Saturday, August 31, 2013

Letter to Hazel Grace

Dear Sweet Baby Hazel Grace,

I am writing this letter to you because yesterday your dad and I had to decide whether to give consent for the doctors to give you systemic steroids if necessary or not, and I want you to understand that this was not a decision taken lightly and I also want you to understand why we made the choice that we did.

Our hopes are that one day you will read this letter easily on your own, smile at the thought of what went into it and then pack it away with the other things that you hold dear.

But if not, if this letter must be read to you, because you are not capable of reading it on your own, and even if upon the reading of this letter to you, you do not have a capacity to understand it all, please know this:

We love you.  You have in no way let us down, and we are proud of you and who you are.

Before you were born, when you were just a glimmer in my eye, your father and I drew a collective breath and gave you to God...

because we were really scared.

Five children is a lot of children to have.  Your brother Jesse had barely turned a year old when the test came back positive, Gabriel was not yet 3, and Jo was still 5, and we didn't know how we were going to make it.  Elizabeth was full force into her teen years at 14 years old, so she was a huge help, but the house, as you may now know, was small and pretty shabby.

Where to put another baby?

How to pay for all that a new baby needs?

But on our knees, with hands clutched together in prayer, your father and I knew that you were to be a blessing to us and in faith, we loved you.

As my belly began to swell gently, and I didn't fit into my jeans anymore, I loved you still.

On my birthday in June, I had my first sonogram and I found out that you were a girl.  I called your father at work and told him and there was a silence on the other end of the line.  He was crying.  Tears of joy and paternal love overflowed from his heart and eyes.  Oh, how we loved you.

Then in July, when things started to go wrong, and we became afraid again, this time for your safety and not for our own selfish fears, we loved you fiercely and did all we could to protect you.  And as I lay in bed, unable to get up because of my dedication to you and keeping you safe inside me, Jesse, Gabriel, Jo and Elizabeth crowded around the bed to keep me...and

We had a name for you by then...Hazel, God sees, and they all talked to you and about you because they loved you.

And the day that you were born...August 1, that day that remains seared in the memory...the day that you were cut out of my womb and you cried and they wrapped your tiny form in a blue and pink striped white blanket and before they whisked you away, one of the nurses held you out to me...sideways because I was lying on the operating table still...and I saw your tiny face with eyes fused shut...that day, we loved you even more.

But all that time, that love was something of a love of possession.  We loved because you were our baby.  They loved because you were their sibling.

But now, a month and 2 days later, it's all different.

We love because you are you.

We love because you are Hazel Grace.

We love because you are a fighter...

Because you turn your head to the sound of our voices...

Because you snuggle in to the touch of your siblings...

Because you are one of us.

And so, when we are faced with an impossible decision, to give you steroids, a drug that holds a very high chance of damaging your fragile brain and nervous system, or to leave you as you are and watch you most likely slowly fade away as your lungs deteriorate more and more until there is nothing left but a shallow breath that soon disappears altogether,

Your father and I chose to give you a chance.

Because we love you not for your perfection, not for your skills, not for your abilities,

but for you, sweet Hazel Grace.

We love you so much that we can't let you go.  We can't take your one fighting chance away from you.

I dearly hope that you understand why we made this decision, and I truly hope that when you read this, it no longer matters.  That you are a healthy, thriving young woman with a world of opportunities open before you...

but if not, if you are struggling, if you hurt, if you feel less than and if you look back and attribute it to this decision that we made together, this decision to allow these potentially damaging drugs to be used,

please understand that this decision was made with prayer, faith, and most of all,

with love.

Because to us, dear sweet Hazel Grace,

you are perfect just the way you are...

because however you are, and whoever you are,

you are exactly as God intended,

and He still has plans for you.

Jeremiah 29:11
For I know the plans I have for you, declares the Lord.  Plans to prosper you and not to harm you, plans to give you hope and a future.

Joining the Club

Hazel joined a new club today...

She's in the 2 pounder club!  Yay!

Today, our sweet baby Hazel Grace hit the 2 pound mark just one day after her one month birthday.

Actually, in the NICU, they don't have a 2 pounder club, they have the 'Kilo Club' but Hazel's not invited to that club yet, so we made up the 'Two Pounder Club' so she wouldn't feel left out.

See?  We are overindulging soccer club parents already...where everyone gets a trophy just for lacing their cleats!

But honestly, Hazel looked absolutely wonderful today.  Even the doctor said that she looked really good today.  Sometimes I wonder if I'm not being naive in being content that she looks good when I know that the problem that she has is buried deep within her lungs.  Do I have a false sense of security merely because she appears to be a healthy baby?

But than I realize that I guess it doesn't really matter.  Intellectually, I know what her issue is, and I'm not denying it nor its severity, so who cares if emotionally I can look at her, see her as beautiful, and feel good about that.  

But either way, her coloring is great, she was peaceful and she just looks bigger...

even though she's only gained 9 ounces since she was born.  Maybe it's her new status in our made up club.  But aside from her lungs, she is thriving.  That's not just in my mind.  Even the doctors say it.

She is perfectly fine...

except for her lungs.

And in that, I rejoice and grieve at the same time.

I struggle with accepting the fact that she is so perfect and yet has such a problem that sets her up for so many possibilities of brain damage and delay...

and yet, it is comforting to know that as she receives the interventions necessary to heal her lungs, she is starting from a clean slate and not adding potential damage to something that is already struggling.

And either way, today...well, today, she looked great.

Gabriel and Jo went with Jimmy and me to see their little sister today, and they were so sweet peering into the isolette.  Due to her pneumonia and all the extra hook-ups that she had since she just received blood yesterday, they didn't touch her, but they asked a million and one questions about everything and just marveled at her tininess.

It's interesting what kids can adapt to.  It seems that because we, Jimmy and I, are at peace with Hazel Grace and all her wires and tubes, they, too, can look right past all that stuff and see the little girl that lies tangled up in them.  They don't seemed to be fazed by all the medical stuff in the least and more.  Hazel was kicking her little foot and Gabriel looked at me and said 'Look, Mom!  Baby Hazel is getting ready to get big and kick a ball!'

He asked how long it would be until she was big enough to play with him.  He is so sensitive and sweet, I think that he is aptly named Gabriel after the angel in the Bible!

(Just remind me that I said that when he is beating up my sunflower plant or breaking my butterfly yard decoration that I got from my sister for my birthday.  'Cuz I'm just sayin'...sometimes there's nothin' angelic about that little boy!)

But this is the lesson that I took away from Hazel Grace today:

Things can be bad on the inside, but you can still enjoy the beautiful parts that surround the difficulty...


It's ok to enjoy yourself and have a good day even if someone you love is in the hospital.  It's ok to find contentment in their peace, and take it away with you and savor it for the rest of the day!

Sweet baby Hazel Grace...

you are so small and you barely even open your eyes, and yet, you, in your tiny playing card sized diapers and your 5.2 cc's per hour of food that fills your tiny tummy (intestines, to be exact), have so much to teach us all.

But the one thing that I can't wait to learn is this:

After all of this...the tubes and needles and drugs...who will you be, Hazel Grace, when you grow up?

I just can't wait!

Friday, August 30, 2013


The number of people who can visit our sweet baby Hazel Grace is very limited.  You must be immediate family, a grandmother or grandfather (only 2 of each is allowed), or someone on a special list of 4, and you can not get in without either Jimmy or me, and you may only have 2 people at the isolette at one time, and one of them must be either Jimmy or me.  So, suffice it to say that only a small handful of people have ever had the privilege of laying eyes on our miracle.  

