Finding Compassion

We knew we were in for a crappy time when we found out the extent of Obie's problems.  As we've mentioned before, when he was still alive we were mostly able to compartmentalize that and focus on our wonderful son.  After Obie passed away, we started thinking about the things the social worker and other bereaved parents had recommended that we try.  Things like therapy.

We tried couple's therapy for five or six visits.  It wasn't for us.  Not sure if it was the therapist or us, but it didn't really help.  It didn't really hurt either.  We can see how it could be helpful, depending on how you process things, and we wouldn't want to dissuade anyone from giving it a try.

Like so much else, it takes experience to truly understand this whole bereaved parent thing.  We don't expect people who haven't lost children to get it.  There's no way they could.  That's probably the main reason that a support group has helped us.  We've been attending our local chapter of Compassionate Friends since March.  Some people have been there every time, some haven't.  Some come as a couple, some by themselves.  Some are new (like us), some have lived with the loss much longer.  Some people lost young children, but most it seems lost adults.

It's scary to hear these loss stories.  It makes everything horribly real.  The first meeting was overwhelming as we heard each story for the first time.  Now we're hearing stories for the second, third, or fourth time, and while still terrible, it is less shocking.

Even if we someday have a child that doesn't have extreme health issues, that's no guarantee that we'll outlive him or her.  It's sobering.  Things we never thought about have happened to people in our community - undiagnosed congenital defects, accidental overdoses, car accidents, medical mistakes, cancers, homicides... all these things happen.  They always happened in general, on the nightly news or on the internet.  Now they've happened to people we know.  This is not a community anyone wants to join, but it's not one you can ever really leave.

Elizabeth cries at every meeting.  But in this place, no one tries to get her to stop.  This community truly understands that stifling grief helps no one.  Not everyone cries the whole meeting, but Elizabeth isn't the only one who does.

Some very strange emotions have come up during and after these meetings.  Every loss is different, and we can't truly understand what other parents are dealing with.  Even so, we have involuntary reactions and we'll often discuss some of that on the way home.  One of the strangest things we realized is we're a little bit jealous of some of these people.  It's crazy!  We're jealous that they got to raise their children into adults, or jealous that they have other living children, and sometimes just jealous that there wasn't something wrong for their child's whole life.  We know it's ludicrous to truly believe that our grief is somehow bigger or worse, but we also realize how much we would cherish those days, months, years of parenting.  Those memories.

Only a year ago, we would have responded very differently.  These stories would have brought out feelings of pity, fear, hopefully some empathy, but mostly something else.  We're not exactly sure how to put it, it's that feeling of insulation from the horrors of the world.  That reliance that those horrible things could never happen to you or your loved ones.  It would always be a comfortable distance away.

How things have changed.  How we have changed.

Original artwork by CarlyMarie.

The Thing About Strength

When something tragic happens, many people hide behind cliches.  They don't know what to say and they don't know how to feel, so they reach for groups of words they've heard before and seem meaningful.  While we know that these sentiments come from love and an effort to be supportive, they do not always come across that way.  Some of these cliches can be viewed very differently by someone who is grieving.  This post talks about one concept that comes up a lot - strength.  Please keep in mind it is how we feel.  It is honest and raw, but that is where we are at right now.  We are eternally thankful for all of the love and support we have received, but sometimes good intentions miss the mark.

"You're so strong."

"What doesn't kill you makes you stronger."
"You never know how strong you are until you have to be."
"I could never be that strong."

This lionizing of people who have experienced tragedy can be problematic for many reasons.  It is so automatic to call the bereaved "strong" that it really doesn't mean anything.  Let's break down the strong cliches one at a time.

"You're so strong."

Oh yeah?  Assuming this is meant as a compliment, what exactly is being said here?  There are many times where this is appropriate and meaningful, but that only happens when someone does something to show will and determination by choice, not as a consequence of circumstance.  What happens when we feel weak?  When we don't get out of bed or don't make good decisions?  Are we not strong anymore?  This creates a dichotomy between those who handle tragedy with strength, and those who don't.  Even though it is arguably positive, it is a judgment on someone who does not need to be judged.

