The Aria Rutkowski Nursing Scholarship: What happens now, and how it works.

On Friday we met with Frank from USU to go over our scholarship contract!  Frank is, and will forever be, our contact there for all our interactions with them.  It was so exciting to meet with him to get things finalized!  Neither of us has any tie to USU so I know it seems kind of random, but we felt like that was the best choice for what we wanted to accomplish.  Michael did a lot of research and made a lot of phone calls before settling on Utah State for the scholarship.  The timing works out well for them too - apparently up until now their nursing program has been tied to Weber, but this year they split off.  Which means that they had to divide funding.  On top of that, they are trying to triple the amount of students they can accept into the nursing program each year because right now they can only accept about 3% of the applications they receive each year.  They are trying to expand their program to help prepare for the upcoming extreme nursing shortage forecasted for the year 2020.

Our meeting with Frank just really helped to cement our decision.  There were just so many little things that called to us.  For starters, Frank's daughter happens to be a nurse at Primary Children's!  So he hears the stories and understands our passion.  Also, the Emma Eccles Jones college at USU (which houses the nursing program) focuses on early childhood - how perfect since this is a tribute to our little girl.  Then, today while looking through the paperwork he gave us, I stumbled across a brochure detailing a new program USU has called Aggies Elevated.  It's a program for students with disabilities, the only one of its kind in Utah.  So perfect.

The scholarship endowment lasts in perpetuity.  What this means is that the scholarship NEVER ENDS.  USU takes the initial investment amount and puts it into an interest-earning account.  Each year, the earned interest is what is dispensed to the scholarship recipient.  We can add to the base amount at any time in order to increase the interest amount.  Right now there's enough for one scholarship a year.  Obviously we'd love to add to it over the years so that we can have more scholarships granted.

We are making the final touches on the contract then will turn that in within the next couple days.  If we want the scholarship to begin next year, we have to have everything done by November.  Thanks to all the wonderful people who contributed to the GoFundMe account, this is no problem!  All we have to do is make up the cost difference from our own savings and write them a check.  Students can apply for the scholarship in January, and in February a scholarship committee will choose a winner.  The scholarship committee will be made of people from the nursing college, who will choose a winner based on the criteria we have outlined in our contract.  The criteria is entirely up to us.  Isn't that cool?

So far these are the criteria we have in place:
1.  Student must be in their junior or senior year of school (firmly invested in the nursing program)
2.  Student must display a measure of empathy above that expected of a nurse (hard to measure, but will be assessed from things like their service hours and their personal essay)
3.  Student shows some financial need.

So a winner is chosen in February.  Then in April is an awards ceremony where donors are invited to present their scholarships to the recipients!  Then at the beginning of the fall semester is a dinner that all the donors and recipients are invited to in order to have a chance to meet again and really discuss the background to the scholarships.  We had no idea about those last two things, we thought the scholarship would be just a quiet, online affair.  How cool that every year we will get to talk with the scholarship winners and share Aria's story with them.  Hopefully it will inspire them as they begin their nursing careers.

One month

Stretching.  She always scrunched up her eyebrows and made it serious work.

It's been one month today since I lost my little girl, and ohhhh how I miss her.  I feel her loss every day, this subtle constant nagging that an important part of our family is absent.  It's been both the longest and shortest month of my life.  On one hand I'm sad that it's already been a month, that Time doesn't care and keeps carrying me farther from her.  On the other hand, we did it!  We survived a month.  One down, about 700 to go before I can hold her again.

Speaking of counting. . .while the grieving process is so fresh, there are so many dates and times that remind me of her. Little "anniversaries" of sorts.  She both was born and died on a Monday, so Mondays I always think of her.  Every Sunday feels weird because we're just at home all day, but when she was alive we would spend Sundays at the hospital talking to Jamie.  And often if I have to pump in the middle of the night, I find myself wondering if maybe Makenzie is on shift.  I suspect that as time goes on all those associations will decrease.  The first big accomplishment was when we made it 24 hours without her.  Then a week.  Every week was a milestone until now we have hit a month.  Twice a month, actually - she was born on the 30th and died on the 18th, so basically every couple of weeks is a date that reminds us of her.  I'm guessing that now I'll only count the month marks until we hit one year.  And after that I'll only count the years.

One thing that I've learned is that death is definitely harder on the survivors.  I don't think Aria is tracking Mondays up in heaven :)  We know that she is okay.  She is so much better off going back to heaven so quickly instead of having to go through a long earthly life.  But even though that's what was best for her, we still selfishly wish she was with us!  We still have a lot of hard days, or hard moments in a day.  I'm just so thankful that even at the base of the heartache there is peace.  I know we did the right thing in not insisting that she stay alive at all costs.  The costs were too great.  A few days after she passed, Michael gave me a blessing.  The first thing he said he felt inspired to say was that Aria wanted me to know that she was happy. Well, of course she is!  But it still made me cry with relief to hear that.  Poor dear doesn't need to suffer in an imperfect body anymore.  She's probably up there giddily running around enjoying perfect little arms and legs that work.  She worked so hard just to stay alive those last couple weeks.  No baby should have to work that hard.  So even though I am so devastated by her loss, I'm happy for her sake that she is finally comfortable.

