Loss

Empathy #captureyourgrief

Day 6

So, I wracked my brain trying to come up with the best thing to write about empathy. I kept thinking about what others have done, but nothing felt “right”. Suddenly it hit me – it’s not about others’ actions but my own.

I have become a different person since loosing Zeke. I’m more cautious about life – I follow rules, I tend to overreact to any sort of sign of illness Noel may show, I have a hard time falling asleep, I’m anxious. But….I’m also listen more, I tell people I love them more, I try harder to understand where people are coming from, I can empathize better.
[Also, my examples below are about how I relate to those experiencing child loss, however, empathy is important to show when someone experiences ANY type of pain.]

I have friends who have lost children before me, and I was always sad for them but I made the oh so common statement of “I can’t imagine”.

Now I can.

Having lost a child causes me to pray harder for friends who have seriously sick little ones, to reach out to those who have suffered a loss, to be willing to connect in a way I never would have thought to before.

I HATE that children die, that parents have felt and more will feel this pain. Loss is a club that no one in it wants anyone else to enter. But when it happens they are often the first who understand, who won’t say trite things to maybe try to help, who will listen and love you. I pray often the God will allow me to show others who are walking the path I’m on empathy, compassion, and love. That I can help them the way others have helped me.

I was reading my Bible the other day and came across a story I’ve read and heard many times. Its the one where the two moms come to Solomon, both claiming to be the mother to the same baby. He then says to cut the baby in half and one woman say ok while the other begs to keep the baby alive. Solomon knows she is the mother and the baby goes home with her.

For the first time in my life I wondered about that other mom. She had taken the other woman’s baby after finding her own child dead. I wondered if she had been suffering from PPD, if she was just so overwhelmed with shock and grief she didn’t even know what she was doing – that she had convinced herself the living baby was hers. I wondered if she just couldn’t process it and thats why she said fine – or maybe she just wanted to not be the only one in pain. I wondered what happened to her after the “trial”.

I am in NO way condoning what she did, but I do remember wanting another baby SO badly in the months following Zeke’s death. Not to replace him, but I had all this love and dreams and plans and then suddenly my arms and home weren’t as full as they were supposed to be. I poured myself into Noel and the goal of getting him home.

I’m not perfect…no where near it in fact. I’m a tired, broken person, but, oh I pray that I will be strengthened from this experience and that God will be glorified. I think that meeting others in their trenches is part of that. That feeling with them is a part…a hard, exhausting part, but an important part none the less.

Loss

The Unspoken #captureyourgrief

Day 5

There are things that happen after your baby dies that no thinks to talk about and while they aren’t “pressing” per say need to be done.

Shopping for an urn and picking a funeral home – I had no clue how to go about this. We were handed a list of places (honestly I don’t even remember where that list came from) and had to go from there… I remember wishing a could just have a checklist to follow. [Side note] it sucks that there are prettier urns and more selection for pets than there are for babies. It took so long for my husband and I to agree on one – we actually had it custom painted in the end.
The registry – I had twins and it reflected that. When we lost Zeke it occurred to me I would have to go through and delete things so it reflected our new status as the parents of only one living baby.
Facebook – I had joined a bunch of groups for twin moms. One about breast feeding twins, another about natural twin births, a few about baby wearing twins, etc. All those posts would show up in my feed until I left each one…wanting so badly to tell everyone how grateful they should be, but leaving silently instead

It was all harder than I imagined.

Also, I find myself afraid to comment sometimes. I have a lot of knowledge about twins and twin related gear, but I hold my tongue when people ask (not ask me directly, but ask the general public/facebook post/a group/etc). I worry that they will think my opinions have no merit or that I’ll just be a reminder that things could go south at any moment. So I stay silent – letting my thoughts go unspoken.

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Loss

Support Circles #captureyourgrief

Day 4

I have been so very fortunate to have so much support. One of my first memories after having the boys was SO many people from our church showing up with gifts and snacks. My best friend was the first one to see our boys besides us (and the nurses and doctors).

