I want to share an organization, Now I Lay Me Down to Sleep.

It’s a topic on child loss.  So, if you want to continue, please do so.  If not, you should probably stop reading……….

If you’ve followed the blog, you’ve gathered bits and pieces of our loss.

In 2001 we were expecting our third child, a beautiful baby girl.  The pregnancy was going well, I was wretchedly nauseous.  In late December I started experiencing contractions, nothing dire, just unusual for me.  When I saw my OB (military hospital literally in the middle of the desert) she was young and inexperienced and pooh-poohed me.  We went home for leave in January and I saw my old obstetrician who put me on monitors and affirmed I was indeed having contractions and contacted my obstetrician back in California.

Following that week, they did an ultrasound with a specialist in the room and she told me I needed to be on bedrest.   It wasn’t anything I was terribly concerned with because no one thinks of bad things happening to them, especially not at 24 years old.   At least I wasn’t concerned until she said, “Well, if you can just get through March…….”  That opened my eyes.  I was horrified.  March? March!?  I wasn’t due until May 25, 2001.

Early  February 2001 I had a normal doctor’s appointment.  It didn’t go well.  They put me in an ambulance, lights on, and drove the 2+ hours to a hospital that could handle such a preterm birth.   I had a bolus of magnesium sulfate and then they put me on a drip.  That night was wretched.  I ended up with numerous tests and an EKG because they thought the mag. sulfate was causing serious heart problems.

I spent the next ten days getting alternating IVs all over my arms, hands, et cetera because the magnesium sulfate isn’t something your body particularly likes.   I was in a trendelemburg position (head down, legs up) on my hospital bed and wasn’t allowed up, even to use the bathroom.  Ten days.   That’s how long we lasted, Hannah and I.

Away from my babies who were almost 5 and almost 2 for ten days now, I gave birth to Hannah Elizabeth.  She was 26 weeks, 1 day, 1lb 15 oz, and she was tiny.  We tried so hard to keep our hopes down, but when she came out crying (mewing) and red and mad…… Well, it was hard NOT to hope.  It was SO hard not to hope.

And then the tests.  Oh my goodness, the tests.  She had two holes in her heart, a severe brain bleed, her respiratory system was a mess… These were the first reports.

But as the days, and honestly?  They melded into one very long day.  I don’t really remember where we ate, where we slept, what we did in between times at the NICU.  It’s such a blur now with just moments of clarity, of  “I remember…..”   As the days passed the reports came in and it turns out she had one hole (normal) not closed, and that closed with medication.  The brain bleed?  Not nearly as major as they thought.  And her respiratory system?  Well, not good, but not awful.  There WAS hope.

I remember…..

Those few moments of clarity.  The few things you remember.  I remember being SO angry at a grandmother who didn’t remove her rings like we were supposed to to stop the spread of germs.  I was so upset with her.   I remember requesting Hannah be baptised.  I remember going to the Ronald McDonald house and feeling relieved….  We couldn’t very well afford a hotel and to drive back and forth… Well, that wasn’t affordable either.  We had to figure out what to do with our little ones too… They were used to Mama being around.  And who in the world did we know that could watch them?  No one.  We were military, newly moved half way (literally) across the country.  I remember the baby across the aisle and how he had a huge machine that circulated his blood for him.   I remember watching a “kangaroo” video about how to hold your baby and was amazed that we might just hold her.   I remember how thin and transparent her skin was.  And how she looked so much like Briana, I thought.  She had hair, dark hair.  I remember, most of all, how perfect she was in every way.  Just tiny, miniature, like a baby doll.  And so incredibly delicate.  And I vividly remember watching her chest rise and fall.

And I remember the day she died, just twelve days after her birth.  We had gone home that weekend.  It was the first time I’d been home since February 4th.  My mother-in-law, who had come to take care of us since the end of January, had to go back to the airport and I remember feeling very alone with my children while DH took her……..  I had been so surrounded by people for the last three weeks.   And we called Sunday night to make sure she was okay and they said they thought she had a bit of an infection.  She had begun breastmilk just a couple days before, through a gastro tube.  We were concerned, but not overly, and we were planning on going in in the morning.

