diy-disney-villain-footprint-art-15
Image

You can’t have princesses without some villains!

So awhile back J and I made all 13 Disney princesses from her footprint (you can read all about them here).  disney-princess-footprint-craft-finishedShe immediately asked if we could also make all of the villains and princes from each story, but I vetoed her.  It took like 10 seconds of her time for this project, while I had to paint all of the hair and embellishments.  And since I majorly procrastinated doing that this project actually took a few weeks to complete.

Fast forward a few months and we were predicted to get several inches of snow in southern VA.  I remember when 4 inches fell down here last winter school shut down for a week and a half so I wanted to be prepared just in case.  I figured making the villains was an easy project that would make her happy and kill some time.  I picked up a piece of poster board and we were ready!  And thank goodness I did.  We ended up getting about a foot of snow and school was out for 6 days.  Projects were a necessity.

Last time I pretty much copied the princesses from a tutorial but this one was a bit more unique so I made them all up.  I googled each villain before painting her foot so I knew exactly what they were wearing.  I painted her foot, keeping the right side for all of the villains wearing black (which was about half) and the other side for any other colors. diy-disney-villain-footprint-art-17It turned out that I was out of red, which at the time I didn’t think was such a big deal.  I had no idea how many villains wear red!  I ended up just using a glitter paint that was sort of red and sort of pink and called it a day.  They don’t need to be perfect.

I pushed her foot down on the posterboard for each villain.  diy-disney-villain-footprint-art-18Let’s see if I can remember who’s who.  Starting at the top left it goes:  Ursula, Evil Queen, Lady Tremaine, Mother Gothel, Maleficent, Hans, Gaston, mess-up, mess-up, the bad guy from Tiana whose name I still don’t know (she doesn’t like that movie so I’ve only seen it once, haha), Shan Yu, Governor Ratcliffe, Jafar and Mordu.

The following day we embellished them.  I did the hair and crowns while she added anything that was needed onto the clothing.  Last time I didn’t let her help (not really sure why…) but this time she begged me to.  She did a great job! diy-disney-villain-footprint-art-19Then I cut around them with speciality scissors and used a hole punch for holes in the tops and bottoms of each person.  She divided them into 3 piles of 4, put them in the order she wanted them and picked out ribbon for each strand.  I weaved the ribbon through the hole, connecting the four villains together.  Here they are individually.

diy-disney-villain-footprint-art-2

Jafar

diy-disney-villain-footprint-art-3

Shan Yu

diy-disney-villain-footprint-art-4

Gaston

diy-disney-villain-footprint-art-5

Mother Gothel

diy-disney-villain-footprint-art-6

Ursula

diy-disney-villain-footprint-art-7

Govenor Ratcliffe. Who, in retrospect, should’ve been a lot fatter.

diy-disney-villain-footprint-art-9

Evil Queen

diy-disney-villain-footprint-art-10

Lady Tremaine

diy-disney-villain-footprint-art-11

Hans. Those are supposed to be sideburns but didn’t turn out so well, haha.

diy-disney-villain-footprint-art-12

Mordu

diy-disney-villain-footprint-art-1

Malificent

I cut another piece and made a loop to hang them up and voila, finished! diy-disney-villain-footprint-art-16 diy-disney-villain-footprint-art-14 diy-disney-villain-footprint-art-13We hung them up in between the princesses in her room.diy-disney-villain-footprint-art-15She hasn’t asked about the princes yet, but I’m sure it’s coming.  Next time there’s a snowstorm we’ll work on those guys 😉

Firsts.

We’re camping. We’re not religious people so Easter obviously isn’t a big deal in our household. Weather permitting, I’d like to make it a family tradition to go camping every Easter weekend. This weekend we’re at a Jellystone in Natural Bridge with plans to hit up some caverns and a drive through safari.

Right now I’m laying in the top bunk next to C, waiting for him to fall asleep. Normally that’s not something I do (lay with him, that is), but not only is this his first time sleeping in the camper since the fall but he’s also still sick. So I figured I’d be a nice mother for once and not traumatize him by leaving him alone in a strange place like I usually do.

Laying next to him with one arm slung over his chest, watching his eyelids slowly drop and then rapidly fly open over and over again, idly thinking of ways to toddler-proof the top bunk so he doesn’t break his neck, tears suddenly started streaming down my cheeks as a thought struck me: this isn’t right. I should be lying up here with a child right now, but not this one. The last time we went camping we hatched out a plan for the following spring/summer:  J would sleep on the pullout couch, C would be in the bottom bunk and I would sleep in the top bunk with Zoe. That way I’d be right there to feed her the eight billion times a night she required while not disturbing everyone else (or at least as little as possible in a camper).

I think subconsciously I knew something wasn’t right. I noticed on the drive out here that I was starting to feel depressed and tired. I just chalked it up to not having slept well for the last week due to two sick children, combined with listening to C cry and whine for the last hour in the car. And then once we got here everything was forgotten as I rushed around trying to get everything unpacked and dinner made before bed. It wasn’t until I stopped moving and my brain started wandering that my subconscious let the rest of me in on its little secret–this is bullshit. Everything is bullshit.

It’s these times that are the hardest. The “first” milestones. The first minute, first hour, first day, first week, first month.  First story time. First time back at the gym. First time seeing someone who knew I was pregnant. And then the firsts I hadn’t considered:  the first drive in a new vehicle and the first camping trip. It makes me wonder how many millions of firsts are going to catch me off guard like this in the future. How I’ll never be prepared for all of them. How it doesn’t matter how well it seems that I’m doing; I’ll never fully be over her death. How it doesn’t matter how many times I repeat “it is what it is” to myself–it still doesn’t make it right. It still hurts. I still don’t want to accept it. I shouldn’t have to accept it. Everything is bullshit.

I hate nighttime. When everything else shuts down except my brain, which never stops. Never gives me a moment of peace. It doesn’t matter how good of a day I had; it all turns to shit when it’s time to go to sleep.

I’m not going to let this ruin our weekend. Tomorrow is a new day and it’s going to be a great one. It may not be complete or what it should be, but it is what it is. And we’re going to make it as good as it can be.

Until it’s time to go to sleep tomorrow.

Rambling.

I’m totally rambling in this post.  I really have nothing of substance to say.  I usually start thinking about my posts and what exactly I want to get across days before I actually sit down and write it.  Not so with this one–I actually didn’t even think about it at all until I sat down at the computer and started typing.  And it shows, haha.

One month and 60 minutes ago.  It’s strange because part of me can’t believe it’s been that long, while part of me feels like it was light years ago.  Honestly it kind of feels like none of it was real.  Not that I’m forgetting her but enough time is starting to pass where I’m not constantly thinking “this isn’t how it should be”.  Everything is starting to feel normal again.  And I don’t know how I feel about that.  Not that I want to continue to grieve and think of her at all waking hours, but at the same time I don’t want to forget her.  To forget her brief existence.  I think I’m starting to heal…I just don’t know if I’m ready for that.  It doesn’t seem long enough.

The kids have been sick with some form of the flu for the last four days.  Today I felt very run down, barely able to keep my eyes open, dizzy and with a slightly sore throat.  Honestly though I’m not sure if I’m catching what they have or if I was having some kind of physical reaction to today.  I  felt fine mentally, so maybe it’s my body’s way of coping.  Either that or I’m starting to have a physical reaction to the 55 episodes of Jake and the Neverland Pirates we’ve watched the last four days.  Somebody shoot me.  Please.  But maybe I feel fine because I’ve been preoccupied with sick kids.  That once J returns to school and it’s just C and I chilling and not zoning out in front of the TV all day all of the thoughts will come back again.

Today I finally got around to calling Decedent Affairs at UVA to get a progress report on the autopsy.  The doctors told us it would take “weeks” to come back and since it’s now been 4 weeks I wanted to know how much longer we had to wait.  Just a ballpark.  Turns out they grossly underestimated the timeline–the guy who answered the phone said it’ll be 60-90 days.  I’d definitely consider that months, not weeks.  I just hope that this isn’t something we have to worry about with future children, especially since we’ve started trying again.  Which the thought of being pregnant all over again makes me nauseous.  I wish we could just fast forward and already have a baby.  Oh wait, that’s because we should already have a baby.

We also bought a car today.  A brand new 2015 Nissan Armada.  Which I’m actually not all that excited about.  I’ve noticed that’s been one of the side effects since Zoe’s death.  I have zero interest in anything.  I can’t get up enough interest in anything to actually care about it.  Although honestly that’s how I felt my entire pregnancy.  And that’s very unlike me–I’m usually ridiculously excited over the smallest stuff.  And the being super pumped about the new car is especially odd.  I’ve been begging Jeff for a large SUV ever since we purchased my stupid Jetta station wagon nearly two years ago.  All I did was bug him about when we can get another car and how that one’s too small and I hate it…blah blah blah.  But I ended up being the holdout on whether or not to purchase this one.  And really I think it’s because it felt wrong.  An 8 seater SUV seems like overkill for the 2 kids we have.  It just doesn’t feel right having this vehicle and not having Zoe.  She was the whole reason we needed a bigger vehicle and now she’s not even here to sit in it.

Don’t get me wrong, I love it.  It’s a terrific vehicle.  We got an excellent deal.  I just hope that the depression I feel when I sit in it doesn’t last long.  I don’t even know how exactly to describe or explain what I’m feeling.  All I can say is that it just feels wrong.  And I feel like that’s just a preview of what moving to Leavenworth is going to be like.  That it’s going to be a what-if game.  What if she hadn’t died…  Which house would we be living in instead?  Who would our neighbors be?  How would things be different?   But I guess that’s life now.  No matter what, it will always be “What if?”

Okay I’m done rambling for now.  Peace out home slice.  Yeah, I’m in a really odd mood.

Give me your baby.

Let me preface this post by saying that I wrote the majority of this last Thursday.  This is what kicked off my 3 day depression bender.