So much of that first month is a fog, but I remember I was discharged about the time Zeke had his pulmonary embolism. Everything started looking so bleak and I wasn’t quite functioning. We went home to friends there who had cleaned my house, taken care of our dogs, filled a deep freezer with food, and cooked some for us. I’m not sure I have ever felt so loved. I lost it and my friends held me while I cried.

Not only that, but I was living at the Fisher House by the hospital for the first four weeks. My mom came into town and stayed with me while my in-laws came and stayed at our place to help out. Having the emotional support from family was needed and good.

I swear food is a love language. We had so many people – friends from church, Paul’s work, etc – bringing food. I probably wouldn’t have eaten if it weren’t for them (and I was pumping so food was very needed). I’m so grateful for the support Paul’s work showed him – I needed him by my side and the boys needed him and they made sure that happened.

I had support from friends online. We had people from Paul’s gaming community sending money (much needed for gas driving back and forth to the hospital) and my friends from Instagram sent flowers to Ezekiel’s funeral and gifts. I was amazed at the love and kindness people showed. ❤ I’m not sure words could ever convey enough thanks.

Our church continued to be awesome – we had a full house for Ezekiel’s funeral and you could feel the love. After he passed they continued to pray for Noel and offer us support as we continued our daily treks to the hospital. They threw an awesome shower for Noel and included multiple touches in Zeke’s honor and a few gifts for him (and so many things for Noel – I felt much more prepared after the shower lol)

I’m also in a support group for parents of twinless twins on facebook. I have found a lot of validation here – it’s nice to be able to share with people who understand exactly what you are feeling.

Also, all of our boys’ nurses and doctors. They get it – they are there fighting for your babies with you. The people who cared for our babies are some of the most amazing people I will ever meet. We had some pretty special nurses – you could tell they loved our kids. It made it slightly easier to leave my babies at night knowing they were there. We even had a few come to his funeral. Seeing them there meant so much. I still keep in touch with quite a few of them and so appreciate when they mention Zeke – he is still so loved.

I’ve probably forgotten to mention something, and for that I’m sorry. I just want everyone to know how truly grateful I am and that nothing anyone did for us was taken for granted. ❤

So much love

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Loss

What it felt like #captureyourgrief

Day 3

A phone call.

It’s amazing how that’s all it take to turn your life upside down.

Zeke had been so sick – first a bilateral grade 4 brain bleed, then a pulmonary embolism, then perforated bowels, then a liver stroke – it was a horrid downward spiral. We received many calls…

“Ezekiel’s crashing, you should come now”

I swear they were always at 2 am.

We’d arrive as they were resuscitating him wondering if this would be the last time but praying it wasn’t. Praying so hard that God would give us another day with our precious baby that He would give the doctors wisdom and that He would give us strength.

I still pray daily I never have to watch people force my child to breath or hear those awful beeps from the monitors again.

It seemed to take 10 minutes to stabilize him the first time, a few days later it’d be 20, then 30, then 45. The night he passed I swear they worked for nearly two hours – trying everything possible to restore life to his tiny body while giving us updates as we watched tears streaming.

I remember someone handing me water.

I kept shaking my head – trying to deny what my heart already knew.

About a week or so before April 6th, I started feeling that the end was near. We told the doctors and Zeke that we would fight as long as he did. We prayed for God to let us know, give us peace, and He did.

The moment came when we knew it was time. They carefully wrapped my beautiful boy in his blanket I had made him and handed him to me. I held him for the first and last time as his sweet soul left the earth.

All I wanted in that moment was for him to know how loved he was. Paul and I whispered “I love you” over and over as we kissed his sweet face. He quickly slipped into the arms of Jesus.

I have never heard my husband cry like that…or myself for that matter. We wept from the depths of our souls together as we lost a part of us and our lives changed forever. We cried until we couldn’t, held him until we could no longer stay awake. (we got the call at 12:30 am – not yet having gone to bed)

We gently bathed him and swaddled him and prayed. Pictures were taken, casts made, items collected that I will forever treasure. We told him we loved him for the last time.