The day she died, I was in such mental anguish all morning.  I couldn't stop crying and I just wanted to throw up.  I kept second guessing myself and asking if we were really doing the right thing by allowing her to go back to heaven.  I was just so afraid.  When she passed, it was sudden.  We thought we would have a couple hours to snuggle with her as she slowly faded, but instead it was only minutes.  She didn't fight it at all.  She was so ready.  As soon as I realized what was happening I scooped her up into my arms and nuzzled her head into my neck.  At that moment I just felt so much peace, more than I've ever felt in my life.  I didn't start to bawl, or hyperventilate, or any of the other reactions I wondered if I'd have.  I was absolutely devastated, for sure, but for the first time since she was born I knew with absolute certainty that we were doing the right thing for her.  Heaven felt so close.  I remember telling the NNP when she came in that I was surprised by how absolutely peaceful I felt.  She then said something very smart - she said to remember and cherish what that felt like, because as life went on there would be times where I would doubt again and that I needed to always remember how I felt at that moment, knowing beyond a doubt that we chose the right thing for Aria, what she wanted.  And I have.  While this past month has been so much harder than I imagined, I have never doubted.  She really was only waiting for us to be willing to make that sacrifice of letting her go.

I don't really feel her with me.  I've had a few people ask if I do.  Or I had another mom who lost a teenage son say she could feel his spirit constantly.  I don't really feel that.  I feel a general encouraging love from heaven, but never her specifically.  I'm hoping that I will eventually, that she'll "check in" from time to time.  But in the meantime I'm actually okay with it.  I think she's very busy in heaven doing good for others.  If I just felt her presence constantly I would kind of be like, "well if you're just going to be with me all the time anyway then you shouldn't have died, you should be here in a body that I can cuddle."

I got a card last week from some friends who apologized for taking so long to express their sympathy, and said that it must have been a very hard trial.  Um. . .it IS a hard trial, not WAS!  Yes, it's been a month, but at the same time. . .it's only been a month!  I think we're still pretty fresh in the grieving process.  And I don't think the death of your child is something you ever "get over."  It's kind of a lifetime heaviness on the heart, and we just learn to cope and do the best we can until we can see her in heaven again.

Keep waiting for us, Aria.  We sure love you.

Miss You

I'm missing my little goose something fierce tonight, so I thought I'd post a picture.

I took this picture when Aria was 6 weeks old, six days before she died.  When she was about a month old her hair started to go curly like her brother's.  I just loved the way little strands of hair would curl up around her headbands (for example, see the curl at the nape of her neck, behind her ear.  so cute.) 

I'm missing that warm little body in my arms.  And giving her smoosh kisses on those chubby cheeks.  When I would do too many she would get a little annoyed and wrinkle her face up.  I miss those pointer fingers that never seemed willing to relax like the rest of them.  

These have been a couple of harder days.  Last week I actually had a few days where I felt guilty because I didn't feel like I was grieving ENOUGH - I felt like I was slipping back into a normal life routine too easily.  Then over the last couple days I've had the opposite problem - hurting so much that I don't know how life could ever be normal again.  I don't know if that's because her one month mark is in a couple days, or if this is just the natural ebb and flow of the grieving process.  Probably a combination of both.

Choices, choices

I've always been a perfectionist which leads to difficulty making decisions (because I stress like crazy over the stupidest little decisions because I want it to be just perfect) but it's definitely reached a new level since Aria's been born.  I just really can't make any decisions on my own anymore.  Everything that has involved Aria has taken three times as long as it would take me normally.  Deciding on what we would all wear for our family pictures in the NICU, for example.  Or planning the details of her memorial service, When we did our KSL news segment a few days ago, I had 2 hours notice before they arrived at our house - you can imagine what that did to me!  My sisters had to come over to help because I was incapable of picking an outfit and doing my own hair.  

Which leads to last night's hilarity.  So my go-to sources when I'm stressing out are my sisters because they can usually help me reach a decision quickly that I know I'll be happy with later.  So I went to Michael's Crafts to get some supplies for the thank-you rewards for our GoFundMe donors.  I only needed 3 specific items.  It took me 2 hours because I just wanted each individual product to be the most perfect version of itself that it could be.  Then I almost had a nervous breakdown because I couldn't choose which size hole punch to pick!! I literally just sat down on the floor, called my sisters, and let them talk me through the choice until I came to my senses and didn't feel like the world might end if I chose the wrong size.  I mentioned something about that to Kav and she was like "hmm, I wonder why.  It's not like you guys have recently been through a traumatic experience or anything."  Haha.  Good thing they are understanding of the current state of my mind and not annoyed.