"What doesn't kill you makes you stronger."

This one has several forms, including "you'll be stronger because of this."  Pretty much the only context where these tropes work is motivating people through ordeals of their own choosing.  Athletic training or striving for academic excellence are times where setbacks must be weathered and will ultimately be useful in getting to the end goal.  With illness and death of loved ones, this cliche is often not true.  What doesn't kill us can leave us shells of our former selves, and we may never recover.  We very easily can become bitter, angry, and isolated.  We can lose all motivation for things that used to make us and others happy.  What doesn't kill us makes us different.  It changes our perspective, but it doesn't automatically result in a better or stronger person (whatever that means).  There is no guarantee that we'll be stronger because our child died than we would be if our son had lived and put us through the daily rigors of parenting a living child.

"You never know how strong you are until you have to be."

It sounds like some sort of call to arms that you now have this opportunity to demonstrate the universal strength you've been hiding all these years.  We do not have secret strength reserves to call on.  There isn't a secret club that doles out extra strength when bad things happen.  Sometimes we carry some strength, and sometimes we don't.  Sometimes we can be positive human beings, and sometimes we can't.  This cliche makes it sound like some kind of gift to unlock your inner strength.  Let us tell you right now that even if all the strength cliches were true and we were now some sort of amped up super-humans, we would trade it in a heartbeat to have a healthy, living baby boy back in our arms.

"I could never be that strong."

Right, because we have those super-secret reserves of strength.  What this sounds like (and probably is) is you're glad this didn't happen to you.  You are such a delicate flower that you couldn't handle it, or worse, maybe because you think you love your children more than we do.  And what, exactly?  What are the other options you think we have?  Check out early?  Believe us, every bereaved parent thinks about this.  The reality is, we will probably continue living for a while, and you probably would too.  Life would always be different, and you may struggle for days, months, or years to find true joy again.  You would probably react differently than we have, only because everyone reacts differently.  You might be what others consider strong, you might not.  We truly hope you never have to find out.

We hope this helps show some perspective on a common trope that shows up during grief.  Instead of making value judgments on people during this fragile, horrifying, difficult time, offer them support.  Offer them unconditional love.  Something as simple as "I'm sorry" or "I'm here for you" is infinitely better than assigning strength to someone who may or may not really feel that way.

We're already under enough pressure from the usual motivational fluff floating around the world these days.  "Make every day count."  "Happiness is a choice."  We fully accept that these are helpful for other people, and might someday be helpful for us.  Right now?  It's a success to get through the day.  To get through part of the day.  Please don't hold us to these ideals you have in your head about how grief-stricken parents should react.  If we have a good day or a good moment, don't assume this is the norm (it isn't).  If something we do strikes a chord with you, it's nice to let us know.  Just please be cautious to reflect on what actually happened, and try not to pressure us to be strong all the time.

It's much easier to count the times we haven't been strong.  The times we aren't truly happy for people announcing pregnancies or healthy living babies.  When we don't have empathy for those going through something objectively tough even if it's not life and death.  The days we don't have the energy to respond to family or friends.  The moments we are bitter thinking about people we thought would reach out to us, but haven't.  When we expect a lot of others, but don't have the capacity to give of ourselves.  The times we pretend to listen to people talk and count the seconds until it's socially acceptable to end the interaction.  The many days we don't want to have to pretend to live up to outside expectations (on top of everything else).

We were able to be strong for Obie when was here.  It's a comfort to us that we are confident we made the right decisions for him and his care.  But he's not here anymore, and we don't have someone to be strong for.  We have each other, and we are supporting each other.  That's all we've got right now.

By each other's side.  All the time.

Obie's Bees

Nicknames happen a lot, and we had a lot for Oberon.  We still think of some, and get a little sad we won't be able to call him by them.  The other day, Chris was being a little slow getting things out of the car, and Elizabeth almost said something like, "come on, slowpoke!" - but didn't, because she thought "come on, Slobie" and couldn't say it.

