Tag Archives: Rainbow baby

We’ve Crossed the Line

On February 1st Perry, my youngest rainbow baby officially became older than her brother Benny who passed. Now both of my rainbows have outlived their brother.

I’d be lying if I said it wasn’t tough. Part of me sighs in relief that Perry has made it past 18 months and the other part of me is sobbing inside. That perfect little boy will forever be frozen in time at a year and a half. It nearly breaks me.

Time makes no sense and just keeps moving forward, further away from my Benny. His two younger siblings will never hear his laugh, pull on his curls or touch his dimples. They will know him in memory only.

I am trying to understand what that looks like to them. Benny will forever be this idea, something that existed way before them. I only hope that we can show them how real he was.

As the years have passed, Darcy has forgotten. She was so young when Benny died and the memories seem to be fewer and further between. It’s heartbreaking. A lot of the time it’s as if we are reintroducing her to him as well.

Time is the enemy and the hero all at once. As cliche as it sounds, it can heal. It can breathe joy back into a broken heart. We’ve been lucky to have the other three. We’ve been lucky to have each other. I just wish we could have it all

Your mama is missing you tonight buddy. XOXO

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When Your Rainbow Baby Gets Very, Very Sick

I don’t know where to begin as it seems that at least one of us has been sick at any given moment since the middle of December. You name it, we’ve had it. And we’ve been sure to share with each other. It’s been like a game of Dominoes over here, each day a different family member will fall ill.

We very narrowly slid into Christmas morning somewhat healthy. We had all come down with the dreaded stomach bug the week prior and it seemed all of our cheer leading up to Christmas was instead directed into doing extra laundry and hoping that we would be healthy.

My littlest Rainbow, Perry seemed to be getting a cold, a fever and a stomach bug all rolled into one. She was miserable and just not herself. About two days after Christmas I noticed she was belly breathing, which of course freaked me out. As a mom whose lost a child, any sickness freaks me out. Well, to be true, most anything concerning any of my babies freaks me out.

So there I was trying to decide what to do. I spoke to the nurse practitioner because our pediatrician was out of town. I was scared and I didn’t know what to do. I hate the idea of going to the hospital. The best pediatric ER in the area is where our Benny died. I have avoided that place like the plague for the last five years. Something about Perry seems to make me confront things that I don’t want to because my first time back at that hospital was when she had the flu at 6 months old last February. It was awful. I hated every moment of being on the hospital campus. I did everything I could think of to keep myself distracted and my thoughts away from that day in 2013.

I try not to let my grief make decisions for me, but I’d be lying if I didn’t say that every fiber of my being did NOT want to go back to that hospital again. And then I felt guilty. Would I deny my child care because I didn’t want to bring her? So of course I go around and around, thoughts swirling as I try to decide what to do. Perry’s health and my fear for her won out.

They listened to her, gave her some Tylenol, took a chest X Ray and sent us home with a virus. It didn’t feel right. She was lethargic and coughing so much and couldn’t keep anything down. But we went home and I felt a little better. Things just had to run their course.

The next day of course her older brother starts to complain about his ear hurting – after the doctor’s office is closed. So we load into the car and head to Urgent Care and I figure they should probably check out Perry because she still isn’t any better. A double ear infection for brother and Brochilitis for Perry. We finally have some medication and I breathe a sigh of relief hoping this will work.

It doesn’t. The next two days she fights to keep her meds down. I’ve spoken to the Urgent Care doctor and our nurse again. Perry’s sleeping even more and we’re growing increasingly concerned. My mind is like a pin ball machine, pinging through all the different options – Am I overreacting? Should I take her back to the hospital? Will whatever this is just run its course? If I bring her back to the hospital will they just send us home again? Won’t she be exposed to even more germs in the hospital?

Parenting is hard. Parenting after child loss is like walking on a tightrope blindfolded on your tiptoes with your arms tied behind your back. You cannot keep your balance. Up is down. Right is left. Making decisions is near impossible because you are so damn scared to make a wrong one. And when you think that one of your babies isn’t ok, it’s even more terrifying.

This was one of those times when instincts kicked in. Even though I didn’t want to go back to THAT hospital, even though it was Sunday night and even though I figured they would send me home, I packed her up and off we went again to get checked out. God damnit, I was going to be THAT mom, paranoid and obnoxious, but at least I would be able to sleep at night knowing my baby was ok.

When you get to the ER and they tell you they will get you a room immeadiately, it’s not usually a good sign. Especially when the waiting room is full. Perry didn’t even fight them as they hooked her up for pulse ox readings. She took a breathing treatment and had oxygen blowing on her face. The doctor listened and said she sounded good, just Bronchitilitis. We would probably stay the night and could go home in the morning. I was so thankful, the kids would never even have to know we were gone and wouldn’t worry. Things we’re finally looking up.

