Changing Seasons

A lot has happened in the last month.

Elizabeth is back at work full time, which means Evie started day care.  Mother's Day.  Evie had his first plane flight.  Elizabeth started teaching dance again.  And that's not even getting into developmental milestones.

May 10, 2016

The first big spring thing for us was Mother's Day.  We went hiking at Uvas Canyon, where Obie's ashes are.  We drove up in the late morning, but the park was full.  That hadn't even crossed our minds as a possibility and we were thrown for a loop.  Luckily, we were able to come back in the afternoon and spend some time at this special place.

One of Evie's dragonflies at Uvas Canyon.  May 8, 2016.

At Manzanita Point.  May 8, 2016.

Mother's Day felt weird.  Maybe it will feel different when Everett is old enough to be making school projects and writing his name in cards.  To Elizabeth, right now, it felt more like a reminder of what our family is missing.  Maybe it will always feel that way.

On May 12, Elizabeth returned to work full time and Everett started day care.  To many Americans, this seems like a late return to work.  To most of the world, it seems like way too soon.  Can it be both?  By taking advantage of California's Paid Family Leave and the federal Family & Medical Leave Act, Elizabeth was able to stay home with Everett for 18 weeks.  

While the time home with Everett was important for everyone, it was also stressful.  Not in a negative way, but taking care of an infant requires constant attention.  Often Elizabeth was doing two or three things at once, and only getting any sort of respite if Everett happened to take a nap where she could set him down (not a given on any particular day).  Now that Everett is in day care, she can do one thing at a time.  The first time she sat and ate lunch - and didn't do anything else - since Evie was born was her first day back at work.  It was strange, but also offers an opportunity to recharge.  

We are still learning this new schedule.  Figuring out how to balance household chores with getting Everett settled for bed and dinner for us is a work in progress.  

Leaving Everett with day care is hard, but not as emotionally intense as we expected.  Getting pictures like this on day one certainly helped.

Evie having fun at day care, May 12, 2016.

Living in a different state from everyone in our immediate families means Everett is going to travel by plane.  It was only a matter of time.  Turns out his first flight was from San Francisco to Chicago-O'Hare.  We tried to give ourselves the best chance for success - direct flights, late morning, Economy Plus seating, renting a car seat instead of carrying one, shipping a Pack & Play direct instead of carrying one...but you can't plan for everything!

First flight with a lap child, May 20, 2016.

We sat on the tarmac for nearly two hours waiting for a pilot.  Everett took big ol' nap.  It was awesome, but we were nervous we were using up all our easy time.  Turns out we needn't have worried as Evie was as good as a baby could be.  Minimal crying, lots of napping, and no blow outs.  Multiple strangers told us how good he did.  That one goes in the win column.

Everett was also surprisingly chill with being in a new house, meeting more new people (and a dog), going to restaurants, and the dreaded time change.  Did he sleep that first night?  Not really, but he was in such an adorable giddy mood that it kept us from getting too frustrated.

 Meeting cousins...

and besties...

and hanging with a familiar Aunt, all on May 22, 2016.

Everett is learning new things every day.  Watching him figure things out is amazing - there's nothing quite like it.  He's making sense of the world around him, and that's pretty neat.  He's much more vocal than even a month ago, squealing, cooing, and grunting.  Still working on those consonant sounds, but they'll be coming any day.

He loves his Exersaucer, sitting up (with some assistance), and when he's in the mood for it, rolling over.  He's a strong little guy (even the day care lady says so), which makes sense because his 25th percentile body has been holding up a 95th+ percentile head this whole time.

 You must not hop on pop! May 2016.

All smiles for tummy time, May 2016.

Last year, everything felt stuck.  Seasons seemed ridiculous.  This year, change is constant and the seasons mirror that.  As we head into summer, the weather is getting HOT, Everett is getting more and more of a personality, and we'll embark on parenting challenges such as sleep training, solid foods, and mobility.

Part of our Family Forever

We said it at the beginning.  Oberon may have only lived with us for a short while, but he is part of our family forever.

Chris, Everett, Elizabeth, and Obie Bear - January 15, 2016

Truthfully, with Everett now here and demanding attention as an infant should, it is harder to find the space for Oberon to be the focus.  Instead of having Oberon at the center of everything, we have to juggle.

Sometimes that means late nights after Evie has gone to sleep is the only time we talk to each other about Obie.  Sometimes it means tearful storytelling to Evie about his big brother and how much we miss him.  Other times it's as simple as pointing out Obie's bees.

Obie's Bees at Happy Hollow in San Jose, CA

Giving for Obie is something we want to continue doing, so we bit the bullet and set up monthly donations for Obie's favorite charities (FNIH, NORD, Now I Lay Me Down To Sleep, and JW House - read more about them here).  We still plan to give some larger donations when milestones dates come around, but this way we make sure it doesn't slip through the cracks.

We have a few books that are specific to making sure Everett knows about his big brother, but Elizabeth still finds them too hard to read out loud.  Someday we hope to make a picture book about Oberon like the ones we made for his cousins, but that's been too hard so far as well.

We've officially started taking Everett on family hikes.  Starting with very easy ones, we hope to get up to moderate (and maybe even difficult!) hikes soon.  It's a learning process bringing an infant with us on the trails, keeping him both safe and happy.  We got into hiking because of Oberon, and we'll make sure Evie knows that.  Finding yellow wildflowers and bees on the trail definitely helps!

