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.

It Is Not OK

This post was written by Elizabeth.

I used to visit sadness, but now I live there.

I had that thought while lying in bed about three weeks after Obie passed away.  The more I think about it, the more true it seems.  I was always a softie with books and movies (that opening sequence of Up had me full on weeping).  I cry when I hear or read about others' personal tragedies.  Sometimes it seemed like I felt other people's pain more strongly than my own.  Now I know it's just that really sad things hadn't happened to me yet.

The feelings I had were real then, I really did get sad and have big cries.  And then I left it.  I could go all the way in and be wrapped in sadness, and then I could back out and shut the door.  Move on.

I can't do that anymore.  I live in the sadness room now.

I tried to think about all the happy moments.  I thought if I focused on them it would make the sadness melt away.  How could I be overcome with devastation when I had so many happy memories?  33 days plus 7.5 months of pregnancy is a lot of happy memories, and who am I to complain about that?  It was worth it, so I shouldn't be so sad.

How did 33 days start to seem like a long time?  I remember how it happened.  When they told us about Obie's omphalocele, I cried a lot.  I kept repeating that I just wanted him to be OK.  Then all the other testing came back and it seemed like things might be OK.  We were gonna make it to OK.

Then he was born early.  And stopped breathing.  A lot.  My bar was that he would be OK someday, even if he had to be in the NICU for months.

Then the MRI results came back.  He would never be OK.  I didn't consciously realize it, but we would never be OK either.  The bar moved.  The new bar was that he would make it home.  He did.  We made it!  I was really happy about making that bar.

Usually we meet one goal, and we set another.  I had to realize that our next goal was our last one for Obie.  Our goal was for him to pass comfortably, surrounded by love.  It's depressing and seems melodramatic, but it's my actual life.  I can't escape it.

Even being this broken, this devastated, and this depressed, I can function.  I can shower and go to work and even smile sometimes.  I can pretend things are fine (sort of).  People who don't know what happened probably just think I'm awkward or mean.  People who do know what happened try to be nice, but it ultimately gets awkward.  They can get away.  I can't.

I bring it with me everywhere I go, this cloud of sadness.  I'm scared to go to happy occasions to mark other people's life events, because I'm a strong believer that those events are about the people they're for.  The wedding is for the couple, and nothing should detract from their happiness.  The baby shower is for the parents, and nothing should tarnish that joy.  I'm scared my cloud of sadness will darken what should be pure and bright.  Even if I don't burst into tears, I'm still the childless mom.  I'm sad.  I feel sad and I represent sad things to other people.  I feel the need to express myself, but I get sheepish because I know no one wants to receive what I'm putting out.  I try not to post woeful updates, but I do post pictures of Obie every day on Instagram.  For some reason I feel like it's OK to do that on Instagram since people can unfollow me if it bothers them.  I won't care.  Facebook is more utilitarian, and I don't want to inundate people daily with my sob story.  Someday I'll run out of pictures to post.  What then?  Repeat?  Find something else to obsess about?  Retreat into online silence?  It would be so easy to isolate completely.

I was so ready to be a mom to a living child.  I was so ready to maintain my relationship with my husband, keep on keepin' on with no sleep, get back into an exercise routine, sing silly songs, video tape and document milestones, send pictures and gifts to family from the baby, do diaper laundry every day, figure out how to put the Boba wrap on by myself, rock the baby in my glider, encourage language development by responding when the baby made noises, video chat with far away friends, entertain visitors, take the baby to work to meet colleagues, go for walks in the park... I could go on for pages and pages without running out of things to say.

I was not ready for this.

It's both comforting and terrifying to know other people who've experienced child loss.  Family friends I never knew lost a baby, Facebook connections, friends-of-friends... It wasn't something I ever really thought about before.  Yes, it's rare, but it's not that rare.  Especially not to me.  I'm not alone, and there are people I can talk to - those I know and faceless people on internet pages.  But that's just it, the fact that I'm not alone means that this happens.  While it's not a high percentage, it's still a lot of people.  A lot of babies missing from families.  Some families I knew, but didn't know they weren't complete.  Is that how I'll be someday?  A lady that people don't know is missing a son?

So those are my choices.  Sadness cloud or omitting my son.  Forever.

Do I think people want to read this downer of a post?  No, but I think it's important that I communicate that it isn't all the positive things we try to emphasize and focus on.  I am not happy.  I am not OK.  I love my son, and when I think about him I can't help but smile.  Being able to smile and have some glimmer of a positive feeling does not make any of it OK.

There's no resolution, or neatly wrapped up conclusion.  I'm in the middle of it, and I expect it'll be that way for a while.