I was visiting with someone who is standing in as my mother in this situation since my mother can not be here, and she asked if she could take a picture.  Seeing as I trust her enough to let her be my 'mother', I said ok, and she stepped back a bit, pulled out her iphone and aimed to take a shot of our tiny princess.

As I looked over her shoulder, and I looked through the viewfinder on her phone to the image that she was capturing, I saw how different the image was from the real baby who was lying in the isolette. 

Through the viewfinder, I saw a bunch of wires and tubes and IV's and medical tape, 

but shifting my position slightly and looking past the camera lense brought me a completely different view...

my baby.

Hazel Grace.

Looking straight on, it was easy to see my Hazel for who she is...

a sweet tiny human fighting for her life...

someone with depth...

someone with a soul.

But looking at the same layout as seen through the viewfinder, it was much harder to see her in there.  Everything just appeared as a tangle of wires and tubes. 

It's not that the quality of the image was bad, it's just that the viewfinder was finding the wrong view.

And I wondered...

How often do I do that?

How often do I look around me and see my tiny, sick baby and my tangle of weeds in the front yard and the laundry piled up ready to take over the house and swallow a small child, and the sticky counters and the moldy bread and the dust bunny in the corner and the picture that's still crooked from where it was hung last week after the cat died and no one has yet to fix it...

and the....and the....

the list goes on.

And I wonder what the point of it all is.  Why wipe the counters when they will just get sticky again and I barely have the energy to get up out of bed let alone straighten a picture on the wall, and if the laundry is going to swallow a child, can I pick which one?  If I let it pile up more, will it take two?  

And then I see...

It's not that the quality of my images are's really true...I DO have a lot of laundry and I DO have sticky counters and crooked pictures and dust bunnies.

But maybe I'm finding the wrong views...

Baby Hazel is sick, but she's still here.  

And the laundry and the stickiness and the dust bunnies are all signs of life...both of life here in the house and of the life that is in baby Hazel.  Because if we weren't going to see her every day, maybe I would have taken the time to fix that picture or wipe that counter.

But sweet baby Hazel Grace is there and she is breathing and she is waiting for us to come and see her.

So...maybe the dust bunnies will get stuck to the counter and quit floating around, and maybe the laundry pile will get so high it will obscure the lopsided picture...

but that's fine because tonight, I'm finding the right views...

and I've got a baby with a sweet soft fuzzy tennis ball sized head that needs some lovin'!

Tomorrow's a different story...maybe tomorrow I'll get lost again in the viewfinder of life, 

but everyone tells me to take it one day at a time...

so that's exactly what I'm doing.

Wednesday, August 28, 2013


Baby Hazel has been having a lot of secretions from her lungs, and it turns out that she has an infection again.
Baby Hazel has pneumonia.

My youngest daughter, Hazel Grace, turns one month old tomorrow...

and I have never held her in my arms, never held her to my breast, never bathed her, never changed a blow-out diaper, never woken up at 3AM to feed and rock her...




All of the highs of having a new baby are not mine...

and oh, how I wish to be able to join in the chorus on complaints of diapers and midnight feedings of a newborn baby, but...

no.  It is not to be.  Not yet.

But when?  Ever?

She still lies in her plastic fish tank isolette with oxygen, steroids and antibiotics being pumped into her chest, and milk being threaded down her throat and IV's and sensors hanging off every limb,

and I still lie at home with an empty crib by the bed and an aching space in my heart.

Her blood gases were not so good today, so she still sits at the same pressure on the jet ventilator.

I went to see her this morning, and then I took all the kids to the farmers' market to see our farmer friend whom we have not seen since almost the beginning of the summer, and we stopped by the bank and then we ate lunch and napped and played in the rain,

but a part of my mind constantly turns toward the west, where my sweet baby Hazel Grace lies in her isolette being cared for by strangers.

I guess after a month, they're not really strangers anymore, though.  Does Hazel know them better than she knows me?

I would like to say no, but that may just be wishful thinking.

In the end, though, does it matter?  They are the ones programming the machines that give her life,

I am just a bystander.

I wander in once, maybe twice a day, to sit beside her and rest my hand on her feet or on her head, but I know my hands smell of soap and sanitizer, not of mother, or milk, or warmth...

the smells a newborn usually relates to their mother.

And I am sad because I don't know when it's going to end...

how it's going to end.

I look at her there, her perfectly round head and exquisitely formed hands and feet







and I wonder what's going to happen.

All of this should have stayed wrapped up safely inside, but it isn't.

I let her down.

And my sweet baby is being exposed to so many drugs and chemicals and interventions, that it's hard to believe that she will make it through this unscathed.

And I wonder how this is even fair?

Eat right, take your vitamins, don't smoke, don't do drugs, stay away from plastics...

we don't even have a microwave, for pete's sake!

It all seems pointless and trivial at this point.

My baby is still in the NICU, and no amount of clean living is going to get her out.

So, sweet baby Hazel Grace has started another round of antibiotics, this time stronger ones, to hopefully get rid of the infection in her lungs to prepare her for the systemic steroids.

One round after another of drugs that will supposedly heal her, and hopefully leave her whole.

And so I say this to her, my youngest child that was ripped too early from my womb:

Stay strong, Hazel Grace.  No matter what happens, you are a beloved part of this family.  You were since the day you were conceived and you will be til the end of time.  Your name, Hazel, means 'God sees', and Grace, well, grace is all around and abounding.  Grace is what holds us together and grace...

grace is what will see you home.

But please, sweet baby Hazel, please make that home here...

right here, on earth, with us.

Tuesday, August 27, 2013

Statting Hazel Grace

Baby Hazel's lungs are in very very bad condition.

They have been been hardened by scar tissue, and the damage continues with every day that she is on the jet ventilator, but there is no way that she can get off this ventilator because if she were put on the other ventilator, at the levels that she is at now, there would be even more severe damage, and she would most likely not be able to tolerate it.

Since yesterday, her pressure level did go down, but only by 1.  So, instead of being at a pressure of 35, she's at 34.

It's a step in the right direction, but unfortunately, it is too small of a step to make much of a difference.  

She is doing very well in all other areas.  Her blood gas tests are steady, and she is 'statting' well, which basically means that the machines are not beeping at much.

But she just can't stay at the pressure levels that she is at right now for much longer.

So, we are faced with decisions:

Do we wait out the course of inhaled steroids that she is on right now in hopes that her lungs will get better?

or do we start the systemic steroids in hopes that her lungs will heal faster?

But there is never a cut and dried answer to these things.  

The thing is that she is beginning to fight the jet ventilator.  She is sedated with morphine, but she is still beginning to fight it. 

And that doesn't mean that she is pulling at the tubes...that would be an easy fix.  What it means is that she is beginning to spasm and close off the pipes to her lungs.  That means that no matter what we do, no O2 can get in there.  As she grows, this will only get worse, which means that if she is still on the jet ventilator, she will have to be more and more sedated, which means more and more drugs.  

But she can't get off this ventilator until she gets her pressures down...

which means that she really needs the steroids so that she can have a chance to heal.

But the steroids have a lot of scary side effects, both short term and long term.  The biggest long term side effect we could be facing is brain damage and/or cerebral palsy.  

So, you say, don't do it and just give her more time...

BUT...the longer she is on the jet ventilator, the more damage is done to her lungs, which are obviously what gets the O2 to her brain, which means that if her lungs are not working properly, then she's not getting enough O2 to her brain, which can got it.  Brain damage and/or cerebral palsy.