Almaden Quicksilver on April 17, 2016

Summit Meadows on April 23, 2016

Elizabeth keeps working on Obie Blankets.  While she can't make them at the pace she did before, it feels good to make something for Obie and for other babies gone too soon.

Of course, Chris already has his tattoo, which we've nicknamed the bumble butt.  It goes with him everywhere and Elizabeth is totally jealous.

Another small thing we've done is add a bee sticker to the 24th of every month on our wall calendar.  When Everett gets a little older, we'll try to have a specific thing we do on the 24ths.  Maybe it's family game time, maybe it's craft time, who knows?  But it will be something we do together.

Elizabeth still goes to support groups, though not as often as before.  It's trickier with the timing and making sure Evie has what he needs, and that she isn't gone too long (breastfeeding - more logistics than we ever thought possible).  Chris hasn't gone back to a support group since Evie was born, but he will at some point when the logistics are a bit easier.  It's good to have some time set aside to just focus on Oberon, although the people who know us are also interested in hearing about Everett.  The people we've met in support groups are incredibly (for lack of a better word) supportive.  They truly care about us and about Evie, and that's a really good feeling.  They understand that Evie doesn't replace Oberon, but that he is also special and brings us joy.

We suppose this could all be summed up in that we're trying to keep Oberon present in our day to day lives, along with special milestone days like his birthday (Obie's Bee Day) and Obie Xmas.  Life really is mostly the day to day, so integrating Oberon is important.

Is this what they mean when they talk about finding a new normal?  The idea seemed repulsive at first.  How can it ever be normal to live without your child?  It isn't, but you still have to get through the days.  Now that we're settling in more and more to being Everett's parents, there is more routine and less intensity.  It's very easy to include Oberon in the intense times - it's inevitable.  Both the good and the bad extremes are forever touched by him and will always include memories (and likely, tears).  It's the routine times that are tricky, so we're doing our best to be mindful.  Doing our best to keep our first boy in our hearts, in our minds, and on our tongues.

Chris, Elizabeth, and Oberon - December 10, 2014

Meet & Greet

Everett has been a busy guy!  He's now met both sets of grandparents, two aunts, one uncle, and two cousins!  In a couple weeks he'll meet another aunt, uncle, and two other cousins.  We love getting to introduce him to his extended family and love seeing our families pour out love for Evie, just like they do for his big brother, Oberon.

Everett hanging out with family.

Last week, Elizabeth took Everett to the office to meet many of Chris and Elizabeth's coworkers.  They organized a small fun gathering with cake and balloons, and Evie was a perfect gentleman while meeting lots of new people - alert and quiet!  Our co-workers were extremely generous and thoughtful, ensuring to ask what we would be comfortable with in advance and not dropping any big surprises on us (like they usually do for wedding and baby showers).  It was strange for Elizabeth to be back - she hasn't been in the office since a few weeks before Everett was born - but it was nice.

The next day, we also had a welcome party where Everett met some of our California community.  We didn't have a baby shower for Everett when Elizabeth was pregnant because it felt wrong, so we had the "Welcome Everett" party instead.  After he was here and healthy.  Again, our friends were wonderful (especially the party planners and hosts!) and it was nice to introduce Evie to more people, and some special friends closer to Evie's age.

A very special day for a very special guy.

Not too unexpectedly, quite a few families canceled the day of and days before the party.  Sick kids, sick adults, and even some contractions!  We missed those who couldn't make it, but we enjoyed seeing Evie react to the new faces of those that did.

Speaking of reactions, Everett had the most connection with (and smiles for) the fellow loss parents that have met him.  It's really an emotional experience for us (and it seems to be for them, too).  Evie must pick up on that, because he puts on a show.  Big, open eyes and a big, wide smile.  For Elizabeth, it's these moments where some of the positive emotions of having Everett here are closest to the surface.

One thing we started at Everett's welcome party is quilt squares.  We asked our friends to make squares for Evie, which will eventually become a quilt.  We're excited to keep adding to the stack so he can be wrapped with the words and drawings of the people who love him and his big brother.  There were a few drawings, cards, and gifts that mentioned Oberon - either directly or indirectly with Obie's bees.  These never go unnoticed, and always give our heart a little hug.

Evie is growing and learning every day, and like almost all parents we are amazed and amused by him.  He has a very sweet temperament (most of the time), and for that we know we are fortunate.  It still all feels a bit surreal.  While Evie's smiles make us smile and his cuddles warm our hearts, we still find ourselves missing Oberon constantly.  With less time in the day to focus on our grief, sometimes it comes out in force.  Sometimes triggers hit very intensely.  Maybe it's a specific book that triggers a memory, sometimes it's a sound that Everett makes just like his brother.   We talk with him about all his family members, including big brother Obie.  There is a big picture of Oberon on the wall behind the glider that Everett often looks at while getting burped.

Rocking tummy time with his scared-of-camera face.

We've also been busy getting more pictures up our walls.  The Oberon sunset photo Elizabeth had taken last year is now printed on a large canvas, hanging next to Obie's curio opposite a spread of four photos of Obie's bees that Chris took on hikes.  We've also gotten some pictures of Evie up on the walls too, integrating pictures of Evie with those of Obie already on the walls.  We'll run out of space eventually, but not yet!