Aria's nurses

(I know I've talked a little about Aria's nurses before, but in light of the scholarship and KSL article I wanted to go into more detail.  It's taken me a week to write this post - not because I don't know what to say, but because I have too MUCH to say!  I could write 10 pages and still not be able to convey to you how much we love these ladies.  We owe them everything.)

These are Aria's primary nurses. . .or her "other mommies," as I've referred to them before.  Because it's true.  They spent just as many hours with her as I did during her life.  Gave her just as many baths. . .maybe more.  They were able to help her in ways that I couldn't.  Most importantly, they loved her fiercely.  They both asked to be a primary nurse for her because they had fallen for her sweet little spirit.  This meant so much to us because we had decided not to request a primary nurse for Aria - we knew how bad her prognosis was, and thought it would be unfair to ask a nurse to take that on.  But for them to make the request, even knowing there was no happy ending - that meant the world to us.

I knew Makenzie first - she started getting assigned to Aria a lot when she was first born.  Since Aria required a private nurse the first 3 weeks, when we would visit her we spent a lot of time just chatting with the nurse on duty.  So we spent a lot of time talking to Makenzie before she volunteered to be one of Aria's primary nurses.  Whenever we wanted to hold Aria, the nurses would have to page the respiratory therapist first so they could come help with the breathing tube in the transfer from crib to arms - I'll always remember how Makenzie would always cheerfully page the RT and say "hey, I have a baby in bed 6 and a mom here who would loooove to hold her!"  When she found out we were doing family pictures and I mentioned I didn't know what to do for Aria since she wasn't tolerating clothes at that point, Makenzie was the one who brought up the idea of a cute diaper cover.  Then she went one step farther and had her sister make one for me!  I will treasure it always.  I was touched when Makenzie requested to be a primary because I know how much she likes to snuggle with her babies, but when babies are on breathing tubes like Aria was, the nurses aren't supposed to move them around to rock and snuggle them.  So I knew how much Makenzie was giving up in this request.   She was very approachable - I always felt like I could talk to her about stuff without her judging me or the decisions we had to consider.  I was always worried about Makenzie because she'd only been working there for a year and didn't have much experience with working with terminal babies like Aria.  In fact, Aria was her first primary to pass away.  I was worried it would be too hard on her.  But Makenzie really handled everything great, I was so impressed.

Jamie kind of came out of nowhere a few weeks into Aria's life, but I'm so glad she did!  We walked in one evening during shift change and she was updating the nurse who was going to be on duty that night.  She was just so sweet and kind.  We liked her immediately, which was good since within 5 minutes of meeting her she told us she had requested to be Aria's primary nurse!  We were surprised but happy - Jamie had only had Aria for one shift before falling for her and making the request.  We couldn't even be mad that the whole reason we had shown up when we did was to help with bath night, but Jamie had already bathed Aria earlier just because she loves giving babies baths!  So cute.  Because Jamie mostly works days, and Makenzie still works a lot of nights, we ended up seeing Jamie a ton that last month.  She was so good at remembering details about our lives and, having older children herself, was great about offering support and encouragement when I would fret about having to constantly decide between my children since I could rarely have them in the same room together.  I came to absolutely rely on Jamie those last 3 weeks of Aria's life when we were making the decision to move her onto hospice care.  I don't want to say too much about that here.  But I'll just say that thanks to her nursing experience she was able to help us prepare for our Care Conference and other interactions with the doctors much better than we would have been able to do on our own.  Jamie had a great way of soothing my own fears while at the same time gently educating me better on the realities of Aria's problems and the types of decisions we were starting to have to make for her.  She was right there with us the entire day that Aria passed away, and I honestly don't think I would have been able to do it without her.  She cried right alongside us, then felt bad because she had said she would be the strong one for us.  But honestly it meant so much more for me to see those tears because I knew her love and grief for Aria was real.  Over the last couple weeks Jamie continues to text and check on me, even though Aria is no longer in her care!  Talk about above and beyond.

Makenzie was on shift too the day Aria passed, taking care of a different baby, but rushed in as soon as she heard Aria had passed.  She went so suddenly none of us had a chance to say a real last goodbye, and instead had to settle for cuddling her sweet little body afterward.  When Mike and I left the NICU that day, I gave my precious baby a last kiss and handed her to Jamie. . .I had always said that when Aria passed I wouldn't be able to handle it if I had to give her to a random nurse on duty (as great as they all are) - I could only bear to leave her by knowing I was leaving her with someone who loved her nearly as much as I did.  Jamie and Makenzie both stayed late that day so they could take turns finally snuggling Aria and taking care of some other things for her.  That evening I texted Jamie to "check in" on Aria for the first time ever - during her life, while I would often call the hospital just for an update, I had never called while Jamie or Makenzie were on shift because I absolutely knew that she was being taken care of with them.  And I've texted with both of them several times since Aria passed - because truth is, I miss them!  They have become just a huge part of our lives and will forever be part of Aria's story.  I knew they were taking care of Aria, but what I didn't realize was how much they were also taking care of ME until I no longer could just walk into the NICU and talk to them.  