So what do you do?  Either one could work...

and either one could do long term, life altering damage.


do you sign the paper for the steroids?  

Or do you wait it out...give it another week for the inhaled steroids to hopefully do the trick?

A week is a looooong time when you're the size of a ketchup bottle. 

And then, it seems that she may have another infection, and if it is the same infection that she had before, then they want to treat her systemically with antibiotics, which can raise the risk of NEC, which is a life threatening disease of the intestines.  

But they can't really give her systemic steroids until they are sure she has no infection.

So, all in all, it's a big circle...a catch 22...

and a tremendous heaviness on my heart.

I see her there and she's just so tiny and so perfect and there's just no way to know what the effects of what we are doing now to try to save her will have on the rest of her life. 

A mother always wants what is best for her child, and a father will go to the ends of the earth to defend his daughter,

but what happens when all it is is a signature on a dotted line?  What happens when you have nothing to go on?  When all the cards are face down and you can't see what the future holds or what path to take, but you hold the pen that will decide to give or to not give potentially life altering drugs...

what then?

And what if the horrible 'what if' happens?

Do you collapse to the floor crushed with the knowledge that you stood there on that day and you signed that paper and you never knew that this would happen and you never wanted this to happen but it did...

all with the stroke of the pen that you held in your hand?

But you can weigh the pros and the cons and you can ask a million questions and you can learn a million facts that you never even knew that you would ever even want to know...

but in the end, it all boils down to a prayer and a step of faith. 

Faith in the doctors, faith in yourself, that you do the best you can in every given moment because that's all you can do, 

and faith in God.  That this is all somehow in His plan...

from the very first breath that Hazel Grace took at 7:56PM on August 1 to the very last breath she will take, whenever that may be.  

So, sleep on, sweet baby Hazel Grace.  Breathe deep and stat well tonight.

We all love you, so have faith...

Monday, August 26, 2013

Jetting and Fretting

Hazel Grace is the one jetting...I'm the one fretting.

Just to get that out there so no one worries about the emotional state of our sweet baby Hazel Grace.

That being said, this posting is short and sweet just to let you know what it going on and how exactly to direct your prayers

because the Bible says in John 14:13 'whatever you ask in My name, this I will do that the Father may be glorified in the Son'

and I am clinging to that truth like a man in the desert clings to his last canteen of water.

Anyway, I figure that the more people that are asking, it certainly can't hurt.

Baby Hazel actually had a good day today.  Her monitors didn't beep and squawk as much as they often do, and she was comfortable and looked sweet and soft and so...just so...squeezable!  (I didn't.  Squeeze, that is.  I have thus far been able to refrain from squeezing sweet baby Hazel Grace.  I have been able to content myself with cupping her fuzzy tennis ball head in my hand.  BUT...let me tell you that when she gets to be squeezable size...well, she's just better look out.  'Cuz I've got some squeezing coming her way.  It's building up, and it's got to get release sometime!)

But here's the thing:

She had a good day on the ventilator settings that she is on right now.  And that is the issue.

The settings are too high.

She's at a pressure of 35.  She had been at a pressure of 26 and she needs to be at a pressure of 16 or so.

Thirty-five is just too high,but that's where they had to put her when she had her bad day and night recently, and she just hasn't been able to wean down off of that.

Which means that the doctor wants to do more drugs and other interventions that I wish did not have to be done.


We need to pray that baby Hazel would be able to wean herself down on her jet settings and that her lungs would heal.

Right now.  Tonight.

That's what she needs.

She needs to head the doctors off at the pass so that they don't continue down the path of thinking that she's not going to get better with the minimal intervention that they are doing now.

She needs a miraculous recovery.

I know it's possible.

Sunday, August 25, 2013

A Balancing Act

Today was the first day that I have been to church in about 2 months or so.  First because I was on bedrest and then because I was in the hospital, and then because I had to go to the hospital to visit Hazel when I could get a ride, so I had to go when it was best for someone else to take me.

But today, since I am now back behind the wheel, I was able to go to church and sit in our regular pew right there up front  next to Jimmy.

It was a good feeling.

It was kind of hard to make the decision to go to church.   I know that sounds bad, but in all honesty, I wasn't sure that I was ready to go.  I can use the excuse that it is because it is a good time to go to see Hazel because the kids are all occupied so they won't miss me, but that's not entirely honest.

To put it bluntly, I'm angry.

With God.

I mean, how could He let this happen?  How can He let someone so tiny suffer?  What has sweet baby Hazel Grace done to deserve this kind of treatment????

If I darken the doors of the church, if I warm that pew right there up front, if I sit and stand and listen and sing, will I know the answer?

Not really.

So what's the point in going?

But I went anyway.

I went because Elizabeth, our oldest, was going to be leading a worship song with 2 of her friends from the Youth Group.  She was going to play the guitar and sing, and Maggie was going to sing and play the keyboard, and Brigid was to play percussion.

So, I wanted to...had to...go.  As much as I need to be by Hazel's side, I need to be there for the rest of them, too.

So I went.

And I sat and I listened to my oldest sing and strum and she did a wonderful job.  She has grown into her own self.  I wish I had video taped it.  She is amazing.

Her voice is warm and silky, and her fingers found all the right strings at the right time, and she sang what was in her heart, which was praises to God...

and I heard them.

But then, after service, we left the kids in Sunday School and Jimmy and I went to visit Hazel Grace.

We walked in and peered into her isolette, and she was just lying there with her head tipped back and tubes running down her throat and her arms splayed with IV's in them and she was just there with her eyes closed...


That's it.  No movement of her own, only the jetting of her small torso in response to the ventilator that is keeping her alive.

From vibrant life singing and strumming to just-barely-hanging-on-life jetting and breathing.

Intense pride that fills the heart to the brim with joy to intense worry that fills the heart to the brim with pain.

How does one do this?  How does one hold the joy together with the pain?

When we got back to the church to pick the kids up, people would tell how wonderfully Elizabeth sang and ask how baby Hazel was doing...all in one breath.

Pride and pain.  A balancing act.

How is it possible to not let one emotion take over and push the other one out?

I have been told that there are some parents of NICU babies that don't come in to see their preemies nor do they call to check in for days or even a week or more at a time.

And I have been told of parents who check out with their families and stay by the side of the isolette for hours and hours a day.

How do you hold it all in your heart?  How do you keep it all together?

I sit at night, hunched over this keyboard in an attempt to sort some of this process the make some sense of the senseless.

Five children.

Four there.  A teeter-totter somehow trying to balance one tiny baby with the weight of a whole family without letting anyone drop and hit the ground hard.

Gabriel asks to go and see Hazel Grace.  I told him that if he was a good boy in the grocery store, then, when we were done, we would call the NICU, see how Hazel was doing and go see her if she felt up to it.  He was so excited!  He asked to carry a baby doll through the store.  He sat nicely in the cart, didn't ask for things and held his baby carefully and gently.  He positioned the doll gently in his lap so that she could see the things that we were buying and asked a million 'why' questions of the checker, but stayed sitting nicely in his seat.

Then we got to the car, he got strapped in, and I called the NICU.

Baby Hazel Grace was getting a blood transfusion.  She was not doing well.  She needed peace and quiet and to rest gently under her blanket that drapes over her isolette and darkens it.

It was not a good time for a visit from her 3 year old brother.