New canvas pictures in the living room.

Plenty of Rare to Go Around

Everybody's got something.

Elizabeth has allergies, asthma, lactose intolerance, eye problems, and weird cycles.  Chris has allergies, eyesight problems (pre-LASIK), and bad knees and ankles.   We both have crummy tummies and dry skin.  We were lucky kids that our inherent medical issues weren't serious, but we had something.

So far, Everett is a healthy infant developing as expected.  We're sure something will pop up in infancy, toddlerhood, or childhood that needs some medical intervention.  Probably glasses and probably allergy meds, if he takes after Mommy and Daddy.  It's tough not to go down every rare disease rabbit hole.  He might have a rare, chronic, serious issue come up.  He probably won't.  That's hard to get our heads around.  When you've been the 1 in a _____, it's hard to find comfort in population statistics.

Growing up, we all knew kids who had serious problems.  Life altering or life threatening problems.

Once you've had a kid with a serious diagnosis - whether they pass away or not - you start becoming much more aware of all the "rare" things that can happen.  You hear stories from people in support groups, you read articles online, you pay more attention to storylines on TV.

Rare is everywhere, once your eyes are open.

There are two insidious ways a rare diagnosis specifically isolates families.  Firstly, since it's rare, we have to take on a role of educator for our friends and families.  This can be exhausting, especially in the beginning.  People don't automatically know what we're going through, and we often can't easily find people who do get it - people in the same boat as us.  It's a small boat.

Second is there typically isn't a lot of medical experience and literature to lead the way.  More common ailments have gotten more attention over the years - and rightly so.  But it still sucks when you realize there aren't answers for you, for your kid.  Now in addition to educators we have to be advocates.  With regards to Oberon, we knew some of his problems were categorized as Beckwith-Wiedemann Syndrome (BWS), but not all.  And we have no idea what caused any of it.  It wasn't inherited, and the doctors weren't able to identify anything else that would have caused BWS and cerebral atrophy in the third trimester.  Maybe someday, families like ours can get answers - or better yet, families can take actions or precautions to avoid developing these issues.  None of that happens without more research.

That's a lot to pile on in addition to being parents and caregivers.

The internet has helped a lot.  The other thing that has helped is individual rare disease communities coming together to be a larger community.  And on the rarest day of the year, February 29, we are raising awareness with Rare Disease Day.  This is a global effort, but you can find info on the U.S. Rare Disease Day here.  In fact, one of Obie's favorite charities is the U.S. sponsor - NORD!  There are live events (especially at State Houses), and you can join in the social media conversation by using #RareDiseaseDay.

We're glad that something like Rare Disease Day exists, but at the same time it really sucks.  Despite how advanced medicine is, there are still countless horrible diseases.  There are still millions of people dealing with the fallout of these diseases.

Our family is obviously dealing with the grief of losing Oberon, but he isn't the only rare kid in our family.  Our niece, Grace, has PMM2-CDG - an extremely rare glycosylation disorder.  It took eight months to get a diagnosis for Gracie when she was an infant, and for others it takes even longer.  She's a happy kid working on motor skills with horseback riding and other cool physical therapy workouts.  Her parents are dedicated to getting the best care for Grace and have traveled to France and San Diego to attend conferences on PMM2-CDG.

We need awareness and empathy, and we also need research.  That's why we will continue supporting NORD and FNIH.  In memory of Oberon, and in honor of the beloved kids in our life who are battling rare diseases.  They are awesome, and they deserve the best this world has to offer.  To celebrate Rare Disease Day, we will be making a donation in memory of Oberon, in honor of our niece Grace, and in honor of a very close friend who was recently diagnosed with yet another extremely rare disease.  If you love a kid (or an adult) with a rare disease - consider donating to help advocacy or research supporting rare diseases on #RareDiseaseDay.  As NORD says, alone we are rare, together we are strong.

Oberon on December 9, 2014

Grace on her first day of preschool in Fall 2015

Adventures in Parenting After Loss - The First Month

Everett is officially out of the newborn stage and into the 1-month-old stage.  While it hasn't been perfectly smooth sailing for any of us, there also haven't been any huge issues.  We know we are lucky.

Everett Oberon Fiorani Thoma, 9.4 lbs and 21.25" at one month old.

It feels like forever since we went to the hospital at 38-and-change weeks pregnant.  People talk about time going by so quickly, but we haven't really had that experience.  It sort of feels like January melted away, but that was more because we weren't doing the normal things than that it went by quickly.

Everett's pretty good at breastfeeding, though he gets lazy sometimes.  In fact, his overaggressive sucking (and sometimes chomping) is probably to blame for the mastitis Elizabeth has.  The symptoms of mastitis started as just an ache in the breast, but a few hours later Elizabeth had a fever over 100deg F, the shakes, and was barely able to sit upright.  Thank goodness for modern medicine, because a dose of Tylenol and antibiotics later and she felt almost back to her old (still very tired) self.  Now we're working on having a consistent good latch.  Evie likes to have a shallow latch sometimes, and that's not great for any of us.

Even though it's going mostly well, it's still tough.  Feeding every 2-3 hours (still), with the occasional 4-hour gap, is a lot of time.  One of the NICU doctors told us, "breastfeeding sucks for the first two months, and then all of a sudden it's awesome."  We wouldn't say it sucks, but it is draining (no pun intended).