We sure love these two.  Thank you for loving our Aria!

Further from you

The more time passes, and the more things get back to "normal,"  the weirder I feel.  I just feel like every step toward normal is a step away from Aria.  Some of these steps happened before she had even passed.  Yet they're steps we have to take.

The first step was when I got my csection staples out.  Did you know that I didn't even get any new stretch marks from Aria, since she was delivered so early?  And my old set from Bennett is really quite faint by now, so I really don't mind them.  In a weird way, I'm glad I have a csection scar.  It's the only lasting physical mark I'll have from carrying her.

The next steps were my general recovery.  I had such a terrible pregnancy that even while I was in the hospital recovering I felt better than I had the entire pregnancy (csection pain aside, of course).  I remember eating dinner in my hospital bed, feeling so guilty for feeling so healthy finally while my baby girl was so sick in her own hospital bed an hour away.

We went back to work.  That was a huge step. . .it meant we weren't hiding at home together grieving anymore.  We had to get back out in the world where people expected things of us again.

The nursery. . .I set it up and had it painted the week before Aria was born.  It's going to have to come down eventually. . .we're going to have to sell all our baby gear eventually. . .but I haven't had the heart to do it yet.

My hair has already started the post-partum hair loss.  I was surprised because with Bennett I didn't start losing my hair until 3-4 months after birth.  So I chopped my hair off right away instead of waiting for it to get worse first.  While normally this wouldn't be a big deal, this means I can no longer sport what I've come to call "The Aria" hairstyle- twisted bangs and a fishtail, obviously not named for her hair but because it's the quick and easy hairstyle I've worn nearly every day since having her.  Never wore it like that before and now I can't do it anymore.  I know it sounds like such a silly little thing, but again it's just one more little thing that makes me feel like I'm being pulled further from her.

"The Aria"

As I've mentioned before, I'm not completely weaned from my milk supply yet.  While Aria was alive, she was only able to take a small amount of the milk I was pumping.  Really, I could have stopped pumping after 3 weeks and we would have never run out of her milk storage.  But even toward the end of her life, when we knew she wasn't going to live much longer, I was unwilling to start the weaning process because I just felt like that would be giving up on her.  Then when she passed, I decided to wait a week to start weaning so that I wasn't dealing with the initial grieving process and weaning hormones at the same time.  And now. . .I don't know.  I'm dragging my feet, for sure.  I'm weaning myself, just probably a lot slower than I need to.  It's just kind of nice that for right now, no matter how busy or distracted I am in the day, there are a few times that I am forced to put everything else aside for 20 minutes and just sit and pump and think about my baby.  Just like with a regular newborn, you know?

It's just that these are some of the last signs that I've just had a baby and once these are gone. . .life is too outwardly normal again.

My pregnancy with Aria

This blog has turned into so much more than just a way to keep others updated, especially now that Aria has passed.  It's turned into her baby book, my journal and memories of her.  So that is why posts have become more personal.  I'm trying to write down everything I remember and feel before I lose track of it all.  

As I've said several times before, Aria was a surprise pregnancy.  Michael had been open to the idea of having another baby for ages, but as the mama who actually takes care of the baby I wasn't quite there yet.  We knew we'd have another eventually, I just didn't feel ready yet.  

The timing of things was interesting.  I'm not quite sure what my problem was, but last fall I was just having a hard time dealing with life in general.  I even wrote a blog post about it (don't go looking, you won't find it) where I talked about how I felt selfish because I really had a pretty good life but still wasn't really happy.  It got bad enough that at the end of November I started taking Zoloft, which is an antidepressant.  I was on that once before, several years ago, and the symptoms were starting to feel familiar.  On top of this, I was ready to tell my work that I needed to take a break for a couple months to see if that would help.  However, before I said anything they actually called me to ask if I'd be able to work MORE in order help with some decisions they had made for the company (I'm an office manager).  I actually really love my job and I loved the direction they were taking so I said yes but wondered how I'd be able to balance everything, knowing I was committing to a few extra hours a week for the next several months.