Gabriel was so disappointed, and I was disappointed for him.  He had done so well in the store, and he had taken such good care of his baby doll, and he so wanted to visit his sweet baby Hazel Grace...

but he couldn't.

He had to be content with coming back home, eating a cookie and looking at pictures of his tiny sister.

A balancing act...soothing the disappointment of one for the good of the other.

But I guess this is all just training for life.  It's all a balancing act.

And sometimes I feel like the biggest balancing act of all is just me...

getting up...standing up...staying up...moving forward...

and if I do fall...

picking myself up again.

Because I've got a lot riding on my shoulders that all depends on me to be able to continue this wild and crazy

balancing act.

And the best way I've learned to balance

Is looking up.

Thursday, August 22, 2013

22 Days

Today is the day that I drive myself.

I will get behind the wheel of a car for the first time in more than 6 weeks.

I will drive myself to the hospital and I will go and see Hazel Grace all by myself.

I will sit by her isolette, and I will talk to the nurses and I will help in her care and then I will walk back to my car and get in and drive myself home.

So what does this mean?

Does this mean that I'm better now?

Does this mean that it's all back together now?  I can walk upright and bend with little to no pain and I can turn and pivot enough to drive a car and be mobile all by myself, so it's all back to normal now?

It has been 22 days since Hazel Grace was taken from that sacred space beneath my heart and sometimes I feel like they made a mistake and they took my heart, too, and my heart is lying there bare and bloody and beating in tandem with hers right next to her in that plastic tank that she lives in...

but really, it's not.  It's not there.  It's right here in my chest.

I know this because I am living.

I am getting up every day.  I am eating breakfast, I am watching the kids, I am making lunches and sweeping floors and washing hanging folding laundry and wiping tears and bottoms and eraser shavings made in frustration at the letters that just won't form right on the page...

I am living.

And I say to myself...

'Self', I say, 'Self, it's been 22 days.  Pull yourself together and get 'er done.'

But then I say to myself...

'Self, it's only been 22 days.'

It's an eternity and it's a blink of an eye.

Hazel Grace is 3 weeks old today.

Hazel Grace is negative 13 weeks old.

She had 13 weeks left...I had 13 weeks left.  13 weeks of her snuggled under my rib cage.

But now she's out here...out there...and those 13 weeks were stolen from us both and there's nothing we can do about it but go on because there's nothing we can do to get them back.

And they are life changing weeks.  They are weeks that determine a life, a fate a destiny, and there's no way to change that.  No way to tuck her back in to safety, no way that I can care for her anymore in that watery sanctuary...

and so she goes on and I go on and I long to snuggle her and I know she wants me too.

I can feel her and I know she feels me.  He levels are always better when I'm there...her monitors beep a little less when I hold her head in my hand or even when I just peer in at her and whisper her prayer over her

May the Lord bless you and keep you
May the Lord make His face shine upon you and be gracious to you.
May the Lord lift his countenance upon you and give you peace. (Numbers 6:24-26)

I whisper this over her, and I know she hears me, but in reality, she and I both know that this prayer is really for me.

Hazel Grace is peaceful.  She does not worry, she rests secure.  She trusts and rests and grows.  She breathes and we rejoice in those breaths.

But I am the one who needs the peace.  I am the one who struggles and fights and worries and fears, not Hazel Grace.

I struggle against all the things they do to her...all the x-rays and antibiotics and steroids and blood transfusions...all the things we so desperately try to keep our kids from and here my most vulnerable is subject to those things daily. And I fear for her because what if what saves her life today...? I can't even think it.

And I know that God does indeed turn His face to me and it shines just for me, but often I am turned away...

gazing instead at the tiny form of my micro preemie for whom I can do nothing, or curled over the pump as I spill the life giving milk into freezer bags or looking down as my fingers gently explore the healing gash on my belly...

Or looking inward searching for myself in all of this...

instead of looking up and receiving peace.

So, dear Hazel Grace, as I drive myself to your side to hover over you and pray your prayer, your benediction, open your little all knowing eyes and mirror back to me what I say to you...

And may the Lord bless and keep us both.

Wednesday, August 21, 2013

What's in a Centimeter?

Dealing with a mirco preemie like Hazel Grace can kind of put things into perspective...

or take them out.

Take, for example, 10 grams...approximately 1 ounce.

Not much, really, right?  I mean it's just a tiny measurement.  Most devices don't even measure that small.

What if we weighed ourselves in ounces?  The numbers would be preposterous and difficult to manage.

Well, not for baby Hazel.

She is weighed daily by the nurses that take care of her.  She is fed continuously since her feeding tube bypasses her stomach and goes directly to her jejunum...which, according to, is:

The section of the small intestine between the duodenum and the ileum.


Basically, according to my rudimentary understanding of things, her feeding tube goes past her stomach into the first part of her small intestines so that she can 'eat' without the risk of spitting up, which could cause her to aspirate her food.

I think I already told you that.

I guess I'm just a bit fascinated.



So, Hazel Grace is weighed each day, and so far, for the last 3 days, she has been steadily gaining weight...

10 grams a day.

1 ounce a day.

And we celebrate this.

1 ounce.10 tiny grams.

For little Hazel, this is quite an accomplishment!

Today, when I went to see her, she was not doing so well.  The O2 levels on her ventilator were all the way up to 100, which was a pretty big jump up from yesterday, but the levels of O2 in her blood were only at about 67% and that was a pretty big jump down from yesterday.

That's bad.

Regular room air has an O2 level of about 21% and her O2 goal for her blood is between 85 and 95%.

That means that the ventilator was pushing 100% oxygen into Hazel's lungs, but only about 67% of that was being processed and passed around her body.

Again, rudimentary.  I hope that there's not doctors or something that read this and are cringing in their scrubs right now...

Anyway, this was cause for concern.  Hazel was not getting enough oxygen to keep her body and brain happy.  Her lungs are so damaged, it was thought that she was not processing the O2 because her lungs just couldn't do it because they don't have enough good surface area to get the O2 to her blood.

But they were doing it yesterday!

Looking at Hazel Grace, the first thing I felt was fear.  She was struggling...why?  She was so good yesterday...why is she hurting again today?

The doctor decided to do an x-ray on Hazel to see if maybe the tube was not in the right place...if it needed to go in or out a bit more.

They called the x-ray tech and he was up in a hurry and they just flipped the sides down on Hazel's 'tank' and x-rayed her.

It turned out that her tube needed to be pulled out.

Half a centimeter.

That's it.

Half a centimeter!

And this tiny bit...this half a centimeter could mean the difference between good oxygen levels in the blood and scary low oxygen levels in the blood.

In no time, the doctor was hovering over one side of Hazel's tiny bed and a nurse was hovering over the other and they pulled her tube out the whole half a centimeter...

and Hazel's machine stopped beeping.  A collective breath was released.

It's not that all her problems are over...we are far from that...but what a difference a half a centimeter made.

And it's the tiny things like that which make this ride such a wild one.  Every little number counts, and every day is a new set of numbers.

Every heartbeat is recorded.

Every little breath is heeded.

And Hazel Grace is just a tiny thing.

When I went for my check up with the doctor who delivered Hazel Grace, he prayed over me and he reminded me of this verse:

Luke 12:6-7
Are not five sparrows sold for two cents? Yet not one of them is forgotten before God.  Indeed, the very hairs of your head are all numbered. Do not fear; you are more valuable than many sparrows.

For all that I love sweet baby Hazel Grace, and for all that the doctors watch over her and track her every drop of blood, so much more so does God love both her and me...and them.