Breastfeeding can be pretty anxiety-inducing, because you can't really tell how much the baby is eating.  We just have to go by behavior, dirty diapers, and weight gain, which is tough (especially in the beginning, when we are still learning Everett's individual patterns).  After a month, it does seem like Everett's weight gain is right along the expected curve, so that's encouraging.  He's a bit on the small side (25-30 percentile-ish), but tracking right along that curve.  Today, he's up to 9.4 lbs.  How did we check?  Well, we use a luggage weight checker with Everett in the car seat.

Our growing lil' beastie.

Way back before Oberon was born, we never thought we'd be "those parents" who use monitors while their children sleep.  Well, now we have an Owlet and it's the only way we get any real sleep.  Knowing that a loud beeping sound will alert us if Evie's heartbeat or oxygen saturation veer too far from normal helps us relax just enough.  Elizabeth still wakes often at the first sound of Evie's cries, or just to check on him.  Chris is more of a deep sleeper.

We've hit a lot of milestones this month.  Chris is already back to work, leaving Elizabeth and Everett to have many hours of mommy-son time during the days.  First pediatrician visit, first bottle, first poop shooting off the changing table, first walk in the stroller, and many other firsts we're forgetting to mention.

Daddy give Everett his first bottle - 2/6/2016

Having Everett here brings back a lot of the grief for Oberon.  Holding him we sometimes have flashbacks to holding Oberon.  While they don't look identical, they do look like brothers.  Certain looks or angles, and it's like they are twins.

With Everett being one month old, he's only a couple days away from being older than Oberon ever was on the outside.  Although we won't know exactly what emotions will come those days, it hasn't seemed as intense as we'd thought.  In most ways, Everett is already older than Oberon.  Since Oberon was born so early, and was so sick, it already seems entirely different.  Oberon was much sleepier than Everett, and his alert time was almost never fussy.  Everett gets pretty fussy when his diaper is dirty, he's trying to poop, wants a pacifier, or just wants more attention.  Elizabeth jokes that it's all Chris's fault, since he's so picky about fabric and has such sensitive skin.

Even today is bittersweet.  It's Everett's one-month-old day, which is happy.  It's also Super Bowl Sunday, and last year on Super Bowl Sunday we took Oberon's ashes to spread at Uvas Canyon.  Thinking about that day still brings tears to our eyes and pain to our hearts.  Thinking about how our sons will never meet, never play together, and we'll never have a full family picture - all these things bring fresh grief to the forefront.

Our family on 2/7/2016.  Everett wasn't in a great mood for pictures.

Some people fall head-over-heels for their babies the instant they are born.  Chris felt this way for Oberon and Everett, feeling instantly connected the moment he saw each of them being born.  With Obie, Chris's had to follow him to the NICU and stayed with him until he was admitted and things had calmed down a bit.  Holding his hand for the first time, seeing his eyes, Chris was smitten for his son immediately without reservation.  He remembers finally going back to the room and telling Elizabeth how wonderful Obie was and how much he was in love.  It was very much the same with Everett, with immense love swirled into the wave of emotions in the delivery room.  It definitely feels terrible leaving E and e for the day when Chris has to go to work, but coming home to both is a joy every day, no matter what.

For Elizabeth, it wasn't that immediate with Oberon, and it wasn't that way with Everett either.  Sometimes love is more of a slow burn, and she hopes that's what's happening.  Maybe it's from parenting after loss, maybe it's being emotionally shocked with the NICU stay and not really recovering yet, maybe it's just how she is as a mom.  It's hard not to feel guilty.  Guilty about not cooing over Everett all day, guilty about having less time to focus on Oberon.  Hopefully there will be a balance someday, but right now it feels like the opposite of balance.  Not even really imbalance, just not enough of anything.  As Everett grows, she's hoping her love for him will continue to grow until it's bigger than she could imagine.  And also as he grows, she will be able to share his big brother with him, and have a little more time to focus on Obie.

A Different Journey With Familiar Stops

After Everett's (happily) straightforward delivery, we were all moved from Labor & Delivery to the Mother/Baby department.  With Oberon, Elizabeth was moved by herself, trained on pumping, and eagerly awaited the effects of the epidural to wear off so she could book it to the NICU.  Chris followed Oberon immediately when he was admitted into the NICU.  With Everett, Chris and Elizabeth got to hold and snuggle him while they waited for Elizabeth to start to recover.

Everett in his bassinet.

The Mother/Baby department must have been full, because we were moved into Pediatrics in a shared room.  No one else was in the room, but we were concerned that someone else would be put there and we had taken privacy during our stay for granted.  We really didn't want to have to make nice with roommates during this emotional time.  The nurses and pediatricians started to come by to do checks on both Elizabeth and Everett.  The first pediatrician noted that Everett was grunting some and thought it was likely due to fluid still in his lungs that needed to get "worked out."  He said that residual fluid is a fairly common part of newborns transitioning, and while he didn't seem too concerned, wanted to keep an eye on it.  He also noticed that Everett was breathing a bit quickly, something the doctor also wanted to keep a close eye on.  Everett's heart, lungs, and bowels all sounded good, and the pediatrician noted that Everett was a strong guy with all of the newborn reflexes working the way they should.  The doctor made certain we understood that all of Everett's neurological reflexes seemed normal, and confirmed that the ultrasound of his brain was ordered and would happen within a day or so.  He definitely tried his best to assure us that they were going to keep very close watch on him, but that everything looked normal for a baby only a few hours old.

