Sunday, September 29, 2013

The Greatest Things...

One of the greatest things that a mother can hear is when someone compliments her children and their behavior.

I took Gabriel and Jo to a birthday party on Saturday.  I didn't know the mom or the child that well.  There are actually 3 kids in the family.  One girl who is younger than Gabriel, the birthday boy who is aged between Jo and Gabriel, and his older brother, who is older than Jo.   Jo and Gabriel really love playing with the boys at the gym, so when we got the invite, I decided to go ahead and take them to the party.

I mean, after all, Jo and Gabriel are home schooled and so must get the 'socialization training' from somewhere, right?

I saw them into the house, checked things out a bit and then got in the car and sat there reading my book.

When it was time to go, I went back in to collect them, and the mother was literally gushing about the kids and their behavior.

First, I checked behind me to see if she was talking to another mom who might have walked in behind me to pick up their kids, but once I realized that she was really talking to me, I tuned in to what she was saying:

Your kids are so well behaved!  Jo is just amazing.  She got along so well with all of the kids here and really helped everyone play together nicely.  I was kind of worried since the kids were all such different ages, but she managed to pull everyone together so well!  And Gabriel was so well mannered!  He is so cute when he says please and thank you.  It was wonderful to have them here.  They really seemed to enjoy the playroom, and Jo was really into the store I set up down there.  I would love to have them come and play with us again!

(They obviously have better social skills that their mother, who is painfully out of place in social gatherings like that!)

Anyway, that plus the fact that Hazel Grace now weighs 3 pounds, 7 ounces and is holding steady on her ventilator rates just made my weekend!

How was yours?

Thursday, September 26, 2013

Two Months Old!

Hazel Grace turns two months old today!

She is doing very well.  Her O2 needs are not quite stable, but they stay pretty low, and her pressure is down to 27.  While that's a moderately high pressure for a baby, it's a great pressure for our Hazel who was at 44 two weeks ago.

She weighs 3 pounds, 4 ounces and is absolutely beautiful!  Because of her age and size, she is beginning to regulate her own body temperature, which means that she will be ready to move into an open crib soon.  She has to get off the ventilator first, though, so it will still be awhile even though the rest of her might be ready to move.  I am not anxious for her to move out of her isolette yet anyway since she gets a lot more quiet/dark time in her isolette which promotes sleeping and therefore brain development.  (Did you know that the brain only develops during sleep?  That's why it's so important!)

I know that she will need to get used to the noise and light of a 'regular' room, but she is still only 32 weeks gestational age, and even though most babies that are born at 32 weeks go straight to an open crib, since she was born so early, she's a bit behind on things, so I would like to see her tucked away a little longer.

It looks like that if all things are still going well by Sunday, I may actually get to hold her.  At last!  Even though I have been 'allowed' to hold her for the past week since she has gotten more stable, there has never been a time that I can go in to the NICU during the day for long enough to get her out, hold her and then tuck her back into her isolette.  I also want Jimmy to to be there for the first time she comes out which means that weekdays are out.  Of the four doctors in the NICU, 2 of them encourage holding and 2 don't, so I have to get there on a day that one of the ones who encourages it is on duty, so that limits us as well.

I am excited and a bit scared.  As much as I want to hold her, I don't want to extubate her accidentally in the process, and it also seems like every time I am this close to getting to hold her, she takes a bad turn and can't come out to play.  I know that there are benefits to my holding her, and those always need to be weighed against the trauma of moving her.  I want the absolute best for her, but I am also dying to hold her!

I can't believe that it's been a mere 2 months since she was born, and yet it seems like she has been a part of us forever now and I can't imagine life without her.  Maybe that sounds silly since she's not really here with us, but the trip to the hospital every day has become a bit of an anticipated routine.  Jimmy and I get to go and see her together and it's kind of funny that since we can't hold her and she is usually asleep when we get there, we end up just kind of hanging out together by her bed and chatting with each other and the nurses.  So in all of this, Jimmy and I have actually gotten quite a bit of time together, and baby Hazel sats (has good oxygen saturation) well when we are there and she hears our voices even though she is sleeping.

So, all in all, despite the upper right lobe of her lungs collapsing briefly on Sunday, she is doing quite well and we have high hopes of her continuing to both gain weight and develop healthy lung tissue.

But either way, she's hitting all the milestones that we expected of our 2 month old micro preemie:

Weight gain?  Check!
Incredibly resilient?  Check!
Superbly sweet and adorable?  Double check!


I wrote this yesterday (Wednesday), but didn't get a chance to post it.  I still wanted to share it though, so I hope you enjoy!

Today, because it's a beautiful day and because it's hump day and because I just really wanted to,

I took the chair off the porch and put it in the middle of the front yard and sat down.  And as the sun dappled down and gently warmed me and the crickets, birds and wind chimes worked together to serenade me, I did nothing.

I pushed the laundry and the dishes and the weeds and the diapers and the and the and the...all away.

I pushed it all out of my mind and away from me denying their existence for a short while and

I kicked back and sighed and breathed it all in...

