brain bleeds, care packages, cerebral palsy, child loss, Child Loss Grief, endurance, family, hope, losing a child, picu, VP shunt

PICU Pick-Me-Up

As anniversaries and birthdays tick by,  I will never stop believing that those beautiful, inspiring, powerful 4 and a half months were meant for so much more; that such a short life was meant to be a catalyst for something exceptional.

So here I stand in the heat of another heavy July searching for ways I can use my little girl’s story to encourage kindness and inspire hope.  Well guess what, this one is not just on me… I’m laying this all out there because each one of you reading this has the power to make a terrible day a little bit better, to bring a flicker of hope to a hurting heart, and to keep on shouting that kindness matters.

One of the most trying things you can go through as a parent is having a critically ill or injured child.  Your world stops, and all your focus goes into every detail of the fight for more time with your little one.  I remember it uncomfortably clearly, but because of that, I can see a need that’s easy to meet.

On the 5th anniversary of standing in a crowded PICU room, watching my whole future change, I took a solid breath, and pressed the familiar button in a quiet elevator to be whisked to the 3rd floor.  Stepping off was a shock to every part of me as the colors and smells and sights all came screaming back.  I was on a mission though, for my brave daughter who fought on the other side of those doors, I could help bring a breath of grace to another parent shouldering the weight of the world.

My kids had helped me gather things throughout the weeks that we set aside for this very occasion.  It was easy to remember being a parent pacing across scuffed tiles between a stiff vinyl chair and a bed that contained a piece of your very being.  A parent who when asked, couldn’t actually remember the last time they had eaten an actual meal, a parent that spoke toward the ground so as not to exhale too deeply the breath of stale coffee that had sustained the 72 hours of numb awakeness  preceeding the current sunrise.  I could clearly remember being the parent that in each hurried bathroom break had wadded up wet, scratchy brown paper towels drizzled with disinfectant smelling hand soap and had desperately scrubbed at salt stained cheeks and sweat soaked shirt seams in hopes of concealing the fact that they dare not leave their child’s room long enough to run home for a shower.  I shook my head at remembering the emotionless nurse that had told me they weren’t allowed to spare me a Tylenol for my pounding head, but that I was welcome to check myself into the ER downstairs and have some prescribed by a doctor.  I acutely recalled the desperation coupled with simply surviving without having time to think about your own needs.  Well here is where WE can make a difference.

The kids and I put together care packages meant for the parents of each of the children in the PICU.  Took time to think through all the things I remember needing or wishing for during our long hours there, and tried to put together a smattering of things that would actually be used and appreciated.  I’ll share with you some of the things I came up with, and I hope some of you will run with it from there.  You can do as much or as little as you want.  It could even be just one good care package; I know that you will be making a difference in someone’s life during one of their hardest days.

If you decide to go spread some “Ellie Love” on your local PICU, I would so love to hear about it! You can reach me in the comment section, or by my email displayed in the sidebar.  Remember that whole “ripples in the pond” analogy?  This is one of those opportunities!  Get out there and spread some kindness and encouragement, make those small but meaningful moments spread joy in a way that’s contagious; that shouts the victory of the short but mighty lives like Ellianna Grace.

 

I grabbed an “adult” coloring book for some mindless distraction.  Something to keep you occupied that doesn’t require much thought.  Crayons break, colored pencils need sharpening, so I tried to play it safe with markers.  BONUS was coming across little LED clip on book lights. No more straining your eyes trying to use the dull glow of your phone because you don’t want to wake your sleeping kiddo.

 

Tissue that is not made from recycled sandpaper.  Or whatever it is that the hospitals use.  I realize they probably get a discount, but after the 37th time of scrubbing at your teary eyes and runny nose with those things, people start asking you how you got rug burn.  And seriously, look at th sweet message on this package of Kleenex.  They get it.