The pediatrician asked the nurses to do a quick work-up on Everett to check his temp and O2 saturation.  Chris went with Everett just down the hall to another station while the nurses checked him out.  His temp was a little low, but in the normal range, and while his O2 saturation wasn't perfect (at or above 95%), it was hovering in the 93-94 range.  When he warmed up, it got more steady around 95%, so neither the nurses nor the pediatrician were concerned at this point, but it didn't feel quite right to Chris.  The plan was to watch him closely to ensure it wasn't something other than the residual fluid from transitioning (we must have heard that word 100 times).

After getting settled and more comfortable, we decided that we would be OK if Everett's grandparents (Elizabeth's parents) came in to meet Everett (and bring some coffee and snacks for Chris).  It was special for us to all be in the same room when this happened, free of the monitors, wires, tubes, and visitor limits we had with Obie in the NICU.  After a bit of time, our nurse shared that she was working with her manager to get us a private room back in the actual Mother/Baby department.  We did not object, and right around shift change they whisked us back down the hall to a better room.  Elizabeth got the feeling it was partly so that they could keep a better eye on Everett, his O2 levels, and the grunting.

Grandpa F. with Everett.

 Grandma F. holding Everett.

Our next nurse was obviously prepped about our history (we found that almost everyone we interacted with knew about Everett's older brother), and she was extremely considerate and accommodating...almost to the point of annoying Chris by asking if there was "anything" she could do for us every five minutes.  When she did her first checks on Everett, she was having a devil of a time with her equipment.  Two different thermometers didn't work (Evie hadn't had a bath yet, which can cause issues, apparently).  When she did finally get readings, she found his temp was still a little low and she was also getting sub-optimal O2 readings.  She assured us that it was the equipment and not a problem, but the tone of the room had become worried, and we were not at all comfortable with her assurances.  She moved Evie across the hall (literally across the hall) to the nursery to warm him up and re-check his O2 on a better machine.  After exhausting what seemed like a half dozen O2 sensors to find one she was comfortable with, Evie's O2 reading did read out right around 95%.  The nurse gave an update to the attending pediatrician, apologized for creating a bit of a worried atmosphere, and shared that she really wanted to be cautious and be sure he was OK.

Shortly after all this hubbub, the technician came to do the ultrasound of Everett's brain.  We all went back to the nursery and held our breath.  The scan didn't take long, and the pediatrician reviewed the results quickly - everything looked normal with no signs of atrophy!  We were so relieved, and so glad we'd asked for this easy check to help us differentiate between Oberon's journey and Everett's.

We were able to spend the rest of Evie's birthday with him in our room, taking care of him, cuddling him, changing him, and trying to feed him more.  He wasn't too interested in the feedings, which worried some nurses, but others (including lactation consultants) said it was completely normal on day one.  Grandma and Grandpa also got some more visit time and got to hold Evie for the first time.  They also took our first family photos, which we will always cherish.

Family pictures on Everett's Birthday - January 7, 2016.

Chris and Elizabeth had a talk about how different everything was.  Being able to hold and handle Evie from the beginning, sporadic nursing checks instead of constant watching, visitors allowed whenever, a much quieter (and darker) environment, and being able to take care of our son pretty much on our own was all new for us.  It was so strange to think that this is how most people experience the birth of all their children.  It was so much calmer and simpler.

That's not to say everything was perfect.  We were still working through some complicated emotions - wishing this had been our experience with Oberon too, missing him, and Elizabeth was having a hard time believing Everett was really hers.  Chris assured her that he was (he saw it happen!), but there was still this weird feeling.  It happened with Oberon too, but it seemed like something that should have been different this time around, and wasn't.

Into the evening and nighttime hours, it seemed like things were going well (well enough, anyway), and they were hoping to discharge everybody the next day. We were even comfortable enough to let them take Everett to the nursery for a time overnight while we caught up on a bit of sleep.  Chris and Elizabeth were pretty sure they wouldn't be able to sleep without a babysitter watching Everett, so they took advantage of the nursery.  He also got his first bath, and his awesome mohawk, from the nursery nurse overnight.

Skin-to-skin with Mommy, and a pretty cool mohawk!

In the morning, everything seemed to be moving towards being discharged around noon, but there were still a number of items on Everett's checklist before they would let us go home.  Chris went with Everett and our nurse back to the nursery for his 24 hour weight and O2 checks.  While his O2 wasn't in a dangerous range, it didn't pass the required 95% and our nurse quickly called the pediatrician in again.  Based on Evie's continued quick breathing and low O2, the pediatrician ordered a chest x-ray, which they did right away in the nursery.  The x-ray confirmed some fluid in his lungs and a portion of his lungs that were not fully expanded.  This is when the neonatologist (NICU doctor) was first called in to consult.