I should’ve known it was going to be a bad day when I started tearing up on the drive to the commissary.  As usual I had no idea why; I just randomly felt like crying.  After a quick trip (in and out in 35 minutes…new personal record!) we headed to library for story time.  The first half went great.  And then out of the corner of my eye I caught sight of a teeny tiny baby.  I had spoken to the mother four or five weeks ago–at my last story time before having Zoe.  We didn’t chat for long last time but I had remembered the conversation and was keeping an eye out for her because she wasn’t at story time the last two weeks, when everybody else found out about Zoe.  At the time I had only been wondering if she was going to remember that I was pregnant and then I was going to have to go through the whole thing again with her.  Apparently I had completely blocked out the knowledge that she was also very pregnant.  It never even occurred to me that she might have her own teeny tiny baby with her.

She also has toddler, a boy about two months older than C.  Her husband is also stationed at Fort Lee.  She also had a baby girl, a teeny tiny girl with lots of dark hair, just like Zoe’s.  She looked to be about 2 weeks old.  She was wearing a headband with a huge flower on it, just like Zoe would have been wearing that morning.  She was sleeping in a carrier on her mom’s chest, just like Zoe would have been.  Her mom took both of them to the park right next to the library to play after story time, just like we would have done.  She pulled the baby out at one point to breastfeed her on the bench while keeping an eye on her 2 year old, occasionally hollering “Be careful!” and “I’m almost finished and then I can come over!”, just like I would have been doing.  She was me.  She was doing everything exactly the same as I would have been doing that Thursday morning.  Except she has her baby and I don’t.

This time there wasn’t a husband around to watch C while I went outside and cried in the car.  I held it together as best as I could. For the last 15 minutes of story time I kept on needing to stop singing the songs, close my eyes, take a deep breath and swallow the tears.  I tried my hardest to think about something else, anything else, but it wasn’t working.  So instead I concentrated on not losing it.  And I was successful.

People keep on telling me how strong I am for getting through this and for the most part I think it’s a crock of shit.  As I’ve recently learned, 1 in 4 women experience the death of a baby, be it through miscarriage, stillborn or neonatal death.  It doesn’t take a special kind of person to get through this situation; anyone can force themselves to do it, to go on breathing and living.  You just do.  But sitting there in that library, trying my best to avoid looking at that baby girl, trying my best not to cry, trying my best to sing the songs and interact with C and managing to succeed–now that I will give myself props for.  Because I could’ve gotten up and left.  And I could never go back to story time again.  That’s how some people would choose to handle the situation, and there’s absolutely nothing wrong with that.  But that’s not who I am.  I’m stronger than that.  I have to be.  Otherwise I’m never going to be able to leave the house.

After C got his stamp we beelined for outside.  I heard the mother tell her son that they were going to look at books, so I knew I would be safe for a little bit at least.  I kept one eye on the library door the entire time, watching for her to come out, waiting to see if she was going to go home or come to the park.  About a half hour later I saw them coming, the boy in the stroller and the baby strapped to her chest (finally, one difference!  I wouldn’t have had C in the stroller).  They were heading for the park.  I panicked, unsure what to do.  Part of me was dreading her coming up and talking to me, but part of me wanted her to.  I wanted to see her baby up close.  See her full head of hair.  Look at her teeny tiny finger nails.  See what color her eyes are.  Hear her cry.  Find out exactly how old she is.  I wanted to tell her what happened and beg her to hold her baby.  To hold her upright in the kangaroo hold.  Smell her intoxicating baby smell.  Hug her.  Cuddle her.  Kiss her soft head.  Do everything that I never got a chance to do with Zoe.

But I don’t know this woman.  She obviously didn’t remember me.  I had only seen her one other time before and we spoke for less than 5 minutes.  And like I said in an earlier post, I’ve lost damn near all of my baby weight, so I think that combined with the fact that I don’t have a newborn with me means most people who met me in passing don’t put together that I was about to have a baby last time we spoke.  Having a conversation with her about my baby who died would make her very uncomfortable.  And who knows what she’s like about strangers touching her baby, let alone asking to hold it.  And it’s not like I would be able to keep it together; if I did get a chance to hold her, I’d be bubbling like…well, like a baby.  I can picture it–shaking uncontrollably, the tears streaming down my face, the snot dripping down onto her head.  A new mother’s worst nightmare, even for one as laid back as I am about germs.

And I also couldn’t say with 100% certainty that I wouldn’t get ahold of that baby and then run for dear life.  I now understand fully why people steal babies.  All I want is a baby.  More than anything else I have ever wanted.  And while the normal, sane part of me realizes that it wouldn’t be the same, that no baby is going to replace Zoe or help my grief (no matter how much J thinks it will), the grief-stricken mother in me just wants a baby.  Any baby.

We stayed at the park for another half hour after the baby got there.  I couldn’t help but stare at them the entire time.  I went through a wide range of emotions.  Jealousy–why did she get to keep her baby and I had to lose mine?  Longing–look at what I missing.  Bitchiness is the best I can think to call this one–judging her for how she parented, for how she looked (trying to make myself feel better about my situation).  I didn’t want to stay and watch, but at the same time I couldn’t make myself leave.  This was my chance to see a baby Zoe’s size, to close my eyes and pretend that was me at the park, not her.  To watch the baby and see exactly what she was doing and wonder if Zoe would be doing the same thing.  Not only do I now understand why people steal babies, but I also understand why grieving parents watch other people’s kids so closely.  They’re living vicariously through you.

I waited until I heard her tell her son it was time to go before we left.  After I strapped C in his seat I sat in the drivers seat and cried and cried and cried.  Which was even less helpful than usual because C thought this was hysterical.  His bubbles of laughter kept on interrupting my sobbing and I vacillated between laughing and crying.  Once I was finally ready to go I realized that she had parked next to me.  She was putting her son in the car on the side next to C and since the door was open I couldn’t leave.  Not that I was in any condition to drive at that moment anyway–seeing them again had started a whole new bout of tears.  And then I was worried that she was going to see me crying and ask if I was okay.  Which made me cry even harder because no, I was most definitely not okay.  And will never be completely okay again.

All I can hope is that as Zoe would be getting older and older it’ll make identifying children the same age as her more difficult.  That and there are going to be more of them.  Seeing a brand new baby like that in public is pretty rare; people are so paranoid about taking new babies out into the world.  But you can’t go anywhere without seeing a ton of 6 month olds or 2 year olds or 5 year olds, etc.  Especially around an Army post; we breed kids like there’s no tomorrow.  So at some point seeing a child Zoe’s age isn’t going to tear me apart at the seams. At some point I’m going to become immune to it.  The wound won’t be fresh; I won’t think of Zoe every waking moment of every day.  And that terrifies me more than the all-encompassing grief does.


So it’s now today.  I went back to story time; I had never even considered not going.  I was relieved when we showed up and the mother wasn’t there with her teeny tiny baby.  But, just like last week, they showed up about halfway through.  Just like last week, we went outside straight away after story time and they joined everyone else about 30 minutes later.  This time, however, I was able to keep it together.  I debated over and over whether I should go up and talk to her.  It wasn’t until she placed the baby back in the stroller and I thought she was going to leave that I had a moment of pure panic.  I wanted–no, needed–to talk to her.  To know how old her baby is and to see her up close.  Fortunately it turned out she was just laying her down for a nap, not going anyway.

I took a deep breath, drank some water and walked over.  I smiled and asked her how old the baby is (two and a half weeks.  Exactly two weeks older than Zoe).  What her name is (Audrey).  Told her she was absolutely gorgeous.  Asked how Dominic, her two year old, is handling the transition (surprisingly well).  Where she delivered (St. Francis, the same as me).  What OB she used (St Francis Midwives, same as me.  Except she had used the midwives, not the doctors).  If she’s an easy baby (so far so good).  About her delivery.

The whole time I wanted to tell her about Zoe.  To tell her that I had also delivered there; that I had also gone to that doctor’s office.  To tell her my birth story after she finished telling me Audrey’s.  To tell her that I had had a baby girl and she died.  And I missed her.  But how do you do that?  And, even more so, how do you do that to a new mother?  A stranger nonetheless.  This woman doesn’t want to hear my sad depressing story.  And I don’t want to make her feel bad for me.  But at the same time the conversation just seemed so superficial.  I mean, even if Zoe was here and we were talking about all of the things we had in common it would still be superficial.  Sure, I’ll see her at story time next week and the next week, but we’re moving soon.  I’m not looking to make friends right now.  But I felt like I couldn’t be myself.  Like I was lying.  Like I was betraying Zoe.  I just kept hoping and waiting for an opening.  For a moment I thought I had one.  She asked me, “Don’t you have another child?”  I froze.  Was she asking me about Zoe?  And then I remembered that the time I had met her pre-Zoe it was an inservice day and I had J with me at story time.  And then I debated for a split second about mentioning both children.  But I didn’t.  Then we got to talking about the age difference between J and C and her two little ones and the pros and cons.  So then I was hoping she would ask me if we were planning on having any more children.  We even stayed at the park about 15 minutes longer than usual, hoping I could talk somehow work Zoe into the conversation.  But I never did.

I think my obsessive need to talk to this random woman all stemmed from a realization I had last Friday while walking the dog.  I started off thinking about how I can’t wait to move to a place where no one knew that I was pregnant.  Where I don’t have to fear being stopped at the gym or on the street or at the grocery store with the question, “Weren’t you that pregnant lady?  How’s the baby?!”.  And then it hit me–no one’s going to know that I was pregnant.  Which means no one’s going to know that I had a baby named Zoe and she died.  I won’t have any friends to talk about it with in person.  I mean, when’s an appropriate time to tell a new friend that?  How do you even bring it up?  How do you know when a person that you’re talking to is someone that you’re going to hit it off with enough that you’ll still be friends 6 months down the road?  Because I don’t want to share the intimate details of my life with just any random person.  How do I make a friend and not have them already know that vital part of my life, the part that has changed me forever?

So I think today was partially a test run.  To see what would happen.  And sure enough, I walked away from the conversation feeling bad.  A liar.  Hopeless.  I  can sit here and tell myself that there are a number of factors why I didn’t say anything about Zoe–because we’re moving in three months so there’s no point in making new friends now; because she has a brand new baby herself and I don’t want to make her feel guilty/bad for me/plant the seed that something like that could happen to her.  But I know that’s not at all it is.