Our yard, our house, our children all sleeping inside, taking naps after a fun day at the playground with friends.

A call to the NICU earlier had reassured me that Hazel Grace is still holding her own, sweet baby Hazel Grace, warm in her isolette wrapped in a blanket, cocooned tightly against all the troubles that the world has to offer

and I realized fully that

I am blessed.

And I stayed this way, soaking it all in, the sun, the birds, the wind chimes, the crickets, our house, our family, my husband working hard to make all of this sitting here in this chair doing nothing...

For 3 whole minutes

Then Jesse started to call for me and Jo woke up and walked out to join me and Baby B woke up and started to cry and Gabriel got up and came out to ride his bike and Elizabeth walked up the driveway, home from her class in DC,

and as they all came one by one to join me,

I saw my blessings being multiplied in front of my eyes

and the volume turned up on the refrain that has been playing in my mind all morning:

You are good, your are good, and your love endures forever
(a line from Jesus Friend of Sinners by Casting Crowns)

And I felt it deeply.

He is good.  We are blessed.

And grace flows even as patience ebbs and worries mount

and I grasp at the rays of sun that are warming me to put them in my pocket and to hide them in my heart to pull out for when the day turns to clouds

because I know that this will not last, this peace that surrounds me because dinner bath bed time will come and so will the no's and the tears and the I don't want to's

and Hazel's monitors will beep and alarm again

and all of these things will happen because I am alive and they are alive.

I cannot have the good without the bad, the sun without the clouds, because I am here on this earth and I, by God's grace, am breathing and walking and whole

so let me say it one more time,

let me hide these Words in my heart

because they are a constant ray of sun and hope even when the storm begins to rage:

Psalm 136:1
Give thanks to the Lord, for He is good
And His steadfast love endures forever

Wednesday, September 25, 2013

Life's a Beach

Have you ever had that time, at the beach, where you have gotten caught completely unawares by a wave?

You know, the big one that picks you up and throws you around

grinding your face into the sand below, tearing at your swimsuit and wrapping your hair around your head in a violent way

until you don't know which way is up and you just pray to God that when this wave has passed that you can get your feet under you and wipe the stinging sand out of your eyes enough to see and prepare for the next wave that comes

That is the NICU.

The NICU is not a roller coaster ride.  You cannot get on and off when you want, and you can never see the hills coming.

The NICU is an angry ocean intent on showing you who's boss.

Hazel Grace was doing well.  She finally got her left lung back open and she was doing well on the jet ventilator with settings of a pressure of 28 and even though her O2 needs were hopping all around, they never went as high as they were when her lung was collapsed.

Then, on Sunday early morning, the top lobe of her right lung collapsed.

Crash!  The wave hit me completely unexpectedly.  She had been holding her own for about 3 days, and we had just seen her late Saturday evening.

And I hadn't even taken a breath before that wave hit me.

But it seems that she is pulling through well and even though her pressure went up one point to 29, she is oxygenating about the same as she was before it collapsed, so even though they have not done another x-ray to see if it has opened up, clinically, it appears that it has.

Head above water, doggy paddle...


But how long can I hold out?  How long can I keep this up?

I am tired, fighting exhaustion with a cup of coffee that grows cold before I can drink it

And I feel like I'm sinking and everything tastes salty and it shouldn't because I'm not in an ocean and so I wipe at my face, my chapped lips and burning eyes and find tears that I didn't even know were falling

I sit in the corner, body curved around the attachments to the pump that I must use so that I can contribute the one small thing that I can to the health of my baby, and I feel the milk flow dripping into the bottles with the rhythmic whirring of the machine

like so many tears.

They say that to help your milk to let down better, it helps to look at a picture of your baby or hold a blanket the smells of her, but I don't have a blanket of hers that I can bring home and the smell that my mind conjures when I picture my sweet baby Hazel Grace is one of antiseptic and plastic tubing...

one of a tiny body enclosed in a plexi-glass case.

But I have come to look forward to that scent, the scent of my baby, the scent she breathes

So what if it's not the scent of clean diapers and baby lotion

It's her scent.

And what does she think of me?  A disjointed hand that smells of anti-bacterial foam?

But she knows my voice and sats higher when I am there and she hears me talking.

And so I go and I sit and watch her sleep.  I look at her, at her little chest vibrating with the jet and her lungs expanding in their steady rhythm and I lean heavily against her isolette.  I cling to my sweet baby Hazel's bed like a life raft

like it's the only thing that can keep me afloat in this wild ocean.

And I leave only reluctantly knowing that once I turn my back on that little bed, once I pass through those automatic doors and they latch shut behind me,

Once I look away,

I am setting myself up to be unexpectedly bowled over by whatever the ocean of the NICU decides to throw my way.

But so far, right now, today, the sea is calm and the waves are gentle

as gentle as the sigh that my sweet baby Hazel makes when she's snuggled in on her tummy and ready for a peaceful night's sleep.

Wednesday, September 18, 2013

What Did You Expect?