The pediatrician and the neonatologist discussed Everett's situation and then came to talk to us.  They were recommending an echocardiogram to rule out heart issues that could cause the rapid breathing, but they seemed pretty sure they wouldn't find anything there.  Back to the nursery, where the echocardiogram was performed by a technician.  It was a full scan and it took a while.  Near the end of the scan, the pediatric cardiologist came in to do some additional scans and measurements. We've both seen enough echocardiograms to know when there's some sort of backflow, but not enough to know what is considered OK for a newborn and what isn't.  We were both terrified they had found something abnormal and were looking closer to find out how bad it was.  Turns out while Evie's heart did have some flow in the wrong direction, it's totally normal for one-day-olds.  He has a patent foramen ovale, a hole between the left and right atria.  This is extremely common and most often causes no symptoms.  Every fetus has this hole so that blood can bypass the lungs (which don't work until the newborn is exposed to and breathing air).  When the baby is born, the hole closes, most of the time.  For those that don't immediately close, the hole will still most likely close on its own sometime over the next year.  The pediatric cardiologist even told us that the flaps in Everett's heart look exactly like ones that would close.  If the flaps were too far apart, they could see that the hole wouldn't close naturally.  It also turns out that this could not be causing his moderate O2 levels, and wasn't predicted to cause any other symptoms (was not causing the rapid breathing).

Chris and Everett Cuddles - January 7, 2016

After this, the neonatologist and pediatrician came to talk to us again.  They still thought Everett's symptoms were probably caused by transitioning, and probably would get better on their own in a day or so.  But he wouldn't be released until they were resolved.

Chris pressed them on what else could be causing the issues besides transitioning, and that's the first time infection was brought up as a potential cause.  At first, they seemed to want to wait until the next day to see if Everett's breathing and O2 numbers got better on their own, but we asked if there was anything we could do sooner than that.  The doctors decided it was worthwhile to run some blood tests right away to see if there was any indication of an infection.  A team of NICU nurses came in to the nursery to draw blood for the tests.  Poor little bug getting poked.  The doctors told us they were looking for signs of infection, which could explain the fluid in the lungs and fast breathing (tachypnea).

Everett's blood test results came back in waves.  First were his blood gases, which were tested right away on an i-STAT (shout out to Abbott devices, company pride!).  They were normal, which meant his respiration was working correctly.  The next results to come back were for a marker protein that is good at confirming or ruling out an infection, but also has a gray area where the results don't tell you much.  Evie's results were in the gray area.  The neonatologist (Dr. P., who we remembered from Oberon's NICU stay) talked to us about whether he should be admitted to the NICU and what would happen there.  We felt like we'd been run over by a truck.  We wanted Everett to have the care he needed, but it felt really wrong to send him to the NICU.  This was supposed to be different, and heading back to the NICU felt like going down an old road with a very bad ending.  Needless to say, we weren't getting discharged.

We ended up agreeing for Everett to be admitted to the NICU to start antibiotics while we waited for the rest of the test results to come back.  We both walked over with him from Mother/Baby to the NICU and stayed there while the nurses got him hooked up to all-too-familiar monitors making all-too-familiar noises.  His first nurse was a nurse Obie had too, Nurse P.  We really like Nurse P, but we weren't excited about seeing her again under these circumstances!  Even so, it was good to have a familiar face right off the bat, especially since she knew Oberon's (and our) story so well.  Everett was given an IV so he could get fluids and antibiotics.  That was pretty emotional for us, especially since they had to stick both arms as the first one didn't work right.

Napping in the NICU.

Going back to Elizabeth's room during shift change (and to get some food) was horrible.  Lots of crying from Elizabeth and lots of traumatic memories coming back.  With Oberon, we were emotionally ready for the NICU on those first few days.  With Everett, we really weren't.  In retrospect, maybe we should've taken more seriously the chance that we'd wind up NICU parents again, but there weren't any signs during the pregnancy or delivery that this would happen so perhaps not.

When the night shift of doctors came on in the NICU, we saw more familiar faces.  We're fairly confident Obie's doctors remembered him (and us), and they were very sensitive.  One even went so far as to say to us that this wasn't the same.  We appreciated the sentiment (and trust that she felt it was true), but it was hard to accept when there was still so much uncertainty.  We'd heard words like sepsis and pneumonia floating around, scary words.

Since the day was so crazy, Elizabeth wasn't discharged either.  That was good since it gave us another night in the same hospital where Elizabeth could feed Everett overnight and not worry about pumping.  We were hoping to get some clarity (though we knew not to get our hopes too high) the next morning during rounds.

Nap time with Daddy in the NICU.

By now it was Saturday, and Everett had just hit two days old.  They were pushing Elizabeth to be discharged, so we knew we would be going home without Everett.  That realization was another wave of horrible memories.  Here we were again leaving the hospital without a baby in the car seat.  Going home, while our child stayed behind.

Saturday did give us some more clarity on the plan for Everett's care.  He would be getting blood tests every day for the marker protein and some blood cell counts.  He was continuing to get antibiotics as a precautionary measure for a "presumed infection."  He was on the monitors, but he wasn't getting any additional treatment (no respirator and no oxygen).  We were told the usual course of antibiotics is five days, but if Everett had awesome blood work they might discontinue it early so he could go home.  We tried not to get our hopes too high.

After Elizabeth was discharged, we raced home for a quick shower and meal before heading right back to the NICU for Everett's next feeding.  We spent most of the evening with Everett in the NICU, and after one final feeding, headed home by ourselves for the night.  Elizabeth woke up every three hours during the night to pump so that Evie would need as little formula as possible while in the NICU.

