Saturday, December 28, 2013

First Week Home!

It's been a week now since Hazel Grace has been home.

Christmas has come and slid silently by.  The days and nights follow a rhythm of feeding, changing, medications, tubes, leads and monitors

and again and again I wonder,

Who ever thought that I was qualified to do this?

She is actually a pretty quite baby, resting there in her cloud of pinkness

and it's often easy to forget that she's medically fragile.  The stickers on her cheeks that hold her cannula in place are, for us, easy to overlook.

They are a part of her.  We have never known her without them

never known her face clean and clear of tape and tubes.

Gabriel and Jo dote on her.  She is the epitome of sweetness and tenderness to them and they carefully wash their hands before asking to gently touch her soft head or hold her little hands.

Jo says, 'I wish I was baby Hazel' which shows how it has become second nature to all of us to just step over the tubing lacing across the living room floor and dodge the pole that holds her feeds.  How so very innocent of a 6 year old girl to want to be her tiny sister, all snuggled in a sweet blanket, because in her mind, don't all babies come with tubes sticking out of their tummies and nubbins in their noses?  What's not to love about sweet baby Hazel Grace?

Even Jesse, in all of his rambunctious almost-two-year-old self, is gentle with Hazel.  He tries to climb into her bassinet, but only when she's not in it.  He admires her pacifier, but he knows it's not his.  And surprisingly enough, he pretty much leaves her gear alone.  He seems to sense that all of her paraphernalia is seriously off-limits, even more so than the electronics that he struggles to reach every day and that we must remind him not to touch every day...more than once a day.  He has flipped her O2 condenser off a few times, but the squeal of the sensors when we reprimand him and start it up again seem to have driven home the fact that he must not touch Hazel's things.  He leaves her feed pole alone, as tempting as it is being so tall and having almost irresistible wheels on it, and he steps gingerly through the maze of tubes and lines even though sometimes  he makes a game of it crossing back and forth over the rug like it's an obstacle course.

And Hazel herself is doing well.  We went to the pediatrician on Monday, and she weighed in at 4 ounces more than she did last Friday when we brought her home.  Of course, you have to take into account differences in the scales, but either way, I figure she has gained at least 2 ounces, if not more, and she weighs in at over 8 pounds!  We will find out for sure about her weight when we go into the office again and weigh her on the same scale.

And so, we have started the next chapter of our lives, and it is being counted off in increments of 3 hours with every day being a new page that must be turned a written.  How long will this chapter continue?  This chapter of tubes and medicines and 3am feedings?

I don't know.

But I hope that my hand is as steady writing the final page of this chapter as it is in the writing of this, the first page of our next story.  And while I an thankful and blessed to have our Hazel Grace home here with us, I am looking forward to turning the page on this time of monitors and beeping, of milk hanging from a pole in the living room and machines whooshing air in and oxygen out in an attempt to let us all

just breathe.

Saturday, December 21, 2013

Welcome Home, Baby Hazel

Dear Hazel Grace

Welcome home.

This place that you woke up to this morning, this humble setting where you tried to get your bearings and figure things out when your tiny eyes opened on a totally new landscape, this house

is your home.

Those voices you hear?  That crying, fighting, cheering, laughing cacophony of noise that you hear coming from the downstairs

those are your siblings.

This feeling that you feel, that warmth starting from your full tummy and spreading all the way out to your swaddled toes

is love.

This is family.

We are not the best of families, and we are not a perfect family, we have our times of hurt and misunderstanding,

but we are your family.

And as we gather around your bassinet and peer in at you, in all your bundled glory, we join hands in a protective circle around you

we raise a prayer of thanksgiving for you

and we stand together on the solid ground of one unshakable truth;

You are a gift from God to this family.

Just as each of your siblings was a gift in their turn as they added to our numbers, and even as they are still gifts that give in love and grace each day,

you, too, are a gift.

And we promise this now:

We will love you unconditionally.

It doesn't matter what you do or don't do

It doesn't matter who you are or who you aren't

It doesn't matter what you become or what you choose not to become,

We love you.