One term of endearment that we used a lot with Obie was "little bug."  After he passed away, we decided to keep with this theme, and focus it a little more.  Obie had a swaddle with bees on it, and that was enough for us.

Some time later, we got our wonderful yellow gift box, and it worked perfectly.  Yellow and bees, a perfect pair.  Ever since, we've been infesting our home with Obie's bees.  Just as a living child permeates every area of one's life, we welcome reminders of our child everywhere in ours.

We've been decorating the nursery (and many other things) with vinyl stickers made by one of Elizabeth's friends from high school.  It makes us happy to cover Obie's room with his bees.

Not surprisingly, we've started noticing Obie's bees everywhere.  From hikes to state park gift shops to sidewalk advertising, we always seem to find them.

People at work are starting to notice the bees and yellow in Elizabeth's cube.  She doesn't really say why, but she's pretty sure some of her coworkers have figured it out.

Some of Obie's bees sting, but we like it because children are sometimes stinkers like that.

Elizabeth's bee rings like to sting!

Obie's family and friends have jumped on the bandwagon too, and we just love it when they share Obie's bees with us.

Thank you for sharing Obie's bees with us.

Next time you hear a bee buzz, see a bee design, or even have some honey, we hope you think of our precious Obie and his bees.  Use #obiesbees on instagram to share with us (@il0veanne & @thomacx1).

Another way to share Obie's bees is to order your very own Obie's Bees team shirt.  Thanks to the wonderful Amy C* donating her time and mad design prowess, we have this fabulous logo ready to go!  All proceeds (should we get any) will go to Obie's favorite charities.  You can read more about them here.

Place an order for your shirt by clicking here by May 6.

*Amy C is a talented woman.  In addition to her bee-creation skills, she wrote a book!  Check it out.

Things We Never Thought We'd Know

What do you do when your child dies?

That's a question we never thought of, and never thought we'd know the answer to.  Emotionally, it's impossible to answer - and that isn't what this post is about.  What actually happens?  What do we have to do?  How long does it take?

Before we took Obie home from the hospital, we kept asking what we had to do when he passed.  Who do we call?  We didn't want to be staring off into space and having to google what to do.  For some reason, the social workers and hospice people seemed surprised by our questions.  This will never cease to be confusing.

In our case (and we suspect most cases), when someone dies under hospice care, the first call is to the hospice company.  They send a nurse out to confirm the death and start the paperwork.  Then, the nurse calls the funeral home.  It helps if a funeral home has already been selected, which thankfully we had done.  The social worker from the hospital had called the funeral home in advance so they knew our name and some of our information already.

From the time we called the hospice it was about an hour before the nurse was at our house.  The nurse was here about thirty minutes.  It took the funeral home person about an hour after he was called to come to our house, but he was only here about fifteen minutes.

Obie passed away at 12:50 a.m., but he didn't leave our house until almost 4 a.m.

The next day, the funeral home called us and made an appointment for us to come in, which we were able to do same-day.  In probably one of the most surreal experiences we'll ever have, we walked to the funeral home to fill out paperwork and make arrangements for cremation.  This also made clear the need to determine what to do with Obie's ashes.  We weren't completely sure at the time, but we knew we don't want to keep an urn indefinitely.  We wanted to lay his ashes to rest somewhere, but we hadn't decided where.

We also had to order copies of the death certificate from the county.  We thought it was up to us to take the death certificate to social security (turns out, the funeral home did it without telling us they would) and we weren't entirely sure what else we would need copies for.  We ended up ordering three copies of the death certificate, but we didn't know if that would be enough or too many.

We went to the social security office to report the death, but as mentioned, we didn't have to do this.  There was no way for us to know without going, and we don't know if it's a state requirement that the funeral director notifies or if it's the same everywhere.  That visit was also when we found out why Obie's social security card didn't have his full name on it.  Apparently the cap for middle names is 16 letters, so it reads OBERON CHRISTOPHER FIOR THOMA.  Unfortunate.

It was important to us that we had a copy of Obie's birth certificate.  We waited the suggested 8 weeks or so and then headed over to the Santa Clara County clerk's office to get an official copy.  This process was extremely simple and efficient.  The certificate has his full name and our names, and it's nice to have.