 

It’s safe to say a good majority of the meals a PICU parent has consumed were rattled from a vending machine with various pocket change, chased by some carbonated mess of sludge which is going to give them the mother of all sugar crashes later.  Its hard to be portable AND nutritious when doing this, but do your best to think outside the box of cookies, pop tarts, and potato chips.  Peanut butter and a spoon perhaps?  We love these fig bars because you get a decent serving of fruit, and they tend to fill you up for a good stretch of time.  Also think what you can do other than soda… something they can’t get from the hallway vending nook.  Again, not going to be the healthiest choices out there, but it is a good change to have something refreshing to snack on. The Werther’s?  Well those are just all out comforting, and perfect for keeping your mouth moist and your jaw doing something besides clenching.

 

GOOD gum.  Many of these items I was able to get at my dollar store, but a few things I specifically hit up the grocery instead, because quality mattered.  Imagine your breath already reeks from days blending into nights blending into days of eating whatever you can wherever you can, and usually washing it down with a steady flow of whatever coffee is most readily available.  Well then you’re talking to doctors and techs and asking questions of the nurses, and let’s just not have to worry about whether or not they can smell that you haven’t brushed in 3 days.  Splurge for a gum with a powerful flavor that’s going to l a s t.  I love the 5 brand flavors.  Especially their mints are super strong and not only wake you up and freshen your breath, but you’re more likely to spit it out because you’re tired of chewing rather than the flavor having worn out.  Again with the eating and the coffee comes along these handy little disposable mini toothbrushes, pre-loaded with toothpaste.  Come on.  Those have to have been invented with the hospital parent in mind.  CHAPSTICK!  Basically my security blanket, I think most women and some men would agree it’s always good to have some within arms length.  Excedrin tension headache is what I picked, but any similar product that’s going to fight a headache or an ache or pain could be a daysaver for one of these parents.  As I mentioned before, the hospital is too legally bound to slip you a few Tylenol, and most parents are probably just going to suck it up and fight through the rest of the day trying not to think about their throbbing head or aching muscles from standing vigil for 11 hours.

 

 

Hygeine.  Well, let’s take a poll about how many parents are stepping away from a PICU bedside to indulge in a hot shower.  That’s going to be basically… none of them.  Having a few things available that allows a parent to take a quick bathroom break and come back feeling a little fresher is  a valuable investment.  I grabbed packs of disposable body cloths (basically thick, better smelling baby wipes that you can essentially take a sponge bath with), hair ties or clips… because any woman like me is never going to be able to find one when she actually needs it, and dry shampoo.  That’s one of those inventions I would like to shake someone’s hand about.  It can go for guys or for girls, and when you’re skipping out on your shower for a few days, it’s really refreshing to be able to get your hair looking and smelling cleaner without much effort.
A deck of cards…. realizing no one may be in the frame of mind to be concentrating on a game, but they can just as easily be a stress relief used to shuffle and shift through idle hands.  ALCOHOL FREE HAND SANITIZER.  We have all noticed that around pretty much every corner in the hospitals is a handy dandy machine quick to eject a foamy mess that will kill most every germ, as well as the texture of your hands.  For a parent that has been in the hospital for several days or longer, that stuff starts getting really harsh on your skin.  If you can find an organic, non-alcohol hand sanitizer, get that in your care package pronto.  Of course I pitched in the brand I stand behind, which is Young Living’s Thieves anti-bac.  It smells amazing but not overpowering, and leaves my hands feeling smooth and refreshed in contrast to the goop so readily available around the hospital.
I packed each care package into a gift bag with a hand written note, not sharing the details of my journey, but letting them know I have stood in their shoes and hope in some small way these packages can make a few things simpler while they are fighting a bigger fight.  So get out there, find a PICU or a NICU near you and reach out.  It may seem trivial, but standing on those broken grounds, it’s the little things that fix the big picture.
In honor of my Ellie Grace, I will never stop saying your name, sharing your story, and spreading the love that you so easily coaxed out of everyone who met you.
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faith, grief, losing a child

Half a Year in Heaven

A few people still ask how we’re doing.  We tell them we’re doing ok, we’re making it, we’re getting through.  These statements are true in a microscopic way, and most importantly give people the assurance that we are not plummeting into a sea of grief that is going to claim our sanity or our ability to function.  These statements are the easiest way to share just enough honesty without exposing the snarled webbing of volatile thoughts and emotions that hold captive our reality. 

