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...

 

Thanksbirthday Reflections

The coincidence of my birthday landing on Thanksgiving this year is not lost to me- after a trying year filled with speed bumps and road blocks, our journey has continued relatively unscathed. By and far this has been a year of practiced gratitude and appreciation for the small things, emphasized by faith and faith alone. 

I am sitting here in the rocker at the NICU during Emerson's 5am feeding with the faint sound of equipment beeping and babies crying somehow singing harmoniously- a tune reminding me that everything is going to be alright. I reflect on the journey we've had this year as a family- I resisted moving to California but now in reflection, we never could have survived these past few months if we were still living in DC and had no family to depend on. We are where we are meant to be. The move from career-woman to stay at home mom was impossibly trying, a daily battle between self-worth and meeting the needs for my daughter- but I am thankful that we have the opportunity for me to be dedicated to the care of our daughters right now- as much as I miss working, the most fulfilling job I can have right now is being there for my girls. I re-read my posts on when we found out how severe my IC was and needing to choose between an emergency cerclage or pessary - weighing the options. Ultimately I still wonder if we went the right route, as the infection leading to the placental abruption was likely caused from readjusting/checking the pessary- but at the same time, in re-reading and reflecting on the journey we made from week 16- when we could have lost sweet Emmie- to week 24 when I was hospitalized and viability was just around 10%- to celebrating her birth at week 29 and having her prove so strong and healthy- God is good and we are decidedly on the path we were meant to be traveling. 

A few things I am especially thankful for this year: 

1. The Bags Under My Eyes  

Exhaustion fails to describe my current physical state. My body still recovering from the bone and muscle deterioration of bedrest and giving birth last week, coupled with a toddler who is refusing to sleep and visits to the NICU- I am stumbling through the day in a fog but after the journey we had to bring sweet Emmie to the world, against all odds, the bags under my eyes are a prized possession- understood only by other NICU moms. A reminder I am doing my best to give 100% right now, and proud to do so. 

2. The Company of Strangers

One blessing that has become so evident to Grant and I is the enormous support network that has enveloped us these past few weeks- we have amazing friends from so many chapters of our lives: our single days in DC, high school, college, grad school and beyond- but this new network we have found on this journey is second to none: nurses, doctors, friends-of-friends who have read our story popping up on Facebook feeds, other moms from my Junior League and Mother's Together groups who have offered to bring food and babysit Grace, and just strangers who have sent kind notes of inspiration and well wishes- the overwhelming community, which I have mentioned before, has been our daily strength and I am grateful for every person who sent a prayer above for us and our sweet girl- God is listening and our hearts are full. 

3. The Mess  

After I was discharged from the hospital, we moved in with my parents as our new home we closed on the day before I was admitted to bedrest is still being renovated (projects never finish on time, huh?) Admittedly, it has been tough living out of suitcases during this time when all I want is something stable- it would be easier to have all of my things where I need them when I want them- but between living in a hospital for five weeks and now my parents (after having just moved cross country in June)- the mess has brought a certain level of comfort- it is a reminder that we are building a home to be the backdrop for Holidays to come- a home for both of our girls. The mess reminds me that the days still go on even if everything isn't perfect. A reminder that our family is a work in progress, much like the home we are renovating.

4. The Bills: 

This has been a ridiculously expensive year, especially since I left my high paying job and our expenses increased ten fold moving to one of the most expensive areas in the world, having a daughter in the NICU, renovating a house and needing to buy a second car. We are blessed that Grant has worked so hard in school and at work to build a career that has offered us so much during this chapter. Each bill is a heavy weight, but also a blessing as it means we will have a home to be the backdrop of family memories to come, a little girl growing stronger each day, and we are fortunate to have the means to make it work. I am grateful we had savings and the help of my parents- I honestly don't know how parents of NICU preemies do it- it is not just the mounting hospital bills, but eating out as you grab food on the run between visits, childcare expenses if you have other children ($20/hour for 6+ hours a day!), parking at some hospitals (some charge $24 per day - if mom and dad drive their own cars, that is $50 a day X 70 days!) and getting necessary gear for your unexpected early delivery. Money has always stressed me out, but these past few weeks have taught me that bills are a blessing- investing in the long term happiness and health of our growing family. 

At 31, I am stuck between this feeling of being too inexperienced to face all of the challenges coming at us so quickly (coming home to my mom each day and night makes this more bearable) and ancient for having to face these real world "adult problems". Officially "in my thirties"- I never imagined  this decade would have kicked off with so much excitement, but I am grateful for the opportunity to see where this journey takes us. This thanksgiving season encourages us all to be grateful: for what we have, what we have experienced, and the chapters that lie ahead. Hug your loved ones extra tight for me. Thank you!  