Oberon's official paperwork

Elizabeth still carries Obie's insurance card in her wallet, but we've also gotten notices from both our employer and the insurance company that his coverage is no longer valid.  We know it's just an unfortunate situation within the company processes (the same letters go out when dependents turn 26, when spouses separate, etc.), but it's still jarring to get mail addressed to Oberon telling him he's not qualified for insurance.

Another jarring thing was dealing with picking up Obie's ashes.  At first, the funeral home told us there was "no rush" to pick everything up.  A later communication mentioned no deadline, even after specifically asking.  Then, we got a tactless phone call that we had to come right away - apparently there is a 30-day limit for them to keep the remains.  Maybe don't wait until day 30 to call the grieving family?  Maybe be more tactful on the phone?  Maybe don't tell people you can use e-mail to communicate and then refuse to do so?  They called Chris in the morning on day 30 and Chris said we weren't ready to get them, yet.  He asked if we would call back over the weekend, and they begrudgingly said yes, but Monday was the limit.  (They still didn't actually mention the 30-day legal limit).  Later in the day, someone else called Chris again, but he couldn't answer while at work.  After Chris didn't pick up, they called Elizabeth at work. She said she couldn't talk about this now and to please e-mail her, and they started rambling about why they can't e-mail and yadda yadda... so she said, "I can't talk about this right now" and hung up.

After Elizabeth hung up on them, the manager called Chris again, and he angrily stepped outside to speak in private (still during the workday).  Clearly upset, Chris yelled at the manager about how unprofessional and inconsiderate they had been to a grieving family.  After a moderately believable apology and explanation, he finally got the real story and what needed to happen when.  Some of the people at funeral home were extremely considerate of our situation, some had the tact of temporary retail employees.  This was completely shocking to us.

In California, there are some of the strictest laws and permitting for where and how remains are kept or scattered.  At first, Obie's ashes were on file at our house in San Jose.  After a while, we knew we wanted to scatter Obie's ashes back to nature, and decided on scattering them in a Santa Clara County park.  We thought about taking them to Tahoe or Yosemite, but waiting for spring just seemed too long.  There are also services that will scatter ashes by plane or at sea by boat, but we decided it was better for us to do it ourselves.

After a fair amount of looking we decided on a park, and started looking into the process.  There is a little bit of information online, but not much, so Chris ended up contacting the Santa Clara County Parks department to ask how to get the required permit.  He was put in touch with the right person, and after getting a copy of the right form filled out, we received a special use permit for the chosen park for Chris and Elizabeth to scatter the ashes privately.  Again, the process was extremely easy and efficient, so props to Santa Clara County for apparently having their act together.

With the permit giving us permission to scatter the ashes in the county park, we then had to go back to the funeral home to have them get a new permit from the health department documenting where the remains were to be scattered.  Three trips to the funeral home later (in a turn of events that surprises no one, they don't have their act together), we received the correct permit from the health department, and could legally spread Obie's ashes how we wanted.  We plan on sharing the story of scattering Obie's ashes in a separate post.

While there were more logistics and permits to deal with than we would have thought, it is much less than required when an adult passes away.  If you don't have a will, we strongly suggest considering it.  Having to deal with accounts, power of attorney, and other issues in the midst of grieving would add another complication at the worst time.  Be good to your loved ones, and help take care of what you can.

Pause

"How are you?"

"Fine."
"OK"
"Alive."
"Getting by."
Silence.
"Barely able to function."
"Terrible."

It hasn't really gotten easier answering niceties.  Sometimes we want to talk, sometimes we don't.  Sometimes we only want to talk to each other, sometimes we want to talk to other people.  It's always awful.

We are alive.  We are functioning for the most part.  Going to work most days, eating most meals, and sleeping most nights.  Time is going by at a slow crawl.  It doesn't feel right to commit ourselves to new endeavors to fill up the time, so we try to pile up take-it-or-leave-it activities.  Watching T.V.  Working out.  Crocheting for Elizabeth.  Cooking for Chris.  Sometimes it feels good to make something, sometimes we can't do anything but sit.