Then the beeping started. Perry was having a coughing fit. I assumed it was our room, but no one reacted at first and I was on a bed with a toddler strapped to a whole bunch of monitors on top of me. There wasn’t much I could do. Someone came running into the room. Then another person and another. It became a flurry of activity. Perry had set off the heart monitor. I tried to stay calm. I was hearing words like ‘high flow oxygen’ and ‘pedi ICU.’ I called my husband and told him to get to the hospital. Something was wrong.

I sat there helpless and terrified while doctors and equipment were flashes in my peripherals. This felt all too familiar. I was even in the same damn building. I didn’t know what to do. The nurses and doctors were tending to Perry as I sat there holding her frozen.

I remembered the ambulance ride to the hospital after the accident. I remember the paramedic looking at me while I was shaking in shock. He told me I had to hold it together. He told me that if I lost it they would take me away from Benny when we got to the hospital. I just kept remembering his words over and over as I clung to Perry trying to wrap my head around what was happening.

They did X Ray’s and an EKG. At this point they really had no information for me, they weren’t sure what had happened, just that we were headed to the ICU and that she had to be on oxygen now. They put in an IV and hooked her up to several other monitors. It seemed like an eternity sitting there and waiting. Hoping for some answers.

They wheeled us up to the ICU where my husband was waiting, thank goodness. We moved Perry into a crib and they did chest PT because they needed to loosen the mucous in her lungs. The poor thing was so worn out at this point, she let them do whatever they wanted. This was not normal Perry behavior.

It was jarring to see this little girl hooked up to machines and monitors just laying there. This little girl who is so in spirit like her late brother. This little girl who was almost the exact same age that he was when he passed. It was a lot for us to take in.

I didn’t sleep that first night. Firstly because we were cramped on a mini couch and secondly because every beep of the monitor set me off. My adrenaline from earlier was still pulsing through my veins. My baby wasn’t out of the woods yet. I tried very hard to focus on the fact that she was in the best place possible and had amazing caregivers looking out for her. I just couldn’t forget that we had left that hospital 5 years ago without our son.

Finally, the next day she was diagnosed with pneumonia as well as a slew of other viruses. They were able to give her some medication to help out a bit. I rang in the New Year in a hospital bed snuggling Perry. This was not exactly what we had planned.

We spent 3 nights in the ICU before we could head home. We had to tell the kids and of course they came to see Perry too. It’s been hard on all of us. But the best smiles from Perry were when they visited. She lit right up (clearly not in this picture).

For 4 days I lived inside of the building where I said good bye to my son. There were so many emotions, so much anxiety and so much stress that I can’t even begin to articulate. But there were signs too.

Signs that our Benny was watching over us.

Every moment we were there. Thanks buddy.

Rainbow Baby Woes

I hate that feeling that something bad is going to happen. Because the unthinkable has already happened to us, it shouldn’t again, right? Or is it because it has happened to us that I know how quickly things can fall apart?

A sniffle, a bump, a fall. I panic. Instantly. I Google everything to make sure I watch for symptoms of what ‘could happen.’ There’s always this little niggling voice in my head saying something can go wrong. They can get sick. They can get hurt. They are not invincible. Your children can die.

Maybe it’s because the baby is so young still, I now worry the most about her. Maybe it will get better once she crosses the 18 month mark. There are three of them to worry about and it’s exhausting sometimes.

I can’t sit here and say, ‘oh, that will never happen to us,’ I no longer have that naivety. I miss it. The pure ignorant bliss of thinking my children will always be ok.

I wish I didn’t over think the way I tend to. I wish that my family didn’t have to know tragedy. I wish that Benny was still alive.

 

Point of No Return

I remember when Darcy was born how important it was to me that I get her on a good sleep schedule.  I was so worried about being able to get back to work and handle an infant.  I worked with her during my measly 12 weeks off to try and get on a schedule.

We did ok.  I made all of these rules, like no sleeping after 5, we adhered to a strict bedtime schedule of bath, swaddle then nursing in a quiet, dark room.  I was worried about spoiling her.  I was concerned that I was never going to get a good nights sleep.  And then I got laid off.  Oh, the irony!

Being on a schedule and having a routine definitely helped with all of my kiddos.  I look back now though and laugh.  I was making myself crazy trying to control the sleeping habits of an infant.  Why?

I stressed out over the lack of sleep (as if you can control it).  I would look at nighttime as an endless hell that must be endured, sitting up for hours feeding an upset baby.  I had it in my head that successful mommying=happy sleeping babies.  Some twisted idea we all get as every single person asks you ‘how is the baby?  Is he/she sleeping through the night?’

I found with Benny that I was way more relaxed when it came to sleeping schedules.  Maybe it was just his laid back personality, or the fact that he nursed himself full in 5 minutes, but he was a great sleeper!  And all without my militant sleeping rules.  I felt comfortable bringing him into bed in the wee hours of the morning and snuggling with him (this was before i knew all of the dangers of cosleeping).  I felt more easy going and confident in my mommying abilities.