When I first started getting sick at the beginning of December I actually thought it was just a side effect of the medication (and no, Aria's problems don't have anything to do with that, the doctors are 100% sure. I also stopped taking the medication the second I found out I was pregnant).  I wasn't even on the normal dosage of the medication yet, I was still on the starter dosage that you take the first few weeks.  I remember being a little concerned that even that tiny amount of medicine was making me sick.  I didn't even consider it could be pregnancy until one day when I suddenly realized my period was several days late.  Even then, it took me a few more days before I went and bought a pregnancy test.  I was convinced there was no way I was pregnant, and taking the test was more just to put my mind at ease.  So when the test came up positive, I was shocked. SHOCKED, I tell you!  In fact, I'll do one better, I'll show you:

This selfie, taken minutes after seeing the test, has been my secret shame for the past 9 months.  But now I gift it to you.  See the utter terror?  Also, that might be a tear in my eye.  Ha, yeah.  Also as a sidenote, this selfie makes Michael burst into laughter every time he sees it.

I was terrified!!  And quite honestly, not immediately thrilled.  Don't get me wrong, I knew I would love the baby, it's just that for someone like me who is such a planner, this kind of surprise really shakes things up.  And I was already feeling so overwhelmed by life, I didn't know how I was going to be able to handle this too.  Also to be fair, there were a couple HUGE reasons why this caught me so off guard.  The first was that it took us a couple years of fertility treatments to get Bennett.  So to get pregnant without trying, while terribly cliche, was shocking.  The second reason was that I still, to this day, have NO IDEA how I got pregnant.  The dates just do not make any sense.  So with these 2 huge reasons for why I shouldn't have been pregnant - well now you can see a little better why we've believed so strongly right from the beginning that there was something special about this baby, a special plan that God had for us.  I'm so glad it happened this way actually - having that mindset right from the beginning, before we knew anything was wrong, is what has made everything a little easier to accept.  Although it's still devastating of course.

I took the pregnancy test while a huge snowstorm was raging outside, a little before Mike was due home from work.  I was so shocked at the result that I did the only thing that made any sense to me at the moment - I turned on a movie for Bennett, and went outside to shovel the driveway so Mike could pull in okay when he got home.  It took nearly an hour, and I spent the whole time in mental conversation with God, basically just bewildered by what was going on.  I remember telling Him that I knew that this baby was meant for us and that He must have a special plan for it.  Over and over, I prayed for God to help me handle everything "with grace."  I remember that specifically, and it's been interesting to see how often that word - grace - has come up since Aria's birth, by so many different people, and in reference to either me or her.  I definitely think that is one of the grand recurring themes of her life.  

As a sidenote, I also remember dimly wondering if I should be shoveling so much snow while pregnant :)

I didn't tell Michael I was pregnant when he got home.  Actually, I didn't tell him for a couple weeks.  I was just so surprised!  I needed time to absorb the news before I shared it.  Then, I thought it would be fun to wait and surprise him with that on Christmas.  We never made it that far though - I ended up having to spill the beans a few days before Christmas because I had been sooooo sick for so long and Michael was threatening to take me to Instacare.  I kept telling him the doctors couldn't help me and he didn't understand why and wouldn't drop it until I finally revealed what was going on.

My first pregnancy with Bennett was very tolerable - I was sick of course, but it was all pretty manageable and I actually felt super healthy the last half of the pregnancy.  I always looked back on that pregnancy fondly.  I was so much sicker with this pregnancy, more than I ever knew was possible, which led nearly every single person I knew to predict that it must be a girl (and of course, they were right).  I told Michael several times that this would be our last baby because there was no way I could ever be this sick again.  I never missed a day of work when I was pregnant with Bennett, but with Aria I ended up giving away all my regular work shifts and could barely drag myself to the trainings I had to be at.  I basically lived in the bathroom for the first 4 months because I could barely even open my mouth without throwing up.  Poor Bennett - I have no idea how he made it through that.  While I had never let him watch much tv before, now he basically watched movies all day while I laid on the couch next to him with a bucket.  I had Zofran prescribed to me but the side effects were almost worse than the vomiting so I didn't take it much.

In the middle of all this, we decided to move!  We had been toying around with the idea for about a year but finally made it official. We lived in a townhouse in Spanish Fork, but I knew that wasn't going to work anymore. We (I) needed a fenced-in yard where Bennett and the puppies could play without me having to be holding onto leashes or watching them every single second, and since our townhouse faced onto the main street in the community I knew I couldn't handle a newborn while still keeping the other littles adequately entertained, especially in the winter.  Plus Mike was currently spending about an hour driving EACH way to work and back and I knew that with a newborn in the house we needed to do better than that!

Life was crazy, and quite crappy, that winter.  Finally though, the beginning of March came and everything suddenly got a bit better.  We moved into our house.  Bennett and the pups LOVED the yard and seeing them so happy made it all worth it.  Mike's commute to Cottonwood Heights was cut in half.  I hit the halfway point of the pregnancy and FINALLY stopped throwing up every day.  Work was still crazy busy, but I was feeling well enough to take back my normal work shifts even.  We had our 20 week ultrasound and everything looked good with the baby.  We decided not to find out the gender this time around.  