Most people have dreams for the future.  We have dreams, but there's not a thing we can do right now to try to make them a reality.  We just have to wait.  For time to go by, for things to happen, for grief to change.

We're on pause.  We can't wait to get off pause, but there's nothing we can actively do to move things along.  People like to say when things are bad to move on or move forward, but we can't move towards anything yet.  This horrible pause brings more frustration, impatience, and sadness.  Sadness for losing Obie (always), sadness for ourselves, sadness that we aren't really living right now.  "Life is short."  No kidding.

 Hiking in Muir Woods, 2/28/2015

Motivational speeches and tropes just don't apply to us right now.  Elizabeth went to a conference recently, and most of the fluff was even more irritating than usual.  Being told to drop her perspective at the door was laughable, being told that fear was courage trying to get in was inane.  Making nice with pregnant strangers was next to impossible, and crying in the exhibitor's hall probably happened.  In general, people are nice and very worried when you shockingly start crying during small talk.  She's done it enough times now that it's not even embarrassing.

Someday, hopefully, this time will be a painful memory that we never revisit.  We love thinking of our Obie and will cherish those memories forever.  But now?  This empty time of acute grief, deafening silence, and aching hearts?  There's nothing we can do but try to get through it, and hope the pause is almost over.

Hiking in Castle Rock State Park, 2/22/2015

Thankful for Support

Everything is different now.  At our baby shower, guests wrote little notes and bits of advice on baby feet.  We found the box that kept these notes a few weeks after we lost Obie.  One said, "Things will be different, not necessarily better."  Tragic, but undeniably true.

The love and support we've been given from friends and family is very much appreciated.  It's a very unnatural emotional state for us.  The notes and gifts we've received make us smile, and knowing our son has touched others has real meaning.  Even so, no amount of love, support, gifts, or memories can make it better.  Just as a hug doesn't make you less hungry, none of this makes us miss Obie less.  That's not to say we want any of it to stop or that we're at all suggesting to leave the bereaved alone.  Quite the contrary.

We were surprised by gifts given to us to memorialize Obie.  Having physical things we can see and touch has been helpful.  These came from unexpected places and continue to bring us comfort.

• House divided blanket, made with love specifically for Obie
• Holiday ornaments with Obie's name, prints, or picture
• Hand and foot print ceramic ornament
• Necklace for Elizabeth, with Obie's initial and birthstone (she wears it every day)
• Another necklace, with a noble bear along with Obie's birthstone
• Picture frames, scrapbooking stuff, and albums
• Stepping stone to remember Obie
• Mickey Mouse ears, with Obie's name embroidered
• Stuffed "Obearon" bear
• Suncatcher made with Obie's birthstone colors and a bear

Things with Oberon's name make us smile, even when we are sad.  So much so, that we started a gallery for these!

Two gifts we received were things we would have never thought to do, and are so grateful someone did.

• Elizabeth's college dance team friends (Katie, Ashley, Bec, Sarah, and Tina) sent a frame with a very special matting.  The mat is decorated with words from Elizabeth's letter to Obie.  It took us a minute to realize that the words were so personal, and so specifically for Obie.  

• Our good friend Rachel sent us a gift basket filled with love (in the form of yellow things).  She wrote that she looked up Obie's birthstone and that it brings light into the lives of those who work with it.  We latched onto it and are now in love with all things yellow.  A yellow candle burns on our table when we're home, Elizabeth's nails have been yellow for weeks, and pieces of citrine were sent to Obie's grandparents, aunts and uncles, and cousins.

We also are thankful for those who provided us with food when we were in no shape to take care of ourselves.  It's still rough and we're not very frugal or as healthy, but we're appreciative for the help we got in the beginning.  Help from local friends dropping off food, Elizabeth's coworkers sending food, and far-away friends sending gift cards made our diets much better than they otherwise would have been.