Then we were left, trying so hard not to drown in our sorrow. Needing to be “strong” for Noel. Not knowing what to do and yet having so much to do at the same time. Wishing so many things were different, feeling angry that we couldn’t keep both our babies while struggling so hard to continue to praise God for giving us both boys, for Zeke’s 25 days, for salvation and eternity.

Zeke passed away the morning after Easter. The day we are still and remember God’s sacrifice and loss of His own Son , His resurrection and the promise of life was Zeke’s only ‘holiday’.

How amazing is that.

I still cry and wonder what it would be like to have two adorable kids running around. I wonder if Noel misses his brother and how this may effect him. I’m torn between wanting to speak Zeke’s name to people I know and not making them uncomfortable. My heart is often overwhelmed with love when others talk about what he meant to them. It helps to know he isn’t forgotten.

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Loss

Who They Are #Captureyourgrief

Day 2

Ezekiel Quinn DeJarnette

Ezekiel means “God Strengthens” – this was a promise we clung to and prayed over him. God did indeed strengthen him – though not here on earth like we wished, but in heaven. He also had given Paul and I strength through being Zeke’s parents.

Quinn means “Wisdom” or “Counsel”, also appropriate as we sought wisdom through counsel on how we should proceed when he became so ill. It gave us comfort knowing the God was in control and brought all our doctors to us.

My son, my firstborn.

He was so tiny, but our biggest at 1lb 13oz. He had this adorable, pointy nose…it was one of his few features that didn’t become swollen towards the end. His hair looked like it would have been curly if it was longer. We didn’t see his eyes much, but I will never forget the moment we shared when he looked at me and squeezed my finger. It felt reassuring in a way – I think my soul knew before I accepted he would not be with us long. God is good to prepare us before we even know what is going on.

He was our quiet fighter, never making a sound. He fought for each of his 25 days he spent with us – his sweet soul staying on this earth longer than many predicted.

He is our son, a nephew, a grandson and great grandson. Noel’s brother and more so, his twin.

Zeke is still so loved and so missed. I wonder often what it would be like to have two little 18 month olds running around. He is my reason to fight for the tiny babies – to walk to help research to end prematurity and help those born prematurely come home and lead a normal life. He has renewed my beliefs in life and that ALL life is worth living and fighting for. I have always been pro-life, but now even more so.

He inspires me to speak. To talk about him and connect with other parents who have lost children.I tell people I have two children, for though he is not here, he will always be my baby. Having child in heaven does not mean I don’t parent them – it is just parenting differently. In turn, he has inspired others to talk about their losses.

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Loss

Sunrise Dedication #Captureyourgrief

Day 1

Have you ever heard of a sunrise baby?  Most people have heard of rainbow babies (babies who are born after a loss) but have never heard of sunrise and sunset babies. This is the term often given when a parent has multiples (twins, triplets, etc) but loses one or more baby(ies) while other(s) live. The living child is the sunrise while the child who has passed is a sunset. This gives even more meaning to this prompt for me…as I attempt to type, Zeke’s twin brother Noel is doing his best to destroy my kitchen. 😉

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I suppose that is often my struggle, trying to find the balance between my grief for Ezekiel and joy for Noel while not weighing the two emotions against each other.

Also, I’m rarely up for the sunrise these days, and well, even if I were they are hard to capture up here in the pacific northwest. So instead, I’ll just share a picture of a sunrise I painted a few weeks ago.

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The words on it are from one of my favorite worship songs. In fact, we sung this at Zeke’s funeral.

I remember singing this song a few years ago – back when we so desperately wanted to get pregnant and it brought peace then… Now I sing it to remind myself that God is good, He is in control, and He deserves ALL our praise all the time.

“The Lord gives and the Lord takes away, blessed be His name” {Job 1:21}

I sing it when I feel overwhelmed by life and when I am angry with God (yes, a year and a half later I still have feelings of anger, of unfairness, and frustration)
I sing it when I don’t have the words to praise how I want to.
Mostly though, I sing this song when I think of my little Zeke – I praise God for his life and that I was able to be his mom and for the fact that he knew so much love from so many people in his time here on earth and continued love though he is in heaven. ❤

Preemie · Pumping

Our Breastfeeding Journey

Oomph.