And I know too that the obsessive need to talk about Zoe will lessen with time.  That a few months, a few years, down the road I won’t feel like I’m lying if I don’t mention Zoe to random people.  That at some point she isn’t going to be the center of my universe, the center of every waking thought, like she is now.  That at some point it will be easier to tell my new friends about her once we’ve gotten to know each other and are a significant part of each others lives.  Like Jeff pointed out, my wrist tattoos are a good segway into that conversation.  It’s just now that it’s hard.  Because she is so important to me right now that I can’t fathom moving to Leavenworth and attempting to make new friends in 3 months who don’t know about her existence.  Who won’t know to ask me how I am–really ask.  And if today’s conversation is any indicator, I’m not going to have the guts to just bring it up out of the blue.

As if making friends wasn’t already difficult enough with each PCS.

It is what it is.

One month.  Zoe should be 1 month old today.  I should be putting her in some cute little pose that I would repeat every month for the next 11 months to show how she’s grown.  Okay, let’s be honest, I wouldn’t actually be doing that today.  I was always at least a week behind in all of the monthly photos of the other kids (J with the dogs and C in a laundry basket) and there’s no reason why this one would be any different.  So I’ll amend that to say that I should be *thinking* about how I need to find a cute pose for Zoe to replicate every month for the next 11 months to show how she’s grown.

And it’s a double whammy kind of day.  Not only should she be celebrating her first month, but in a few short hours it will be exactly 3 weeks since we let her go.

I was fully expecting today to be a barely-able-to-function kind of day.  But it’s not.  I’m actually having a good day.  Not the same type of good day I had pre-Zoe’s death, but a good day comparatively speaking.  The tears I’ve shed have been good tears; healing tears.  Not I-can’t-breathe-I-don’t-want-to-live tears.  I’m thinking about Zoe with a smile.  A sad smile, but a smile nonetheless.  And the universe is really putting me to the test today, to see if I’m actually managing to cope.  I saw not one but two very pregnant women  who already have kids around C’s age today.  One at Romp n Roll, a little gym we go to, and another at B&N while he was playing with the train set (can you say obsessed??  I let the kid play uninterrupted for 45 minutes straight and then when I told him it’s time to go he cried and cried and cried.  And then during the entire 45 min drive home he just kept doing the sign for “more” and then repeating “choo choo…choo choo…” in the most pathetic voice ever).  They both had kids that were within a month of being 2, just like C.  This usually isn’t enough to barely contain my tears or leave (like seeing itty bitty babies Zoe’s age does), but it does bring me down a peg or two since all I can think about how that was me just one short month.  Before.  But not today. Today I was fine.  Today I just smiled and wistfully wished for Zoe, wished for a month ago before it all went to shit.  And then kept on going.

While we were in the mall “Three Little Birds” came on.  I sang the chorus of that song over and over and over again to Zoe on her last day with us.  “Don’t worry ’bout a thing, cause every little thing gonna be alright.  Singin don’t worry bout a thing, cause every little thing gonna be alright.”  And instead of bursting into tears, I smiled my sad smile again and sang it to C, a few tears sliding down my cheeks.  My Zoe song.  I know I’m reading way too much into it, but I couldn’t help but hope that Zoe sent me that song as a message–because everything little thing is going to be alright.

And then I came home and discovered Zoe’s birth certificate in the mail.  We’ve been awaiting it’s arrival so we can take care of the final thing–getting her enrolled in DEERS so we can then disenroll her.  So our “million dollar baby” (as we liked to joke about in the hospital) can be covered under our insurance.  So we can receive her final gift to us–her life insurance policy. Which we haven’t decided for sure what we’re going to do with yet, but will probably donate it to a charity that helps cure/treat whatever heart condition she ended up having.  Which hopefully the autopsy will be able to answer for us.  But even opening that up and reading “Certificate of Live Birth for Zoe Lee Delp”  and seeing all of the details didn’t send me into a complete tailspin.  More sad thoughts, more sad tears and more sad smiles, but I’m still here.  Still breathing.  Still coping.

I think a lot of my ability to cope with everything today is because of a realization I had on Saturday afternoon.  I was at the park with the kids when another family showed up.  They had 3 kids, all slightly older than my three.  The older girl was probably around 7, the boy about 3 and a little girl probably 1 1/2.  Instead of looking at the carbon copy of what my family should be a year down the road and bursting into tears, I smiled.  I thought, “That’s not going to be us anymore.  And it’s awful and it’s not okay or right, but it is what it is.” And I felt calm and peaceful.  Because it’s the truth.  Someday we’ll have another kid (or, as I casually dropped into conversation with Jeff last night, 2 more children) and although he/she will never replace Zoe and although the age difference will be more than what I wanted this time around and although things will never be the way they should be, it is what it is.  And nothing can change that.  No amount of crying or wishing or hoping or dreaming can change the way things turned out.  Like one of my BFFs oh-so-wisely pointed out to me, I’ll never be the same person I was before.  Just like I wasn’t the same person after Jeff’s deployment as I was before (either time), or after having first J, and then C.  This is my new normal.  It’s not okay and it’s not right, but it is what it is.  It doesn’t explain why it had to happen, why she had to leave this world and not get a chance to live her life, but the why doesn’t matter.  Not really.  And I can either step it up and be here for the kids and husband I’m fortunate enough to still have, or I can fail.  And not only will failing not bring my precious baby girl back, but it will hurt everyone else.  So really there is no choice at all.

That’s not to say that I’m done with the all-consuming grief I experienced last week.  I know that there will still be plenty of times that it will be difficult to function, to think, to breathe.  That I still need to learn to cope with my biggest obstacle:  teeny tiny babies that belong to someone else.  I just hope that those days will be fewer and farther between.  That it won’t be a straight 72 hours of grief, like last week.  That maybe the helpless “I’m drowning” feeling I experienced can be somewhat lessened by my newfound mantra:  it is what it is.

I think another reason why I’m doing okay today is because I had a good weekend.  It certainly seem like it was going to be on Saturday morning, but it ended that way for sure.  I actually managed to talk to Jeff about how I was feeling and (unsuccessfully) coping.  Which was something I hadn’t been able to do the previous three days.  I knew that he wanted me to talk, that he was worried about me, that he knew I was barely holding on.  But I just couldn’t.  I didn’t want to.  But we had a long conversation on Saturday night after the kids went to bed and it helped.  It helped to talk about all of my fears and concerns and grief triggers.  Of course it did.

On Saturday I also started researching grief counseling and infant loss support groups.  I ordered 3 books about neonatal death from Amazon.  I’m determined to get the help I need and try anything and everything to see what works best.  I can’t allow myself to end up in the place I was last week.  Unable to talk, to move, to do anything at all.  To be completely overwhelmed by sadness and loss.

And then yesterday we had a wonderful family day.  It started off by cleaning the house, which although I dread the task itself and usually procrastinate as long as possible, the finished product always makes me feel better.  That and cleaning usually takes my mind off of everything except cursing my family for being such slobs (myself included).  I mean come on J, toothpaste not just in and around the sink, but ground into the bathroom floor.  And on the wall on the opposite side of the sink…how?  HOW?!?!?!  It was a lovely day so we took the dog for a walk around the neighborhood, stopping along the way to let the kids play at the playground and chat with some good neighbors.  We drove up to Richmond and spent a few hours at Maymont, a wonderful free park with a petting zoo, wildlife exhibits and beautiful scenery.  Then we went to a car show and checked out some SUV possibilities for the future (which is where I oh-so-casually informed Jeff that we were definitely going to need a large 7-seater since we’ll definitely be having two more children).  We had dinner at a diner and then drove home.  It was just nice to be together.  To be out of the house, but not in a rush.  To move at a slow pace and take our time.  To be outside in the fresh air, the sun shining on us.  Even J’s constant complaining and whining at Maymont that she was hot and tired (seriously we have the laziest child ever) didn’t get on my nerves like it usually does.  Because even though there should be 5 of us, there aren’t.  And even though it’s not how it should be, it can still be nice.  It is what it is.

Coping.

The worst times are trying to fall asleep at night and waking up first thing in the morning.  Trying not to think about it because it’ll make me cry and keep me up longer (or start my day off on a depressing note), but unable to think about anything else.  To think how I shouldn’t be having any problems falling asleep because I should be sleep deprived.  How nothing feels like it should.  What she would look like now?  How good of a sleeper and eater would she be?  Would she need to be bounced and sang to like her brother and sister in order to fall asleep?  Would she be an easy baby, content to just sit and watch the world?  Would I be experiencing mother guilt from yelling at her in the middle of the night because she just wouldn’t let me go back to sleep?  A million questions and thoughts.  Never ending.

No, I take that back.  The worst times are actually seeing babies.  Not just any babies; they have to be newborns.  The older babies tug at my heart strings and make me a bit sad, but it’s the babies that are teeny tiny and only a few weeks old that I can’t handle.  The babies that would be Zoe’s age if she hadn’t died.  Fortunately there are only two of my FB friends that had babies right around the same time Zoe was born, and one of them rarely posts anything.  The other one I just make sure to scroll by very quickly.  And at least I know to be prepared that I may see pictures of them anytime I log on.  Not that I spend much time on FB anymore.  Yet another thing that would be different if Zoe were here–my iPad would practically be glued to my hand and there would be a permanent Nikki butt-print in the couch from all of the time I would spend there breastfeeding.

There have been some really rough moments, but the Sunday that Zoe would have been three weeks was the worst day I’ve had since coming back from the hospital.  I bounced around all day from being perfectly fine to in tears.  Nothing in particular would set me off; I would just start crying.  I was grumpy and irritable.  I’d be perfectly fine and normal and J or C or Roman or Hubby would do something that slightly irritated me and I would go off on them.  And no matter what I just couldn’t shake it.