As we've said before, donations make all of us smile.  The mail brings us a smile when we see a thank you letter from one of Obie's favorite charities - FNIH, NORD, NILMDTS, and JW House.  We're tracking the Obie donations we know of and hope to continue doing so.  So thank you, Rev. Sherry, Christina & Chris, Aunt Jan & Uncle Art, Angela, Erin & Nathan, Sherrie & Melissa, Rebecca & Jeremiah, Obie's Aunt Megan, Jenna, Aunt Sandy & Uncle Larry, Sarah & Mike, Beth, Matt, Janine, Rachele, Jared & Suzy, Julie & Greg, Liz & Bean, Nicole, Janice & Frank, Jenny & Tony, Anne & Brad, Joanna, Tina, Mary, Steve & Jeanne, Jessica & Dan, Myra & Jeff, Justin & Karen, Victoria, Ann & Matt, Katie, Obie's Grandma and Grandpa Fiorani, Lynda, Robyn & Mike, Marilyn, Cindi, Jessica, and Chris's colleagues.  And thank you to those donated in honor of Obie that we haven't been notified of.

We've said it before and we'll say it again: Donations make Obie smile!

We have wonderful people in our life.  We know that.  And until now, we've always felt unbelievably lucky.  Now we feel both lucky and cursed.  Thankful and furious.  Comforted and depressed.  It's complicated.

And as selfish as it is to say, we hope the love doesn't stop coming.  We need all the little smiles we can get right now.

NICU Superheroes

From the moment we knew the NICU was in our future, we knew we wanted to share the experience.  The thought of being in the NICU is overwhelming and scary.  We wanted to demystify it as much as we could, in case it helps someone down the line.

Takeaways

• You are the parent.  You know your baby the best, be confident in that.  You are the one constant among rotating nurses, doctors, specialists, and managers.  Take the best parts of each person who interacts with your baby and try to carry it over to the others.  
• Listen to anything the nurses say about ways they've calmed your baby.  They have a lot of experience and may have thought of something you haven't.
• Knowing ways to calm your baby (and speaking up about it) helps with new people - including new nurses or technicians who are running tests or procedures on your little one.
• Be nice.  Firm, but nice.
• Don't be afraid to call and check in.  You're not bothering anyone, and you deserve updates on your baby.
• If your nurses are chatty, talk to them.  The more they get to know you and your baby, the better.  If the nurses aren't chatty, still ask them any questions you have.  We always started with "how's he doing?" when we visited.  This got us up to speed on any recent issues, if he was eating/sleeping/pooping well, etc.  
• Always ask for what you want.  If you want to hold your baby - ask.  If you want to take care of your baby by changing diapers or taking temperature - ask.  Some nurses are more proactive than others asking what you might want.  It's up to you, and the worst that happens is the nurse advises against it and tells you why.  We didn't ask to hold Obie as much as we should have in the beginning.  We were worried it was too much trouble and was disturbing him too much.  We should have at least had the conversation more often.  

In the NICU with Obie on 11/26/2014

There were more people involved with Obie's care in the NICU than we could hope to remember.  A big team of doctors and nurses, nursing managers, receptionists, social workers, specialists, technicians, respiratory therapists(RTs), lactation consultants, geneticists, and plenty we've surely forgotten.  Some of these people made a real impression on us and we wanted to share a little bit about them.