You can always tell the new ones.  You know, the new parents that are coming into the NICU for the first time.

The mother is almost always holding her belly, supporting that empty space where just a few hours ago there was a baby, and the dad is either pushing her in a wheelchair or walking right behind her, usually with a protective arm out to her.  Not necessarily touching her, but an arm there as if to catch her in case she falls.

Or maybe it's the other way around.

Why do the dads always walk in the back?  Chivalrous?  All of them?  I doubt it.  Sacred silly?  Probably.  And in the name of ladies first, the men propel their wives in front as a sort of shield.

But that's ok.  We women are used to it by now, and besides, we are the ones that just labored through childbirth, whether naturally or with medical intervention.

There's a deer-in-the-headlights sort of look about these couples that find themselves in the NICU for the first time, and a nurse usually greets them in an almost too cheerful voice and points them in the direction of their baby.  Mom and dad hold back a bit and let themselves be led to the bed that holds their newest, tiniest one, and gather around and stare with a look of disbelief on their faces.

How did we get here?

I can speak authoritatively on this subject because I am on my 49th day of sitting beside Hazel Grace's isolette which gives a clear view of all of the comings and goings of the main entrance to the NICU.

I think that anyone who has not had a NICU baby before can have no idea about what goes on behind these doors.  The list of people who get beyond the front desk is a short list...only the most privileged can get beyond the lady who sits at that desk and guards our babies like an eagle guarding its nest.

No wristband?  No entrance.  It's that easy.

But the identifying letters and numbers on Jimmy's wristband have long since worn off and the band itself has come apart, but that's ok because they know us now.  The guards at the main doors to the hospital let us in at any hour with a smile and a biggie...we know you...

you belong here.

Hazel Grace's numbers continue to creep a bad way.  She's now at 27 when just last night she was at pressures of 'only' 24.  And as I talk to my mother about this, and about the different things that could be coming down the pike for our sweet baby Hazel Grace, she tells me,

'Well, if anyone can handle it, it's you.'

Ummm...thanks, I guess?

I was looking online at some information on a procedure that Hazel may need if her breathing does not improve, and a quote from one of the mothers on the video clip really caught me.

She said:

'Your standard of normal has to be determined internally versus being determined by somebody else's standards.'  

How so very true.

This is not what we expected when we found out that I was pregnant with Hazel, our fifth child.  I never dreamed that I would be sitting here, watching my baby breathe and rejoicing with every rise and fall of her tiny chest,

but this is our 'new normal'.

And accepting this 'new normal' is what gives me the courage to stride through these doors and flash my wristband with confidence.

This is my life and Hazel Grace is a part of our family, no matter where she sleeps.

So I turn and catch the eye of the new mother hesitantly stepping over the threshold of the NICU for the first time, and I give her a smile.

A smile that says, 'It's ok.  It's not what you expected, but it is what it is.'

Welcome to your 'new normal.'

And I cast about in my mind for a stronghold, a verse to hide in when my courage begins to fail, and I land upon this:

Proverbs 23:18
Surely there is a future and your hope will not be cut off.

And my eyes turn back to my sleeping, breathing baby and I let my forehead rest on the quilt that covers her bed and protects her from the overhead lights

and I whisper to my sweet baby Hazel Grace

You weren't what I expected,

but how could I wish for anything more?

Tuesday, September 17, 2013


Time has flown and time stands still.

Baby Hazel is 6 weeks old and yet it seems like she was born yesterday.

It has been but 6 weeks ago that our world was turned upside down by the birth of our sweet little one, and yet it seems that we have been in this mode of juggling life and hospital visits forever.

Today, I am at her bedside (isolette-side?) yet again just sitting here looking at her. She is so tiny and perfect lying there all wrapped up in her little blankets. Her skin is a sweet pink color and her hair and nails are growing. 

But I know inside it doesn't look quite so good.

Her lungs are still very bad. She is already weaning off her steroids, and yet her lungs are still bad. Her collapsed lung has expanded almost completely, which is good, but the machine that was necessary to help that lung fill caused her to develop PIE again, which is basically little pockets of air that get pushed into and trapped in the lining of her lungs, which is bad. 

This means that Hazel is back on the jet ventilator, she had gone to the conventional to help re-inflate her collapsed lung, and her pressure is back up to 24 and continues to creep up slowly which is also bad. Well, if it's what she needs, then it's what she needs, but that means that she is just that much farther from getting off the generators and getting to come home. Of course, we are not even expecting to have her home for another 2 months or so, but this just bumps it back even farther.

The good thing, and what she really has going for her, is that she is tolerating her feedings very well and is up to 8.5cc's per hour.  She is still getting this through her tube, but it is my milk mixed with fortifiers to make it have more calories and supplements. And all these calories means that she weighs 2lbs 11 oz (1225g for you metric folk out there) which is almost double her birth weight!  Yay Hazel!   

Hazel's neighbor, Ian, went home today. I am at the point where I can rejoice with the parents who get to take their babies home even though I know that we are here for the long haul because I just know that this is the best place for my Hazel Grace, and I know that one day we will be the ones walking in here excitedly wielding the carseat adjusted for her tiny self and ready to go home. 