The truth is, we get up and face each morning because it’s one of the few things we have been able to choose.  We didn’t get to decide when our daughter would enter the world.  We didn’t get to pick when she would be strong enough to come home.  We didn’t vote on which battles she would have to fight, and we certainly didn’t elect to have to send her soaring back to Heaven after only 4 and a half months in our arms.  All of that was decided for us.  What we do have a say in is how we will respond.  So we resolve to embrace each moment, whether it brings tears or laughter, and continue to point back to a plan that we know is bigger than all of us.  Is it easy to do?  Does it feel good?  No.  But we know it is healing us and shaping us, and hopefully leaving a legacy that will mutiply with each new “yes” we choose.

January usually means a clean slate.  A fresh new start and a chance to overcome the shortcomings of the previous year.  For Mark and I, it’s a reminder of a world that is going on even after ours stopped.  I hate the constant calculating in my head; the math that tells me how old she would be on the 2nd of each month, and the equation every 14th that measures how many months my arms have felt empty.  We don’t talk about March.  We don’t want to imagine the birthday she never got to celebrate.

This month I thought I was ready.  I grabbed a few boxes and headed for Ellianna’s bedroom, having convinced myself it was time to make a more functional space out of the room she vacated 6 months ago.  Looking around, I saw the warm green paint that the girls had helped me sweep across the bare walls.  The lacy white curtains that give the perfect balance of femininity without being pink.  The whimsical canopy that I stood on tiptoes to hang just centered over the rich wood of her crib.  The simple white ‘E’ that boasts the elegant beauty of a name so carefully chosen.  All of these symbols whose meanings translate to things that will be missed instead of things yet to come.  All these meanings, and I couldn’t change a thing.  I couldn’t tuck the soft and delicate of all that was hers into boxes to be put away, slipping from daily sight and becoming memory. I thought it might ease Little One’s tears to not daily soak in the empty fabric and the hollow quiet of her baby sister’s room.  But I didn’t have the strength.  Often I find her sitting, shoulders hunched, tears streaming, surrounded by memoirs of her sister she has carefully laid out in array around her.  I took a picture when she didn’t know I was watching, but I think she heard the sound of my heart break.

Last night she told me “I just want to go to Heaven now.”  Even more painful than my own grief is the inability to soothe the pain of the Little 3.  To watch such tender hearts have to bear such a great burden is a dagger that sears hot and deep.  I pray daily for grace with which to press forward and for faith that is bigger.  Big enough to overcome the fears I feel and big enough to mend the wounds that are all around and through me.

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faith, grief, losing a child

Empty Space


Two months have gone by since we gave our little girl back to Heaven… a blink in the face of eternity, but it feels like so much longer in the lonely expanse of the days spent without her. Some days I am able to smile as her sisters talk about her coloring up in Heaven, or when I feel relief that I don’t have to protect her from anything. Most days though, I’m just sad. I feel jealous when I’m around other families who are smooching on tiny cheeks or rubbing rounded bellies that are about to burst with fresh new life. Then I feel guilty for feeling that way and wish that I had more grace to bestow.

I feel alone and left behind. The rest of the world has moved on, and I am still swallowed by a sea of grief. No one can possibly feel what I still feel when I walk down the hallway and see her bedroom untouched, her tiny diapers still in a neat stack.

