Tuesday, October 29, 2013

Don't Worry About Me

I love writing.  I love my sweet baby Hazel Grace, and I love my family.

And we are all going through a really hard time right now.  Sweet Hazel struggles to breathe, the kids all struggle to understand, we all struggle to accept.

Who are we? What is our new role in the family? Where do we fit in? How do we maintain our autonomy and work together as a team, too? How do we give without giving too much and take without taking too much?

Who will we be at the end of the day...when Hazel Grace comes home and slides herself into the new pattern that will become our everyday life?

These are my struggles. These are the things that I push against, lean against, kick against, yell at, pray for, accept, reject and reinvent everyday.

And this blog is where I work things through. You are my sounding board.

Sometimes, in the dark times, the words pound themselves out of me onto the screen, gush from my fingers like so many tears or strangle out like the last choking breath of a hanged man.

And sometimes, in the bright times, the words jump out, spill out, dance joyfully out from my heart to laugh their way from my world into yours.

But those are moments. This blog here is not me, it is my moments.

Some moments hurt, some moments sting, and some moments float, carry and revive.

But I am ok.

Seriously, I'm ok. Don't worry about me.

Pray for me, love on me, offer help if you want, and I promise I will take you up on it if we need it, but don't worry.

I love my kids, I love my family, and, yes, I love myself.  It's hard, but it's bearable. I've never been through something like this, but I will come through one way or another.  We all will.

And there will be lessons learned and deeper relations forged and one day I will know the why of it all...

Or maybe not.

But that's ok.

And I love it that you are here with me. I love your prayers, comments and encouragement. Sometimes just knowing that you are there listening calms my heart and brings peace.

But don't worry about me.

I'm ok.

Really, I am.

Monday, October 28, 2013

Grace Like Rain

Hiding in the corner, covering my face with muddy hands...

I've spent too long on my knees scrabbling through the muck and the mud of fear and desparation

I know you must be out there, and I feel that if I could just see you...

If I could just touch your robe, I could be healed...

All could be made well.

But doubts and fears rise up before me, blocking me in and leave me cowering in the corner.

And then I feel it, softly at first, almost unnoticeable

A fine misting

A friend calls and listens to me.  She reaches out her hand and tells me that she'll go there with me.  She will walk the halls of the new hospital with me and help me calm my fears.

Amen, I breathe, and the darkness retreats a little, and I peek through my fingers.

A card comes next, a little note, jotted by someone I don't even know and the gift of prayer with it.

Amen, I sigh, and again the darkness fades, and I lower my hands.

A phone call follows with encouragement

Amen, I whisper, and bring myself to my knees.

It's falling a bit harder now...

Another message...

Amen, I say, and I rise to my feet

And yet another message...we are praying for you, we see you, we hear you...

Amen, I say again, this time with conviction and I reach out to touch the hem of His robe

But He sees me and doesn't let me touch His robe.  He pulls me in for a long embrace

And if the hem holds healing, the embrace holds completion

And it's pouring now and we dance together, He twirls and spins me so happy to have me back and I follow His lead in this crazy dance

Drenched in the terrific rain of grace.

Sunday, October 27, 2013

A Quick Update on Hazel Grace

Sweet baby Hazel Grace is doing quite well.  She is still on the jet ventilator, but after fighting with the doctors a bit, I have been able to hold her almost every day for a week now and her pressures have gone down 3 points to 21.  Yay!

She weighs 5 pounds, 9 ounces, and she is 27 weeks gestation, so she is now eligible to be moved to Children's Hospital in DC.  The only problem is that she can't be moved while on a jet ventilator because there is not a transport system that will support a jet.  I am hoping and praying that as she continues to grow this week and I continue to juggle my crazy schedule so that I can get in to hold her every day, her pressures will go down low enough that she can be put on a conventional ventilator and be transported so that she can begin to get the support and care that she needs to either make the transition off the ventilator completely or to get a trach and have a lot more freedom of movement.

She is being seen by a physical therapist as well as an occupational therapist a few times a week, and it is becoming more and more apparent that she is one strong little girl!  She is still 3 weeks away from being a term baby, and she can already lift her head while on her tummy and she tries to turn it, tubes and all!  The PT and OT say that her high muscle tone is due to her constantly fighting the equipment that she has been hooked up to since birth...baby weight lifting, in a way.  But this makes it all the more clear that she really needs to get those tubes out of her mouth one way or another!

So, for that reason, we are excited about her upcoming move to Children's, but the increased travel time and paying for parking has me a little worried.  The logistics of everything is already so difficult, I am not looking forward to having to work out a new system and trying to find a new balance for everything that is already so precarious.