The excessive sickness the first 19 weeks didn't exactly help endear me to this surprise pregnancy, but once I started feeling better that changed.  In fact, I remember exactly when it changed.  We were watching tv and there was one of those sappy commercial for Johnson & Johnson or something with a lot of tiny newborn babies.  I suddenly started thinking about how heavenly it was to snuggle Bennett when he was newborn, and how little and warm new babies are, and how they just fit so perfectly on your chest. . .and I thought maybe it wouldn't be so bad to have a little baby to snuggle again.  Plus I was starting to feel the baby move and that's one of my favorite parts of pregnancy.

From weeks 16-25, once I started feeling Aria move, I only felt her once a day, if that.  It was always around 10 or 11pm and literally only for a couple minutes.  It was so unusual because when I was pregnant with Bennett he was much more active and I'd feel him at regular intervals throughout the day.  I just figured every pregnancy was different and that as long as I was feeling movement at all things were okay. . .or maybe the baby was just in a position that didn't allow me to feel it moving as much or something.  As time went on though I started to get nervous.  Finally around 25 weeks she started moving more.  She only moved a little bit during the day, but as soon as I laid down to go to sleep she would be pretty active.  And strong!

Although the constant vomiting finally went away halfway through the pregnancy, I started having other problems.  I was so tired all the time.  I blamed that on the fact that I was HUGE - I already weighed as much as I did the day I delivered Bennett!  Since I hadn't been able to keep food down in 4 months which you would think it would tip the scale the other way.  My doctor thought I probably had gestational diabetes but when that testing came back negative we chalked it up to normal second pregnancy excessive weight gain.  Looking back now though I wonder if there wasn't more to it.  I also had horrible ligament pain that made it nearly impossible to sleep.  I was only comfortable sleeping on my back, which is a big no-no after the halfway point.  There were a few other things too but I'm going to stop with the details.  Let's just say I was crying daily not from hormones but because I felt so physically miserable all the time.  I was excited for the baby, but was counting down the days until I wasn't pregnant anymore.

Unfortunately, as you know, that came so much sooner than we expected.  Aria was delivered on a Monday.  The Thursday before that, things took a turn for the worse in my pregnancy.  I don't know how to describe it other than to say that my body just gave out.  Simple things like getting up and down from a chair were exhausting.  I worked on Thursday then came home and just crashed on the couch while Mike took care of Bennett.  Friday morning I only worked for a couple hours then came home - same thing.  Saturday and Sunday I literally was only awake for a few hours total each day, I mostly slept.  I literally couldn't keep my eyes open at times.  I was too tired to decide if I should be worried or not.  I had been busier than usual the last month so I thought maybe I was just overdoing it and my body was trying to catch up now.  I remember telling Michael that I really didn't think I could do this for another 6 weeks and him telling me that I didn't really have a choice.

Monday morning was my doctor's appointment, and you know the rest of the story from there.  (If you don't know, click here to read details about the day she was born and the events leading up to the decision to do an emergency csection)  The day after Aria was born, I felt so much healthier than I had at any point in the pregnancy, even though I was still bedridden and in pain from the csection.  That first week, the more we learned about all of her problems, the more things in my pregnancy made sense.  For example, because of her skeletal problems, she wasn't positioned properly in my belly which probably accounted for a lot of my ligament and hip problems.  Aria required life support right away, and even with that still struggled immensely.  I really believe that those last few days of being pregnant, my body shut down because it was working too hard to be her life support - it was doing 100% of the work for her of just being alive, where other babies by this late in the pregnancy had a pretty good grasp on that.  If my doctor hadn't gone with his instincts and did the csection, there's a good chance that Aria would have passed away in utero.  I hadn't been exaggerating how I was feeling when I had told Michael that I didn't think I could make it another six weeks.

Looking back, I can't deny that this pregnancy was legitimately a huge trial for me physically. What I do regret though is how much I complained along the way.  If I had known that the pregnancy would make up over half of my time with her on this earth, I would have accepted it much more readily and cherished the good parts so much more.

The Bennett Factor

I haven't talked too much about how Bennett is handling everything, so I thought I'd talk about that a little bit.  (update: ha! I didn't realize the novel I had written until I finished!  Sorry!)