No one knows how I swallow tears when I buckle the other kids in our van, which seems too big now with that empty seat. No one thinks how every time I see the precious pictures of her on our wall that there won’t be any new ones to add. She was here, and there are pieces of her everywhere. Pieces that stir such emotion, it’s enough to break a soul. The first days after she died, I felt numb. Numb allowed me to keep going, to get through what needed to be done. Now I find myself wishing for that numbness instead of this shattering pain.
When my 3 children walk side by side I see a space… a hole where my littlest girl will never skip along beside them. When other people see us, they must not understand why we have anything to be sad about. They tell us how lucky we are to have the children we do…. They say how nice it must be to just have one child at home during the day… they say she was lucky to have lived as long as she did. I am not at a place where I can see the glass half full yet. Although I am happy to know Ellianna is whole and well and living in glory, I still miss her and yearn for her here… and I will, until I go Home.

It must be terribly awkward for people. People do not like to see pain. They want to know we are ok, that we are moving forward, and that we won’t break into tears in the middle of a conversation. That’s the thing about grief… it’s not something that goes away in a month, 6 months, a year… we are in it for the long haul. At Christmas when there is an empty stocking, we will be sad. 5 years from now when she is not starting Kindergarten, we will be sad. When there is no prom, no high school graduation, no wedding…we will still feel the pain and sadness of losing Ellianna. Many people are afraid of that; afraid to see us hurting… so they distance themselves, afraid to say or do the wrong thing. Well the wrong thing is to ignore it. We still need to know you’re here for us just as much as the day that she died. We need to know that you’re not too nervous to be around us, that you understand when we cancel because we have been hit by a new wave of grief, that you’re willing to talk about her, to say her name, to let us know that you have not forgotten.

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grief, losing a child

Lean In To It

“How long must I wrestle with my thoughts and every day have sorrow in my heart?” Psalm 13:2

The grief of losing a child is immeasurable. It is a weight that lays over me like a heavy heavy blanket. Having other children I have learned, multiplies that grief because I am also grieving for the hearts of my living children. I am broken by the hole of losing my daughter and also bearing the burden of her three siblings who have lost a little sister. I am watching my 3 year old play that her baby dolls are dying and being buried… I am sitting with a 6 year old who wants to know why Jesus didn’t let Ellie come back like in the book “Heaven is for Real”… and explaining to a 9 year old that just because we didn’t get the answer we wanted, God is still sovereign. I am watching a 5 year old just a whisper away from death, and wondering if I still believe in miracles.

I know how this story ends, but that does not stop the enemy from planting doubts.

Mark and I started attending a Grief Share group this week. We had some challenges getting there, and almost didn’t make it, but we sure know now that there is something special in store for us. We met a young couple whose baby girl was born at the same hospital the day Ellianna died, and their baby girl, Lily Grace, died ten days later. What an amazing source of comfort it is to have someone who almost literally stood in our shoes. God places the right people in our lives at just the right time. It has been frustrating to us to feel like we are stuck while everyone else has moved on with life… our group is a place where we can be in that spot with others who are walking the journey right along with us. If you are grieving, or need to grieve a loss that you haven’t yet, find a Grief Share near you… it is a powerful resource for an impossible hurdle… http://www.griefshare.org/.

Someone told us grief is something you have to go THROUGH. You can’t go over it, you can’t go around it, you have to go through it…so LEAN into it. Like an ocean wave. That is what we are doing. Sometimes the waves are gentle, sometimes they knock us off our feet, but we are in a journey we can’t avoid.

Please don’t stop praying for us…

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Anger, losing a child

Smashing Eggs

These past few weeks have been a roller coaster. It is hard in the depths of grief to see the rest of the world move on, and yet I know each day brings me that much closer to being reunited with my little girl.

The time came for Mark to go back to work and for Jacob and Baylie to start school. I knew that would be one of the hardest times for me. It is hard to have days so quiet when I am used to them being consumed by Ellianna’s needs. I have spent much time sitting in the rocking chair in her room-my sanctuary- spilling my heart and my tears. Bella has been a perfect little companion. She just follows me around and watches whatever I am doing…her company is comforting. So far we have not accomplished anything big, but have made it to the gym every day and checked off a few projects around the house. We have out of town company this week and again a few weeks from now, so it will probably be Fall before things are really mostly normal for us.