But what I find harder to come to terms with are all the pregnant women that I seem to see everywhere. I wish them all well, of course, but I am finding it hard to accept that although I should still be pregnant, I am not. I think I find that even harder than seeing newborn babies.  Those babies don't belong to me. I have a newborn and although I wish things were different, I wouldn't trade her for anything, but that pregnancy was mine and I lost it.  Even though it still pains me to not have a 'normal' newborn that I can hold and nurse, I have come to terms with Hazel being Hazel, but I still have not found the way to accept that this is me...the non-pregnant, done-with-that-life-stage me.

I feel as if somehow I have failed. I know that's crazy because there was nothing that I could have done to change the outcome of this pregnancy, but I can't help but feel that it was somehow my fault. But there's not even anything to look back on and and say 'if only' about.  I didn't fall, no accidents, no drugs or alcohol...nothing. 

It just was.

But the early termination of this pregnancy through a preterm birth means that I ended everything early...

And if I'm not pregnant, then that means no more babies. And if there are no more babies, then these will all grow up. And when these all grow up then I will miss them being here and being my babies....

And I was supposed to have 4 more months to prepare for that and a snuggly baby to love who also cried in the middle of the night to remind me of how much I will NOT miss that stage! 

But then I realize that that is me being comfortable in the life stage I'm in, and not only do I need to move on to be able to realize my full God-given potential, my whole life and comfort will be shaken when our sweet baby Hazel Grace comes home anyway.

Nothing is stagnant. Nothing is stable. Nothing is ever where you left it and there's no point in looking back. 

So, rather than mourn my losses, I need to lift my head and wipe my tears to be able to see more clearly the new challenges and opportunities that are being laid before me.

Because no matter what we do or don't do, time flies!

Phillipians 3:13-14
But one thing I do:  Forgetting what lies behind and reaching forward to what lies ahead I press on toward the goal for the prize of the upward call of God in Christ Jesus.

Sunday, September 15, 2013

Why Do Bad Things Happen to Good People?

Why do bad things happen to good people?

Ahhhh the age old question of why do bad things happen to good people.  I mean, I consider myself to be a pretty decent person, so why is all this happening to me? Why do I have a preemie baby and why are her lungs so bad??? Why are we going through all of this?

Pastor Dan had an interesting comment about that question last Sunday. He made the comment that that question is very much a first world question. 

Oh, how true!

Let me tell you a bit of our story to prove my (his)point.

My pregnancy with Hazel Grace was not an easy one.  It was fraught with pain and complications from the get-go.  When i finally came to the hospital on the 28th of July, it was because I had lost so much blood that I was lightheaded and it was getting hard to breathe.  My blood pressure was so low that I could not brush my hair. Getting out of bed was hard enough let alone contemplating the task of actually wielding a brush with enough vigor to cause it to make its way through my tangled mass of hair.

At the time that I came to the hospital, I was not yet 24 weeks pregnant.  Or at least the doctors had not dated me as such.  That meant that the nurses didn't really try to care for the baby and they were only interested in caring for me even if that meant 'letting' me miscarry.  Which was disconcerting to say the least because I was in active labor with contractions coming every 4-6 minutes. 

Then, the doctor wheeled in a big sonogram machine and I was dated at exactly 24 weeks and the action began.  I was given magnesium sulfate to stop the contractions and to help protect Hazel's brain if she was going to born early, and I was given the first of 2 shots of steroids which were to help her lungs develop more rapidly, again, in case she were to be born early. (The hope was that the contractions would stop and I would be on monitored bed rest for the rest of my pregnancy.)

By now, it was Monday afternoon.

The Mg could be given for 48 hours and the second steroid shot was also given 48 hours after the first.  

We were now pulling up on Wednesday evening.  I had also received 4 units of blood to try to replace some of what I had lost, but my blood counts were still very low and my blood pressure was still extremely low sometimes dipping below my 'norm' for the time of 80/50. 

The reason for the severe blood loss was originally contributed to placenta previa, which is where the placenta is very low and covers all or part of the cervix, but then it was determined that I also had a placental abruption, which is where the placenta tears away from the uterus. An abruption, if minor, is not a big problem for the baby or the mother, but if the tear gets large, the baby will not be able to get enough oxygen through the placenta which can be fatal, and the mother has a high chance of 'bleeding out' which basically means that the woman would begin to bleed, and not be able to stop, which, of course, can also be a fatal condition.

Anyway, since my blood pressure was so low, and the drugs that they changed me to after the Mg was done to keep the contractions at bay was making it dip lower, my dose was reduced and I started contracting and bleeding again. 

When I first told my nurse that I was contracting, she told me that I was not. When I insisted that I was, she denied it yet again and told me I had gas or cramps or round ligament pain, but not contractions. But I knew what I was feeling and I kept insisting, and finally my mother got involved, too, and the nurse reluctantly agreed to call the doctor.