My best friend Shane had this cake made for me!  

My best friend Shane had this cake made for me!  

Today is World Preemie Day- and it has a whole new meaning for our family

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Today is world preemie day, raising awareness about the battle NICU nurses, doctors and parents of preemies fight for the littlest ones born too soon. I have so much to say, but words will fail to express my heart right now as I am still grappling with the turn of events- grateful our beautiful girl is here and thriving, but terrified. The vulnerability I feel is unlike anything I have ever experienced, with emotions ranging from joy to guilt and so many looming questions. I know they say not to ask those questions: the "what ifs" but I can't seem to quiet my head. What if she had been born at 24 weeks? Thank goodness I did the 5 weeks of bed rest. But what if we had gone for a cerclage instead of a pessary? What if I hadn't been released from the hospital? What if I wasn't allergic to the indomethacin and could have used it to halt labor just another day or two? An allergic reaction for me that would have allowed my baby to cook surely would have been better, right? It seems to be a dark tunnel of confusion, but we are doing our best to stay positive in that we had a good delivery, we were in the right place to get her phenomenal care from the start, and we need to be grateful that maybe bedrest did buy her another 5 weeks of cooking. 

They tell us we can bring her home likely end of January. Grace won't meet her until then. The holidays are going to be extremely tough (but fortunately Grandbarb already ordered her personalized stocking to hang on our fireplace with the rest of the family). Already it is exhausting pumping every 2.5 hours and getting the milk to the NICU, and balancing recovery (I was discharged from the hospital 20 hours after giving birth- I can't believe it hasn't even been 48 hours since this began to unfold) taking care of Grace (fortunately we are still staying at my parents and have their help while our house is being finished), and being at the hospital so we can understand what they are doing to our sweet one. 

Yesterday super-dad Grant and I had a chance to hold her for the first time -- and with the cpap machine removed we could finally see just how tiny her features were. Having only seen her through the Isolette, she seemed small but perfect- just a miniature baby. But holding her crushed both of us, she is so tiny and frail and hooked up to many lines and wires. I couldn't help but feel frustrated that I was robbed of the birth experience of holding my baby right when she was born, and leaving her at night to go home is the toughest thing Grant and I have ever done, but we know she is in good hands. 

This piece was sent to me by a friend, and if there are any other preemie parents out there reading, I thought you'd appreciate. I did.

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Update: Baby Girl coming!

Quick update. I've been admitted now to Labor & Delivery. The pessary has been removed and I am about 4.5cms dilated, 80% effaced and having pretty hefty contractions every 90 seconds. I am on the magnesium drip which fortunately isn't so bad. I am 29 weeks.

We've met with the neonatologists which was terrifying but had all of the grandparents here for the meeting actually which was nice to have everyone in the same page re:extended care. Grant is setting up cord blood banking as I type this, we banked Grace's with CBR and as a last minute decision giving birth at 29 weeks, decided to go ahead with this little girl's cord blood and tissue as well through CBR.

My water hasn't broken and since baby is doing well on the monitors, we are just waiting it out. Likely she is coming today, maybe tomorrow if we can get an extra day of incubation in. 

Really grateful to have our family here. Mom made my favorite cookies this morning for when I'll finally be able to eat after delivery and is sitting with a coloring book in the waiting room- unwilling to leave even though it may be a few hours, and dad is getting me my favorite sandwich (after delivering Grace all I wanted was a sandwich!) Pat and Simone are watching Grace and my mother-in-law is helping Grant by managing things at the new house.  

I am a bag of emotions, excited to meet her but also terrified. Because she is being born so early, I won't get a chance to hold her for probably 24 hours and it looks like she won't come home with us until end of January. The holidays are bound to be tough. (Though I already told my dad that his new granddaughter is his 60th birthday gift- his birthday coming up Friday!)  

love you all, thanks for walking alongside our growing family on this difficult journey. 

 

Baby girls home for the next few months... 

Baby girls home for the next few months... 

Camp Bedrest Day 26: Home Sweet Home at 28 Weeks!

It's official, I am home home - back in my childhood home under my parents roof, pulling a Regina George from Mean Girls and even "Switching Rooms" with them. (Their bedroom is on the first floor and as I'm not allowed to walk upstairs, they're discovering for the first time that I actually had the best room all along with views in every direction! But I feel awful about all of the upheaval this has caused for everyone) 28 weeks has finally come, and there is a huge sigh of relief coming from everyone in our family and on our medical team -- we still have three months to go, but we made it to the "safety zone"!