Anger has taken a place in my sadness. I have had many days lately when I am so angry that Ellianna is gone. Angry that I couldn’t fix it, angry that God didn’t stop it, angry that I am watching my children cry because they miss their sister. Each day I am reminded of something I will never get to do with Ellie… never make her lunches for school, never put her hair in pigtails, never see her lose her first tooth, never watch her eat birthday cake… it makes me so ANGRY. I talked with the kids about being angry. I told them I was feeling mad and they said they were too… we talked about how it’s ok to be mad about it. At the suggestion of a friend, we had a therapuetic egg-smashing session in the bath tub. The kids were a little shocked at first (probably that I was letting them do this!) but they joined right in and together we threw and smashed our anger out and watched it dribble down the drain. I saw a lot more smiles after that.
I did not really feel like celebrating on my birthday. I felt sad that it was the first special celebration that Ellianna was not here for. Mark and the kids made it special though and we all wrote letters to Ellie on balloons and sent them soaring up to the sky from her grave. It was really meaningful to all of us to feel like we could put our thoughts into something tangible.

Joy will come. We don’t know when it will come, but we are confident that there is a Healer of broken hearts, and ours are His to heal.

“Those who have been ransomed by the Lord will return.
They will enter Jerusalem singing,
crowned with everlasting JOY.
Sorrow and mourning will disappear,
and they will be filled with JOY and gladness. I, yes I, am the one who comforts you.”
Isaiah 51:11-12

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faith, funeral, grief, losing a child

Saying Goodbye


The Sunday after Ellianna died I had no intentions of going to church, but I couldn’t bear to let Jacob, Baylie, and Bella be taken without me…what if they needed me?! So I went through the motions to get us there. I held myself together right up until the music started for worship. The tears wouldn’t stop. In the depths of my hurt I couldn’t even offer any praise. The only line I found the strength to utter was “My hiding place is You.” God was there all along—our worship leader told the crowd to sing it out again, but this time to sing it for the people around them that were at a place where they couldn’t. I knew that was me. All around me hands lifted high, holding us up, not even knowing who we were or what we were going through. Our ever-present help in times of trouble.

Wednesday night was Ellie’s visitation. Mark and I went early to have some time alone with her. Hard doesn’t even begin to describe it. She was so beautiful in her tiny white dress, a purple flower perched above her fluffy mohawk. She looked just like she was sleeping. I had been wearing the Piglet necklace Mark had gotten her at Disneyland… we wanted it to stay with her, so I took it off and fastened it around her neck. So sweet. The other kids arrived with Mark’s parents and we led them into the room to see their sister. All three of them crumpled into tears as soon as they saw her. Just when I thought my heart couldn’t break any more, it did. It was a hard night. Each new person that came brought more memories and emotions. We were so thankful to be surrounded by so many family and friends.

Thursday came though we willed it not to. Her service was beautiful. Just the tribute we wanted, with heartfelt music and sharing from close friends and family. As we followed her tiny casket outside I realized this was the last time she would be in our church. The ride to the cemetery was long and peaceful. The kids shared smiles about getting to ride in a limo…their laughter a balm to our bleeding hearts. Her graveside service was brief, and then we stayed behind to watch her be lowered into her final resting place. The great depth of her grave was terrifying to the kids, especially Jacob, but somehow it made me feel she was safe. The day continued with a reception time to visit with friends and family…

This past Sunday was our first day to just be a family again with our relatives and friends having traveled back home. Although the stillness seemed to bring more reality to missing her, it was also a time of peace and reflection. I got her room back in order and placed her flowers in many rooms of the house. I sat in her rocking chair and rocked…and just missed her.