Deciding that we needed out of the house after nap time, we took the kids to a place called The Playroom.  It’s just what it sounds like–a giant place with a bunch of toys and bouncy houses.  I actually can’t stand that place…to me it’s like a giant yard sale threw up.  They have a ton of toys, but no sets of anything.  There’s a dollhouse, but no dolls.  A play kitchen, but no cookware or food.  The last time we took the kids there J played for 15 minutes and declared she was “ready to go home”.  Fortunately there were 4 birthday parties going on so she found a couple of kids to run around with and so we barely saw her.  They had couple of Little Tikes cars there, so between those and a “baba” (C’s word for tire…don’t ask, no clue!) that you could stand and bounce on, C was in heaven.  I was having a perfectly fine time there…until I caught sight of a teeny tiny baby.  She couldn’t have been more than 2 weeks old.  Her grandfather was holding her.  She had a full head of curly black hair with a bow in.  And I lost it.  Thank God Hubby was there.  After doing my best to hold it in, I finally told him I’d be right back and went out and sat in the car for 15 minutes and bawled.  Gut wrenching, soul shaking, can-barely-breathe tears.  The tears I had been holding in all day, that I just wouldn’t let come out because having a good cry doesn’t make me feel better.  I hate dwelling on it, thinking about it.  I just want to avoid it.  Because there isn’t anything that makes me feel better at the end.  There isn’t a natural end point when the tears just peter out and I stop wanting to cry or stop being sad.  The more I think about it, the more worked up I get.  This isn’t like crying when Hubby was deployed because I was sad and lonely, but able to get myself to stop by thinking about homecoming.  I don’t feel better or refreshed after crying.  I don’t know how to pull myself out of the depression and turn it off, to not think about it.  How to let it end.  Once the thoughts and grief start it’s like they’re never ending.  If I didn’t have the kids and other responsibilities I think I would probably just lay in bed and cry all day and all night.  And I think I might subconsciously feel guilty for wanting to stop.  For wanting to get over it, to stop being sad, to end the tears.  I think I feel like if I was a better parent, if I loved her more, than I wouldn’t be able to stop.  Which the normal, common sense part of me knows isn’t true in the least bit.  It’s not something that I even realized I may be feeling until right now.  I don’t know.  I don’t know anything.

I don’t know what I would’ve done if I had been on my own at the Playroom.  I returned inside and was able to contain myself the rest of the time.  I made sure to keep an eye out for the baby, but never saw her again.

I did better after we got home that night.  Until Hubby’s dad called.  After he hung up we started talking about Zoe again (I can’t even remember what the conversation was about now) and I plummeted back into my depression.  I attempted to lose myself in the episode of Homeland we were watching, but it didn’t work.  At 930 I headed up to bed, Hubby following.  He knew that I was still upset and tried to get me to talk about it, but I just didn’t want to.  I just wanted to sleep.  I felt bad; I know that he wanted to help and that he really wanted me to talk about it, but I just couldn’t.  I know that he was worried about me.  That I wasn’t handling it in a healthy way.  But I didn’t care enough to talk.  I just wanted to plunge into sleep and not think about it.

The following day wasn’t much better.  That Monday marked two weeks since we let Zoe go.  I woke up and was still in my funk.  It didn’t help that I was also planning on returning to the gym later that morning, which I was completely dreading.  The YMCA I go to is mostly a bunch of old people and they all knew I was pregnant and were following the pregnancy very closely.  I worked out there 4 days a week for my entire pregnancy, up until 2 weeks before Zoe’s birth (and the only reason I stopped then was because I didn’t want to have to pay for the entire month even though I would only be using it for half of the time.  Otherwise I would’ve been there until she popped out).  These people knew me, knew C, knew I was going to have a baby.  And I didn’t want to face them.  I didn’t want to have that conversation with a bunch of strangers.  Over and over and over again.  Because it’s not like it was going to be like my experience at story time at the library last week–I arrived, they asked where the baby was, I said she died, and bam, it was done.  Everyone was there all together in one big group.  I didn’t have to repeat myself.  It’s going to take weeks until everyone at the gym knows what happened.  Weeks of me tensing every time someone walks by, wondering if they’re going to exclaim “Congratulations!” and ask for details.

I was dreading my return so much that I was considering switching branches.  But the next closest Y was 20 minutes from my house instead of 10, and I just couldn’t justify forcing C to be in the car any longer than necessary.  Plus I like the childcare at my normal Y a lot better.  The busiest I’ve ever seen it is 5 kids.  Usually C’s the only one.  I love the individual attention he receives.  So I was going to suck it up and go in.

All that morning I cried off and on just thinking about what I was walking into.  I was so worked up that as I walked through the doors I was already on the verge of tears before anyone even said anything to me.  So when the front desk lady saw me and got all excited and asked where the baby was, I immediately burst into tears.  As we were talking about it one of the personal trainers who would always chat with me came over proclaiming, “Skinny mini!  Look at you!  You look fantastic!  Where’s the baby?!”  She faltered off once she saw I was crying, and then I filled her in too.  I got my hugs from random strangers and then walked C down to the childcare room.  Where I had to go through it all over again with the childcare worker.

And that was it for the day.  Just those three.  Going in, I was hoping to get it over with as many people as possible on the first day.  Later I was thankful it was only three.  I wasn’t in any condition to go through it over and over again with a bunch of strangers.  I can usually remain calm when I talk about it with people I don’t know very well and I hated that I was so emotional.  So much so that when I went back the next day I apologized to the front desk lady for crying.  And when a different personal trainer asked me where the baby was I was able to remain calm and forlornly inform him that she had passed away and received my condolences stoically, like usual.  Another old man asked me what I had and I didn’t even bother to tell him that she had passed away; just that I had a girl.  There are at least 3 more people whom I haven’t run into yet that I know will ask me about the baby, but a surprising number of people haven’t said anything.  I’m wondering if that’s because I haven’t seen as many of the regulars or if it’s because they don’t recognize me without the baby belly.  Only time will tell I suppose.

Although I was dreading my return, and it was just as awful as I had anticipated, I’m glad I did it.  I’m happy that I don’t need to dread it anymore (even though I do still tense up every time someone slows down by the machine I’m using, just in case they’re going to talk to me).  That I’m not driving that extra 20 minutes every day just to avoid the situation.  That I’m working out again.  Lord knows I need all the endorphins I can get.

I have to take every day hour by hour.  Literally.  The smallest thing will throw me into a pit of despair.  And there are times when I don’t even know what triggered my depression; it’ll just hit me out of nowhere.  Other times I think that I’m coping too well–that I haven’t grieved properly or enough.  That I’m returning to “normal” too fast.  I know both of these reactions are normal.  And that this is going to be my life for a long time.  That I’ll never be fully over it.  5, 10, 50 years down the road there will be times when something seemingly small and insignificant will trigger thoughts about Zoe and I’ll cry.  The times will be fewer and farther between, but they’ll still occur.  And I’ll never be fully prepared for them.

Image

Zoe’s Story. Part Two.

Hubby kept me updated while I was at home and he thought things were going well.  Her numbers had started to rise by the time he left for the evening, but nobody seemed to be concerned.  There weren’t any middle of the night phone calls so we thought we were safe.  When he arrived back at the hospital the following morning everything looked the same.  I put J on the bus and then headed back to the hospital.  At 1015 (I was 15 minutes away from UVA) Hubby called asking how far out I was.  The news wasn’t good.  He didn’t want to tell me over the phone; just hurry up and come in.

I arrived just as the NICU doctors were rounding.  They pretty much repeated the same awful conversation I had with them on Saturday morning, except without hope.  They’re going to have a meeting at 130 to talk about what they can do for Zoe from here.  But we should be prepared that there is nothing more that they can do for her.  They’ll come and get us at 2 pm and let us know what was discussed.  I wrote, “Things are bad. Her fluids are worse. They just did another echo and they’re going to convene at 130 to talk about the next step–try new medications, try the ECMO or just let her go.”

The next 3 and a half hours were excruciating.  I sat next to her with the pinky of my left hand up against her left arm and my head resting on her bed next to her poor deformed ear and talked and talked and talked like I had done every day for the last seven days.  All of the other days I had told her stories.  I filled her in on every detail about J and C, starting with their births and any funny stories or anecdotes I could remember about them. About C’s love of trucks and choo-choos and J’s obsession with Disney Princesses.  I told her she needed to be a nice mix of the two–into just a little bit of everything.  I told her all about J’s health scare 4 years ago and how scary and traumatizing it was, but that it was nothing compared to this.  I told her that Moody didn’t really die like we told J; we actually just gave him back to his rescue.  And her first sentence had better not be “Hey J!  Your dog didn’t actually die; Mama and Dad just gave him away and then lied to you!”.  I told her stories from my childhood and filled her in on all of her aunts and uncles and Pappy and Memaw.  I told her about my mom and how I would never leave her like that.  I told her all about how I met Hubby, back when he was just the “meat man”.  About our wedding.  About all of the places we have lived and the places we’re going to go.  About beach trips.  About fake aunties.  About all of our dogs, past and present, and what happened to each of them.  I told her absolutely anything I could think of over those seven days.  I told her things that I had never told anyone else before.  One of the NICU doctors came over to check on her one day and he told me, “I love how you just sit here and talk to her all day.  Keep it up.”  I also read “Baby Bear Baby Bear What do You See?” to her about 6,000 times.

But on Monday during those three and a half hours I just told her over and over again that I have complete and total faith that she was going to pull through this.  That she WILL pull through this.  I told her that she comes from a very strong stock and she was the strongest of all.  I told her that she had better hurry up and get better because she was using up all of her allotted “worry Mama” time–now when she was a teenager she could never be out past curfew or give me grief about anything at all.  I talked to her about what I thought she was going to be like when she grew up–strong, fearless, and a complete and total shithead.  That she would be an early walker and early talker.  And that after this experience she was either going to become a doctor herself or absolutely hate all doctors.  About being there for the first time she falls in love.  The first time her heart is broken.  Her wedding.  The birth of her children.  Hubby agreed that she could have not just one but two ponies.  I told her that she could get away with absolutely anything with me–I would never be mad at her for anything.  Ever.  Any time a bad thought would start to creep into my head I would shake it out and repeat over and over again that she was going to be okay.  I sang her the chorus to “Three Little Birds” over and over again…”Don’t worry about a thing cause everything little thing gonna be alright.  Singing don’t worry about a thing cause everything little thing gonna be alright.”…  I made up songs to the tune of popular nursery rhymes all about her.  This was my version of Twinkle Twinkle Little Star that I sang about a zillion times in that three and a half hours:

Twinkle Twinkle Little Zoe

How we love you so

You are so sweet and very strong

You’re going to be just fine

Twinkle Twinkle Little Zoe

How we love you so.

