How to help someone who is grieving/living the hospital life

Creative title, huh?  But since I intended to have this blog up long, long ago and have been sidetracked, it will have to do.

There have been a few instances since Aria died where I have been approached by someone looking for advice on how to help someone else going through similar things.  I thought it would be helpful if I wrote about what we most appreciated from others, in order to spark some ideas.  I know that my ideas NOW as far as what is helpful, compared to my ideas BEFORE, definitely do not line up!  It definitely takes living through something like this to understand the specific difficulties that are associated with it.

Although everyone is going to be a little different on what specific show of support they need, I've broken the situation into 2 large chunks:  Hospital Life, and Grieving Life.  For us, we had 2 months of basically living at the hospital before Aria passed away.  Our needs during that time were very different than our needs after.  So I have tried to specify if there are ways to help that are better suited to one situation than the other.

Don't just say something like, "what can we do to help you?"  Even though it is very well-meaning.  Whenever I was asked that I would usually answer with a blank stare.  Guys, I know the offer was genuine, it's just that you have to understand that when you're going through something like this, your brain is FRIED all the time.  Especially when we were living the Hospital Life. . .I literally couldn't plan more than 24 hours in advance, because our schedule at the NICU changed every day based on what new tests they were running or what doctors wanted to talk to us or what visitors we had coming.  It made it SO HARD to plan anything.  Child care for my older son, meals, even being able to tell people for sure times that we would be at home.

Gifts:  I loved and kept every single thing people gave us for Aria, both while she was alive and after she died.  I keep them all in a dresser full of her momentos.  We have lots of headbands, a couple bracelets, a few personalized blankets, small stuffed toys, a dress, drawings from several different children, even a little crocheted ladybug costume, and some other things.  I just love that I have tangible items that I can say are hers, even if she never saw or touched them.

Equally important - the gifts that came for my son, both before and after Aria died.  I think in these kinds of circumstances it is really easy to forget about any siblings and to focus only on the parents and child involved.  But this was as difficult a time for our son as it was for the rest of us, and I just really appreciated whenever anyone thought to send him a little trinket.  Especially during Hospital Life when I was away from him so much.

Throughout the whole process, both Hospital and Grieving Life, THE MOST IMPORTANT thing anyone could do was just to let me know they cared.  This could be as simple as a text every couple days letting me know they were thinking about us or asking about the baby or sharing a way that our baby was inspiring them to be better.  In our everyday busy life, I was just appreciative to have been a thought in someone's mind.  It helped me feel like our baby mattered to more people than just us, which is HUGE as a parent!  We spend their whole lives proudly showing them off, I wanted people to still care about my baby even if I couldn't physically show her off.  This is still true even though she's in heaven now.

Related to that - make sure to mention the baby.  No matter the diagnosis.  It was always super awkward when people would ask repeatedly how I was doing, or my husband, or son. . .but they seemed terrified to mention the baby.  This is more true after she died.  I know it's really awkward for most people to mention the deceased, but it did hurt my feelings because I felt like they would rather she just be forgotten.  Or maybe they didn't want to bring up painful memories.  But what those people don't understand is that I already was thinking about her 24/7.  Still do!  You're not "reminding" me of anything, so when you mention my baby that just helps me know that you remember her too which is all I want.

As far as tangible gifts for parents goes - anything of course was truly welcomed and appreciated.  There are two types of gifts that we received that were particularly helpful though: gift cards for cash or gas.  I hesitate to even mention it because it sounds so blunt, but my feeling is that if you are going to spend money on someone, I might as well tell you what will absolutely get used.  Restaurant gift cards are nice but we didn't get a chance to use them until months later when we had the luxury of flexible time again.  But we did spend a LOT of money on food at the hospital cafeteria, so it was super nice to just swipe a VISA gift card.  We also spent hundreds of dollars each month on gas so the couple of gas cards we got were used quickly (and thankfully they were for stations that were near us).  That one I'm sure is not as important in some cases where the baby is very close, but where Aria's NICU was an hour away, we spent a. lot. of. time. driving. back and forth, sometimes several times each day depending on what was going on.