So many have passed on words of encouragement, and as I have told them, even with our faith the hurt does not lessen. We will have a time of grieving where even though we have hope, we will have an ache and an emptiness that cannot be soothed. Ellianna’s death doesn’t have to be God’s will. If everything was God’s will, there would be no reason for us to have free will. We believe He is grieving with us. I’m sure there will be many stages we go through, and for us, the right thing to do is to embrace each one.

Each day holds special memories, sweet smiles, and painful reminders…each night, hollow emptiness and vivid dreams…. Through each tear we have seen promises of tomorrows and healing of yesterdays. One foot in front of the other, our journey continues.

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faith, losing a child

The Day The World Went Wrong

It is hard to know where to start; my heart is so heavy…

Several weeks ago, I felt like I heard a difficult question in my heart. “Would I be willing to give Ellianna back to Heaven if it meant salvation for someone else?” Struggling to understand if this was even God, or if I had just made it up, I replied with an angered “NO.” Why would God even ask that of me? Ellianna already seemed to have crossed the scariest bridges and we had seen such healing in her.

Last Tuesday, Ellianna was fussy in the evening. She cried like something hurt her and she was not very interested in eating. She already had a check-up scheduled the next day, so I gave her some Tylenol and found she settled if she could stay snuggled against me. She slept restfully in my arms through the night, waking only briefly. The next morning she was frighteningly pale and refused to nurse and hardly sipped from a bottle. She screamed whenever we moved her. I felt panicked. Ellianna’s weight check was scheduled for 1:00 in the afternoon. We were expecting them to tell us she needed a feeding tube again because she just wasn’t gaining weight.   Worried about why she seemed so sick, we called to see if they would get her in sooner, but they said that was the only time they could see her. I had planned to spend some time with a friend that day, and since Ellie was calm and comforted laying on Mark’s chest on the couch, I headed out for a few hours before coming back to take her to the doctor.

By the time we got to the doctor, there was no denying something was WRONG, and I wasn’t going to let them just send us away again. I didn’t even have to plead though. When the doctor came in to see her, Ellianna was just lying there, hardly moving, constanly whimpering this pitiful, guteral groan. I was in tears. “Something is wrong, this isn’t her. Please DO something.”  We were sent right to the emergency room.  I didn’t even wait for the ambulance.  I told her doctor, “I can have her there before the ambulance even gets here to pick us up.”

Half an hour later we were settled in the emergency room. Once again, nurses were poking and poking, trying to get an iv, and finally giving up and putting in a feeding tube because “this poor baby just needs something to eat!” I bit my tongue, holding back the verbal lashing I wanted to unleash on these professionals who seemed so blind.

The pedicatric neurosurgeon was out of town…again. Finally an adult neurosurgeon came to examine her, and it took him about 5 seconds to see that there was a problem with her shunt. It wasn’t working. By this time, Ellianna was dfficult to awaken. She was just sleeping in my arms.  The surgeon told us he would have to do the surgery to fix her shunt, but they needed to stablize her first.

Finally in the PICU they were able to get an iv started and get her some fluids to prepare her for surgery. I sat as still as I could, holding Ellie. She whimpered every time I moved her at all. It broke my heart to know she was in so much pain. I sang to her, every song I could remember… hymns I learned as a child, and the song my mom always sang to me. I kissed her soft cheeks and told her it was going to be ok; that they were going to fix it and she would feel better soon.

 Mark came with the girls to see her before surgery.  We both almost came unglued when they came in and said they had to poke her AGAIN for more blood because they must have mixed up her blood with someone else’s. “That couldn’t have been hers,” the doctor said, “she’s not that sick.” Big surprise when the next set of blood tests came back with the same terrifying results. Nurses were scrambling to start another blood transfusion before they started the surgery. 

Since Jacob was at camp, it was Mark, Baylie, Bella, and I that walked Ellianna down to surgery. I remember this looooong tiled hallway…the four of us holding hands as we walked…and I looked back and thought, “I bet this whole hallway could be filled with all the people praying for us right now.”