Superstar Doctors

• Obie's most frequent dayshift doctor was Dr. H.  We were very lucky to have him as he was gentle and kind.  He was the one who requested the cranial ultrasound and subsequent MRI, and he was also the one to tell us about Obie's full diagnosis.  That was going to be a terrible moment no matter what, but Dr. H. was empathetic and also straightforward in what the diagnosis meant.  He was patient with our initial questions and our follow-up questions over the next few days.
• Dr. S. ended up being Elizabeth's favorite doctor.  She suggested Obie's field trip to the courtyard and made it happen.  She was also the doctor who extubated him.  She was very understanding with us on the timing of extubation and release from the NICU.  One of the nurses mentioned to us that Dr. S. was fantastic with end-of-life considerations, and that was very true.  She told us it was important to make memories with Oberon, and she was right.
• Dr. K. was probably the most straightforward on the team.  Sometimes too much, but sometimes it was what we needed to hear.  It was good to know there was someone who was giving us the facts and not sugarcoating or omitting the scary possibilities.
• Dr. A. was the only one we referred to by first name.  She seemed younger, and also had a hard to pronounce (or remember) last name.  She was very sweet and chatted with us at Obie's bedside on some of our late nights.  Dr. A also worked through Obie's discharge plan and paperwork.  She was extremely compassionate while going through the DNR paperwork, which was difficult, but necessary.  
• Dr. W. was Obie's first doctor.  She got him over to the NICU and ready for surgery.  She was very straightforward. 
• Dr. Craniofacial Surgeon (can't remember his name) came to talk to us once the Beckwith-Wiedemann diagnosis was pretty clear.  He talked to us about potential tongue-reduction surgery down the line and how he's done a lot of work with BWS kids.  He made us feel more comfortable with the BWS diagnosis knowing that there was an expert close by who had dedicated a good chunk of his career to kids like Obie.
• Dr. Su. was Obie's surgeon.  She explained everything and was also patient with us.  We had met her over the phone months ago, and she was just as nice then.  She stopped by to check on Obie multiple times after his omphalocele surgery, which went really well.  She also made him his cute little belly button.

Dr. Su. made a pretty cute belly button! 

Superstar Nurses

• Night Nurse R was one of our favorite NICU nurses.  She was part of the delivery team, so she met Obie on his birthday.  She also cared for him many other nights.  She was compassionate and helpful, and made sure Obie had the best of everything.  She fixed his respirator placement (along with an RT, of course), got us hand and foot prints, let our family visit with Obie (and have videochats), and cleaned him up for his photo shoot at the hospital.  She gave excellent care to Obie, and it was obvious that she cared a good deal about our little bug.
• The only labor and delivery nurse we really remember was Nurse A.  She was the one there for Obie's birth, and she made sure Elizabeth got a private room for recovery.  
• Nurse Jn was extremely nice, and also very competent.  We trusted her immediately.
• Lead Nurse J took a little warming up to.  At first, we weren't sure how to respond to her, but after a few days we grew to really appreciate her.  She was very protective of Obie and piped up whenever specialists were coming around. 
• Night Nurse J was actually one of Elizabeth's post-natal nurses too, but we didn't see her that much then (because we were in the NICU).  She made Obie's scrapbook page for his shelf in the NICU.  We saw that other babies had one, and were so excited the morning that Oberon's showed up.
• Nurse Jc was Obie Xmas nurse, and we are so thankful for her.  She was excellent with Obie, and made sure that we had everything we needed to feel comfortable bringing him home.
• Nurse K only had Obie for a couple days, but she made a real impression.  She helped us learn a little bit of baby massage, took Elizabeth around to various courtyards to scout a photo shoot location, and gave us some very poignant advice.
• Nurse Manager C. helped admit Obie to the NICU on his birthday.  While we didn't interact with her too much, she really looked out for Obie and for us, giving us the green light to stretch the rules about number of visitors and visiting Obie during shift changes so that we could spend more time with him.  She also worked out an issue with Obie's prescriptions when the pharmacy kept screwing them up, going so far as to pick them up for us so we didn't have to leave Obie again.

Oberon's scrapbook page, made by Night Nurse J.

Superstar Others

• Our social worker most of the time in the NICU was I.  She was very compassionate and helpful throughout our experience.  We met her before we knew the extent of Obie's problems, she was there when we found out, and we saw a lot of her as we prepared for Obie's discharge to hospice care.  Her job must be so tough, but she was gracious every time we talked to her - even when we were less than composed.  She let us use one of the private rooms when we told our immediate family what was going on with Obie, she found a funeral home that fit our needs and made the initial call while we were still in the hospital, and she gave us a lot of grief support information.  I don't want to think about how much worse the experience would have been if we didn't have her help.

As we said before, there was a huge team of wonderful people caring for Obie and supporting us and our families.  We are grateful for everything they did to help us through Obie's NICU stay.

Obie loves Tummy Time

There's an Obie smile under all those tubes and wires!

Race Car Driver Obie.