I never said they were creative or good versions of the original songs, okay??

At 2 the nurse asked us to follow her.  We walked to the other side of the 7th floor.  Hubby told me later that was when he knew what they were going to say; the rest of the time they talked to us at her bedside.  Along the way we ran into one of the NICU doctors that had been with us since the beginning of our stay at UVA, Brooke.  She gave me a big hug and said that she was off of work but she was going to be right here when we got out and to let her know our decision.  We walked into the conference room and sat down.  There was another NICU fellow who had been with us since the beginning, Matt.  One of the heads of NICU.  A NICU resident.  The two cardiologists we had been working with since our arrival.  A fellow from renal.  A social worker.  And Zoe’s nurse.

Matt took the lead.  He explained that we have three options.  First, we continue on the path that we’re on and pray for a miracle.  We can let her stay like this for a couple of days and see if she pulls through on her own.  But because her fluid levels are continuing to increase rapidly and her heart and lungs still aren’t working properly, this is extremely unlikely and would most likely lead to organ failure.

Second, we try the ECMO.  There were several problems with this choice though.  They would need to consult with the surgeons to see if they would even be able to do the procedure.  They would have to go through the neck and, as I pointed out, Zoe no longer has a neck.  Her head and chest were so puffy that her neck has completely disappeared.  Even if the surgeons are able to do it, we would most likely end up exactly where we are now after the procedure is over.  The problem is that her capillaries aren’t working properly and the fluid is leaking out into her body.  ECMO wouldn’t be able to fix that.  We would probably be in the exact same boat we’re in now a month down the road.

Third, we let her go.  We unhook everything and let her go in peace.  We accept the fact that she was given a shit body and let nature take its course (my words obviously, not his).

One of the cardiologists wanted me to know two things.  First, that this wasn’t my fault.  I didn’t eat wrong, sleep wrong, do anything wrong.  She was just born this way and nothing would have changed that.  Although I had been told this a few times throughout this whole process, I didn’t truly believe it until then.  I needed to hear those words.  I needed to know that I didn’t do anything wrong.  Especially because I worked out my entire pregnancy, up until the last two weeks, and I probably pushed myself too hard.  And the pillow I used to keep myself off of my back was flat, not puffy, so I was worried that because it wasn’t fluffy enough I was on my back too much while I slept.  Or the two jars of Nutella I consumed during her last 4 weeks in the womb.  Or a million other things that had run through my head during the last week that I could have done wrong.  But because this was genetic I didn’t do anything wrong.  She also told me that it wouldn’t have mattered if she had been transferred here straight away, or even if she had been born here.  They would have taken the same steps the other two hospitals had.  And the outcome would have been the same.  This was another thing Hubby and I had discussed and we were relieved to have that concern put to bed.

Then we asked our questions.  I wanted to know (and I’m proud of myself for making a joke of it) why they couldn’t just prick her with a needle and let all of the fluids ooze out.  They said that they had considered doing just that (but in a medical way) but it wasn’t going to work.  There was just too much fluid.

At one point a heart transplant had been brought up, so I asked about that.  But the waiting list for a neonatal heart is at least 6 months, time Zoe doesn’t have.  Plus she probably wouldn’t be a candidate for the list anyway since she has other problems.

I wanted to hold onto the miracle idea.  So I specifically asked about the fluid–if we managed to get rid of the fluid where did the rest of her body stand?  Would she be okay?  The answer was probably not.  Her heart should have started to repair itself by now and the fact that it hadn’t meant that it probably never would.  We were so far past the gestational diabetes diagnosis that they knew that wasn’t the problem anymore.  They didn’t know what the cause was, but whatever it was is irreparable.

Hubby asked a couple of questions too, none of which I can remember.  The bottom line was that she just had a crap circulation system–bad heart, bad lungs and bad capillaries.  After we finished with our questions everyone stood up.  They said we could keep the room as long as we wanted and to just let Matt know our decision once we returned to the NICU.

We both already knew what we had to do.  We sat in silence for what felt like an eternity, but was probably only a couple of minutes…probably because neither of us wanted to be the one to say it out loud.  To make it real.  To say the words, “We have to let our baby girl die.”  Because that was our only choice.  She was in pain.  And there was nothing that could be done.  The doctors tried everything they could possibly think of but she just wasn’t meant for this world.  And we needed to let her go.  It was the right thing to do.  Anything else would be completely selfish.

I don’t have the slightest idea how long we sat there crying and holding on another.  It could have been 10 minutes; it could have been an hour.  Finally we stood up and went back to the NICU.  We found Matt and told him our decision.  He reiterated that we were making the right choice and it showed what good parents we were for choosing Zoe over ourselves.  Now we needed to decide when.  Did we want J to come up?  This was something neither of us had discussed.  Would it be better or worse for J?  We ultimately decided no, she shouldn’t be here.  I wish she would’ve been able to meet Zoe, but not like this.  Plus they were an hour and a half away and now that the decision had been made, we were ready to just do it.  I couldn’t sit around for another hour and a half and watch her breathe, knowing that the end was imminent.  That may have been selfish, but J’s therapist can deal with that 20 years down the road.

We also had to decide if we wanted to get her baptized.  As I said previously, we aren’t religious.  Hubby is Catholic (super lapsed) and baptized, but I’m not.  Neither of our other two children are.  At first he said yes, and then no.  I spoke up and said, “You know what?  Let’s just do it.  I don’t know what’s out there but I do know that I don’t want to screw Zoe.  Just in case.  It certainly isn’t going to do any harm.”

Matt explained that they were going to move Zoe into one of the rooms in the back so we could have some privacy.  We could each hold her for as long as we wanted and then they would unhook everything and let her go.  I called my father to let him know.  Hubby called his parents.  I sent a message to my friends:  “We’re going to let her go.” We stood by Zoe’s bed as they got her ready for her last transfer.

In the meantime a bunch of people came over to talk to us.  The chaplain showed up and waited with us.  Her nurse from the previous two days came over to give us hugs and her condolences.  The social worker stopped by with a basket of stuff to give J “from Zoe”.  Brooke gave us hugs and said that we were doing the right thing and she was so sorry.  A grief counselor talked to us about how to talk to J.  She said there were five things to remember.  1) Use the word death.  Kids take things literally.  2) Explain that death is irreversible.  Zoe will not be coming back.  3) Cry in front of her.  Explain what’s happening and why we’re sad and reiterate that it’s okay that she’s sad.  4) Make sure she knows that this isn’t because of anything she did.  This is not her fault.  5)  Of course I can’t remember the fifth thing.  Give me a minute and maybe it’ll come…  OH!  That everyone dies.

They gave us the option of seeing if any of the photographers in the area were free.  They will donate their time and take pictures and give you the print release all for free.  We opted not to do it.  Not because I was uncomfortable with someone being in the room with us throughout everything–frankly, neither of us would have even noticed–but just because I figured that my iPad would do just fine and there were only so many pictures to take.  I don’t regret my decision per se, but I do wish I had more photos.  I have 39 pictures of Zoe and that’s not enough.  But that’s not something that a photographer could have remedied.  He/she can’t give me pictures of her first smile…crawling…taking her first steps…her first day of school…losing her first tooth…her first dance…her wedding…her children.  Nobody can give that to us.

No idea how long it took for everything to be moved over.  It felt like hours but was probably more like 45 minutes.  We followed Zoe down the hall to one of the rooming in rooms.  It wasn’t the same one that I had stayed in that first night; fortunately they have two of those rooms.  But if I would have had any idea that was what those rooms were used for–for grieving parents to have a little privacy with their child before he/she is gone forever–I never would’ve stayed there with all of that bad juju.  I know the rooms are used for other things too, like when a baby is released to go home, but that doesn’t matter.

I held her first.  It took a nurse and two respiratory therapists to get her on my lap, but it was worth it.  The moment they plunked her down I said, “Holy shit she’s heavy!”.  Well, she was!!

The chaplain came in and baptized her for us.

zoe 12The lactation consultants came in to talk to me about my breast milk.  My initial reaction was to hurry up and get rid of it, but when they asked what I wanted done with the 100 ounces of milk I already had stored in the freezer just waiting for Zoe to pull through and use it, they mentioned donation.  That seemed like a nice thing to do–let as much good come out of this situation as possible.  Help other babies and mothers who were going to be able to go home at some point.  They gave me the information for the King’s Daughter Milk Bank.  I decided I was going to continue to pump until my supply dried up and then donate all of it at once.

 I don’t know how long I held her, but it wasn’t long enough.  It would never be long enough.  I stroked her cheek, told her how beautiful she was, how much I loved her and how I was going to miss her.zoe 11 zoe 14 zoe 16I don’t know why I’m smiling.  Force of habit I suppose.  But I hate looking at those pictures and seeing that stupid grin on my face.  It makes me angry at myself.

 After what seemed like an unbelievably short amount of time, we called the nurse back in so we could switch her over to Hubby.  It was his first and only time holding her.zoe 13Once he was “ready” (ha, like either of us could ever be ready for that moment) we called the nurse in again.  I remember him asking me at one point while he was a holding her to call the nurse back in, but I said not yet.  I knew that there was never going to be a right time, but I just needed a few more minutes.  Just a few.

 She came back with the on call NICU doctor, one we had never met before.  He expressed his condolences and then explained what would happen.  They would unhook her from everything except the pain medication.  Once she was off of everything there was no telling how long it would take for her to pass, but based on her condition it probably wouldn’t be very long.  About a minute after they finished Hubby thought she was gone.  I was devastated.  It couldn’t happen that fast, it just couldn’t.  I thought we were going to have minutes, not seconds.  And I know that no matter what I wasnt going to be prepared; no matter what there was no “good time”.  But I wasn’t expecting it to be that quickly.  It turned out that she hadn’t passed yet.  Her heart was down to only 40 beats per minute.  She was so fluidous that we couldn’t see her chest moving up and down or feel her heart beating–that was why Hubby thought she had already left us.  The doctor and nurse decided to give us some privacy; they would watch the monitor and check back in a little bit.