My doctor arrived within a half hour or so, and he called the neonatologist and they both had a look at me and what was going on, and they both agreed that the baby had to come

So I was given one more short dose of Mg and I was prepped for an emergency c-section.

It was now Thursday evening, and I was scared.

I called Jimmy and he got to my side as quickly as he could and I was rolled out and cut up.

And Sweet baby Hazel Grace joined us.

Later the doctor came in to see me. 

You know, he said, you were blessed that we got your baby out when we did. In another hour or two, neither one of you would have been here. Your placenta was almost completely abrupted and it broke away as we lifted her out. For a moment, he said, I thought that I would have to take your uterus out because you would not stop bleeding, but you are blessed. Your baby is here and alive, you are here and alive and you have your uterus intact. You both have a road to recovery before you, but praise God you are both here.

That stopped me for a moment.

First of all, through it all, I never knew how close to death I really was until he said that.  A few hours...

A few hours! 

That in and of itself is enough to make me stop and lift my hands in praise to the Almighty One!  In a few short hours, had things not played out as they insistence that I was in labor again and my mother's intervention and the doctors' quick kids would have no mother, Jimmy would have no wife, my sister no sister...


God is good. My aching incision is a blessing to me and my family! 

Secondly, had things not been orchestrated by God as they were...had I not come in on Sunday to be dated at 24 weeks on Monday to have the mess that helped Hazel develop, had she not been held in my womb until Thursday, when all that could be done for her had been done, had the placenta not held on until all the help possible could be given to her, she would not be here, either. 

And so, here, in my first world country, as I look at my sweet baby Hazel Grace who is breathing only through the support of sofisticated machinery and as I feel the ache subside little by little day by day as my body heals, I realize that it's is not a bad thing that has happened to me, but rather a blessing. 

What we see as bad things can be, in the whole plan of things, a blessing. But we here, in this privileged country expect other things. 

I expect a whole healthy baby. I expect food on the table and a roof over my head. I expect clean water and the ability to provide an education and a future for my children...

And in those expectations, I believe that sometimes I lose sight of the blessings that I have. 

I have travelled in third world countries and I have slept in huts with dirt floors and I have seen the hands lifted up in praise for the chicken that runs between legs as barefoot babies  are nursed and in thanksgiving for the water that tastes strongly of plastic and that I drink with hesitation because it has been pulled from a well far away and brought to me in an old plastic bottle that has seen many uses.  And they do not ask, 'why do bad things happen to us, good people?'

But they say instead, praise the Lord for He is good.

So today, sitting here by my baby Hazel Grace, I vow not to stop asking the question, but rather to change my point of view. I do not know what lies ahead in our situation...there could be much joy, but there could also be many tears. Or perhaps the two will come hand in hand as they often do. But I can know that God has a good and true purpose both for Hazel Grace and for me even though I may never know that purpose until I stand in awe on the other side. We are alive. He has set us aside for a special purpose that He has yet to reveal, but no matter what, we have already been fully and truly blessed merely by both of us still being here on this planet!

So I vow I will, by God's grace and with His help, I will lift my hands in thanksgiving for all situations...

Both the good and the 'bad'...

Because aren't they all intertwined anyway?

Friday, September 13, 2013

When You Just Can't Breathe

I knew that something was wrong the moment I walked through the NICU doors.

My favorite doctor was there tonight, and as much as she seems to enjoy my company as well, I knew that something was not right when she got up to meet me at Hazel's isolette the minute I walked through the doors.

And as the automatic doors swung shut behind me, I felt the whoosh of air...

the breath knocked out of me.

What happened to my sweet baby Hazel Grace?

What could have gone so wrong?  I just talked to her nurse on the phone a few hours ago.  She was doing fine...she was doing great.  Her pressure had been lowered to 19 on the ventilator, and her oxygen needs were low.

What went wrong???

I washed my hands methodically at the sink and slipped on the coverup gown that is required of all visitors to the NICU...

if only I could hide my whole self behind that blue patterned cloth and not face whatever it was that the doctor had to say...

and my mind raced...what could it be???

There were new machines beside the isolette of my sweet baby Hazel Grace, but that didn't bother me.  I knew that she would soon be moving from the jet ventilator to a conventional ventilator, but why did the doctor want to speak to me?  Usually, the doctors don't come to you to speak with you unless you either ask them to or there is some sort of bad news,

And I hadn't asked her to.

Her first words were:  Hazel had a bad day.  Her lung is collapsed.

But that can't be!  Her pressures were so good!  Hazel Grace is the one with the collapsed lung...

but I'm the one that can't breathe.

Her O2 needs are at 100%.  Her pressure on the conventional vent are 25.

Stop!  Stop!  This isn't fair!

This whole thing just isn't fair!  Why can't we just move forward?  Why can't I have one of those wonder babies who pulls through everything without a glitch?

And stop telling me that it's a roller coaster ride!  It's not!

Roller coaster rides are fun and you get on and off them voluntarily.


I want off this ride!