We will always do our best by you.  We will always remember where you came from and who you are

not because it defines or limits you,

but the very opposite.

What you have made it through, all that you have had to endure just to get this far proves to us that you refuse to be defined and refuse to be limited.

And who can help but to admire that?

So, little girl, tiny one sleeping peacefully in the crib,

breathe deep

you're home.

Friday, December 20, 2013

Preparing for Home

I am excited

and I am terrified.

Hazel Grace comes home today.

Isn't that what we've been waiting for all during these 5 longs months that she's been in the NICU?

Then why do I doubt and wonder if we made the right decision?

Was it right to have her undergo surgery to get a G-tube so that she could come home to us?

Of course, I know in my heart that it was the right thing to do.  Hazel Grace is being damaged more by staying in the hospital than by the surgery that she underwent.

But who am I to take on the responsibility of this little baby?

Hazel is coming home, and all who can rejoices with us and for us and we are happy.

But I still feel slighted.

Where is the joyful homecoming and the days snuggled up in bed with my bleary-eyed newborn nuzzling my breast? That is not to be.

Not that Hazel Grace is in any way 'less than'...oh no.  She much more than.

She needs more care than a 'regular' newborn.

She has more doctors' appointments than a 'regular' newborn.

She has tubes for breathing and tubes for feeding and lines for listening and feeling and detecting.

She has nurses for prodding and bottles bags syringes for washing sterilizing heating sorting filling storing

and my heart is overwhelmed.

How do we be sure to see Hazel through the tubes?  How do we be sure that Hazel is cared for, not just her tanks and tubes and buttons?

How will there be enough of me to go around?

I hear them say, these mothers and fathers of their tiny babies...I hear them say, half jokingly...

I wish these things came with owner's manuals!

No.  No you don't.

Because Hazel does have an owner's manual.

And it's not written by us, not written by a loving mother and a doting father.

It's written by strangers who see Hazel at a glance and reduce her to a tube or a button or a blood gas.

And we have no choice but to follow it.

So, as we prepare to take Hazel Grace out of the hospital and bring her here, into the warm, loving atmosphere of our house, and as I wonder how in the world anyone ever thought I was cut out for this job,

I sit and breathe just for moment.  Because sometimes, I guess, that's probably the best, if not the only, thing to do.

Wednesday, December 18, 2013

Quarter Liter, 100%

I have not written on here for a while.  I feel like things have been happening in a whirlwind!

Last week on Monday, December 9, Hazel Grace was still at 2 liters, 30-40% O2 on her nasal cannula.  They were still trying to get her to take all of her feedings by mouth, and she was just having a hard time of it and had been on the same settings for a while.  She had just plateaued.  She wasn't getting worse, but she just wasn't getting better, either.

The problem was that while she was feeding from the bottle, she was having to work so hard at it that towards the end of the feeding, she needed more breathing help.  If she had not had to feed by bottle every 3 hours, and if she was not being pushed to take all 60cc's every time by mouth, then she would not need so much breathing help.

I knew that the policy at the hospital was that Hazel could not come home on a nasal cannula at 2 liters.  She had to get down to .5 or.25 liters of air a minute at 100% O2 in order to be let home.  However, she could come home with feeding help in the form of a G-Tube.

But a G-tube is invasive.  IT requires surgery to insert and so Hazel would have to be put completely under in order for the procedure to take place.

Plus, because she would be so sedated, she would have to be intubated again.

And that's scary.  We all worked so hard to get her extubated, it was a very scary thing to think of putting tubes back down her tiny throat and into her lungs.  What would happen after surgery?  What if she back-tracked and couldn't extubate again?  The doctors said that a lot of times with the tiny ones with chornic lung disease, like Hazel has, it is hard to extubate them and it takes a few days after surgery to get them back to where they were before.

Could we take that chance?  Could we bear to see Hazels face and mouth covered again?

To not hear her cry?