And so I step back from her isolette, and I breathe and I remind myself to not fear...

because my sweet baby Hazel Grace, no matter how tiny, is infinitely valuable in the sight of God...

and even every hair on her little fuzzy tennis ball of a head is numbered.  

Tuesday, August 20, 2013

In Their Own Ways

Hebrews 13:6  The Lord is my helper, I will not be afraid.

Each of the children continue to deal with the situation of baby Hazel Grace in their own ways.

Elizabeth says that she has never been afraid for me or for baby Hazel.  She says that she knows that everything will be ok because God has it all in His hands.

I struggle to have faith like that.  Sometimes, in the dark of the night, or even in the light of the day, I am afraid.  And I was surely afraid when I was in the hospital all through the days leading up to sweet Hazel's miraculous birth.

Gabriel loves Hazel Grace with an unconditional love.  He is so sweet in his affection for her.  Sometimes the strength of his attachment and love for her is surprising to me.  He is only 3, and has only seen her one time in person, but he loves to see pictures of her, and is totally in love with that baby.  He has a t-shirt with Snoopy on it.  The shirt is red and it has a picture of Snoopy holding some Valentine's Day cards.  When you ask Gabriel what is says across the bottom of the shirt, he will recite, 'Sorry Girls.  I'm taken!' And when you ask him who he is taken by, his answer was always, 'My mom!'.  But not anymore!  He wore that shirt today, and when I asked him who he was taken by,  he said 'Baby Hazel!'

I have been replaced!

But I love his devotion to her.  He will be her protector as she grows.

And let me tell you, you don't want to tangle with Gabriel!

And Jo...well, Jo is the silent one.  She may be loud and boisterous about everything else, but she doesn't really talk too much about Hazel Grace around the house, and she was the one who was hesitant to touch her.  But she, too, has love for her tiny sister.

She and Gabriel have been going to VBS in the evening these last few nights, and she came home on Monday with a sticker on her shirt with the verse in Hebrews that says, 'The Lord is my helper.  I will not be afraid.'

She gave me the sticker and wanted me to take it and stick it to baby Hazel's isolette.

Jo may be quiet, but she, too, loves deep.

Can you feel it, sweet baby Hazel Grace?  Can you feel the love your siblings have for you?

They are waiting for you, sweet Hazel.  They are waiting for you and they will take care of you.

You may grow, little one, you may grow to be big and tall and strong,

But to them, you will always be their little sister.

Their little sister that needed so much love to grow...

but don't worry, sweet one.  You may need so much love, so  much love to help pull you through, but

it's never more love than they have to give!

So, sweet baby, do not be afraid!

Monday, August 19, 2013


It seemed like a normal day around here.

But then I thought about what is normal?  I mean, really...what is normal?

Is a slash across your belly with a matching one across your heart normal?

Is 4 kids at home and one in a plastic fish tank at the NICU in the hospital normal?

Is a dead cat buried under the tree in the backyard after being pulled out from under the floor in your daughters' room normal?

I guess so...

I mean, for around here, it's normal.

Well, not the cat, so much.  We don't expect that to happen every day...we are kinda running out of pets.  In the past 4 years or so, we have lost 3 cats and 2 dogs.

Disclaimer:  One of those dogs and 2 of those cats died of old age.  Only one dog and one cat died prematurely.  We are not animal abusers in any way.  We love our pets.  The other dog got hit by a car, and the cat...well, that's another story.  Maybe another day...

 Sad.  But it is a part of the revolving door of life, isn't it?  For the pets, I can accept that.

I went to visit baby Hazel today.  I still can't get over how beautiful she is.  So tiny and fragile but such a fighter.

Did you know that statistically, more boys are conceived than girls, but more girls are born?  Did you know that girls survive NICU experiences better than boys?

Hazel Grace has so much going for her.  That she's a girl sets her apart, and then beyond that, that she has such an army of prayer warriors on her side.

I know you are praying for her.

It is obvious in the way that she is living...surviving...thriving...

She is not considered 'stable' yet, but she is what I would call 'balanced'.  She is tolerating her feedings and actually starting to gain weight.


I never knew how exciting a few grams could be!  I never knew how fast the heart could beat over a few cc's of mother's milk.  I never knew how much heart could be pumped out into those sterile bags that fill the freezer at the NICU and overflow ours here at home.

I am feeding her.

She is living off of me.  They have stopped her lipids because she is tolerating enough milk now.  She is thriving off of what I pump...from directly over my heart.

She still 'eats' through a tube that runs down her nose into her small intestine, but however it gets in her, she is liking it and she is growing!

And that is what she needs.  She just needs to grow so that her lungs can get stronger and bigger and able to support her on their own.

Medically speaking, other than her lungs, she is fine.  The valve in her heart is still closed, and she still has no bleeding in her brain.  She is perfect.

So far, the culture for her lungs to see if she still has in infection is negative.  It takes a full 5 days for the culture to be completely finished, but I think that they will start the inhaled steroids soon.  I think that they said that they didn't need to wait for the full 5 days.

I think.  Honestly, it's kinda hard sometimes to keep it all straight.  Sometimes just looking at her sweet little feet that she loves to stick out beyond the edge of the little cocoon they make for her is too distracting.  Sometimes, I am listening to the doctor, but then she will open her little eyes and look at me, and all I can hear is Charlie Brown's teacher...waawaaawa waaa waa wa...because I am lost in her gaze.

But I know the important stuff.

She's tolerating her feedings, she's gaining weight, and they were able to adjust the settings on her ventilator down slightly over since yesterday.

Beyond that, she's just my perfect baby...not a list of numbers and beeping machines.  Let the nurses take care of that part.

And for those of you wondering about Mrs W, well I saw her today, too.  She is such a beautiful sight to see in the hospital, too.  Always so cheerful and perky.  Wonderful.

Anyway...her tests came back good as well.  She will be transported to another hospital where they will be able to do surgery on her heart.

Please pray for her, too.  I link her to my Hazel Grace.  Once she moves to the other hospital, I won't be able to see her, but I will know that she's still out there.

And I will know that whatever she's going through, as long as she has breath, she will be praying for my sweet Hazel Grace.

I know this because she promised me.

And a promise like that is one you hold to the heart.  

Saturday, August 17, 2013

Take a Deep Breath...

I just got back from the hospital.  I was visiting our Hazel Grace, and I also got the opportunity to visit with another lady, Mrs. W, from our church who is there because she is having heart and lung issues.

Baby Hazel is 2 weeks old...

Mrs W is 78 years old...2,808 weeks

They both will have deciding days on Monday.

Life decisions...

Life or death decisions.

The one is just beginning...she hasn't had a chance at life yet...

and the other?

Well, she's really just beginning, too.

Talking with Mrs W is a life changing, faith challenging, experience.  She has so much to share, so much to tell,

and she wants to write it all down in a book.

She's just beginning.

What will happen on Monday?  Will Monday shut it all down?  Will Monday stop a heart, stop a life, stop a book, stop a witness?


Give it up...let it go...take it from here, God, because I can't.

The doctors will make decisions about Mrs W on Monday.  Can she tolerate surgery?  Is there anything they can do?  Is it just a waiting game at this point?

Breathe...breathe it up to God.  Sigh the prayers that catch in the throat.  God sees you and hears even the softest whisper alone in the hospital room in the dead of night when there's no one there to hold your hand or to clutch the other end of the telephone receiver and balance your fears.  Breathe...