The next morning I was bathing and the phone rang.  We were getting ready to go the hospital.  They told us we had to come.  Now.  She wasn’t doing well.  They thought we’d have to make a decision today.  THE decision.

Oh Lord.  It was the single thing I had earnestly prayed for through it all… to NOT have to make such a decision.  How could I?  How could we ever decide it?  Live or die?  Hope or give up hope?  At what point do you give up hope?  I still don’t the answer to that.

When we got there we met her doctor, having also been gone for the weekend and we told her we had come to make a decision.  She felt we were hasty and we couldn’t be thinking about that.  She hadn’t seen her charts.  She went and came back and said she was so sorry……  And in that conversation before we could really talk about what we needed to decide, the nurse came and said we should hold her while we could.

And they took that tiny little girl out of her incubator for the very first time.  And they let us hold her.  And they gave her morphine.  A lot of morphine.  And then more, and more.  I’m sure it wasn’t so much but she had had some before we came and her eyes were open, really open for the first time ever and do you know just know how you know when an animal is in pain, even if it doesn’t cry out?  That’s how you know………..

There is a point.  There is a point that a parent should never, ever reach.  Should never know is even possible.   The point is when you come to the end of your child’s life and you come that single point when you turn the corner and you stop praying, “Oh Lord, let her live” and instead you pray, “Lord, please, please, please, let it be over.”  And you beg for the end of your child’s life.  It is not a point I ever, ever, ever, ever want to experience again in my life.  And I remember whispering for God to please take this sweet baby because her death was not painless nor was it fast.   But in the end it was most merciful.

When it was over we were allowed in a mourning room, to hold our daughter Hannah.  And we held her and sat there, we two.  We were so much younger then, this eight years ago.  Just barely turned 24 and and 28.  I don’t think we knew what to talk about……. What to do next?  What to do now?   How long do you hold a dead baby in your arms?  The answer is until she is cold and lying there so still and you realize that you will have to let her go.   You don’t have a choice, and you can’t take her with you………. You have to hand her to the nurse and walk away.

When they brought her to us, and it is in NO way the fault of the hospital, but when they brought her to us she was dressed in a cheap doll outfit.  It was scratchy and pink and I still have it and can I just say how much I despise that little pink dress?  How dare it touch her skin?  Didn’t they see how delicate she was?  How easily her skin was scratched?  The blanket was no better, itchy scratchy thing.  And what can they offer to a 1lb 15 oz. baby?  There isn’t much…………

And that became a driving obsession……. to find something to dress my baby in.  The only chance for a mama to take care of her daughter, the burial.

On the way home that night, and it seems too miraculous for me myself to believe, but it did indeed happen, friends can vouch for it….  Our van started on fire.  Not a major one, just a bit of flame and a lot of smoke.  And if you know the road between Barstow and Fort Irwin, you know it’s long and lonely and dark.  And there is no “little town” or “little stop” along the way. A van pulled up behind us and he was kind enough to throw his soda on the fire, but of course the van didn’t work.  And so they offered us a ride back.  Ironic, they thought, fortunate timing.  She lived off base and her brother in law was visiting… Had to run back on base for something and he offered to come with or else she probably wouldn’t have stopped.  They picked us up and so how was our night going?  Exhaustion.  That’s all I can say.  Because if I had had my wits about me maybe I wouldn’t have told this unfortunate one that our daughter had just died.

In the end, and here is the miracle, she helped to run the AER – the Army Emergency Relief.   By midnight that night we had virtual strangers, the gal who babysat my little ones 2-3 times when I had doctor appointments, also from Iowa, but barely an aquaintance, offer the use of her car.  The AER had promised burial expenses, car repair expenses, plan tickets… All on them.  We were new to the military.  We had NO idea that AER existed.  We had family and in the end they probably would have helped out, but when we could do NOTHING for ourselves, God stopped in.  I’m not fond of coincidences, I don’t much believe in them, for I know, I’ve seen, He can use all things, ALL things, for His purpose.  And I say this having buried a child.

The burial was very hard.  I made her outfit.  Blessedly I had learned to sew just months before that.  We had bought fabric to make preemie clothes in for her and I used soft knit with gray koalas and bits of pink and purple.  I didn’t make a lovely gown, there was no lace, no trim, but it was soft and comfortable and everything that that wretched pink dress wasn’t.  We made her a hat.  We got her a blanket.  We got her soft pink booties…..