But then, Hazel looked up at me and smiled and made her little 'coo' noise, and I knew she had to come home.  Whatever it took, it was in the best interest of Hazel to get her home as quickly as we could.  Come what may, however hard it would be for us, Hazel Grace had to get home.

This idea was brought home to us with a bang when the nurse that was 'caring' for Hazel was too busy with her other 2 babies, and so another nurse in the hall had to come and do her cares, and that nurse told me that the hospital policy was to not pick the babies up much because they didn't want to spoil them and make them want to be held all the time.

That meant that our baby, sweet baby Hazel Grace, just lay there all day by  herself waiting for Jimmy and me to come to her in the evening and pick her up and hold her, and that was all she got apart from the holding that was necessary to feed her.

So, Jimmy and I, on that Monday, December 9, 2013, started a conversation with the doctors at the NICU in Children's Hospital, to have Hazel Grace get a G-Tube and come home.

As soon as that process was started, as soon as we said to back off the feedings and just concentrate on breathing, Hazel Grace weaned to 1 liter, then .5 liters and then to .25 liters in a matter of 3 days.

Then the call came to set up a time to talk with the surgeon to set a date for the surgery.  We asked a lot of questions and said that we were comfortable with the procedure and that we were ready to speak with the doctor at any time.

While we were waiting for the call to set up the appointment, we received a call instead that said that we could have the surgery as soon as the following Monday or Tuesday, if we were ok with that.  We agreed that we were and so we waited for the call to let us know when.  On Thursday, December 12, Jimmy and I went to see Hazel in the evening at about 9PM and we saw that Hazel had an IV in her foot.  I figured that it was just preliminary testing that they were doing to get her ready for surgery the following week.

We stayed with Hazel for about 15 minutes or so, and there was no sign of her nurse, so finally, when someone did come in, I offhandedly asked what the IV in Hazel's foot was for.

'It's for  her surgery tomorrow'


Jimmy turned white as a sheet, and I was shocked.  Really?  Our baby was prepped for surgery in the morning of the following day and we didn't know it?

After the initial shock wore off, Jimmy and I concluded that even though this was faster than we had planned on, since Hazel was already prepped, why make her wait?  So we called Jimmy's work to be sure he could take off the next day, and we signed the consent.

We were told that the surgery would take place between 10AM and 1PM.  So, we told them that we would be there at 10AM to see her off and wait for her to come back.

At 9:30AM, we got a call to say that they were ready for her early, and was that OK.  Once again, we figured that Hazel's comfort was more important than our desire to see her, so we said that we were on our way, but that if she was ready, to take her on in.  We told the nurse that we would wait for her in her room in the NICU, but the nurse told us to wait in the surgery waiting room instead.  She said that the procedure would take about 30-45 minutes, and that the surgeon would come out and see us when it was over.

We agreed and made a beeline to the surgery waiting room as soon as we got parked.

15 minutes...

30 minutes....

45 minutes...

1 hour...

1 hour, 15 minutes...

1 hour 30 minutes...

The time ticked on and we didn't see anyone come out.  Needless to say, I was starting to get a bit panicked.  What could have happened to make something that should be so routine take so long????

Finally, a nurse came to us and said,

"Hazel's up in her room.  She's been there a while.  We didn't know where you were!"

Um....we were told specifically to wait in the surgery waiting room!

Anyway, we ran up to her room and saw our sweet baby, not hooked up to tubes down her throat, but back on the nasal cannula instead!  I was so relieved!

I looked around for the surgeon to see how everything went, but he was not there.  In fact, we are still waiting for him to contact us....

I'm beginning to think that it's not going to happen.

Anyway, the great thing is that Hazel Grace is doing very well.

They tried her on room air yesterday, but she didn't tolerate it well and had too hard of a time breathing, so they put her back on the cannula, but...


Now that she has the G-Tube so that we can feed her through the tube what she can't take by mouth, and now that she is on .25 liters, she is ready to come home!

She is healing well and her sutures are out, and now we are just waiting for the equipment and oxygen tanks that we need to be delivered so that we can be trained on how to use them at home.