Baby Hazel is not doing well, either.  The doctor has said that she is worried about our Hazel Grace.  She said that her lungs are in bad shape.

Breathe, baby Hazel.  Don't give up.  There's so much more out here for you...

She is on the jet ventilator now.  This ventilator fills her lungs with air and circulates it rather than pushing it in and out rhythmically.  It's a gentler controlling of air flow with a sigh every 20 seconds.

Breathe, baby Hazel.  Sigh it out.  God sees you, too.

Her lungs are badly damaged from the infection that she had.  She is done with the round of antibiotics, and she will get another culture tomorrow.  If that culture comes back negative, she will start inhaled steroids on Monday, which will help heal her lungs.  And if not...?  We don't know.

We have to wait til Monday to find out the results of the culture...

that's 3 days away.

Breathe, mama...breathe it out.  Sigh your prayers up to God.

The night closes in and the daytime stills.  The others are all tucked into their beds.

Soft breaths, smelling of minty toothpaste and baby sweetness.  Heads laid gently on the pillows, legs all tossed about with bare feet hanging off the edge, toes pointing towards the floor.  Loveys clutched to the chest...a stuffed kitty with the nose almost bitten off in the sticky hands of the one in the crib...a pink shirt that I wore when he was just a newborn nursing tucked tightly against my chest intertwined in the fingers of the one that barely still fits in the toddler bed...a fuzzy blanket tangled up with the one with the wildly curly hair...a camouflaged stuffed bear alongside the tall one that has been through so much lately, playing mother-daughter-sister all in one...

and far away in a bed all closed in and all alone is the tiniest of all resting under the beeping green lights of the monitors, clutching tubes and probes for dear life...

and me here...clutching straws and hopes and fears and dreams...

and at the same time, letting go with a breath and a sigh...

this is yours, God.  From the tiniest tiny of my dear sweet Hazel Grace up through the ranks to the 78 year old Mrs.'s all yours...


Let my prayers rise before You as incense, the lifting up of my hands as the evening sacrifice.  (Ps. 141:2)

Friday, August 16, 2013

Prayers for Hazel Grace

It has been two weeks since her birth, and every moment has been counted out, heartbeat by heartbeat and breath by strangled breath.

I know that Hazel Grace is in your hearts and your prayers. I cannot tell you how deeply we appreciate the outpouring of support that we have been receiving since this whole ordeal began.

I want to be honest and open with you here because sometimes I feel such a weight on my heart and it is so much easier to say it all here, in writing, than  to try to articulate myself in person...where the feelings are so raw that they cause physical pain to dwell on.

If you see me and you ask how I am and how our sweet Hazel Grace is, I will probably tell you that we are fine, that we are hanging in there and that we will all get through this by the grace of God.

But the truth is that I am dying inside...being torn up by the silent screams of


Why my baby girl???  Why must she, so small and innocent, be made to suffer? How is this fair? How is this right?

She lies there so tiny and defenseless

and I stand and watch over her incapable of doing anything to help her!

How is this right???

Hazel Grace is not doing too well right now.  She has an infection in her lungs that is causing her pain and discomfort, and the treatments for this infection are not easy, either.

And I see her there and I can do nothing.

I see her cry...she can't make a noise anymore because she has the tubes down her throat...but you can see her cry. Her tiny face scrunches up and her little mouth gapes and she cries silently...

and all I can do is watch...

and what kind of mother is that?

I hope she feels my longing and my yearning to pick her up and comfort her.

I hope she knows that she is loved.

Please continue to lift up our baby Hazel Grace in your prayers.  Please pray that she will find comfort and that she will be able to tangibly feel love wrapped around her.

Please pray for her healing that she would be made whole and well and that the nurses would be effective in controlling her pain.

And please continue to pray for our family...that we would be strong for each other through this. That my body would have a speedy recovery, that my heart would hold up and that we would all continue to see God's hand in all of this.

Because sometimes, it's a very dark path.

Wednesday, August 14, 2013

Hazel on my Mind

I feel like I think about her constantly.

As much as I could sit and look at her whole self for hours, for some reason, it's her hair that has me completely enthralled.  Maybe because her hair is something that I can relate to.

Her body is so small, and her limbs are so slight...she has no fat on her body; that would have come later in her development in utero, so she just doesn't have it yet,

But her hair?  It's as soft and sweet as any new baby's hair could ever be. I find myself drawn to it, wanting to touch and caress it and to cradle her little head.  Other than the tubes running down her throat to help her eat and breathe, her head and face are unobscured, unlike her body that has lines and stickers all over it, making me nervous to touch it for fear that I might disturb something.

Right now, her hair is very dark, but I find myself wondering what it will look like as she gets bigger.  Will it be light and wispy like Jesse's?  Slightly darker and ringlet curly like Gabriel's?  Dark and fine like Jo's...or dark and incredibly think like Elizabeth's?  Will she be our black haired child to match her father?  Or lighter like me?

Looking at her is to survey the incredible miracle that is the fusing of two people...picking up this trait or that trait and making a unique human being that is not a whole of one or the other, but a glorious combination of the both.  Of course, all children are that, a one made up of two, but to see it happening before my eyes, this slow development of being, a shedding of light on a process that should be darkly hidden, makes it all the more obvious and notable.

I know that some people who have babies in the NICU go in armed with an artillery of questions for the nurses:  has she gained weight? what are her numbers? how is her oxygen? how much did she eat?  head circumference?  tummy size?...on and on with specifics of how their baby is

Does it then make me a less attentive parent if I go in not with those questions but with the basic questions of how is she doing?  did she eat?  poop? how's her breathing? and then just to sit and listen to the nurses tell me about her.  She was angry today when I changed her...she was happy when I put her on her tummy to sleep...she was agitated or uncomfortable or happy or alert...

yes...tell me that.  Show me that you love my baby and are attentive to her not just her numbers and help me get to know the her that is her since you get to be here all day with my love and I only get small snippets.  Help me learn my baby because long after the machines stop whirring and beeping, she will be ours with us and I want to know who she is from the very beginning, I want to learn her inside and out.

Don't get me wrong, I do have my questions, some of them questions that have never been asked in the NICU before (will her taking narcotics daily for pain due to her intubation now cause withdrawal when she is taken off of them?  Will she be the only one year old in NA...'Hi, my name is Hazel, and I have a problem...) ...I'm sure the nurses love me for that!...but for the most part, the numbers and percentages are something that I have only a rudimentary understanding of, and so I would rather look at the whole of her that makes up my baby Hazel than worry about the slight changes in this or that.  That's why the nurses are there, right?

Tell me the milestones.  Speak my language and tell me she's improving or she has a hurdle to get over and I will praise God for her achievements and pray over her challenges.

And today?  She is doing well.  She is holding steady, weaning only slowly off her breathing apparatus.

But she's right on par with what is expected of her.

She's tiny and perfect and strong...

and she's a Flores girl, so she's feisty like the rest of us...

just ask the nurses!

On Her Tummy

I got to go and see Hazel Grace today.

Not that that's something amazing, because I get to go see her every day, but in reality, it really is kind of amazing because that means that she is there for me to see...

every day.

And I praise God for that.

My tiny Hazel was sleeping on her little tummy today when I got there to see her.  She looked so peaceful there with her little legs tucked under her and one hand under her little cheek, that I didn't want to disturb her or wake her by touching her, so I just let her sleep and I just watched.