28 weeks:

We will do an official growth scan on Monday at my MFM's office but my discharge ultrasound showed we were mostly stable, no amniotic fluid leakage and baby had flipped and was heads down, no longer breech! Big prayers she stays that way! 

According to BabyCenter, she is the size of an Eggplant this week - and I believe it! Our very active little eggplant keeps rolling about and we can actually see it which is fun! Now that she has reached 28 weeks, all of her vital organs are developed, she can blink, and she has reached 90% viability (some doctors claim even 95%+ viability as we are such close access to level III & IV NICUs when the time comes). The "Sixth Month" in pregnancy is a delicate one - weeks 24-28 are truly when the miracle of viability outside the womb occurs. Now on to the 7th, still technically have 12 weeks to go (3 months seems like forever!) but the worst is behind us. (Your prayers are working! Thank you!) 

If baby was to be be born this next month, between weeks 28-32, she would be considered "very pre-term" but we have graduated past the stages of "micro-preemie" and "extremely premature" - something we had been preparing for with the support of the awesome Neonatologists at Stanford's El Camino NICU. I would still need a magnesium drip but we probably would not try to delay labor any more as I am deathly allergic to Aspirin and Indomethacin is ibuprofen based.  Being born now, Baby Girl would likely stay in the NICU until end of January 2016, but we are confident she would be in good hands and have an opportunity to develop properly now that she has passed this big 28 week milestone-one of the reasons we were able to discuss me being discharged, and eventually decided I would go home and continue the strict bedrest from here. 


Life at Home:

It feels SO good to be home, I even had the chance to wake up this morning with Graceface in my arms (after she refused to go back to sleep at 2am so Grant brought her down with us for a family sleepover). Husband and baby in bed, life was as good as I could imagine! No more sirens, beeps, screens or screaming newborns keeping me up all night. No more vital checks every three hours or long monitoring sessions. No more hospital wristbands getting in the way of my arm knitting--- I feel great! 

But that "great" feeling is a double-edged sword. I feel invincible and slightly victorious for having made it to week 28 with the odds stacked against us. For those who know me, I tend to be a bit competitive/ Type A / Self-sufficient, and the fear is not being strapped to a hospital bed may make me more likely to push it. Doctor D would have liked to keep me until  week 32 at the hospital, but as I was doing so well being obedient and staying stable, we agreed I could resume complete bedrest at home. Insurance was also becoming a nightmare. The challenge is I now have an adorable 15 month old I just want to care for, lift up, and play legos with on the floor- none of which I can do as I need to be staying reclined. 

Being out of the clinical setting has been a great emotional booster for me, though I do need to recognize the added stress for my loved ones who now are having to take care of me (bring me meals, wait as I shower, babysit me so that I am not playing too aggressively with Grace even in bed.) When I did home bedrest for 14 weeks while pregnant with Grace, I fortunately only had a dog to worry about, so I was able to be solo (with the help of a dogwalker) all day while Grant worked - and he would just help bring the necessities. I am on a much more strict form of bedrest this time around since I am already dilated with water bulging, unable to really help myself or my child which is a struggle as I physically feel wonderful (the progesterone shots do this to me!) I feel guilty asking for water refills, or bothering my parents who have now been displaced out of their lavish master bedroom and are babysitting our little girl around the clock. My mother-in-law comes tomorrow to help, but again, I just feel awful being an inconvenience and adding work to everyone- especially when I feel so good. (Relatively good, my muscles still hurt and I was made aware of my disuse osteoperosis, but overall, I don't feel like I should be stuck in bed!)

Fortunately, although El Camino is called the "Hospital of Silicon Valley" the internet was so poor I couldn't stream any video (I only watched the CMAs and Captain America the entire time I was at the hospital- mostly read and crafted) so I now have at least a weeks worth of binge watching Netflix, Hulu  and OnDemand to keep me occupied and bedridden. We are looking into a wheelchair so I can get outside a bit more, though I really need to be in a reclined, not seated position for the time-being.

I am eager to move into our new home (we closed the day before I was admitted at 24 weeks) but Grant was a bit inspired by HGTV and is having new hardwood floors put in, rooms painted and lights hung and built-ins re-purposed so I have no idea what the house is going to look like when I get in there (remember my post on stress causing pre term labor? Ya well I had really hoped to decorate my home once things settled down but that is another story...) but it is unfortunately not a place we could live in right now, especially in this condition so were all at Camp Kennedy for the next few weeks...