Play dates:  I got so many offers of baby-sitting, and truly appreciated them.  However, most of those offers stopped after Aria died.  It makes sense - people knew how busy we were with Hospital Life, so they offered childcare, and then figured we didn't need it once we were no longer schedule-crazy after she died.  However.  This is actually backwards of what would have been helpful.  Let me 'splain: During Hospital Life, if I was leaving Bennett with someone in the neighborhood it really needed to be for several hours to make it worth it since the NICU was so far.  Drop him off, drive an hour, be in the NICU for 2 hours, drive an hour home to pick him up.  And 2 hours in the NICU is practically nothing, although of course better than nothing.  At any rate, asking a neighbor for a minimum of 4 hours is kind of a HUGE favor, and kind of risky because I never knew if I'd run into traffic on the way up or back, or if a doctor would drop by right as I was getting ready to head home, etc.  I just always felt so bad if I ended up being late coming back.  And not just for the neighbor, but for my Bennett boy.  He turned 3 during Hospital Life and leaving him with a neighbor for 4 hours was just really long for him at that time, mostly because he had severe abandonment issues that took months to work through.  At today's age where he could understand what was going on better it would be fine, but he was just too little back then and was happiest when I was at least in sight somewhere.  He did much better when he was with family members who he knew well, but that was hard on me because they lived in the opposite direction so that meant my commuting time was doubled.  The best child care during that time came from two angels who were able to offer regular child care for free.  One was some old friends who we hadn't kept in touch with, but who reached out because they lived near my husband's work.  We were able to come up with an arrangement where once a week I would drop Bennett off in the late afternoon and go to the NICU, and then my husband would pick him up a couple hours later on his way home.  It was AWESOME.  I got to spent the whole evening at the hospital totally stress-free knowing that Bennett was only away from his parents for a couple hours that day (on those days my husband would usually go up to the NICU in the early morning, just in case you were wondering).  The other was my aunt who lived only about 20 minutes from the hospital!  On the days where I didn't have any other help I could drop Bennett off there on my way up, spend 2-3 hours at the NICU, then go pick him up.  He loved playing there with my little cousins and knew I wasn't far away so he was content to last a little longer without me.  In Grieving Life, I was at home physically with my son all the time, but I was mentally/emotionally spent.  This is where the playdate offers would have been most helpful, because I could have easily taken him somewhere in the neighborhood for a couple hours just to be able to have a little time to collect myself and recharge for the rest of the day taking care of him and all the household needs.

Meals:  This one gets tricky.  I don't believe I cooked at all while Aria was in the hospital.  I just didn't have the time.  I was sure sick of fast food and take-out by the end of those 2 months of Hospital Life.  I knew I'd survive, but it really added to my stress to feel like my son was not getting the nutrition he needed as a toddler.  As far as grocery shopping went, we only ever bought staples - milk, eggs, bread.  You know what would have been great?  If we had been stocked on easy-grab healthy foods.  Both for parents and kids.  Things like yummy granola bars, yogurts, fruit cups, Lunchables, non-messy fresh fruits and veggies, applesauce pouches, cup-o-noodles, microwave dinners. . .you get the idea.  Anything that is easy to eat while in the car is a bonus since over half the time I only had time to eat while driving.  Fresh meals or freezer meals that people brought over were great of course, but way more helpful during Grieving Life when our schedule was no longer as crazy.  While Aria was in the hospital I didn't dare even start a crockpot, lest I burn the house down by staying at the hospital too long.  And fresh meals were hard because as I've mentioned, I was never able to give people concrete times of when we would be home.  But during the immediate grieving period those meals were so helpful and amazing, because we obviously were not in the mood for cooking for a long time afterward.

Flowers:  Another kind of tricky one.  LOVED having fresh flowers in the house to come home to at the end of long hospital days.  HATED having fresh flowers in the house after Aria died because it was just so damn depressing watching more beautiful things slowly dying.

Biggest tip of all: Do something! Anything!  Even if you don't know them!  Even if it's just a quick text, FB message, note in their mailbox, etc.  While I can't tell you specific names of people who just sent quick little notes of sympathy/support, I CAN tell you that it was little messages like those that helped me get through the day.  Just to know that someone was thinking of us was huge, even if they weren't actually doing anything.  The big shows of support, of course, were life-changing and amazing.  But just having these tiny random messages from people throughout the day was equally amazing.  They always seemed to come right when I was at a breaking point, and would help give me the energy to last a couple more hours.  And they were often from people who I didn't usually talk to, or barely knew.  It ALL makes a difference.