The kids are all hanging in there.  Gabriel is still having the worst time of it.  He still loves to go in to see baby Hazel, and the last time he went in to see her, she was crying and he was so upset because he just knew that she was crying because of the tape that is on her face holding the tubes in.  He's probably at least partly right, but unfortunately, there's just nothing we can do about that right now.  Hang in there just a bit longer, big brother Gabriel!  I'm sure that Hazel Grace is just as anxious to get out and play with you as you are with her!  Too bad Gabriel can't hold her yet.  I am sure they would both love it!  Hopefully soon, though!

So please continue to keep us in your prayers.  Specifically, we are praying that Hazel Grace can be moved to a conventional ventilator this week so that she can be transported with less risk and trauma (to both her and me!).

I'll keep you posted!

Thursday, October 24, 2013


Hanging on by a thread.

Dangling precariously over the pit of despair

Knuckles white, breath coming in short gasps

Fingers loosening with each why?

Each how?

Why did this happen?  How will I survive?  How can I balance who I am with who I need to be and who I was and who I will be and the fact that nothing will ever be the same again?

I wake in the night with a splitting headache.  No, wait...the headache's not what wakes me.  I wake to Gabriel climbing in bed with me, slipping himself in the protected space between me and his sleeping daddy, and I realize that I have a headache.

Because my teeth are clenched so hard I can barely prise them apart to open my mouth to whisper the words

'Go to sleep, sweetheart'

to the little one snuggling up to me for protection from the night and the cold that the darkness brings with it.

I listen for his breaths to get deeper and slower and I feel his solid little body pressed up next to mine, and I know that I have to hang on.

I need something to anchor me.  I need something to hold on to that can keep me here, feet planted firmly on the ground.

They need me here as much as I need them...the children with all their vitality.

I once had a balloon, you know how you get them at the end of birthday parties when the parents are eager to be done with the festivities and the decorations and the kids invading their house and they hand you a balloon with a goodie bag tied to the end of it?  But what I didn't realize at the time was that the goodie bag was what was holding the balloon in place.  Without the weight of all that goodness in the little plastic baggie, the balloon will float away.  And so, when I opened my little bag of dollar store treats, the balloon let go and floated away.  I still remember how that blue globe looked as it bobbed and floated away from me getting smaller and smaller in the sky until nothing was left of it but a speck which soon vanished behind a cloud.

I am that balloon, and Hazel Grace is the goodness that is holding me here.  She's the treat at the end of the string all wrapped up in her little cotton blankets...

Only I can't take her home.

So every day, as I leave her bedside, I am a lost, bobbing balloon that someone let go of at the end of the party.  I drive away from the hospital that both sustains her and holds her prisoner, and I get home to my solid house filled with solid children and I land temporarily in the safety of their grasping hands.  But sometimes it's just too much...

the neediness of it all...

the house, the laundry, the dishes, the breakfast lunch dinners,

the kids

and those needs turn into needles that prick and poke until I'm sure I'm going to explode.

How do I balance all of this?  Their needs, her needs, my needs...

How do I keep my sanity and do and be all the things that I need to do and be right now?

And so, I have not written here.  I don't have peaceful words right now.  Life is on high speed whizzing all around me and yet I am getting nowhere.

Schooling is slow, dishes laundry dust are piling and the days drag

with no end in sight

and the breath is shallow and painful squeezing through a tight throat and pushing back the tears.

And I will myself to get up, to move, to put one foot in front of the other and plow through the day so that I can crash into the bed again at night, in the wee hours of the morning when it's barely night anymore

because right now, it feels like that's all there really is.

Friday, October 11, 2013

In Preparation...

Yesterday, as I was balanced precariously on a ladder in Elizabeth's room cleaning off the top shelf of her closet, I realized something:  I think that some parts of my body have not yet gotten the message that I'm not still pregnant.  Specifically, the nesting hormone.

Elbow deep in who-knows-what while hanging by one toe from the step ladder and simultaneously trying to occupy two toddlers and a 3 year old, I realized that I am frantically trying to prepare for the arrival of a baby that has no due date.

I do not know when Hazel Grace will come home, but whenever it is, I want to be ready.

But how do you get ready for a baby to come home when you have no idea what her needs will be when she gets here?

Good question.

And I have no idea.  So, in light of not knowing, I am attempting to prepare for anything.  Which with 5 other kids in the house is virtually impossible.

I have realized that what this house is really missing is some kind of basement or playroom or something because it seems that where ever I need to be, everyone else is there, too, and there's not even anywhere to send them off to play...especially on rainy days.