Bennett's always been an independent, well-adjusted toddler, but right after Aria was born he developed some severe abandonment issues.  It's hardly surprising.  The day Aria was born, I dropped him off at my mom's and said "I'm just going to the doctor, I'll see you in an hour!"  Then both Mike and I basically disappeared for 4 days (me in recovery from the emergency csection, and Mike just bounced back and forth between my hospital and Aria's).  While my two sisters (who Bennett adores) were able to step in while we were gone, it wasn't consistent care since they had to keep trading off due to work and stuff.  Plus I hadn't had time to go through Bennett's schedules and routines with them, so while they did a great job, Bennett definitely felt the change.  Starting on Day 2, they would bring him to see me once a day.  But I was mostly bedridden so he would get bored after an hour or so and they'd take him home.  It was so sad to see him get a little worse each day.  

Finally I was discharged and Mike took me home only long enough to pick up Bennett.  Bennett was so giddy to have us at home again! We took him with us so I could finally meet Aria.  All was well until nighttime.  Suddenly my happy boy turned into a terrified, clingy, crying boy.  He refused to lose sight of us.  Finally Mike just took him to our bed and let him fall asleep in his arms.  But every time Mike started to move, Bennett would wake up and start screaming.  So Mike spent the whole night holding Bennett tight.

The next day was the same.  Bennett happily followed us around all day, but then when we had to go to the hospital without him he just melted into a puddle.  I tried and tried to reason with him but after half an hour finally had to just walk out the door while my in-laws held him screaming.  Any mama knows how awful that is to leave your child when they're sad.  I cried the whole way to the hospital.  I remember telling Michael that both my children really needed me but there was literally nothing I could do to fully give either of them what they needed.  It made me feel like such a failure.  Again that night Bennett screamed the second we tried to take him to his bed, so he spent another night in ours.

My third day home things finally started to improve.  It was a Sunday, so we could spend the entire day with Bennett and took him to the hospital with us.  That night I finally convinced Bennett to sleep in his bed!  Although he did get up several times during the night and I had to keep tucking him back in.

Things have continued to improve since then.  Aria was probably 3 weeks old before Bennett wouldn't have a meltdown when we tried to leave him with a babysitter - but we slowly could start leaving him with close family, then close friends, then finally new friends.  And the whole time Aria was alive we couldn't ever tell him that we were leaving him to go to the hospital, because he associated that with being abandoned and would freak out.  But if we lied and told him we were going to work then he was fine - he knew and was familiar with the idea of work and knew we always came home after work.  I felt bad lying to him but it was better for his peace of mind and allowed us to leave him happy instead of screaming.

Sleep-wise, Bennett hasn't had to START any more nights in our bed. He always falls asleep like normal in his own bed, but he sure wakes up in the night a lot more than he used to.  While Aria was alive I could just take him potty then tuck him back in and he'd go back to sleep.  After Aria died though he has snuck into our bed during the night at least 30% of the time.  So even though he didn't lose his parents when she died, the way he did when she was born, we know that her death has definitely had an impact of some kind on him because we can see subtle differences like that.  It's just such a change still because pre-Aria Bennett always slept in his own bed and always slept through the night.  During the days now though he seems pretty much back to his pre-Aria self, independent and well-adjusted.

Bennett doesn't talk about Aria much these days.  We know that he sure loved her.  He didn't care for her much when she was first born and just asleep all the time.  When she was almost a month old though she started to open her eyes a lot and be awake more and that's what made all the difference.  Bennett would go into the NICU and immediately hop up on a chair and start talking to her, and she'd always open her eyes for him which delighted him greatly.  Several times he would eagerly offer her a little toy or headband or some other trinket we had brought that previous to that moment he had sworn he wanted to keep for himself.

It's hard to know what his understanding of things are.  After all, he's never encountered death before.  He will repeat things we've told him before, like that she lives with Heavenly Father now instead of at the hospital, but he's little enough that he doesn't have a great understanding of what that means I think.  A few weeks ago, we had a counseling session with Child Life Therapy so that we could figure out how to prep him for Aria to pass.  In the days after she died we tried talking to him a few times about her but he would clam right up.  So we learned it was better just to mention her in casual conversation instead of turning it into a big thing.  He does still always bless her in his prayers, and is VERY possessive of her picture (from the funeral program) and the couple of stuffed animals we had for her.  He makes sure to keep them safe and doesn't let any other kids play with them.  

A couple days ago was the first time he really brought her up on his own.  We were just driving home from the store talking about other things, and out of nowhere he said something like "but did you know that Aria's doctors couldn't fix her so now she lives with Heavenly Father?"  I was surprised but tried to stay casual and said "that's right - only Heavenly Father could fix her so now she lives with Heavenly Father and she's all better."  He immediately said "no! I don't want her to be all better!"  I asked him why, and he said "I just want her to be sick with the doctors."  I was confused but mulled over this for a moment, then hit with inspiration asked him, "do you want her to be with the doctors so that we can see her again?" and he said "yes I want to see her!"  I, of course, immediately began to cry so I pulled over.  I unbuckled so that I could turn around better and said "Bennett, I want to see Aria again too.  I want you to know that I love Aria and I miss her very much, and it makes me sad that we can't see her anymore.  It's okay if you're sad too."  He was shocked to see the tears on my face and said "no mommy don't be sad!"  I tried to tell him that it's okay to be sad about Aria, but he wasn't sure what to think of that idea.