Aria's Life in Review: Day 50 - August 18, 2014. . .The day she became an angel

Mike, Bennett, and I had slept at the hospital the night before, then we had the family room reserved this day so we could have privacy on Aria's last day.  

I love this picture of Mike and Aria - I told Mike that Aria's hair was lightening up to be closer to his shade, so he tried to compare.

We spent some time as a family for the last time, then sent Bennett home with my sister after he said his goodbyes.  He left her with a "hug, kiss, and tickle" on her tummy which was his thing at the time.  It was cute and endearing.

(taken just minutes before she passed)

In the early afternoon, Mike gave her a blessing, and her medical team came to take her off of life support.  Without going into details, she passed from this world pretty immediately.  Although we had not expected her to go quite that quickly, it was somewhat reassuring that we had made the right choice in not trying to force her to live when she clearly was done.  She had a foot in death's door ever since she first crashed a few days prior, and we just felt like it was cruel to demand she be kept in this world.  Even still, making the decision to let her go was, and I hope will always be, the most difficult decision I have ever had to make.  Even knowing it was the right decision didn't make it any easier.

We spent a few more hours with her before we left her forever.  Walking out of that room for the last time was equally as hard.  I will always treasure that first and last time I had to hold her freely, without wires.  We just love that little girl so much.

Aria's Life in Review: Day 49 - August 17, 2014

Since Aria hadn't had any scares the day before, I felt ok going to my sister's house 15 minutes away to sleep, instead of sleeping at the NICU again.  When I got back to the hospital the next morning I found that our primary nurse had gotten Aria all dolled up for her visitors today!

 I love how some of the nurses were able to do some cute things with her hair during her time there.  I never knew what to do with it!

We had gotten special permission to reserve the family room so that our immediate families could come say their last goodbyes.  We didn't let anyone hold her there because we knew just having that many people in the room would be plenty of stimulation.

We spent most of the day with her at the NICU. . .and the night, too!  Because of the circumstances, our nurse was able to get a room one floor down in the Ronald McDonald housing.  So for the only time ever, our family was able to all sleep in the same building!  Funny how in normal life we take that for granted.

(my view looking down at her snoring away in my arms)

I stayed up late with Aria having some good bedtime snuggles.  She was wearing a cute little sleeper her night nurse had found in the NICU collection.  I didn't start visiting Aria much at night until the last couple weeks, and I regret that.  Bedtime snuggles are where it's at!

At midnight I finally gave in to the sleep and went down to our family room, where I found my boys already sleeping away.  So then I pumped and showered and finally got into bed around 2am.  Totally worth it to have my family all together.

Aria's Life in Review: Day 48 - August 16, 2014

I had slept at the hospital the night before, so when I woke up I got Aria dressed in the one outfit I had found that met all the criteria (with matching headband, of course!) I sent the picture to Michael.  This is actually his favorite picture of her!

We tried to get a bunch of people in to hold Aria today - knowing she only had a day or two left, we wanted to make sure our families could at least hold her one time.  My brother-in-law, Mike's parents (who had flown out and arrived today), and my parents all got to hold her for the first time today.  That was way more than we'd normally permit, but we knew that we were running out of time.

Aria's Life in Review: Day 47 - August 15, 2014

I usually woke up around 5-6am to pump milk, so since I was up anyway I decided to call in to the NICU and check on Aria.  I talked to her night nurse who told me that Aria had crashed again during the night.  They were able to revive her quickly enough that they didn't call us and wake us up, but still significant. This just reaffirmed that we knew Aria was no longer meant to stay.