This became even more painfully evident this past weekend when we had a bunch of people come over to help us get some work done around here.  The kids were completely underfoot, and there wasn't even anywhere that I could really slip away to for pumping!  Let's just say that it was stressful, but the outcome was incredible!

The biggest thing was that we were able to replace the carpet upstairs with new flooring.  Although it was not imperative that we remove the carpeting, it was in pretty bad shape, and it is always better to have hard floors when there is someone in the family with respiratory issues, which is exactly what Hazel has.  We used a floating laminate flooring that looks like wood and was easy to install.  It looks incredible!

Here are a few pictures:

 This is after we removed the carpet from Jesse and Gabriel's room, which used to be the girls' room hence the purple walls.

Here's another shot of the subflooring in their room...these pictures make their room look HUGE!  (Don't be deceived) 

 This is after the plywood was put down over the existing subfloor.  We had to do this because the original subfloor was not solid but rather just planks that had a lot of gaps, squeaking and uneven areas.

This is the subfloor in our room.  It was in much better condition. 

Here's Jimmy, starting to lay the new floor. 

 Here's the finished floor in the boys' room.  The patch on the wall was from the hole we had to cut in the wall to get the cat out when she died under the floor a few weeks ago.

Here's another shot of their room.

It appears that I don't have a picture of the finished floor in our room, but let me just say that it looks just as great.  

We toyed with putting in a lighter colored flooring since the rooms are so small, but I really really liked this darker look, and I knew that if I went with the lighter one, I would never really be happy with it.  You may not be able to see, but the 'planks' are a wider 7" and the 'wood' has a distressed look.  I really love it and am so glad that we went ahead and used the darker choice.  

We also got a lot of yard work done.  The grapes are cut back for the winter, and the gardens are cleared of the summer growth.  

We were very blessed to have help this weekend.  Sometimes things just get so overwhelming that I feel paralyzed by all that needs to be done to maintain the house and yard in addition to keeping up with everyday life.  I helps to have other people around helping out who both know what they are doing and who have the tools to get it done right and keep you on track and on target with the goals of what needs to be done.  

Now all that is left in the boys' room is to get their beds in there and get some curtains on the windows.  I think that for now we will leave the walls purple since the kids don't seem to care and the material I found for the curtains has an outer space theme and will work well with the purple color.  Plus, once we get the beds in there, you won't really be able to see much of the walls anyway.

And just for fun, here's some other pictures to show what the kids have been up to lately:

Yes, they are in tires.  But they are clean and new.  In fact, they are listed on craigslist right now...(kids not included unless the price is right!)

Anyway, baby Hazel is at 4 pounds, 8 ounces and is still doing well.  In fact, she has dropped another point on the pressure of her ventilator and is at 24 now!  Keep praying for that miracle!  How utterly amazing would it be if she were to be able to come home soon and without a trach!  

Thursday, October 10, 2013

Hazel the Elephant

You know that feeling you get when you walk into a room and everyone in it gets kinda quiet and looks at you?  And you kinda shrink down a little and you cast a glance over your shoulder and you hope that everyone is looking at or averting their glances from someone else who just happened to walk in behind you but then you realize that nope, it's just you?

Yeah, that's me.

Real or imagined, I often feel that when I walk into a room of people who know me.

Or rather, people who know Hazel.

And there I am, with Hazel, my elephant.  The elephant that everyone knows is there, but no one really knows how to address.

Do we ask?  Is it better if we don't ask?

Then there's the pause until someone plunges ahead and asks the question that is hanging in the air, billowing around me and my elephant:

How's Hazel?

Then, the tables turn and I glance at the faces turned toward me.  I have to weigh the question before I answer.

Are they asking because they feel that they should ask?  Or do they really want to know?  Is a pat answer of 'she's doing well' enough?  Or do I owe the questioner's sincerity a fuller answer?  Do they want to know that she's beautiful and weighs 4 pounds and 4 ounces (yes she really does!) but that her lungs are still horrible and we are preparing ourselves to hear the word tracheostomy more and more in the next couple months?  

The truth is, that I never know what to say.  It's hard to explain to anyone in 20 words or less 'how is Hazel' because she is so complex...exciting and heart-wrenching at the same time.  And while I don't want to bore anyone with her particulars, I feel like it makes a liar of me to just say 'she's growing and doing well' because even though she is doing just that, growing and doing well, she's not.  She has chronic lung disease and her little lungs are a tortured mess.  It is unlikely that she will be off the ventilator or coming home any time soon.

But who really wants to hear that again and again?