 We sat there for another 15 minutes.  Talking to her, telling her how much we loved her and were going to miss her.  That she needed to be J and C’s guardian angel and keep an eye out for them.  And the more we sat there with her, looking at her, seeing her without all of the tubes and wires, feeling her, the more it reinforced that we were making the right decision.  Her ears had nearly disappeared into her head.  She didn’t have a neck.  Hubby tried to put her arm down so it was next to her stomach, but it wouldn’t stay.  Her back, which we had never seen, was purple and looked bruised from the lack of circulation and the fluids.  She had bruises all over her.  It was amazing how much she had deteriorated just since that morning.  zoe 15zoe 26The doctor checked her heart rate again.  Down to 20.  They waited with us.  A few minutes later he checked it again and announced that she was gone.  At 620 pm, Monday February 22nd an excruciating pain overtook us.  We will never be the same.  My beautiful, perfect baby girl is gone forever.  She looked just like her brother and sister when they were born–a full head of dark hair.  Slate blue eyes (which would eventually change to brown).  The same messed up pinky toe J has (but not C).  That tiny nose.  The same lips.  Big chipmunk cheeks.  But she didn’t look like that anymore.  She still looked beautiful, but a painful beautiful.  And that will be how we will remember her forever.

 The next part took awhile.  A second nurse came in to help out.  They made a plaster of her hand and foot for us, which were absolutely beautiful.

The nurse gave me a washcloth and some baby oil to clean her up.  Her first bath (which with all of the gunk, blood, snot, fluids and plaster all over her she desperately needed it!).  She gave me a pair of PJs to put on her.  Size 9 months.  J and C were almost a year before they fit into that size!zoe 17zoe 18I always thought seeing pictures of people holding dead babies was creepy.  Until I had my own.  Not creepy in the slightest bit.

The doctor talked to us about an autopsy.  We opted for a full autopsy in hopes it will give us some answers as to what the cause was.  Not because it’s going to change anything, but because we need to know before we try to have any other children if this is going to be a concern in the future.  Because we can’t do it again.  We just can’t.  And honestly also because I need to know for sure that this wasn’t my fault.  Although I believed with all my heart what the cardiologist told me–that I didn’t do anything wrong–at the time, doubt has started to creep back in.  Maybe I overheated while working out.  Maybe my heart rate was too high.  I do know that I pushed myself too hard and I’m terrified that I’m the reason this happened.  I don’t think so, but I need to know for sure.  I need to be told that it was genetic.  It’s the only way I’m going to be able to completely release the guilt.  The results should be ready for us in a few weeks.

We also asked about organ donation.  Unfortunately it turned out Zoe wasn’t suitable.  Although they could use her heart valves to help another baby, because we were having an autopsy it wasn’t possible.  They have to garner the valves themselves, but the medical examiner needs to perform the autopsy himself so it just wouldn’t work.  I really wish we would have been able to do that, but knowing if this is something we have to be concerned about in the future takes precedence.

 After everything was finished I reluctantly gave her back to the nurse.  She took Zoe away.

 We went back to the Ronald McDonald house to clear out our stuff and check out.  We had to drive back separately since we both had vehicles there.  And neither of us ever want to come back to Charlottesville, especially UVA, ever again.  We drove home in a fog.  I barely made it.  My absolutely amazing Irish twin came over minutes after we pulled into the driveway and we went for a walk in the freezing cold while I sobbed and cursed and told her everything.

 Before bed I went in and looked at my two children, now my only children, fast asleep in their beds.  C was in his crib with his 10 stuffed animals (not an exaggeration).  I nearly had a heart attack when I couldn’t find him at first–I had to turn on the hallway light and look again.  He was sleeping with a brand new huge stuffed duck literally on top of him. zoe 27J sat up and started talking when I opened her door.  Terrified that I had woken her up I froze, but she was just talking complete nonsense in her sleep.

The next morning I heard J come out of her room and start to go downstairs.  I called her in and told her to climb in bed with us.  She immediately asked about Zoe since both of us were home.  I said, “You know how Zoe was in the hospital because she was very sick, right?  And sometimes doctors do their best, but they just can’t help sick people and they die.  That’s what happened to Zoe.  She died.”  J immediately burst into tears.  I hugged her and we cried together.  She told me that she never even got to meet Zoe.  And she wants a new baby.  Right now.  I told her that I felt the same way.  And I’m very sorry that she never got to meet her little sister.  And then I explained all about guardian angels and that now Zoe is her and C’s angel.  She’s going to watch over them and keep them safe.  We talked about angels a lot over the next few days as J tried to understand.  She really didn’t (and still doesn’t) like talking about it.  She doesn’t like anything bad and doesn’t like to acknowledge bad things.  She burst into tears the next day when I told her that I wrote a note telling her teacher what happened.  She said, “But I didn’t want you to tell her that Zoe died!  I just wanted you to tell her that you were home and that’s all!”.  I explained that she doesn’t have to talk about it if she doesn’t want to; Mrs. Smith will listen if she does want to talk, but she won’t say anything to J if she doesn’t want to talk.  Over the next few days as I continued to cry constantly J informed me that “We can just have another baby.  And it’ll be a girl.  And it’ll look just like Zoe.  And act just like Zoe.  And we can name her Zoe.  And then you won’t be sad anymore.” If only it was that simple…

 After we got downstairs that first morning I gave J her Zoe basket.  One of the things inside was a bear.  I began calling Zoe “Zoe Bear” the second day in the hospital and I couldn’t help but think how fitting it was that J now has her own Zoe bear.  zoe 29 zoe 28Even through all of this there are a few things that I thank my lucky stars for.  First:  we had 8 days with her.  I had eight days to tell her my life story.  To talk to her.  Touch her.  See her.  Eight days wasn’t nearly enough, but it was better than nothing at all.

Second:  we have J and C.  I can’t even imagine what this would have been like if we didn’t have those two to come home to.  Especially that first night.  I needed to see them, to touch them, to know that I still had two beautiful perfect amazing wonderful children to care for.  To love.  To hold.  To watch grow up.  Although it has its bittersweet moments.  Like when the four of us were all playing together that first full day home, both kids laughing hysterically.  Hubby and I caught each other’s eye and I could see the same thought cross our minds at the same time:  “This isn’t right.  There shouldn’t be two of them, there should be three.  Three giggling children.  And it’s never going to be the way that it should.”

Third:  this was our decision.  As difficult and heart wrenching as it was to be the people who have to decide to end a baby’s life, I’m glad that it was our choice.  If she would have just died on her own we would have had a much more difficult time accepting it.  Because as awful and painful as it is, it was the right decision.  That poor poor baby didn’t need to be in this world in all of that pain a moment longer than she was.  And we can take comfort from the fact that she really is in a better place.  Even if I don’t understand why it had to happen.

Fourth:  J and C have a guardian angel now.  They have someone to watch over them.  I may not believe in God, but I do believe in guardians.  That good day that Zoe had, the one where I went home, completely ruined that for me.  Why get our hopes up?  Why destroy us with the news that she may not make it, and then allow her to get better, to let us think that we were out of the woods and making progress just to rip it all away, making it even worse than it was before?  Our poor Zoe could have been out of pain 36 hours earlier.  I’m not angry at God.  I just don’t think there is one.  I’m not trying to start a theological debate or push my opinions onto anyone else.  I’m glad that other people have faith, that they believe there’s a higher power and can take comfort from that.  I just don’t.  But that’s a major digression.  I do take comfort in my belief that Zoe is watching out for them.

Fifth:  Hubby and I have a strong relationship.  We have each other to lean on.  Because I wouldn’t be able to get through this without him, that’s for sure.

Sixth:  there wasn’t a nursery to tear down.  We’re moving in three months so Zoe was just going to sleep in a pack and play in the spare room.  Once we get to the new house everyone is going to get new furniture for their new rooms–J will move to a single bed, C will take the toddler bed and all of J’s furniture and Zoe would have had the nursery.  And because we didn’t find out the sex of the baby, there weren’t any baby clothes to put away.  Only the two going home outfits.  I bought a new car seat for her, along with a bunch of size 1 diapers, but fortunately my sister is due with their first baby in August and so I was able to just give that stuff to her.  I can’t even imagine having to tear a nursery down.

Seventh:  I’m only 8 pounds shy of my pre pregnancy weight.  I think this has helped in a lot of situations where people don’t know/see me very often.  I couldn’t possibly be the same person who was hugely pregnant just a few short weeks ago…there’s no baby weight.  Or baby.

Don’t get me wrong.  I would give anything to have Zoe sitting right here on my chest as I type this.  To be exhausted and sleep deprived.  I would trade someone watching over J and C for that.  I would weigh 200 pounds for that.  But there are some hidden blessings and I need to take them where I can find them.  This is an awful situation that I would never wish on my worst enemy.  But you have to find the good in it, no matter how small.  Because it still could have been worse.  Our family may not ever be complete now, but we’re still a family. zoe 30

Image

Zoe’s Story. Part One.

I don’t even know where to begin.  Zoe Lee was born February 14th at 350 am.  She passed away at 620 pm on February 22nd.  This is her story.

I started having contractions off and on beginning Friday the 12th.  I don’t know if they were Braxton Hicks or just random contractions or what, but I knew the baby was going to be making her appearance pretty soon.  By Saturday they were stronger and coming more regularly.  I still wasn’t sure when to go to the hospital though; my contractions would be pretty steady for about an hour and then fizzle out or become longer or I would have a weak one in between two stronger ones.  Hubby was super paranoid though and after I wavered back and forth for several hours, he finally forced me to go to the hospital.  If it were up to me we would’ve waited several more hours, but he was concerned that he would have to speed the 45 minutes to the hospital and the baby would be delivered by a state cop.  Weirdo.