Yesterday, I got to change her diaper and help the nurse take care of her.  It was amazing and nerve-wracking at the same time.  She's just so tiny and seems so fragile and I am so afraid of doing something wrong.

But I know I have to practice and become comfortable with who she is because it is who she is and no matter how she grows or how she matures, this is still who she is...

right here...

right now.

A miracle never to be forgotten.

But today, I did not do much of anything but sit and watch her breathe.  I found myself not actually being able to believe that she is our baby.  Her perfect self is just so tiny.  How did I...we...make something like this?

She is divinely orchestrated,  Her form and her timing...

breathe in...breathe out.

Finally, I can't resist it anymore.  I have to touch.

I must reach in and cradle that tiny downy head.

I slip her little door open and reach in.

One hand, one little head, two hearts beating, hers and mine...

one love.

She remains calm as I cup her head, her softness warm against my fingers,

and she rests on.

When the nurse comes to draw blood for the check they do every 3 hours, the respiratory specialist and the one she reports to are incredulous at the results.

The results are so good...can they be true?

I keep cradling my Hazel Grace and the nurses lower her oxygen levels in response to the good results.

She is doing well.  The monitors beep slightly less.

Do you know me, Hazel Grace?

Am I imprinted on you like you are on me?

Do you feel me here?  Does my presence calm you like my watching your tiny chest rise and fall calms me?

But I can't stay forever, little Hazel.  I have to go.

And I have to leave you here.

But you are in good hands, and I will be back.

Until then, sweet baby, sleep in peace...

your mother and your Father are watching you

because you are fearfully and wonderfully made. (Psalm 139:14)

Monday, August 12, 2013

Putting it all in Perspective

Some of you have been asking to see pictures of baby Hazel.  And it is not that we are trying to hide her from the world, nor that she has some sort of deformity that we are keeping under wraps,

it is more that we are not sure that people will understand.  We do not want the beauty that is our Hazel Grace to be obscured by a photo that is misunderstood.

In talking to people, and actually in some cases, it doesn't seem to matter if they have seen a picture of our precious gift or not, I have realized that most people have no idea the size and form of a 24 week gestational baby.

For which I do not blame anyone.

A baby of this size should be hidden deep within to be knit in the private recesses of a mother's womb, safe under her heart.

But our little Hazel could not wait to meet the world, so meet the world she did.

And I want to help you all gain a little perspective on her.  I feel that through my writing, you have all been able to gain a little insight in the her that is her but not so much in the design of her.

Make sense?

So, let me help you.


is not our Hazel Grace.  This is a pretty close to newborn full term baby.


is not our Hazel Grace.  This baby was born at almost 36 weeks gestation.


is getting closer, but this is not our Hazel Grace.  This baby was born at 29 weeks.

And this...
Well, this isn't our Hazel Grace, but this is a baby that was born at 24 weeks, just like her.

To put a size on it all, here's another picture of the same baby...

Tiny.  Beautiful, but tiny.

Hazel Grace's diapers are the size of a deck of playing cards...and they are way too big for her.  The mask that covers her nose to help her breathe?  The size of the tip of your pinky finger.

Hold out your hand, palm up.  Hazel Grace would fit in your hand with the back of her head on the end of your middle finger and her feet resting comfortably on your wrist.


But strong.

She is doing well today.  She is still on the ventilator, but she is doing well.

And I will put up pictures of our actual Hazel Grace soon.

Soon, but not yet.

My heart can't handle it yet.

Saturday, August 10, 2013

Baby Hazel Meets the Family

Faces pressed to the hard plastic where their little sister lay breathing, you could see their wonder.

Is that my sister?  Is that my sister?  Is that my sister?

Then the tiny head turns slightly and the little eyes open, and the breath is drawn in anxious anticipation...

Can she see me, Mommy?  She's looking at me!  Look at her tiny eyes!  They're open!

The nurse opens the little doors on the side of her isolette, and Gabriel is the first one to touch his smallest sibling.  He's been so anxious to see her and to meet her.  His little preschool hands, the hands that grab and climb and push and paint and make messes are guided gently by the patient nurse to cradle baby Hazel's tiny head and little feet.

Her eyes close, and she snuggles in to the touch.  His nose is pressed against the isolette between the doors.  He's balanced on the edge of that swivel chair eyes never leaving the tiny figure nestled in his hands.  His hands are gentle, soft on her tiny fuzzy tennis-ball sized head and her miniature feet with their perfect toenails

I watch from the other side.  'Be gentle,' I breathe, but there's no need.  He is the gentlest of the gentle.  This sister that he has been longing to see is finally in his hands, and I know the touch is permanently engraved on his heart.

Jo is next.  Her hands are sanitized, the nurse guides, and we encourage, but she is tentative.  She wants to touch...but not.  She barely grazes the soft head and shies away from the waving feet.

Elizabeth stands back, watching.  When it is her turn, she reaches in and touches her sister with awe.  The long fingers curl around the head and fold the feet in to fetal comfort.  Hazel's eyes close again, and if she could, I'm sure she would have been purring.

She's so much smaller than I thought, she whispers.  She just so tiny.  A perfect little baby, just so tiny!

When it's time to go, Gabriel pushes against me unwilling to leave.  But where's Geoffery?  He asks.  I can't leave if Geoffery's not here to watch her!

We tell him that Geoffery has gone to take a break because he knew that we were coming, and the obliging nurse tells him that she will call Geoffery to come back now that we are leaving.  Accuse us of misleading a 3 year old, but I figure if it helps him sleep at night to know that his Geoffery is watching over little Hazel in his absence, then so be it.

He's somewhat comforted, and we leave.

We leave our baby Hazel.  We leave her with the imprints of our hands like blessings on her head and on her feet,

and we leave with the imprint of her

deeply etched upon our hearts.

We love you, baby Hazel.  You are one of us and we love you.

Friday, August 9, 2013


I feel heavy.

My steps are heavy and slow.  The pain from the gash, from the hole they carved in my flesh to bring baby Hazel to light, to safety, throbs...a tangible reminder of what I have,

and what I have lost.

This was to be our last child, Jimmy's and mine.  Baby Hazel was a surprise, and we knew that this was to be the last time I would experience pregnancy and childbirth.

And I intended to savor it.

I am one of those weird ones, I guess.   I love being pregnant, and I look forward, in a way, to the pain of labor and the pushing and the searing and the slip sliding baby bloody on my chest.

The wonder.

But I didn't ever get that.  And now it's done. Almost from the time that I knew that I was pregnant through the 5 short months that I held Hazel inside me under my heart, I suffered.  I never got the swelling belly.  I never got the energetic 2nd trimester.  I never got the carefree time of being pregnant.

And now it's over.  And I'm sad.

No...I'm mad.

Is that selfish?  Am I being thoughtless for thinking that way?

Don't get me wrong.  I am happy that baby Hazel is out.  My womb was a death sentence for both of us.  A sentence that would have been carried out in mere hours had she not been taken from me.  I know that given the circumstances, there is no better place that she could be,

but why?

I throw that question to heaven, to God.  And He catches it and cradles it.   He tells me to walk on.  He tells me that He has great things in store for me.  He has plans to prosper me and not to harm me.  Plans to give both me and Hazel hope

and a future (Jer 29:11)

But where, God?

Where is our future?  Is our future together?  Me and Hazel and Jimmy and the kids?

Or is it plans to take Hazel to Himself?

So I am heavy.  My body is heavy.  My breasts, filled with milk for one who can't nurse, are heavy.

And my heart is heaviest of all.