I don’t know if it was loosing Benny or just because Fletch was, well, Fletch but sleep became hell again.  Truyh be told, it was probably a combination of both.  I was super stressed all of the time of screwing up, or of something bad happening.  Child loss changes you as a parent.  Anxiety over took common sense and I felt like a novice mom again.  I was scared to bring him into bed.  I was scared for him to sleep alone.  No matter what I did I was scared.

And Fletch was hard work!  He didnt want to be put down when he slept, ever.  I put more miles on my glider with that kid than any other.  He always knew when he left your arms and would wake right up.  It was like he had he same insecurities that I had and was nervous being too far away.

And now there’s Perry.  We should be seasoned at this whole sleep thing by now right?  Wrong!  The 4 month sleep regression hit us hard and we’ve been reeling ever since.

I’m tired of being scared.  I’m tired of being tired.  I’m done with being stressed about sleep.  We’ve entered the point of no return.  A point where the old me with just one baby would have freaked out.

I have a toddler and a ridiculous work load.  A tween (my God!) with a ridiculous amount of activities.  I’m already tired enough and scared enough to not sleep because anything you do nowadays as a parent is wrong and judged.

If I fall asleep nursing, I could drop her.  If I pull her into bed, Parker could roll over. We have a friend whose infant fell out of bed and cracked his skull (he’s fine thank goodness, very healthy little guy) and I’ve read just about every article on people smothering their babies on accident. No win situation.

So now, Parker sleeps in the guest room and I get a queen bed to myself until Perry inevitably wakes up in her bassinet (the second I walk into the room, I swear she can smell me).  She has her side and I have mine.  Shes not rolling yet and has a nice buffer to keep her from rolling off the bed.  She sleeps, I sleep.  And I love every damn minute of it.

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I love hearing her breathe close by.  I love being able to relax knowing she’s close.  I love letting go of a little bit of that anxiety.  Do I miss Parker?  Sure.  A lot.  But I only get baby Perry for so long.  She’s nearly 6 months old.  All too soon she’ll be mobile and this bed sharing will be a thing of the past.

There are no guarantees in this life.  I want to hold onto whatever I can for as long as I can.

 

Today

Today was not a good day.  The further we walk down this path to home ownership, the more painful the journey.  Someone please stop this ride we’re on, I want to get off.

We got the green light that we are building a house.  The plans are complete, the finishes are picked and construction is set to begin soon.  A totally new chapter in our lives.

And then we got word today that our temporary rental has sold and we have to move.  Temporarily.  Again.  Before the final move.

I bawled my eyes out over a bag of donuts while little Fletchie kept asking me what was wrong.  I tried so hard to explain that his little life would once again be interrupted.  My heart was breaking because he finally stopped asking to go home to the Chester Street house and now calls ‘the big brown house’ home.  He’s finally settled.  And now we have to leave.

We were finally to a point where Darcy’s room was unpacked enough for her to have a friend sleepover.  She had settled in a bit.  I’m sure the idea of moving was an adventure, but I don’t think she ever bargained for this.  We’ve taken this kid out of the only home that she ever knew.  She grew up on Chester Street and has the most memories there.

I was finally starting to put away some of my mommy guilt for this whole mess that we’re in.  I was feeling like, ‘ok, we got this!’. Only now we don’t.  By a long shot.

This whole journey was terrifying enough without all of this extra crap.  It was hard enough to walk away from Benny’s home.  It was emotional enough to acknowledge that it was time for us to move forward.  And now I’m beginning to wonder if this was all a mistake?

And oh sure I’ll probably feel differently in July when this is all (hopefully) over.  And I’ll probably ‘look back and laugh’ (oh my God if one more person says that to us!).  But right now, right at this moment, I’m upset.

I’m upset that it seems like everything has to be so much harder for us.  Because the grief that we carry every damn day isn’t enough.  Because the amount of times that I question myself as a parent isn’t enough.  Because the amount of anxiety that I have in any given situation with my children isn’t enough.  ‘What doesn’t kill you makes you stronger,’ well screw that!  Enough already, I’m done!  Here I am waving the white flag screaming I SURRENDER!

I give up.  I am desperately tired of all of this.  I know that home selling/buying is supposed to be stressful, but this is beyond anything I ever imagined.

So Universe, enough.  We’ve had it.  Please back off.  Please stop making a tough situation harder.  How are we ever supposed to deal with any of our grief and make some peace with it when these other life issues rear their ugly faces?  I still haven’t really come to terms with leaving Benny’s house yet because it’s been such a whirlwind.  I can only process so much.

We knew moving would be hard.  We expected it to hurt.  Not like this though.