We try to keep Aria as much a part of our lives as we can with Bennett.  I just want to make sure that as time goes on, Bennett is ALWAYS aware of the fact that he has a baby sister that we love and that he will see again someday, even if he doesn't remember her (which is very possible given his age, which is the part that makes me saddest of all).  I've gotten in the habit of mentioning her several times a day in the course of casual conversation, both with Bennett and with others because I want everyone (not just Bennett) to feel like it's okay to still talk about her.  I do a lot better at this than Michael does but we are grieving differently and that's ok too.  

IT'S READY!

The Aria Rutkowski Nursing Scholarship is here! If you feel so inspired, please SHARE this link with others so that we can get the word out about how our little Aria is leaving her mark on this world!

Please check out more details at http://www.gofundme.com/arianursingscholarship. During Baby Aria's life many people offered to send us flowers or money to help with medical bills, and we asked that people instead contribute to this scholarship fund once we were ready to get it going. If you're able, please contribute and share with your friends and family here on Facebook and Twitter (@AriaScholarship). For those who are new to Aria's story, you can check out her Facebook page (www.facebook.com/babyarialynn) or her Blog (www.arialynnrutkowski.blogspot.com) to learn more about this amazing little girl. Thanks again for all of your love and support.

NICU hairband donation

I wanted to do something at Aria's funeral that would really stand out.  Something beyond the normal musical numbers and balloon releases.  I just didn't know what. . .

A few days before Aria passed away, a friend brought over a handful of gift bags that she had gathered from some of our mutual friends.  Each one contained a little hair bow or head band.  She explained that they all wanted to do something to help, and had thought of giving me some hair things for Aria.  They knew that since she wasn't able to wear clothes, I tried to always keep something in her hair instead.  She told me that I could pick my favorites and donate the rest to the NICU.  I was so touched.

That memory came to me the afternoon Aria passed, as I sat caressing her lush dark locks for the last time.  My mind started to wander.  I had seen the hospital's collection of hair things, and wasn't super impressed.  The hair clips all were so big and had a hard time staying in Aria's hair.  If Aria's thick hair couldn't keep a clip in, what hope did a baby with normal hair have?  I don't think there were even any headbands in the collection and I much preferred those to the clips since they were softer on her head.  Plus, the hospital is not allowed to reuse any of the hair things once they have touched a baby's head.  I comforted myself with the thought that I could at least help a couple of the babies by donating the hair things Aria hadn't had a chance to wear.

Then, it struck me.  Why stop there?  Startled by that sudden thought, I asked Aria's nurse what the NICU's hair bow collection was like and she answered "minimal."  I asked her and Michael what they thought about the idea of asking for hair bow donations at Aria's funeral as a tribute to her, and they both were excited about the idea.  So when we announced the details of Aria's memorial service, we included a plea to bring hair things to donate in lieu of flowers or cards.  I emphasized the need for headbands in particular since not all the babies there are born with a head of hair like my Aria :)  

On the day of the service, we set up a donation basket at the sign-in table, not quite sure what to expect.  But boy did people deliver!  The basket was overflowing!  I am just so incredibly touched by the response we received to this request as part of Aria's legacy.

In the days following the service, a few more donations trickled in.  My SIL and I spent a couple hours one day removing all the packaging, then measuring all the headbands and sorting them into gallon bags so that they were all organized nicely for the hospital.  At final count, we had 224 headbands!!  Plus probably around 100 little clips.  Some of the hair things were too big to try to donate to NICU babies, but we just put those all into a bag to donate to the pediatric ward instead.  There were so many cute things that little girls or even teenage girls would love to get during their hospital stay.

Yesterday we made the trek up to the hospital to drop off the hair things.  We hadn't been there since the day Aria passed away 2 weeks before, so we were a little nervous to go.  It was actually a great visit though, and there was a lot of NICU staff that recognized us and came over to catch up.  One of the older nurses started crying when she heard about what we had done at the funeral with the hair things!  She kept telling me how much that meant to them, and also what a beautiful tribute that was to Aria.  Our primary nurses were both there and were excited to dig in to the stash as well.  All in all a great visit.

THANK YOU to anyone who helped donate toward this project!  It is something I want to do again in the future, once I hear the stash is running low again.  I wish there was a better way for me to convey to you all how much all of this has meant - both to us, and to the hospital moms.  There are going to be a lot of happy mommies!  Life in the NICU is just so, so hard.  Anything that can make it a little happier is just a lifesaver.  I only wish I could see pictures of all those cute NICU babies in their stylish headbands!