I want to hold my baby.  I want to look into her eyes and not wonder if soon she will be blind because her high oxygen needs cause her retina to detach.  I want to hear her cry.

I want...I want....

I want to bring her home and put all of this behind us.

I want to watch her grow up.

There wasn't even a chair for me to sit in this time.  Not even one of the swivel desk chairs that they usually have around there.

I just had to lean against the wall and listen to the list of possibilities.  This machine, that machine, this drug, those side effects...

I wanted to clamp my hands over my ears...Lalala if I can't hear you, you aren't saying it!

But no.

Sweet baby Hazel Grace has a collapsed lung.

I lift the corner of the quilt that is covering her isolette from prying eyes and glaring lights, and I see her in there.

So beautiful.

Just lying there, all wrapped up in her little blankets...


And I suck the air in past the lump that's in my throat and I lean over her bed, the tank that keeps her alive, and I press my hands, palms flat, on the sides of her islotte and close my eyes.

Do you feel me, Hazel Grace?

I am holding you, my sweet baby.

I can't hold you in my arms, but I am holding you in my heart.

And right now, sweet Hazel Grace, I am breathing you in...

your soft tennis ball head, your tiny feet and arms all covered in medical tape and sore from needles and IV's...

I'm breathing you in...

your tiny mouth filled with tubes and covered in tape...

your chest with its rasping breaths and covered in stickers and leads...

I am breathing you in...

And I breathe you out again into the hands of God, the One who created you...

Because, my sweet girl, I can do nothing for you,

but He can.

Tuesday, September 10, 2013

I Can't Write

I can't write tonight.  My mind is whirling and I can't get anything together to put down here that would make sense to anyone...

maybe not even to me.

We went to see Hazel Grace again like we do every day, and I sat next to her and Jimmy and I looked at her and we talked to her nurse and we spoke with her doctor...

and I realized:

This is my life;  this is my normal...

this is my storm.

And I must daily choose what I am going to do in my life...

in my storm.

Hazel's pressures continue to come down, but ever so slowly, and she is already starting to be weaned off her antibiotics,

and it appears that she will not be able to be ex-tubated and taken off the breathing machine anytime soon.

And so she's not coming home any time soon and she's not coming out of her little fish tank any time soon and I can't even hold her for at least another 3 weeks, and by then she will be more than 2 months old and I haven't even held her yet and I see other mothers with their babies and they hold and rock and nurse them and I can't...

and I can't!

And the storm swirls and the wind howls and I howl right along with it because this is my storm and it's just not fair and I don't like it and why in the world did this happen anyway and what can I do about it but just sit and watch and my hands are tied and I don't want it to be this way

And I still have to pump and be tied to that machine that sits glaring at me all day from the corner of the living room and I still have to get up in the morning and wash dry fold and cook serve clean

and oh how I howl into the wind that whips around me

and my hair is long and it sticks to my face in the heat and the tears and I want to tear at it and tame it and make it behave because I can't control anything else and then I realize, as I look in the mirror at the frizzy mess that circles my head, that I can't even control that

and I am completely out of control and lost and angry and...and...and...


And I would curl up in a corner and just sit there but the dust bunnies have beat me to it.

So instead I reach over and pick up the t-shirt that Gabriel shed on the floor while putting on his pajamas and I rest my head on the crumpled cotton knowing that if it's going to get into the hamper, it's going to be me who's going to do it

and then I hear something through the raging winds of my storm...

and I finally stop my rant and cool my rage and tame my thoughts so that I can hear it clearly

and it's a Psalm that is tickling my mind and bringing to me a song:

Psalm 121
1.I lift my eyes to the hills - where does my help come from?
2.My help comes from the Lord the Maker of heaven and earth.
3.He will not let your foot slip - He who watches over you will not slumber
4.Indeed, He who watches over Israel will neither slumber nor sleep
5.The Lord watches over you - the Lord is your shade at your right hand;
6.The sun will not harm you by day nor he moon by night
7.The Lord will keep you from all harm - He will watch over your life
8.The Lord will watch over both your coming and going both now and forevermore.

And I realize that every day I must choose anew to lift my eyes to the hills because that is where my help does come from and as the song says,

though my heart is torn, I will praise you through this storm.

It is a choice.  One that must be made every day.

Every hour.

Sometimes even every minute.

Monday, September 9, 2013

Homeschool with Hazel Grace?

I come from a family of educators and educated people.  My father was in the Navy, and my brother is a very successful landscape design artist in the Arlington/Great Falls area (at least that's what I call him.  I don't know what his real title is). My mother was a teacher, actually she was MY teacher for 7th and 8th grades, and then, after I finished high school, I went back to the school where she worked to run the before and after school care program and worked under her as my principal.  (We were a great team and that was the best job I ever had, but that's a totally different story.)  She and my sister both have their master's degrees in various subjects, and my sister is a middle school teacher in the public school system in Maryland, and she is an awesome teacher who is constantly taking classes to continue her education.  She is actually one of the ones who is called on over the summer breaks to write lesson plans for various programs that are implemented through out the school system  If I could know that all my kids would have teachers like her all year every year, I would move and gladly put my children in the public school system.