We arrived around 930 pm.  I was checked in, shown to my room and put on my gown.  The nurse said she would page the anesthesiologist for me so I could get my epidural, but I opted to wait for awhile.  By this point my contractions had nearly stopped and the ones I were having weren’t very painful.  It seemed pointless to get the damn thing at that moment in time.  My OB was paged and decided to come in (my normal OB had a family emergency so I was switched to another one in the practice a few weeks back.  I had only met this guy twice before and I told him it was unnecessary to make an appearance; I’d just use the on call OB instead.  He decided to come in anyway).  Several hours passed.  I cursed Hubby the whole time, making sure to point out that he could’ve been sleeping in his own bed for those hours instead of cramped on the hospital room couch being interrupted by nurses every 20 minutes.  Served him right! zoe 22I finally asked for my epidural around 3 am.  At 335 my OB came in and didn’t even acknowledge my presence.  Did I mention that I had only met him twice and really wasn’t a big fan of his?  Hence why I didn’t really feel the need for him to come in and deliver my baby.  At 340 I was dilated and ready to push.  The next 10 minutes were seriously the most awkward of my life.  Minus the nurse telling me when to push and counting for me, there was complete silence in the room.  Nobody was saying anything at all.  I definitely need to bring my iPod next time.

Our perfect baby girl popped out at 350 am. Or should I say “pooped” out?!  There was shit everywhere–literally.  On my legs, the sheets, the floor, my arm somehow…it was hilarious.  Her first nickname was “shithead”.  Between that and the amount of fluid that came out with her it was quite the gross birth.  The fluid was unlike anything I had ever experienced.  They broke my water and there was a constant stream coming out for a half hour afterwards.  I thought I was peeing myself.  And then another couple of gallons came out with her.  Everything was completely and totally soaked; it was disgusting.

Besides all that, though, we knew immediately there was something wrong.  First, everyone in the room knew that we didn’t know if we were having a boy or a girl but nobody told us what she was.  After about a minute I had to ask.  Second, her umbilical cord was very short.  Third, she wasn’t crying.  Fourth, she was blue.  After the doctor cut the umbilical cord the nurse took her straight to the warming station.  Which was a huge deal because this hospital touted how into the “magic hour” they are–that babies will go straight to the mother’s chest and cleaning them off and weighing them and vitals and all of that stuff could wait until later.  She would let out a strangled cry every minute or so.  During this time the OB asked me if she had been acting any differently in the last week or so in the womb.  I said, “Yes, she wasn’t moving as often.”, to which he replied, “Well you should’ve told me that.”  And those were the only words he spoke to me during the entire time.  I never saw him again and if I have my way I never will.  Especially because I did tell him that she was moving less often–four days earlier at my last appointment.  And he told me it was just because she was bigger and running out of room.  Fucking asshole.

After about 10 minutes the nurse brought her over to us and said that she had some fluid in her lungs and she had to be taken away for a little bit.  We each gave her a quick kiss and then she was gone.  I would have given anything if I had known that was going to be my one and only time to hold her without a bunch of wires.  I would’ve insisted on taking her for a few minutes.

We had our girl names narrowed down to two by that point:  Zoe and Morgan.  The decision was already made for us; Zoe means life.  It was fitting.  Her middle name was a no-brainer: all of our children’s middle names are the place where they were born (J’s is Riley for Fort Riley, Kansas and C’s is Orleans for Ottawa, Ontario).  The nurse came in about an hour later to let us know that Zoe was doing okay.  She had me guess how big she was and I said, “I don’t know, like 7 and a half pounds?”  Nope, she was 9 pounds 6 ounces!!  She asked if we would like for her to take some pictures for us since we couldn’t go and see her.  Obviously the answer was yes. Zoe 23Zoe 24zoe 20Honestly the next 7 and a half days are a blur.  I really don’t remember what happened when.  I was messaging my girlfriends a couple of times a day to keep them posted on what was going on, so I’m going to rely heavily on those messages to try to piece it together.

We didn’t tell anyone that she had made her grand appearance until around 8 am.  Both because she was born in the middle of the night and we didn’t feel the need to wake anyone up, and because we didn’t have the slightest idea what was happening with her.  All we knew was that she had some fluid in her lungs, which happens relatively often and wasn’t a big deal.  I sent my two best friends this message through FB at 7 am:  “So she’s a girl! Zoe Lee, born 350 am 9 lb 6 oz, 20 in. No pics yet. Sorry for the delay in an update…I had her for about 15 sec after she came before they had to take her to the Nursery and now she’s off to the NICU. She came out blue and with a bunch of fluid in her lungs. They did a chest X-ray and it looks like it isn’t anything more than that, but they’re running her blood to check for pneumonia or other infections. She also has a small heart murmur so she had an echocardiogram done and we’re waiting for those results. Her breathing isn’t getting any better so they’re moving her to the NICU to put in an IV and give her a mask thing. On the plus side once she’s settled we can at least go in there. The doc said he doesn’t know how long it will take for the fluid to clear out–could be hours or days. I’ll keep you posted!”

This is what I posted on FB around 1 pm Sunday afternoon:  “It’s a girl!! Zoe Lee Delp, born 350 am. 9 pounds, 6 ounces and 20 inches! There are some complications so she’s been in the NICU since her grand arrival, but she’s doing well. Once she works out the fluid in her lungs she should be released, which will hopefully be in a few days. She looks super sick with all of the tubes in, so these are the best pictures I have for now! I’ll keep everyone updated as we know more.”

I can’t even remember exactly when we found out about the thick heart.  Must not have been too much later because I sent this message at 930 am:  “We just got in to see her! They have to put a tube in her umbilical cord and then they’re done messing with her. We heard back from the cardiologist and apparently she has a ‘thick heart’, whatever that means lol. Not serious at least…just something we’ll have to follow up with a few extra appointments to make sure it corrects itself. So now it’s just a waiting game to see when she’s able to clear out that fluid. After the tube goes in her belly we’ll be able to hang out with her whenever we want in the NICU at least. So everything is looking good! She looks so tiny and sad with all the wires coming out!”  Zoe 1She had a CPAP on her to help her breathe.  They had to stick her a few times to get her IV in.  They tried for a belly button line but were unable to get it.

The cardiologist came in on Monday morning to do an echocardiogram to look at her heart again.  By this point I was asked about 16 times if I had been diagnosed with gestational diabetes (which I never was.  I failed the initial test but passed the 3 hour one with flying colors).  Apparently her large size and her thick heart were two big indicators of the mother having diabetes.  They were just assuming either it was missed or I was a transient case.  Either way they were confident that her heart was going to begin to shrink back down all on its own over the next few days.  She was going to have to remain in the NICU for at least a week for observation, however.

At this point we weren’t too worried.  With the fluid in her lungs and her thick heart she obviously wasn’t in great shape, but we kept on being told that everything would clear up on its own; it just needed time.  I wrote, “There are two main problems.  One is a thick wall that’s preventing the blood from flowing in and out as easily as normal. Normally it thins on its own. The other is that the blood is traveling the wrong way in one of the ventricles–the blue blood is trying to go back where the red blood is. That should also correct itself. And there’s the possibility that the fluid on her lungs is exasperating the situation, so hopefully as that clears up so will the heart problems.”

I said something in passing to one of the nurses about how I couldn’t wait to hold her and she said that Zoe wasn’t currently hooked up to anything important so I could hold her for a bit now if I wanted to.  I had her for about 30 minutes and it was the best half hour of my life.  I wish I would’ve known that was going to be the second to last time she was going to be in my arms…

I was going to be discharged from the hospital on Tuesday and we were trying to figure out the logistics of driving back and forth between home and the hospital (it was 45 minutes away) and what was going to happen with J and C.

Our worlds came crashing down for the first time Tuesday morning.  Zoe was declining.  The hospital that we were at was a small one; the NICU only had room for 6 babies and their capabilities weren’t great.  They were giving her Surfactin for the fluid in her lungs, but she was getting worse.  The decision was made to transfer her across town to their sister hospital.  Although she wasn’t at a critical point yet, they wanted to transfer her now while she was stable and before she became critical.  Just in case.  The NICU at St Marys is much larger and they have more experience dealing with critical issues.  My father had to go back to work on Monday (he had come down for the birth to stay home with J and C) so Jeff had left the hospital the night before, which meant I was receiving this news alone.  The plan was to move her around 2 pm.  I called Jeff and he and C drove up.

The transfer was quite the sight to see.  I wish I would’ve had my camera or iPad or something so I could’ve documented it.  A huge ambulance pulled up and five EMTs/nurses got out.  They had a giant incubator for Zoe to go into.  It took them an hour to get the paperwork straight, get all of her medications in order, unhook her, put her in the bed, strap her down and rehook her IVs.  It was absolutely amazing.  I made sure to thank them and tell them what an amazing job they were doing about a million times.  We watched her roll away in the ambulance and then we headed home.  I took a fast shower, pumped and then drove up to the next NICU, which was also 45 minutes away.

This NICU doctor was much more frank with me.  His exact words were “She is very critical. Stable right now, but that could change. I am very very concerned.” Things weren’t good.  He was tearing up telling me this, which really hit home how serious this situation was.  This was the first time anyone had said that she may not make it; that this could be life threatening.  This is what I wrote as I left the NICU that night, “I’m at St Marys, just getting ready to leave. I just spoke with the millionth doctor. Things are bad. Really fucking bad. Apparently the issue is her heart. We’re talking at least a month, and that’s if she even does get better. Which apparently could go either way. Fuck fuck fuck.  I mean there’s the possibility that she can take a turn for the better too and do it sooner than they think. That’s just not what they’re expecting. They were very serious and grim. Which honestly is okay–give me the worst case scenario. Because not once has anyone said this could possibility take over a month to get over. Or that she could fucking die. Kind of vital information.”