Mommy and Everett in the NICU.

Back in the NICU for rounds on Sunday morning, the team of doctors were happy that his blood testing results appeared to be going in the right direction, and although it was still premature to make any decisions, they started talking about a Monday discharge if his levels all looked good the next morning.  One additional concern was that his bilirubin (jaundice) had gone up to a moderate risk category, though no treatment was warranted yet.  Some additional good news was that the NICU was able to offer us one of the parent rooms, which allowed us to "room in" and spend the night at the hospital inside the NICU with Everett.  Because he was doing well, they allowed us to bring Everett into the parent room so we could stay with him during most of the night.  It also meant that Elizabeth could feed him and that no additional formula feeding was needed.  We had also roomed-in (in the same room) the night before Oberon was discharged, which again brought up a storm of complex emotions.  Oberon wasn't able to be with us in the parent room, but we remembered things like the super high bed with too-small sheets.

In the parent room - free of monitors!

There were a few weird things that went on during that night.  Everett's day nurse was new to us, and while she seemed to take good care of Evie, she also seemed a bit scattered and it felt to us that she had her own way of doing things (didn't seem to know the "unwritten rules" and wasn't really confident about what we needed to do before going home).  There didn't seem to be anything wrong, it just felt disjointed.  While the day nurse did checks on Everett in the parent room, the night nurse wanted to take him back to the NICU to do checks and was a bit pushy about it (with the day nurse and with us, which was a bit startling).  Chris accompanied Everett back to the NICU for checks, while Elizabeth got a quick rest before the next feeding.

Everett ready to bust out of the NICU.

After that shift change, we ran into the only truly negative experience we had had with any of the staff while we were in the NICU.  There had been some miscommunication regarding the need for a car seat check (1.5 hours in the seat after eating to ensure there are no issues with breathing). This apparently is always required for preemies and/or for babies with "respiratory distress."  While Evie had been admitted for breathing concerns, his doctors believed it was unnecessary to do this check and hadn't required it.  He was never treated directly with oxygen or a respirator - he breathed on his own the whole time and was a full term baby.  It appeared that there was a good deal of confusion among the nurses (it's never settling to hear nurses arguing with each other), and on top of that Evie's new nurse was acting like the previous nurse didn't know what she was doing.  Chris was visibly confused and irritated (it was also after midnight, so sleep deprivation certainly didn't help).  One of the other nurses in Everett's pod took it upon herself to explain what was going on to Chris in the most condescending way imaginable, and in the process managed to say something incredibly hurtful (to any parent, but especially a loss parent).  As she tried to explain and justify doing something the doctors didn't believe was necessary (the car seat check), she explained that she was trying to prevent us from laughing and joking around in the front seat while our child spit up and choked to death in the back on the way home.  Chris was blown away by the insensitivity and hurtfulness of the nurse. With obvious outrage and disgust, he called the nurse out with a number of choice words.  We honestly didn't care one way or the other about the car seat test, but were completely floored by the nurse's comments, especially since she claimed to know about our previous loss.  Although we had far more important things to worry about, it was hurtful and we were extremely appreciative of one of the NICU doctors (Dr. A, who we also knew from Oberon's NICU stay) who made it a point to come to us and apologize for the situation.  She also took the time to clarify exactly what needed to happen in the morning if we were to be discharged.

The doctors ordered another chest x-ray in the morning.  They also did a final set of labs which confirmed all of his numbers were still going in the right direction (and in the safe areas).  All of his level looked good on Monday morning, except his bili, which was still gradually rising, but not enough to required immediate treatment (they gave us the option to take a bili blanket home with us to preemptively knock that out, which we decided to do).  Dr. S spent some time with us talking through all of his care and results and showed us both chest x-rays side by side (the second of which looked great).  Given all of the results, she was convinced that he was doing well and could finally be discharged!

On the afternoon of Monday January the 11th, Everett was finally discharged, and we brought him home!

All dressed and ready to go home!

The next morning, we were scheduled for our appointment with the newborn care center.  They rechecked his weight and bili levels, and with the bili low enough, we were able to return the bili blanket, the last remnant of hospital-grade equipment in our house.

Three days isn't a long NICU stay by any means, but it was an emotional time for us and felt like forever when it was happening.  The doctors aren't 100% certain, but the top theory is that everything really was due to Everett transitioning - apparently a fast delivery doesn't allow babies enough time to fully expand their lungs and get rid of residual fluids.  It doesn't seem a high likelihood that he actually had an infection, but there is no way to be sure.  Maybe everyone was being extra cautious because of our history, maybe he would have received the same care without it.

Being home with Everett is certainly different than when we were home with Oberon.  With Oberon, everything was so heightened.  Either Chris or Elizabeth was awake with him 24/7, we had feeding schedules and medication schedules, hospice nurse visits, and awaiting the inevitable.  With Everett, we are trying not to let anxiety overwhelm us.  We just have to do the normal newborn care things like feed him when he's hungry, burp him when he's gassy, change him when he's dirty, and give him lots of snuggles all the time.   We both sleep sometimes (although having an Owlet monitoring his heart rate and O2 saturation at night is pretty much the only reason we can do that).