That is our update here for now, I'll continue to post about life on home bedrest as I know many of the amazing moms-to-be I have connected with through this blog are under the same "prescription" and to be honest, blogging about everything has been the most therapeutic remedy for me to process this turn of events.

Thank you for your continued support and prayers on this next leg of the journey-- you have helped us come so far and each comment, message, note and prayer has meant more than words could ever express. We still have a long 3 months ahead but are so grateful we had the chance to save this baby girl and get this pregnancy back on the right track. God works in mysterious mysterious ways... 

Hospitalized Bedrest Essentials

One of the greatest blessings of this whole experience is the number of mothers-to-be I have connected with who are facing a similar situation- while I wouldn't wish this upon anyone else - I have great gratitude that I have been able to share the journey with other moms. Two women in particular were recently moved from home bedrest to hospitalized bedrest, and asked what they should bring - wanted to share this list if you know of anyone going the hospital route. All of that said, my nurses all laugh and say no one has ever moved into a room quite like I have (I mean, who brings a laminator to a hospital room?!) but I have narrowed down some essentials that may be laying around your house- or if not, I found that Amazon Prime Now (1 hour delivery) and Google Shopping Express both delivered to my actual room (packages sent took a few days in the hospitals mail room). Check with your hospital!

 

Bedding and Sleep: 

Let's get real. You are going to be spending 23.5 hours in bed a day (if you're lucky enough to be granted to bathroom privileges) - may as well make it comfy! Hospitals are a really really difficult place to sleep (computers beeping, babies crying, sirens blaring) but what you and your baby need right now is rest- so lets maximize comfort!

  • Pillows: Hospital pillows are encased in plastic due to recent bedbug outbreak and cleanliness issues, so you absolutely must bring your own as the plastic will make you sweat like a sauna. I suggest two. 
  • Quilt: My mom actually brought my childhood  twin size quilt and I thought I wouldn't need it - but I sure did! The color brightened my room and it was great for those nights I wanted to leave the window open and finally get some fresh air. 
  • Egg Crate: I had Google Shopping Express deliver mine - just a plain twin size egg crate (like you get moving into the dorm rooms) I think it was $14.99 and made a world of difference. My first two nights I was just on the plastic encased hospital bed mattress, the egg crate made it so much more comfortable and also prevent bed sores.
  • Earplugs: I couldn't get comfortable sleeping with them, but if they work for you- such a necessity! Babies cry 24/7 which made me miss Grace- but also almost drove me bonkers. 
  • Eye Mask: Again, something I didn't use but I have read really helps a lot of people
  • Linen Spray: My bestie Daniela sent me the "Rupa Mist Relaxing Body & Linen Spray by Chopra Center" and OMG - game changer. Sure the nurses change linens every day, but a squirt of this could change my mood and ability to sleep and relax. 
  • Pajamas: You will want socks, pajama pants and tops. If youre hooked up to the IVs, you will likely just wear what they give you, but if you can get off, you'll want comfy jersey tops and bottoms - nightgowns and robes won't work as you'll likely be monitored multiple times a day and need quick access to your growing bump.
  • Noise Machine: I didn't bring one in, but as my daughter uses one to sleep, I kind of wish I had - would solve a lot of problems. 
  • Humidifier: I have also read a lot of people bring in humidifiers. I didn't but if it will make your stay more comfortable- do it!

Pamper & Bath Products:

  • Water bottles: I keep three waterbottles at all times (so the nurses don't have to run back and forth so often, I drink a ton of water) - a pitcher would work also. Staying hydrated while pregnant is key, dehydration can cause contractions and PTL. I also ordered cucumber slices and lemons each day on my hospital menu to turn my water into "spa water" - it is the small things!
  • Organizers: I had Google Shopping Express drop off a few organizers (my room had no closet or any place to stash stuff) and I keep a small one bedside with essentials. Having everything close at hand and easy to grab is so important.
  • L'Occitane Hand Lotion: Hospitals are notoriously dry and my friend Alice sent this lotion that proved to be a lifesaver! 
  • Chapstick: EOS or any type - stash one in the bathroom and one bedside - again, hospitals are dry!
  • Facemasks: h/t my friend Cathryn who suggested treating the stay like a spa - facemasks that you just have to unroll (I bought a few from Target that GSE delivered and were $2.99 each) is a fun way to kill time and keep your skin intact
  • Full-size bath products: I cannot stress enough how important this is. If you are being admitted for the long haul, not having to fight with a travel size shampoo every other day makes a world of difference. Although my showers are all "chaperoned" with my nurse in my main room, my showers each day are my escape for 5 minutes- get the very best products and spoil yourself.
  • L'Occitane Body Oil Wash: This is my favorite product hands down for any pregnant woman soooo moisturizing- available on Amazon or Sephora, it is pricey but worth the indulgence - and will keep your growing belly stretch mark free! 
  • Hair Dryer: I used one of those hairdryer brushes and kept it next to my bed -- when you have to sit in bed for hours, its best not with wet hair. 
  • Bathmat: so this is purely optional but my first few days I was sliding around the bathroom floor terrified, GSE delivered a $12 bright turquoise bathmat from Target that brightened up the bathroom and made my 5 minute escapes that much more pleasurable (and safer). 
  • Towels: My hospital actually has amazingly plush towels but I've read that to be a major complaint by many. 
  • Glasses: I normally wear contacts but found myself only wearing glasses in the hospital due to how dry it was... and how little I really actually needed to be able to see :)
  • Dry Shampoo: if you are not granted shower privileges, this is an absolute absolute must!! Even if you are, you may not want to wash your hair daily but being stuck in bed will do a number on it so I highly recommend. 