Well, kind of.

Ok, not really, now that I think about it.

One of the reasons we decided to home school was so that the kids would be together more, so no matter who the teacher was, unless they came to the house to teach, it still wouldn't work.

But anyway, I digress.

Needless to say, our decision to home school has not been taken very well by most of my family, and I think that Jimmy's family has a hard time really understanding the concept since it's such a foreign idea to them since I don't think that they ever knew anyone who was home schooled in their country and we are the only home school family that they know in the US.

During the time that I was on bedrest and in the hospital, the kids spent quite a bit of time at my parents' house and talk was flying about how they all needed to go to school, preschool or daycare, and as I lay there, tethered to my bed, I wondered if they might be right.

Wouldn't it be easier to just farm them out to other institutions to be taught and cared for there?  How am I going to be able to make this all work?

I have been accused of many things when it comes to home schooling the kids:

I am being selfish and not letting them have their own childhood experiences.

I am being too controlling.

My husband doesn't drive...I'm not sure how that one fits in with schooling, but it seems to be a big issue in some people's minds...

I am sheltering the kids.

I don't know how to teach them properly.

My kids will be/are behind in their education.

Some of my kids will excel despite what I am doing, but some will not and I am hurting the ones who need a special education...

The list goes on.

And when you are constantly bombarded with negativity, especially from people who are 'more educated' than you who you look up to and who supposedly have the best interest of you, your kids and your whole family in mind, it's hard not to be driven down the path of self-doubt and second guessing.

And so, I began to wonder...

Are we doing the right thing?

And then sweet baby Hazel Grace was born...and it all changed.

I mentioned to Hazel's doctor that we have 4 children at home, and her face got a look of concern on it because it will be the middle of the cold and flu season when Hazel is finally released from the hospital.

'Wow', she says.  'That's a lot of germs!'

Well, I told her, we do home school, so the kids don't go to school and pick up germs from there to bring home every day...

'Great!' she says.  'It's great that you home school.  It will be better for the baby!'

And that's all I need.

Not that Hazel Grace is more important than any of the other kids, but right now, at this point in her life, she is the most vulnerable, so we will do what's best for her.

And hopefully, despite my best efforts, the others will actually learn something useful as well.

Friday, September 6, 2013

Whose Baby is This Anyway?

When I was in the hospital, in the moments before Hazel Grace was born, in those minutes between the time that the doctor held my hand and told me he would have to take the baby and the time that the sharp cold metal cut into my flesh to remove her from her dark sacred place,

in those brief moments that both seemed to last hours and pass in a flash,

I whispered something to my mother.

A name.

A name that we had been holding to our chest for weeks now.

Naming a child is very personal and can be very difficult.  This name, the name that you, as a parent, choose for this child who is yet to be born, is a name that will last her lifetime and in some ways define her...

who she is and how people will see her in years to come as they hear the name.

Our name choices have often been met with resistance from our families, both Jimmy's and mine, so we don't tell the name until the child is born.

But this time was different.

I was afraid that I would not get to see this child born and named.

First, I was told that I would be put under for the surgery to remove her from me, and I was terrified.

A baby born at 24 weeks does not have much on her side...

Not a great chance to live.

And I was terrified that I would be under, unconscious, sleeping, when she came into this world abruptly and then left it just as quickly.

So through the tears of fear, anger and denial, I whispered something to my mother as they prepared to wheel me to the operating room:

Her name is Hazel Grace.

She must have a name before she gets here in case she leaves again all too soon.

Hazel Grace....God sees

And God did see because plans changed and I was able to be awake for the surgery and I heard her and I saw her before she was whisked away.

Hazel Grace...God sees.

And later, when I was able to go and see my Hazel Grace, I peered into the plastic of the isolette and I saw this tiny form that resembled a baby bird resting under a blue light and I wondered

How can this be my baby?

How can this be a baby at all?

What have I done?

What have we done?

What has God done????

My babies are round chubby affairs with scrunched up faces and kicking feet and mewling voices calling immediately for their mother and her milk.

But this?

I couldn't touch, couldn't hold, couldn't hear...

And through the tears, could barely see.

But now, as my sweet baby Hazel Grace grows and fills herself out getting fat on mother's milk and nurses' love

I say, 'That is a baby.  That is my baby'

But even as the words leave my mouth I hear the whispered name again...

Hazel Grace...God sees.

God sees.

And I ask again,

What have I done?

What have we done?

What has God done?

And I hear the answer as clearly as the beeping monitors and as insistently and as steadily as the beating of her heart...

A baby?  Yes.

My baby?  Not quite.

Because Hazel Grace...God sees...

Even when I couldn't.

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17

Our sweet baby Hazel Grace is not a gift that I brought into the world, nor that the doctors have kept alive...

Because alone, these things are ineffectual and worth nothing.

But this baby, this tiny micro preemie, carries her heritage with her like a mantle:

Hazel Grace...God sees.