As soon as the doors to the NICU open, I can see her isolette straight ahead.  My throat tightens and my breath gets caught there.

I need a reminder to breathe almost as much as Hazel does.

Then there is the ritual of the washing of the hands.  The clean cool water washing away everything that comes from the outside world.  That is followed by the slipping on of a gown lest even our clothes harbor something that would be bad for the babies tucked away in this humming corner of the hospital.

Her bed glows blue from the bililight suspended above.  And this time, she is not breathing on her own.  Her tiny chest rises and falls in a clicking rhythm dictated by the tubes running down her throat.

Her lips are dry.  Her mouth looks parched.  My breasts ache, milk let down to flood the vast nothingness that stands between us.

The baby next to my Hazel has gone home.  A lusty boy.  Congratulations are in order to his parents.

A new baby girl has taken his place.

She cries, angry, when the nurse tends to her.  Mom sits in a rocking chair with arms out ready to receive her little one to feed, rock and comfort her.  Dad stands by.

The peaceful trio is quickly hidden behind a moving partition that is used to seclude and give comfort to those parents who can hold their children.

But what about those that can't?

There is no rocking chair for me.  If I am lucky, I get a swivel desk chair that the nurses use to enter records into the computer.

There is no rocking comfort for me.  Who would hold me with the empty arms and overflowing heart?

And there is no partition for me.  No hiding.  While the happy families can hide their joy and celebrate in private, I must wear my grief on my sleeve.  There is no hiding the tears slipping down my cheeks, washing the hard plastic that separates me from my heart, but that at the same time, is keeping that heart beating.

And then there is the goodbye.  How do you say it?  How do you put into simple words that which kills you to even think?  How do you turn your back on someone and walk away when you never know if it's going to be the last time?

But how long can you sit on that swivel chair and helplessly watch the tiny life breathe when you have running, jumping, hearty life at home waiting for you, needing you?

When I was preparing for surgery, last Thursday afternoon, when tears quivered and panic threatened, two separate people, my doctor and one friend who just happened to be coming to visit at that time, prayed over me the same prayer.

And this is what it was:

The Lord bless you and keep you.
The Lord make His face shine upon you, and be gracious to you
The Lord lift up His countenance upon you, and give you peace
(Number 6:24-26)

So, sweet baby Hazel, turn your face towards His, and may He smile on you and give you peace.

Wednesday, August 7, 2013

More Than Angels

Of all the kids, it seems that Gabriel, our 3 year old, has had the hardest time dealing with the whole traumatic event in our family that has been Hazel's birth.

A few weeks ago, while I was still home on bedrest, Gabriel informed that he had a cat in his tummy. This cat made him sick sometimes, but not to worry because it would soon come out and he would feel better.

The evening that I got home, he asked me about baby Hazel, and asked me if they cut open my tummy and took her out. Seeing as that's exactly what they did, I said yes.

The next day, Gabriel was super clingy and crying. Finally, he said that his tummy hurt because the cat in there was making it hurt. Later, though, after a nap with mom and dinner, he felt better and informed us all that the doctor had cut open his tummy and taken out his cat. His cat, now named Goeffery, had then ridden his bicycle to the doctors where baby Hazel is and is watching over and taking care of her.

Sweet baby Hazel! Not only does she have a brother who is crazy about her and already protective of her, sight unseen, but she has Geoffery the cat looking out for her...just hanging out there over her isolette...

Geoffery and all the angels.

Tuesday, August 6, 2013

Visiting Hazel Grace

Today's visit with Hazel was absolutely amazing! When we got there, she was snuggled on her side with a tiny cozy blanket was wrapped around her legs. She was sleeping and peaceful, and I was hesitant to disturb her.

Beauty personified.

Then the nurse came and told us that all was well with her. She is tolerating her food (pumped breast milk) well and was increased from 1.5 cc's per 3 hours to 2.3 cc's every three hours.

But the best news was that the brain scan that she had last night revealed no brain bleed!

This is incredible news! It doesn't mean that she won't have  any down the road at some point, but it means that right is good.

God is good.

But the bestest best part was when the nurse started to check her over.  She turned off the bililight - which, by the way, Hazel is down to only one bulb now - and rolled little Hazel to her back. Then she took off her little diva eye mask and as I reached in to hold her tiny hand, she opened her eye and looked at me!

Now go ahead, you party poopers, and tell me she can't see me. Whatever. She looked at me and let me know that she's gonna be alright. She's not going to give up.

She's a fighter.

And she's got the angels on her team.

Saturday, August 3, 2013

Baby Hazel Cries

Baby Hazel with her fused eyelids and translucent skin has won the hearts of the NICU nurses. Now, I'm not saying that the nurses do not love the other babies just as equally, but I feel that to them, our baby Hazel is a miracle. I know that all babies are miracles, but there is something different between a 35 week miracle and a 24 week miracle.

Other fathers push mothers in wheelchairs to see their hold them, feed them, rock them and make plans to go home together soon. These babies are small and perfect with their gentle eyes and soft round heads, with their preemie sized diapers and everyday more lusty sounding cries.

While Hazel lies still. Breathing rapidly, chest and stomache rising and falling in the ancient rhythm of life that she is still struggling to grasp. She wears a tiny eyemask as if she's a sleeping diva to protect her still fused eyes from the harshness of the lamp that her isolette is placed under. Her diaper is so small I'm sure they must have bought them at a toy store designed for baby dolls. Her skin is mahogany. It is paper thin and translucent so you can see right through it to every ounce of blood that is coursing through her needle thin veins.

But she is the belle of the ball. There is no talk yet of going home. There is talk of tomorrow and maybe next week, but that's it. There is talk of scans and tests and maybe's and what if's, but it's talk of the heart...from the heart.

Jimmy and I visit, helpless, overwhelmed. Machines whir in every corner and I wonder who I am and how I got here. I see our baby, but can't wrap my mind around the miracle that is her.

My eyes well up helpless and confused when a nurse in all blue with a greying braid long down her back scurries over and gushes to me about our baby.

Oh, my she's so sweet, she says, and I look again into the isolette and see past the machines to the tiny hands and feet waving. My abdomen spontaneously  cramps in remembrance of just 2 days ago when those kicks were felt from the inside.

Her grey braid swings gently as she leans over,  fighting with the blue-bulbed lamp for a view from above. She's amazing, she says. She turns to look at me and tells me that they are all amazed to hear her cry.

I think back to the haze that was the OR. I see the huge disk lights hanging above my head and the words 'Baby's out' said and repeated through the room like a chant. And I hear a faint bleat. Who let a sheep in here? That doesn't seem very sanitary...but I hear it again and my heart knows it's her.

Yes, I say, I heard her cry when she was born.

Again the swish of the braid. Yes, but I had her last night. She was upset and cried. But when I put my hand in there and cupped her leg like this...she shows me a soft nest of palm...she crossed her little arms over her chest and settled.

Again, the eyes look into mine. Those eyes convey hope. She's strong for such a little one, she says.

Yes, I say around the tightness in my throat as I watch her braid disappear down the aisle of machines.

Yes, she's strong even for a big one like me.

I  turn to look one last time then head out. I feel a hand on my arm and turn to see a smiling kind face framed with blonde wisps that have escaped a clip held high on her head. i hope you don't mind, says the blonde nurse. I hope you don't mind that I pray for Hazel. I have it good, you know. I am in good communication with God. So if you don't mind, I'll pray for her. God listens to me.

Of course you can pray, please do. Because right now, that's pretty much all we've got.