Entertainment:

Bedrest means you will have a ton of time to kill -- staying busy is the best way to stave off depression which is common amongst bedrest patients. I kept a checklist of things to occupy my time each day - but honestly - if you can schedule visitors throughout the day- you may not have enough time to get anything done! Truly-- days passed by quickly the more visitors I had, I still have tons of projects to tackle!

  • Laptop: a laptop is essential, don't forget the power cord! You can take classes on Coursera or Duolingo, write the next great american novel, surf the web and shop! 
  • iPad filled with books and games: I like to actually hold a physical book, so this isnt for me, but if you are good with ebooks, a kindle/ipad/etc is your best friend. I have also heard lots of people like listening to audio books while knitting etc-- the internet is your oyster! Also a great way to interact with friends who can't come visit, games like Words with Friends keep you connected.
  • Board Games: If you have a favorite game, bring it in. There is nothing more awkward than having visitors come visit. You can't get out of bed, you likely don't feel beautiful, and they're just staring at you trying to have conversation but unfortunately nothing is "new" in your world except the hospitals Soup du Jour (ick!) Having a way to interact kills the awkwardness
  • Adult coloring books: well these are the greatest invention ever! Friends would come visit and we could chat and color - also have a pencil sharpener, extra colored pencils and a clipboard ideally for visitors to use to color. 
  • Craft Kits: PaperSource has some awesome kits that friends like the Guajardos, Stephanie and Ashley all brought me-- great way to kill time - kits rock because they are self contained
  • Other crafting supplies: cross-stitch, sketching, knitting, crochet- whatever suits your fancy!
  • Magazines: friends and family would bring them by- a nice escape and even nicer to share with the other moms in the ward on bedrest of the nurses for the break time
  • Thank you cards and Stamps: So I've had the Thank You cards forever, but for all of you whom I owe one to-- I am sorry- smuggling in stamps has been impossible!!! I can't seem to get them delivered and family hasn't had a chance to run to the post office with everything going on!
  • Books and Toys: If you have other children, I cannot stress how important it is to have a little basket filled with books, diapers, pouches, and toys so that your kids feel more comfortable hanging out here. My new friend Elizabeth sent me a wonderful book, "Wherever you are, My Love will Find You" that I read to Grace when she visits and to the new baby while I am hooked up to the monitors.

Etc.

  • Extension Cord that fits 3-6 products: I had my laptop and phone charger always plugged in, along with my blow dryer after showers. Its a must.
  • Notebook + Pen/Pencil: questions for the doc? great ideas? you just need these bedside, trust me.
  • Scissors and Tape: you just need these, and keeping them bedside helps. I taped up all the letters of encouragement I received and used the scissors for packages that arrived, trimming flowers, etc. 
  • Snacks: I've been trying to be healthy on bedrest and focus on protein, so little bags of cashews have been my go-to but things like granola bars, etc. are awesome. Most hospital rooms do not have a fridge, so just make sure items are non-perishable and easy to open. 
  • Trash bags: in the beginning, I wasn't really supposed to get up- keeping a shopping bag I could throw kleenex/wrappers/etc into helped a lot.
  • Family photos: I have a few pictures of Grace around my room which can bring a smile to any day. Our visits are usually just 20-30 minutes long, but seeing her little face makes the long days brighter.
  • Lap Desk: I got a foldable, plastic lapdesk from Target for $15 and it was a lifesaver - the tables can be a bit funky but this allowed me to bead, draw, color etc. so easily- highly recommend!

 

If you're being admitted, send this on over to your husband as a scavenger hunt and see what he comes back with! Would also love to hear any other ideas to add!

 

 

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