So, I wrap my arm around my elephant and own her for what she is

part of my beautiful mess.

And I love it when you ask, but it's also ok if you don't.  I love to talk about my little elephant, but I am not at all offended if you don't have time to listen.

You can even just say 'Say Hi to Hazel for me.  I bet she's beautiful!'

And I will say 'Yes, yes she is'

and my elephant will smile

and we will both know that you care.

Sunday, October 6, 2013

A Quick Update

Baby Hazel weighs 4 pounds, 1 ounce today!  Yay!  She is tolerating her feedings at 11.5 cc's an hour and her tummy is round and soft.  (That's good.)

Her ventilator settings are the same at 26, and her oxygen needs still fluctuate, but they are relatively low, staying around 28-38% (The air we breathe has 21%, so that's her goal)

She is also tolerating her open crib very well, (as am I).

Jimmy and I got to help with her cares today at 8PM which means that I got to change her diaper (then she pooped and I got to change it again, then, while I was changing that one, she peed, so I got to change it yet again!) and I got to hold her while her nurse changed her bed linens and made her a new 'nest' to sleep in.

All through this, Hazel satted high (her O2 saturation levels were high and good) and so all in all, it was a very positive visit.

She was also awake and alert for most of the visit, so it was great to get a chance to see her little eyes peeking up at me!

Gabriel was upset that he couldn't come, but we took more pictures so I am sure that he will spend plenty of time sitting on the couch scrolling through them.  He's such a sweetie!

And, in other news, I think that Jo is kicking her nail biting habit.  I told her that for every fingernail that she let grow long enough to cut, she could paint one toenail in a color that she picked out.  Then, I got some bright orange polish and told her that if she let them ALL grow out by the end of the month, she could paint ALL of her fingernails for dressing up on the 31st.  And that is a HUGE privilege because Jimmy doesn't let either of the girls paint their fingernails at all.  This evening, I could cut 3 more, so we're getting there!  It also helped that one of our friends got hand, foot and mouth disease and I told Jo that she probably got it from biting her nails (she has also kicked the nail biting habit!  Congrats to you!  You know who you are!)

This has been a great weekend!  How was yours?

Friday, October 4, 2013

And Then He Said....

The excitement was palpable.

The doors swung open and he pulled against my restraining hand yanking me to the sink where he bounced from one foot to the other while I washed his hands.

Is that her bed there?  Is she still in the same place?

Up on tippy toes, he jiggled and wiggled as I tied the strings that held the back of his gown closed.

Walk, don't run, I said.  Remember, we don't run in the NICU!

I raced to catch up with his speed walking while I tried to tie my own gown and juggle the bottles of milk I had brought in to be mixed for her tomorrow.

I looked back over my shoulder and saw Jimmy methodically washing his hands and adjusting Jo's gown.

With the 'divide and conquer' mindset, I had ended up with the loose bee-bee, and he was streaking toward the unsuspecting bundle in the crib.

Sweet baby Hazel Grace.

Hi, my love.  I have brought your brother and sister to visit you!

A glance at the monitors tells me that she recognizes us.  She knows our voices and sats high.

Gabriel is jumping up and down almost in a panic now.  I can't see her!  She can't see me!  Pick me up!  Pick me up!  I can't see!

To save my toes from getting trompled, I lower the crib to its lowest position, and a sigh escapes my 3 year old son.

Hi, Baby Hazel, he breathes.

Jo peaks in, a much more restrained six year old.  She sits on Jimmy's lap and Gabriel sits on mine, and we read to our baby Hazel.  She learns the story of the Three Billy Goats Gruff, and she enjoys poems about the different farm animals and what they do and say.

Her eyes are closed.  She sats high.

She is bundled in a blanket and wears a tiny hat that my mother knit for her.  It's still huge on her head, and she is lost in the soft pinkness of it.  She's on her tummy, her favorite position.  The tubes curl out from her mouth and disappear into a metal box that jets her lungs and vibrates her bed.

And the big brother and sister stand together and look at the tiny one, and the hands can't help but reach out and touch the little mound that is their future playmate, confidant, friend...

She's great, Mom, he says.  Just great.

So tiny, she says.

And we sit and talk with Hazel about the things we like and what we will all do together 'when she gets big'...

because that's what has to go with everything.

When baby Hazel gets big, then we can play...

When baby Hazel gets big, then she can sleep in my room...

She can share my bed, she can share my toys, she can sleep with my dog...

when she gets big.

We have to go now, I say.  Baby Hazel needs to sleep, and we need to get home.

I don't want to, he says.