We've both slipped up and called Everett "Obie" out loud and in our heads.  We miss Oberon every time we look at Everett.  They look alike, yet different.  Sometimes Everett makes a face and it looks just like his brother.  Sometimes the way he stretches in our arms takes us back to a similar moment with Obie.  There's still crying.  There's still a hole in our family.  It's a bigger family now, but a member is still missing and that still hurts.  Elizabeth still looks at Everett and isn't as bonded as she wished she was.  He cries, and her milk comes in, but she doesn't have an emotional response.  It's more of a practical response right now.  Hopefully the head-over-heels love part is right around the corner, growing every minute.

Everett's Birth Story

This post discusses Everett's birth.  Obviously there will be discussion of labor and delivery - proceed with caution.  A follow-up post will share more information about his subsequent hospital stay and getting discharged home.  

One thing Elizabeth was especially anxious about with this pregnancy was the delivery.  Maybe because this would be one of the big moments we had been waiting for and were hoping would be significantly different from Oberon's delivery.  We really wanted lil' beastie to stay with us after delivery and not be whisked off to the NICU.  Partially because that's what we all expect to happen, and partially to create some level of belief that we'd get to take him home planning to raise him from infant to little boy to teenager to grown man.

Oberon's delivery started as a surprise with Elizabeth's water breaking at home in the middle of the night, and we were both experiencing everything for the first time.  With Everett, things were different right from the start.

Elizabeth had a planned induction scheduled for a month or so before Everett made his appearance.  January 6 was marked on our calendar for weeks (even though we knew it was unlikely baby would come until January 7 or even 8).  We all knew something could happen earlier - but it didn't.  We more or less headed to the hospital according to the plan.  It was so strange to pack up the car after planning to pack the car all day.  "Well, the appointment time is here - let's go have a baby" instead of "OMG get to the hospital!"  This probably helped immensely keeping anxiety to a manageable level.

After Elizabeth was admitted, we found out she was already having contractions.  Similarly with Oberon, she doesn't feel the smaller contractions at all, and only once the intensity ramps up quite a bit she feels some low abdominal cramping and eventually lower back pain.  She doesn't have the overall tightening sensation that many people talk about.

Being attached to the monitors was reassuring.  Seeing lil' beastie's heart rate and hearing the comforting rhythm helped both of us get some sleep during early labor.  On the flip side, when he wriggled away from the monitors there were moments of breath-holding and trying to stave off panic until the monitors were repositioned.

After assessing Elizabeth's contractions and cervix, the induction process was started with a cervical balloon.  It wasn't an enjoyable experience, but it wasn't horrible since Elizabeth's cervix had already softened.  The balloon fell out on its own well in advance of the twelve hour limit, which was a good sign that things were progressing.  There were also hormones involved to keep things moving, but to be honest it wasn't important enough for us to commit all that to memory.

At some point after the back pain was coming fast and furious, Elizabeth had an epidural.  She had it earlier in the process than with Oberon, partially because she had a hard time staying still for the needle stick last time.  Since the needle goes right where she feels the contractions, it's pretty tricky.  She didn't flinch this time (yay!), and Chris didn't pass out (though he did have to sit down).  Just like with Oberon, the epidural worked as intended.  Trying not to get overly emotional or anxious, we both fell asleep.

We were woken up some time later (a couple hours?  we're not sure) when the doctors and nurses came in saying that the patterns on the monitors indicated lil' beastie was "getting ready" to make his entrance and they wanted to check dilation.  They asked Elizabeth if she was feeling rectal pressure, but she wasn't...until she sat up a bit.  There it was!

They didn't get a chance to check for dilation, because in the words of the doctor he was "right there."  Not exactly sure what that meant, but they told Elizabeth not to push.  While there are attending physicians in the delivery unit all the time, Elizabeth's OB wanted to be there for the delivery, if possible.  She was being updated on the progress throughout the night, but she wasn't at the hospital right when Everett decided he was ready to make his appearance.  The attending physicians and nurses assured us there was absolutely no risk of waiting for Elizabeth's OB to arrive for the delivery, so we decided we were OK to wait.  We all tried to be still and calm (and not push) for about fifteen minutes while the room got set up and the doctor came in.  Three or four pushes later, Everett was born!

Snuggling with Everett, right after he was born.

This is when the emotional floodgates opened.  Everett was placed on Elizabeth's chest for immediate skin-to-skin and the first thing he saw when he opened his beautiful eyes was Mommy's face.  Chris held Everett's hands and snapped those first precious pictures.  During those amazing, scream-filled moments, Everett let his bladder loose and peed all over Mommy and the doctor.  Can't wait to tell his friends and future dates that one.

Open eyes!

We got some time to cuddle, just the three of us, and Everett got his first try at breastfeeding.  Eventually they assessed him, measured him, and did the usual early procedures.  There were a few people in the room, but nowhere near as many as with Oberon.  At the end of his checks, Everett wasn't whisked away, he was merely cleaned up a little bit and returned to Elizabeth and Chris for more cuddle time.

Everett did not like this business.  Give me back to Mommy and Daddy!

Some time later they moved us all out of the Labor & Delivery department.  Being wheeled over with Everett still with us was a new and incredible experience.  Things really were feeling different and hopeful.

Covered up and ready to be wheeled over to Mother/Baby.