What do I regret?  Well, looking at the organizations who supply things for the families for dead babies…… Oh. Sigh.  I wish I had  a decent picture of her.  That last weekend she had gotten necrotizing entercolitis, an infection in the gut that begins to eat away tissue.  It was invasive and acted quickly before they could.  The stress on her little body caused a massive hemorrhage in her brain and then a complete failure of her respiratory system.  The bleeding in her brain caused her head to be very dark and in the pictures, well, they’re hard to look at.  Elizabeth came across them one day not so long ago….. And she saw Hannah’s poor little body… Where they had intubated her they used tape.  And when they took off the tape, the skin of a premature baby is so delicate, it tore.  Her head was incredibly bruised.  As  a matter of fact even my most beloved friends and my family, including my mother and mother in law, have never seen pictures of their grand-daughter.  They aren’t something I’d share.  You have an instant recoil.  If you can get past it, I can, to see the face….. She looks like her sisters, so very, very much like all of her sisters.  She has the fine nose and the little doll lips.  She had dark hair and a bit of a narrow heart shaped face like Elizabeth.  I think she would have looked very much like Elizabeth Grace.

I hear now of all the things they have for mourning families and I think it’s an amazing ministry.   I pray that no one experiences the loss of a child.  But I am so very grateful that such ministries exist.   And I pray that if you know someone in the future that experiences loss, please, please, please contact them immediately and let them know such a place exists.  I look at the pictures they’ve taken and I am SO grateful that that nurse grabbed her camera that day or we would have nothing.  But oh what it would be like to have lovely pictures of her……  Something I could actually hang on my wall or carry with me.

I know that our family and friends were so far away.  And I know that they didn’t really experience her life or her death with us.   But if you could just let those mamas talk…….  They have such a need to talk.  To recognize that their babies DID exist.  They did live.  There isn’t a flow chart on the time it takes to mourn the loss of a child.  It takes a lifetime to mourn the loss of a child.  Every night as we bless our children, pray with our children, thank God for our children, we also thank Him for her.   Such a short life and yet it impacted us so greatly.

It is not so very long ago that a cousin lost his baby.   They were not prepared.  Is anyone?  I thought I could go to that wake and I wasn’t prepared for how hard it hit me.  From the moment I saw a coffin that looked like Hannah’s I started sobbing and couldn’t stop.  Later I felt a little odd and silly……. Eight years.  I thought that I had dealt with it.

And then tonight reading a story from a mama on Hyenacart that has just buried her little girl, and a couple months ago when another mama buried her daughter from HyenaCart, I just started sobbing all over again.

And there are times when I wonder…. Oh I don’t even know what I wonder.  I wonder if the time comes when you don’t cry.  And I wonder if that is even good or bad?

Am I still sad?  No, I don’t think so.  I’m not sad.  I’m not angry.  I’m not broken either.  I am thankful.  Not for her death, but how it’s changed me as a person, as a mother.   I’m thankful that I can console someone.   Or that I know to listen.   Or that I know that it’s okay for them to talk and I don’t have to say the right words.  Or that I know I don’t have to forget.  That it’s okay to remember her every single day of my life.  I’m grateful I’m a Christian and I have hope.  Hope and knowledge I’ll see her again, that I know where she is.

I’ll tell you a bit of a secret.  She is buried not too terribly far from here.  We had her buried in Iowa.  And we almost never visit.  I have family that visits her burial site far more often than we do.  They place statues and flowers and ornaments at the appropriate season.  They visit on Memorial Day and around Christmas.  And I don’t.  I don’t even feel compelled to…..  I know something they don’t.  She isn’t there.   Her life didn’t stop with burial.  The end is not a cold casket.  That is not all there is.

And in that I can find joy.  I will still mourn not knowing her….  What unique personality and quirks and joy she’d bring into our family.  But I have found joy beyond her death.  After all that isn’t all her life boiled down to.  Hannah Elizabeth wasn’t just about a death that occurred.  It was about a life that existed, a blessing given.   And for that gift, that blessing,  I am eternally grateful.

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