And then he says, We should just stay here with baby Hazel until she gets big.  We can sleep right here with her and bring our lunch in to eat by her bed.

Lord it is good for us to be here.  Matthew 17:4

Yes, yes.  It is good!

But we have to go because we don't fit in the incubators and cribs and we can't bring our lunch in anyway.   

Later, as he recounts the story to a friend, when asked how sweet baby Hazel Grace is, he answers

Beautiful.  She's just beautiful.

Thursday, October 3, 2013

My New Tattoo

They are moving Hazel to an open crib today.

I should be rejoicing.  I should be happy that she is big enough now to be in an open crib and that she can  now regulate her own temperature.  I should be overjoyed that she is able to take this step in her development and move from an isolated environment to one that is open and provides her with more developmentally appropriate stimulation.

But I'm not.

I got a new tattoo on Monday.  Not an ink one, made with a needle and pain, but one that is still just as permanent even if it's only visible through the heart.  It's in the shape of my sweet Hazel Grace as she rested on my chest for the first time this past Monday.  The tiny head nestled under my chin, the miniature hands clutching my shirt, the little tummy flat on my chest with the knees and feet curled under...

heaven imprinted on my skin.

But it was such an ordeal to get her out of her isolette and into my arms.  It took 3 nurses to get the job safely done, and although Hazel loved it and tolerated the move onto my chest and back very well, holding her O2 levels high and steady the whole time, the truth is, we had to make an appointment to hold our baby.

Yes, an appointment

to hold

our baby.

Jimmy had to take off work so that he could be there, and I had to leave the kids with Elizabeth, and we had to call ahead to the hospital to let them know that we were on our way and so many preparations had to be made...

and we can only hold her during the day when the doctor is close by and there are enough nurses on staff and the respiratory specialist is in the unit...

which means that I don't know when I will be able to hold her again.

Jimmy and I usually visit the hospital at night.  After the dinner is served and cleaned up, babies are washed and teeth are brushed and the littles are all in bed...then we can slip out to visit our youngest.  We can't just drop everything and go to her bedside in the middle of the day, so the days slip by and my sweet baby Hazel Grace stays in her bed and my tattoo grows deeper and sharper until it cuts all the way through to my heart.

So today, they will take my sweet baby and they will take her out of her protective isolette and move her into a big girl crib.  It's a big step in the right direction in her development.

So why can't I be happy?  Why can't I rejoice?

Because babies that are in open cribs are the ones that go home.  They are the ones that the mothers and the fathers walk into the unit, wash their hands, put on a gown and pick up.  They are the ones that get cradled for hours on their mother's lap and held up high in the strong arms of their fathers.  The open crib babies are the ones that kick and cry and bat their little hands around.

But not Hazel.

She will still be held back by the tubes snaking down her throat.  She will not be able to cry and her hands will have to be swaddled for most of the time so that she doesn't pull her tubes out.

I will still have to make an appointment to hold her.

While she was still in her isolette, she was one to be protected.  While we did touch her and talk with her and marvel at her tiny eyes peering out at us, we always kept in mind to not touch her too much, don't disturb her sleep, don't overstimulate her...

Let her grow.

But now, she's bigger and doing all the things that 'big' babies do, but she's still not accessible.

She extubated herself on Monday evening, and once again, she had no reserves and her lungs completely collapsed.

There is no light at the end of this tunnel yet.

And I guess that moving her to an open crib means that it seems like she should be one more step closer to home, and yet she's not because she's not one more step closer to breathing on her own which means she's one more step closer to getting a trach which means...which means...I don't know what it means.

It means redefining newborn...baby...toddler...


Who am I if I can't even hold my baby?  What is my role in all of this?  I provide food, but what else?  When does touching a head, holding a foot, whispering words stop being enough?  How do you put a dam on motherhood?  How do you stop the swell of mothering that flows in on the hormones of birth?

How long must I wait?

How long must I hold my empty hands up to the sky and feel the singe of the brand, the burn of the tattoo, that is visible only to me that sits on my chest, right over my heart in the perfect shape of my baby girl?

My arms ache from the lifting

my steps falter.

But sweet baby Hazel, you are worth it.  I will wait.  I will continue to lift my arms to heaven and I know that when they tire, when my arms droop and my feet stumble in their path from your bed to mine, I will have support from those who love you with me.

I will be your Moses in the desert, lifting my hands for you and your dad and your brothers and sisters along with the prayers of others will be the Aaron and Hur that hold me steady.  The promise of God, that He loves and cares for you and for me, will be the stone that I sit on. (Exodus 17:12) And through God's grace, I will remain strong.