weighs heavy on my shoulders. Since her birth, my husband and I have tirelessly been at her bedside working with doctors. The next few years of our lives will be filled with social workers and therapists to catch her up by kindergarten...if we are lucky. I sit on the board of the Prevent Cancer Foundation - prevention is near and dear to my heart - and is all about intelligent decision making. I couldn't prevent this pre-term birth, though I tried. But I will be empowered by medical advancements and vaccinations to protect my daughter in every way I possibly can.

I am sure you and Priscilla educated yourselves on the heated debate about vaccines, which is why I applaud you further for being so public with your decision. With my first daughter Grace, we had her at the Air and Space Museum in D.C. at just 8 days old - but with Emme we will have to be more cautious - we have even be advised to ensure she isn't around unvaccinated kids - and neither is Grace, her older sister.

Some of my very best friends have chosen not to vaccinate their children. I don't want to be the mom that says "My kid can't play with yours" but I might have to be - to keep my daughter alive. I respect each parent's choice on everything from bedtime routines, feeding preferences and the minutia of raising a child - but the vaccine debate frustrates me. Would you really rather risk having your child die of polio than potentially (even though scientifically proven there is no correlation) not have autism? I don't understand, but I am grateful for California's new vaccination laws. 

As a mother of a medically fragile little miracle, it pains me that highly detailed medical research is ignored and so many parents, especially in California, do not get their children vaccinated. In my opinion, vaccination is not a personal issue, it is universal - it is about society eradicating deadly diseases and protecting the most medically fragile from harms way. I don't want to throw out the label "selfish", but it does come to mind when thinking about those who choose not to protect and prevent.

The vaccination debate makes enemies, but that is not my intention. I merely want to take a moment to applaud your family for seeing the big picture and leveraging your influence to help inspire parents to think of society as a whole - not just today, not just their family - but the future for every little one.

Hopefully Emerson will be getting her 2-month vaccines at her pediatricians office on Friday if we can get discharged after our 60+ day stint at the NICU. Like we did with Grace, we too will be taking a photo... not to start a debate, but to reflect upon when our daughters are grown- a testament of how much we care for them and their future friends. Thank you again, perhaps see you on the playground one day!

Love,

Kate Allen and Family


It is as if we are in labor...

The excitement mixed with anxiety that new moms feel as the final weeks of their pregnancy roll around is a unique feeling - with butterflies in your stomach and worry on your shoulders. Although Emme was born two months ago, those same feelings have been flooding my every day this past week as we are on the eve of bringing home sweet Emerson Claire and soon instead of mothering one of my babies at a time, I will finally be a mother of two mothering two under two in our very own house. I am terrified... but thrilled.

After the false hope of having Emme come home on the New Year, and again on Tuesday, I wasn't holding my breath when we were told she would be coming home today - but this time I have to admit it felt different. We did the carseat test again, and she passed. She had the RSV Synergis vaccine, Hep B, and I even sat with her as she did a comprehensive discharge physical. She is weighing six whole pounds now! Grant's mom is in town helping with Grace and my parents are back from the funeral just in time - pieces were falling into place. When Grant and I left the hospital last night around 9:30, we were smiling from ear to ear - it was really happening - we were ready. It reminded me of when Grace started coming but I had delayed labor and it took a week for her to finally enter the world. My girls run on their own timeline, that sure is evident already.

Then at 11:30pm last night, I was awoken by a call from Dr. Chan that Emerson had suffered another serious spell and hadn't been breathing, requiring stim to rescusitate. She was kind in noting our disappointment, with dreams of bringing her home today shattered. As much as I as longing for this to be the day, Grant and I are both confident in the decision to stay. 

When she is finally discharged, one thing I have always found to be hilarious is that I have to exit the hospital in a wheel chair- like all of those moms I have longed to be outside the hospital being discharged with their cute new bundle of joy tucked safely in a carseat as the nervous new daddy fumbles as he pulls up the car. I know it may sound really weird, but I cannot wait. Yes, Emme was born in November, but I plan on reveling in her homecoming! (I've already recruited my awesome mom to get pink balloons and cheesy "Its a girl!" signs to welcome us home, whatever day that is.) I have no idea why the silly little celebration has come to mean so much, but I am looking forward to the cheese -- the celebration -- the sigh of relief.

I am writing this outside the NICU awaiting to hear if the doctors plan on putting her on a 2 day or 5 day study, but in reality - we are happy to do whatever is best. As I mentioned above - Grant and I were both awoken by the call - meaning had she had the spell at home and we were both asleep - who knows what would have happened if she stopped breathing and we had no monitors. 

I am grateful for the amazing team who has helped Emme thrive and know that while we have 54 days in the NICU down, a few more will only help her grow stronger. Heck - she wasn't even supposed to be born until February 1st... look at all that she has accomplished since November 15th! 

Noting a silver lining of sorts, with Emme being under the best care, I am hopefully able to care for my best friend in the whole world who yesterday was hospitalized battling her own health issue. If Emme was coming home, I wouldn't be able to visit her or help with her kids, so in a weird way, maybe everything does work out for a reason? Food for thought at least...

Happy Friday! 

My phone is still broken so I am still using a loaner which unfortunately does not have a good camera...

Farewell 2015, Hello 2016!

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! 



Those Small Moments of Big Faith Staring Back at Me

This morning when the alarm went off at 3:45am, for the first time in my life I was tempted to try out that snooze functionality. Normally chipper in the morning, the late night feedings at the hospital compounded with the early morning feeds just has me running on exhausted. I walked Kellydog which usually brings me joy getting some steps for my FitBit, but I was impatient hoping she could get her business taken care of so I could just get to the hospital and "get it over with" so I could get home and maybe get back to bed. My attitude wast terrible, talk about waking up on the wrong side of the bed!

Yesterday, Emme was moved to Bay 1: for "Feeders and Growers" - progress! Now with the older, later term babies she has done really well for the past 48 hours... but that also means more babies, packed into a tighter space, and unlike newborn preemies- later term babies cry... Normally I hold Emme for 45 minutes after a feed, but last night I had to put her back and run (glad she is still in the isolette to curb some of the noise). I was having an anxiety attack from the wails coming at me in each direction, beeps, lights and crowded space. So much for a relaxing atmosphere to breastfeed... I was bitter as I heard another couple vent about being there for four days. Perhaps this is why I so begrudgingly took my time getting in this morning...

But this morning she was in the same place, yet things were different... because I got to see my beautiful baby girls face in its entirety for the first time ever- no tubes! You may remember when she was born, I was heartbroken that she was immediately whisked away to the NICU and put on a CPAP machine, and since has remained on a feeding tube taped across her face inserted through her nose. She has officially graduated from the feeding tube/gavage and is now taking all 8 of her feedings by mouth (breast/bottle) and even gained 46 grams yesterday! I knew she was perfect before, but this morning with her face smiling at me with no tape or tubes, it was miraculous. God is good! i marveled at each milimeter of perfection. That bad day is now far far away and I cannot wait to get back to the NICU and see those scrumptious cheeks!

It has been 43 days in the NICU and she is still living in her isolette connected with a bunch of wires- crazy to think she should still be inside of me for one more month, but I am confident we are winding down our stay and on the dawn of the next chapter: when we finally get to bring sweet Emme home and have our family together under one roof. Without the prayers and support of all of our friends and family, I am not sure we would have made it this far, or had the energy to keep going - thank you for your contagious faith. Savor this time with your family and friends this holiday season!

No tape, no tube- just two scrumptious cheeks to kiss and pinch!!  

No tape, no tube- just two scrumptious cheeks to kiss and pinch!!