I stayed for a few hours and then went back home so I could put J to bed since I hadn’t seen her in 4 days.  The next morning I was going to put her on the bus, drop C off at a friends house and then Jeff and I were going to go to the NICU until his mom got into town (she was going to come down for the next week to help with J and C).  He would go back and get C and put him down for nap and I would ride back with his mom.  Which is what we did…except with another catastrophic conversation.  When we arrived at the NICU we found out that Zoe did not have a good night.  The lights and sounds were too much for her and she was wearing a mask to help keep the stimulation down.  She was now on a ventilator.  They had tried to put in a belly button line but were unsuccessful.  We had the shit scared out of us when we saw her Wednesday morning.zoe 2Shortly after Hubby left it was decided that they were going to transfer Zoe again.  They were very concerned about the fluid and her heart and thought she may need either a heart transplant or a procedure called ECMO.  We weren’t there yet, but neither of these procedures could be done at St. Mary’s, so it was decided once again that it would be prudent to move her now while she was still relatively stable just in case.  They were going to send her to the University of Virginia, which is one of the best children’s hospitals in the country.  This hospital was an hour and 40 minutes from us, so that meant that I was going to have to stay.  I went home, pumped, packed, said goodbye to my other kids yet again and got back in the car.  I arrived at UVA around 8 pm and waited for an excruciatingly long hour while they finished up the transfer and got her settled in.  I posted this on FB in the meantime, “So I don’t usually like putting my life on FB but Zoe needs all the help she can get. We’re at our third hospital in as many days and things aren’t improving. I have complete and total faith that she is going to pull through–she comes from a long line of strong family members (starting with her sister!!) but anything that will expedite the healing process is helpful. So if you could take a moment to send some positive thoughts/prayers/vibes/whatever you do her way we’d all greatly appreciate it! THANKS!!!!!!”

I spent the night in the hospital in one of their “rooming in” rooms.  I found out later what those rooms are for, and had I known their actual purpose I would’ve paid for a hotel instead. One of the resident NICU doctors and the cardiologist on call came in to talk to me about Zoe.  They said the transfer went well and they’re just going to monitor her overnight.  Once the rest of the team was there in the morning they would make a plan.

The days are all blending together.  I can’t even remember what happened on Thursday.  I know that I got a spot at the Ronald McDonald house, which was a blessing.  I had heard of the organization in the past but had no idea what they did.  Turns out it’s an organization that keeps houses close to large hospitals for families to stay for a small fee (only $15/night, and even that is just a requested donation) when their loved ones are in the hospital for long periods of time.  This one was two blocks from UVA.  It could house 19 families.  There was a giant communal kitchen, a living room, a dining room, a basement with a playroom and laundry facilities, and a fenced in back yard.  Each room has their own locker for dry goods, a fridge shelf and a freezer box.  Plus they provided dinner every night for everyone.  I can’t tell you how nice it was to have that to go back to every night–a place to get away from the hospital with actual beds.  They are a wonderful organization and an absolute godsend in these situations.

I spent all day in the NICU on Thursday.  I was there when the doctors rounded (I certainly hope that you never have to experience anything like this, but if you do rounds are the best thing to be around for) and they spoke with me afterwards.  I think at this point things were grim and they were assuming they would have to put her on ECMO.  This is what I sent to my friends at 9 pm that night:  “So we’re trying not to get our hopes up too much and I’m cautious about even saying anything because I don’t want to jinx it, but Zoe had a good day today. It definitely didn’t seem like that was going to be the case. Around noon they were going to put her on something called Ekmo (sp?). Basically what happens is they take all of the blood out of her body, run it through a mechanical heart and lungs to oxygenate it and clean it and then put it back in her body. Sounds super safe, right?? The process takes anywhere from 1-3 weeks and there are obviously a shit ton of concerns and risks. They decided to go ahead and try one more medication first and it’s working! The level of ventilation has gone down and the O2 they’re giving her has gone from 100% (which is where it’s been for the last 2.5 days) down to 46% in a matter of hours! We breathe 21% oxygen, so that’s the goal percentage. (I’m learning so much lol). So that’s all very good. The Ekmo has been pushed to the back burner from now. However, they may still have to do it. The problem is that the stuff they need to do to fix all the fluid she has (she’s gained 3 pounds, all fluid!!!!!!) will hurt her heart, and the stuff they can do to fix her heart will make the fluid worse. So they finally found a medication that’s helping to treat both. But since her fluid levels are so bad, they may need to end up doing the Ekmo just to remedy that problem.  It’s just nice because we’ve talked to three different sets of doctors–surgeons, cardiologists and NICU–and for once they’re all telling us the same thing, are on the same page about treatment and are explaining everything the same way. So I’m finally beginning to understand what the problem is. Getting moved to this hospital was the best possible thing.  Either way it’s still going to take awhile and the doctors are all making sure to stress that they’re happy with these results….BUT.  It was a super hectic day today. Especially since we went from one extreme to another. I wanted to wait to see if the new medicine was going to work before I sent you an update, and then it was working so well that I didn’t want to leave her side!”

At different points between Wednesday and Friday nights they added a bunch of stuff to her.  The poor kid was never left alone for long before they needed to attempt another line or mess with her medications trying to make her stable.  After she was transferred they put her on a new type of ventilator that worked by vibration, which was pretty cool. zoe 4Her belly button line was now in (I think they managed to get that at St Mary’s). zoe 9She had an IV in her left foot where the majority of her medicines were being pumped through.  She was usually on 7-8.  The highest number was 10. zoe 7zoe 5They put in a scalp line sometime Thursday.  IMG_0178They tried and tried for a PIC line on Friday but were unable to get one.  The nurse practitioner let me come back while she was trying and I wish she hadn’t.  It was completely traumatizing to watch her stick that needle into Zoe’s head over and over and over again but she just couldn’t catch the vein.  She was sedated and on pain medication, but she still twitched every time that needle went it.  Not something that a mother should watch.  And even more importantly, not something that a baby should have to go through.  Zoe ended up having a central line placed in her left leg on Friday by the surgeons because they needed more access.

She received a chest X-ray at least once a day to monitor the fluid in her lungs. zoe 3zoe 25I can’t even remember when Hubby came up.  Thursday morning I think?  And then things were going in the right direction, so he stayed until Friday afternoon.  I posted this on FB Friday morning:  “Zoe is still in very critical condition but they found a medication that is helping and a very serious and scary procedure has been pushed off for the moment, so keep your good prayers/thoughts/vibes coming! They’re working! Either that or the pony I promised her if she gets better…”  I had told Zoe that if she pulled through we would buy her a pony.  Or whatever else she wanted instead.  Hubby wasn’t on board with the idea at first, but by the end even he promised her not just one, but two.

And then my Friday evening friend update:  “Okay. Today went well. The fluid in her lungs is starting to go down and her oxygen and ventilation levels are excellent. She’ll stay on the ventilator until the rest of her is better though, so she doesn’t work too hard by having to breathe on her own. The miracle medicine they gave her yesterday is still doing its job. Now the problem is the fluid in the rest of her. She is ridiculously puffy. The hope is that she’s going to start peeing it out. However her urine output hasn’t been that great today. They started her on a few medications that will hopefully help the urine output without harming anything else. They’re tracking her urine every hour and are keeping s close eye on it. If it doesn’t remedy itself then they’re going to have to do the ECMO. I’m not sure what kind of timeline they have to wait and see…I don’t think very long. My guess is they’ll probably know by the morning if this route will be successful.  So she now weighs 15 pounds. She’s gained 5.5 pounds in fluid. She looks like a sumo wrestler lol.”zoe 8Our world came crashing down for the third time Saturday morning.  The plan was that Hubby was going to stay home until Sunday and then come out with his mom and the kids so they could finally meet Zoe.  Well, not C.  He was going to stay far far far away from the NICU, haha.  But J was itching to meet her sister and things were going well so we figured now was good time.  And then the doctors rounded.  I was told that the surgeons, the NICU doctors and the cardiologists were all going to have a meeting to see if anyone had any brilliant epiphanies on a medication that would work for Zoe.  And if not this was the end of the line.  That there wasn’t anything more they could do for her.  This was completely not what I was expecting to hear.  And I was all on my own.  And not only was I on my own, but now I needed to call Hubby and tell him the news.  And then he was going to have to get in his truck and drive an hour and forty minutes.

I’m not a religious person.  Before this, I was apathetic about God; I didn’t believe or not believe.  I don’t attend church.  Don’t pray.  After I got off of the phone with Hubby I went to the chapel.  I knelt on the kneeling thing (I told you, not religious!), clasped my hands and just said “please” over and over and over.  I couldn’t get anything else out.

Hubby arrived around 1230.  By that point the doctors had their meeting and decided to try one last medication.  And so far it was working.  It was keeping her heart rate down while increasing her blood pressure.  Things were turning around.  The key now was that she needed to start getting rid of all of the extra fluid.  She needed to pee it out.

I sent this update to my girlfriends at 8 pm Friday night: “She’s been relatively stable now for about 7 hours. They seem to have found a combination of meds that is working, but they’re literally taking it hour by hour. I asked the cardiologists if it was okay to be feeling hopeful and he said yes, that he’s feeling better too. So we are absolutely nowhere near out of the woods but at least we’re not at the end game like we were this morning. The meds could still stop working at any point.  They’re going to completely stop trying to treat the fluid mess. Although it’s uncomfortable and needs to go, it’s not life threatening at the moment. That was the problem yesterday–she’d be stable so they would lower the doses to give her medication for the fluid, and then she would start to crash and they’d take her off of that medication and put her back on the other stuff. So now they’re going to stop treating the fluid and concentrate on getting her stable for at least a full day before doing anything else.  But we’re staying positive. And when she turns this all around and I become a religious zealot, you can blame it all on Zoe.”

And things continued to go well.  She had a good night Saturday night and a great day on Sunday.  In the morning I wrote, “They ended up putting her on the lasik last night (the medicine to help bring down her fluid), which I wasn’t too thrilled about when the nurse first told me since they said they were going to wait a nice long time to make sure she was completely stable. But even on that last night, she remained stable. So it must’ve been the right call! We’ll see…” and “Good news from both sets of doctors! Her numbers are stable so they’re going to leave everything exactly how it is now. The goal is to get her to stay just like this!”

 Things were going so well that I decided to go home for the night.  I left the hospital around noon and spent the rest of the day with J and C.  Had I had any clue what was going to happen I never would have left.  I regret that more than anything else.  I could have had another 12 hours with my baby girl but instead I spent it with the kids that I get to see every single day.  For awhile I felt guilty about that but I released myself from the guilt, knowing that it wouldn’t have made a difference.  I had to.  It would’ve killed me.  She didn’t know I was there and my leaving had nothing to do with the final outcome.  And it’s not like I left her alone; Hubby was still there.  But even though I don’t feel guilty about it anymore doesn’t mean I don’t regret leaving with every fiber of my being.
And then our lives were shaken for the final time.