After 2 close calls in a 24 hour period, we decided one of us should be with her at all times until she passed.  We decided I should sleep at the hospital that night.  We were lucky to have that same night nurse 3 nights in a row so I got to spend a lot of time talking to her.  When I arrived that evening, that nurse was giving Aria a bath.  Although at first glanced she seemed to be sponging her pretty roughly (I was always afraid of hurting her or a wire though so I always bathed her super soft), one look at Aria showed me that she was actually loving it!  She was in total bliss.  I even took a video because I don't know if I had ever seen her that happy before.  She did love her baths though! It was the first little bit of happiness I felt from her since she had coded the day before.  I know it doesn't make sense to most people how we could sense her different emotions from a baby who appears to be sleeping most of the time, but it's the same as with any newborn - you get a sense for what they're feeling very quickly when it's your own child.

Right before visiting hours were over, my sister and brother-in-law ran in.  They had been in CA that week and weren't supposed to come back for a couple more days.  However, I had updated Kav about Aria's code the day before, and then that morning when she found out about the 2nd incident, they hurried and packed up and were on the road within half an hour to come back.  So of course we had her hold Aria, and our night nurse was awesome and let us sneak my brother-in-law in the room too (normally only 2 people are allowed bedside at a time).  Aria had her eyes open a lot but looked so sick.

Aria's Life in Review: Day 46 - August 14, 2014

This day. . .this day was a hard day.  This morning I walked into the kitchen to find Bennett talking on the phone to someone.  Apparently my phone had rung while I was in the other room and he had picked it up.  We have been trying to teach him to bring the phone to us instead of answering it himself, but that small act of him answering the phone may have kept Aria with us a few days longer.  

When I took the phone from him, I saw it was Primary Children's.  This was not unexpected, because they would usually call once a day with an update.  So I figured that's why they were calling.  I could see that Bennett could have been talking to them for as long as a minute, so I was embarrassed and started apologizing to our NP who was on the other end.  That's when she interrupted and told me that she was actually calling because Aria had coded (flatlined) and had called to find out if we wanted them to go against our written wishes and use extreme measures to save her, or to let her go. . .however, by the time I picked up the phone from Bennett, their efforts at stimulating her body to respond has started to work, and her heart had started beating again.  At that point she had to get off the phone quickly to assist, but made it clear that it looked like we were okay for now.

I was absolutely sick the next couple hours until we could get up to the hospital.  Because Aria had already had all kinds of crazy life-saving measures taken the day she was born, we didn't want her to have to go through that pain again knowing it was just a temporary fix, so we had decided to just let her control when she'd return to heaven.  If I had answered the phone right away while she was flat-lined, I probably would have told them to make sure she was comfortable and let her go, and she'd be gone.  I really think that this was all part of a master plan to alert us that we were at the end, and give us a couple more days to say goodbye to her.

It's crazy how fast she suddenly turned.  Just the day before, we had met with our primary nurse and the NP who wanted to talk to us about how well Aria was doing with her oxygen and that maybe we should try moving to the nose tubes again.  Of course, once she coded, nobody was talking about that anymore.

Those last couple of days were special and heartbreaking at the same time.  As soon as we got to her that day after she crashed, it was clear there was a change.  Those last few days she never seemed fully herself and seemed to just hover between life and death, just barely hanging on.

That evening I was supposed to go to a Girl's Night with some girls from our old neighborhood.  I was actually really looking forward to it, but of course after Aria crashed I had to tell them I was out.  Late that night one of them dropped by a bag full of headbands and this cute bracelet!  They had planned to give them to me at the party.  They told me pick out my favorites and give the rest to the NICU (the source for my idea later on to collect headbands at her funeral, I just thought that was the best idea!)  This pink flower headband remains one of my favorites.  Before having Aria, I always thought pink was too cliche for a girl but I had to admit it looked cute on her!

Aria's Life in Review: Day 45 - August 13, 2014

Aria had never really seemed to bounce back all the way after her bout of infection, and all her doctors and ourselves had the feeling her life might be drawing to a close.  So Michael and I decided to start letting other people hold her.  Up until now, we had been the only ones.  This took some sacrifice on our part, because she could only handle so much stimulation, so by letting other people hold her that meant we held her a little less.  We felt it was important though to let our families have the chance to hold her.  We knew they all were in love with her too.  So tonight after Mike was done holding her, she was lifted out of his arms and into my sister Ayisha's.  She didn't know beforehand we were going to do that so it was a good surprise.