Mark sat with the girls while I walked Ellianna back to surgery. In the holding area she was crying and I couldn’t hold her. She was posturing and my medical background screamed the knowledge of what that meant. I needed to be hysterical, but as the first tear fell, the nurse who was waiting with us grabbed my shoulders. “No,” he said, “She needs you. You’re stronger than that. You’ve got this.” And then they took her. The tall metal bars of her crib and all the pumps and equipment surrounding my sweet little symbol of grace.

Once we got news that the surgery went fine, Mark took the girls home for some sleep and I went back to the PICU to wait for them to bring Ellianna back to her room. She remained sedated and on a breathing tube, but in a way it made me feel better that she was peaceful. Now, I thought, we heal. 

She looked better. The shunt had been fixed, she was pink again from the blood she had received, and her vital signs were more stable. The surgeon said the fluid in her brain had looked cloudy so it was sent off to be tested.

Within the hour the results came back saying she had the most serious kind of infection and she was to be taken back to the operating room to remove both of her shunts and put in an external drain to wait for the infection to clear. Mark was already tucking the girls in at home and was hardly able to move because of his recent back injury. He had to stay at home and wait for any updates. A couple good friends came by and stayed up through the night with me.

Back from surgery the second time, Ellianna was kept sedated.

Early the next morning I could tell the doctors were concerned about something. When the neurosurgeon said “This is serious, and it may be that she won’t survive, ” I was stunned and Mark made arrangements to hurry back to the hospital.

We stood with great friends as they told us that her CT scan showed 50-60% of her brain had already been destroyed. We were just in disbelief. I cried with her physical therapist who came by to see her. I told her about what I thought God had asked of me. I told her I felt like as soon as I said “yes” to God, she would be gone, and I was not going to do it.

  It was not long after that report that the horrible reality started sinking in. We watched in horror as her heart rate slowly dropped lower and lower.  Early on in the NICU, her heart rate would drop and all she needed was a little stimulation and that number would jump right back up.  “Rub her!”  I shouted at Mark.  But this wasn’t the same.  Beeping and dinging and running feet,  and CPR was begun. Mark and I stood helpless in each others’ arms, watching her slip away. That’s when I felt it. An overwhelming peace. A peace in saying “ok, You can take her.” I didn’t want that peace though. I wanted to scream!  I hated that I felt that way. But it stayed.

After a few minutes, her heart beat came back and she stabilized. We sat in shock and disbelief. Then it happened again. More CPR, more helpless watching and crying, and then her heartbeat was back again. At this point the doctor told us—even if they kept bringing her back, there was really no chance of neurological function. We had to decide what to do next. No parent should ever have to make that decision. Through our tears we knew we just wanted her to go in peace in our arms, without anymore trauma to her tiny body. They took everything off except the breathing tube, wrapped her in a blanket, and placed her in our arms.

We cried tears from the deepest places within us. Mark said “I’m sorry I never got to take you out for lunch on your birthday” and he did “Twinkle Star”, a bedtime tradition in our house. I told her how much we loved her and asked her to send butterflies for Baylie. We could tell she was gone, and asked that her breathing tube be taken too, so we could hold just her and see her precious, most beautiful face. I have never had emotion more raw or so deep. My chest felt physically crushed.

I started to feel frightened by watching her change.  Her nurses took her back to her bed and made impressions of her hands and feet for us. They let me bathe her and my tears would not stop as I gave her her last bath and combed her sweet smelling hair into one last mohawk. By this time she looked more peaceful. Like a delicate porcelain doll, and boy did she look just like her daddy with all of the tubes and stickers removed from her sweet little face! We held her again, as long as we could until they came to take her to the funeral home. Setting her down broke the last piece of my heart and we sobbed as they took her away.

I have more to share about the days that have followed since then, but for now I am so drained from these exhausting emotions. Please stay with us, share in our grief, smile in our memories, and hold us up as we make it through this most impossible of weeks. We are thankful for so many people who are surrounding us in our time of heartache.

Please leave me a comment; it lets me know you’re listening!