 

 

I haven’t blogged in nearly a year.

So much has happened since last october and I don’t even know where to begin. I’ll get around to writing it all down…someday…hopefully. As I’m ready. As I heal.

However, since it seems to be Breastfeeding week, I’m going to start there. In the middle of my story…

I’ve been seeing this graphic floating around instagram and facebook with ‘prompts’ for BFW2015 and I had thought about posting little things throughout the week about our journey, but I feel like this post will sum them many of them up nicely, though I may post a bit more throughout the week.

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Hi. I’m Sarah, and I exclusively pump.

I may not be breastfeeding in the traditional sense, but my body is providing food for my baby. I have to stop multiple times a day to collect said food. I then must turn around, fortify it, and feed my sweet child. We have tried to nurse, but it often ends in a grumpy & hungry baby and a frustrated momma who still needs to pump and make a bottle. This works for us, and I’m glad.

The first question on the graphic is ‘Why do you breastfeed?”  I’m glad you asked.

I pump because my sons were born prematurely at only 24 weeks gestation. They were both intubated and had feeding tubes for a very long time – there was no way either could have gone to the breast without it having devastating effects.

I pump because it was the only thing I had control over for so, so long. As I sat in my hospital room and eventually every day by their isolettes, my alarm would go off every two hours and I would pump. Before I could touch them, I could pump. Before I could hold them, I could pump. Before I could take him home, I could pump. So I pumped.

I pump because studies have shown that breast fed babies have a lowered risk of getting NEC. NEC is so scary & if I could help their chances against even one life threatening thing, I would. I remember spending hours hand expressing colostrum into a syringe so I wouldn’t waste even a drop.

I pump because it helps me feel like my body didn’t completely fail my babies. After going into active labor at 24 weeks with no reason why, it is hard not to feel that way – justified or not.

I pump because it helps other babies. I have been able to donate 500oz to a few other moms.

I pump because even though my son is now home, he is still a preemie. I want to give him the best, give him antibodies, vitamins, and all the other goodness that is in my milk.

I have been EPing for almost 5 months now. I’m hoping to actively pump for a year and then use my frozen stash, but I will be happy with however long we make it. Pumping, much like nursing is hard & time consuming. You learn much about yourself and what you can do in the process.

I have pumped in target, in movie theaters, friend’s houses, and the car. I have spent many pumping sessions crying, praying, pr passing out from sheer exhaustion. I have pumped while waiting to go into the NICU, pumped when I needed to be alone, and pumped around friends. It has become such a huge part of me.

I remember asking to see my babies, for a pump, and water as soon as I could after my c-section. Our nurse was a saint – I’m pretty sure I asked over & over again…But hey, I got ice, they wheeled my bed into the NICU so I could see my boys, and there was a pump in my room, so my hounding worked!

I remember feeling discouraged because it seemed like the pump was doing nothing.

I remember holding my breath when I would turn the pump on because it hurt so much.

I remember when it stopped hurting.

I remember watching my output slowly increase.

I was actually pumping when the NICU called us to say Zeke wasn’t doing well and that we needed to get there.

I remember not pumping for hours after that, but needing to. I didn’t want to leave him for something that seemed so trivial at that moment.

I remember being amazed that my body could still make milk after all the tears and energy I had just spent when I finally sat down to pump.

I remember hating my over supply because it reminded me I was supposed to be feeding two babies instead of one.

I remember accepting it when I realized it would allow me to feed Noel BM for longer.

I am grateful my body responds well to the pump. I am grateful for my friends who have allowed me to store milk in their freezers when I ran out of room in mine. I am grateful for my best friend who showed up at the hospital with pumping accessories in tow ready to help me learn. I am grateful for all the encouragement the NICU staff gave me during my journey there. I don’t know if we would have made it this far without it all.

So, while it is by no means a normal journey, it is ours. I’ll admit, I look forward to the day when I am no longer hooked up to the pump, but for now I’ll consider it my breast friend.

 

 

…sorry. I had to make that pun.

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