That's why she's here.

She's of God and from God and loaned to us to be used by God for great things.

Dear, sweet baby Hazel Grace...God sees...

God sees!

Wednesday, September 4, 2013

In Preparation

Last year at this time, our house was full to bursting.

My in-laws lived with us, we still had a roomer, and we had 4 kids.  That meant that the boys and Jimmy and I were in one room upstairs, and the girls shared the other room upstairs and my in-laws had the large room downstairs and our roomer had the tiny room downstairs.

Then, my in-laws moved out in November, so rather than move any of the kids downstairs to be alone at night with only our roomer down there, we decided to move all of the dressers downstairs to have all the clothes on one level so that it would be much easier to fold and put away and contain the laundry mess, as laundry always seems to make a mess.

Then, in about March, our roomer moved out.  So, we decided to move the girls downstairs into the big bedroom, and put all the dressers in the smaller room that our roomer vacated.

But, right when we were in the process of doing that and everything was a mess, I ended up on bedrest, so we ended up just putting an airmattress in the big room downstairs in the middle of all the mess since I couldn't go up stairs anymore and we didn't have any beds downstairs.

We had already gotten rid of Elizabeth's mattress, though, so she ended up sleeping on the floor through it all.  Poor kid.  But, as Calvin's dad, of Calvin and Hobbes, would say, it builds character to sleep on the floor.

Now that I am back in business, so to speak, we have started to set the house up in anticipation for Hazel's arrival home.  It seems pretty definite that she will come home with some type of monitor or something that will go beep pretty loudly in he night, so Jimmy and I have revamped the room plans yet again.

This is what we have come up with:

Elizabeth is in the tiny room downstairs by herself with Baby B's port-a-crib in it for his nap times during the day.  That means that she has her own space for the most part and the other kids have no reason to go into her room and 'mess with her stuff'.

Jo will is in the big room downstairs that is across the hall from Elizabeth by herself, but she has all the dressers and laundry in her room with the exception of Elizabeth's and most of mine.  (Elizabeth has her own in her room, and I am have most of mine in my room.) Jo also has the library bookshelf in her room as well as the craft supply drawers and a table where she and Gabriel can work on projects with the door closed so that the babies can't 'get into their stuff' while they are working.

Gabriel and Jesse are sharing the room upstairs where the girls used to be.  We have moved their bed/cribs in there but the walls are still a striking purple color.  We may actually get around to painting sometime, but that's not top on the list right now.  They can deal with grape colored walls for a while.   It is interesting how much bigger the room looks now that Jo and Elizabeth's stuff is out of it and there is just the boys' 2 beds in there.

The final touches on this move took place on Monday since Jimmy took off work that day.  Even though Jo and Elizabeth's rooms still have superfluous stuff in them, at least all the beds are in the rooms where they are supposed to be.

That meant that Monday night was Gabriel and Jesse's first night alone in their own room apart from Jimmy and me.  It took Jesse a while to finally fall asleep, but when he did he slept fine all night, and Gabriel went to sleep fine.

It is when he woke up where there was a slight issue.

Our sweet little 3 year old boy woke up in the morning crying.  When we asked him what was wrong, he said that he had a bad dream and it was scary and he didn't like it.  When we asked about it, this is what he said:

"I dreamed that someone took Baby Hazel and changed her bed from her little one to a big one.  And then they put it up high and I couldn't see her and she was afraid and that made me sad so I was crying."

So you see, sweet baby Hazel Grace, while you sleep and rest and breathe and grow over there in your safe little isolette, we are thinking about you here.  We are preparing a place for you here in our home even as you have made a home deep in our hearts.

And know this, sweet Hazel Grace, your big brother Gabriel is looking out for you.  He cares about you and worries for you, even in his sleep.

You are loved, sweet baby, you are loved!

Tuesday, September 3, 2013


I am completely exhausted.

Like totally at the point of no return ready to crash and not ever get up.

But I wanted to let everyone know how sweet baby Hazel Grace is doing.

She started her steroids yesterday (Monday) at about 6PM.  Her pressure had gone up to 42 and her O2 needs just kept going higher, so even though the antibiotics for the pneumonia were not done, there was no choice but to start the steroids.

They did a culture of the excretions from her ET tube at 11AM Monday and the preliminary results that came back today were negative, which is good.  Hopefully there will be no developments there and she will remain infection free for the duration of the steroids.

She will be on the steroids for about 3 weeks.  So far, her pressure has only been able to go down one point to 41, but I'll take anything and it is still very early in the course.

She was cranky and fidgety today due to the 'roids, but she is still tolerating her feeds and still gaining weight.
She looks wonderful and looks really really big!  I can't believe how big she has gotten!  She is 2 pounds 4 ounces, which means she is now a member of the Kilo Club!

They also did an eye exam today, but the results are not yet back.  Apparently, all the O2 that she is on can cause some sort of issue with her eyes.  Since we haven't heard back yet, we are hoping that means that there is nothing major to report.

Other than that, she's been pretty calm.  Just resting there looking cute!