She is due to be released on this Friday, but as we have learned, communication in this hospital is very poor, so I have been calling non-stop to be sure that I am on top of what is going on, and now they are saying that she may be released even earlier!

As excited as I am to get her home, I am nervous about the increased level of responsibility and the fact that she will be tethered to a large tank by an 8 foot tube!  How does one move about the house chasing the rest of the kids when the baby, who has spent enough time lying alone in a crib has an 8 foot long leash?

Anyway, since this is coming on much faster than expected, we are by no means ready.  All of you who have been offering to help, and who I have told to wait until Hazel gets home to pitch in a hand, now is your chance!

Starting next week, we would love dinners brought by and we also have a Hazel Registry on

Your prayers have been our blessings, your kindness has been our support.

And as we embark on the next leg of our journey, please continue to keep us in your prayers. It means so much to us and helps us all take that next



Tuesday, December 10, 2013

How Old is Hazel Grace?

There's a joke that I get a kick out of that Tim Hawkins often does in his productions.  He is one of my favorite comedians, and he homeschools his kids, so he often sticks that somewhere in his shows.  The one I really like is when he says that someone asks him what grade his kid is in and he has to say 'I don't know'.

It goes something like this:

I don't know.  How old are you, son?  9?  Then 9th Grade?
I don't know.  He speaks Greek but still eats bugs.  What grade is that?

Jimmy found the link for me after I published this.

I kind of feel that way about Hazel Grace.

Today marks 132 days in the NICU, which would mean that she is about 4.5 months old.

BUT...she was due only a few weeks ago, so that means that she has an 'adjusted age' of about 2 weeks old.

BUT...she's neither a 2 week old baby, nor is she is 4.5 month old baby.

So what is she, exactly?

I'll tell you what she is:

She's a beautiful, rosy baby who started at 1 pound, 7 ounces and now weighs almost 8 pounds.  She eats 60cc's of fortified breast milk every 3 hours, and she sleeps a lot.  But she's got huge, beautiful eyes that open wide to focus on and track everything around her when she's awake.  She has opinions and doesn't like a wet or dirty diaper.  At all.  She has great head control, and she's starting to smile and I even heard a little coo out of her today!  She's the littlest sister of her 4 big siblings, and she's eagerly awaited at home.  She can't breathe on her own yet, but she's getting the hang of nursing, and she's the apple of her whole family's eye.  She's stuck at the NICU, but she's got a spot in just about everyone's heart...

so what does that make her?


Monday, December 9, 2013

NICU - Day 131

Sometimes I just can't believe it.

Sometimes, I just can't wrap my mind around it.

Our little miracle, our little sweet baby Hazel Grace.

Today, as I held her and looked down at her little face, her tiny nose with the tubes running through the nostrils and her chubby little cheeks covered with the medical tape to hold those tubes in place, I just looked at her and marveled at how far we've come.

On October 30, when Hazel was moved from Alexandria Hospital to Children's Hospital in DC, the move was made to begin to prepare Hazel Grace for a tracheostomy.

And here we sit, a mere 6 weeks later, and Hazel Grace is bottle feeding and on a nose cannula with only 2 liters of air flowing through it per minute.


Then today, as I held her, and got to do something that I had not thought that I would ever be able to do:

I got to nurse my sweet baby Hazel Grace.

And she did famously!  She latched on right away, once she figured out what was going on, and she sucked well and swallowed quite a bit.  The nurse had told me not to expect much since this was her first time.  She told me that Hazel would only 'test the waters' and not really get to ingest much, but she did and it was amazing!  (Which meant that then the nurse tried to give her the whole 60cc's of milk afterward through her tube, and it over-filled her tummy since she had already gotten quite a bit from me, so she spit it all back up, but at least she's getting the hang of the process!)

We are still a long way from coming, home, and nursing her was not a step that needed to happen for her to come home, but after we realized that she had plateaued and that she was not coming home as soon as we first thought, I figured I'd just as well see what she could do and give her the feel of it before she got too attached to just the bottle.

And Jimmy and I have made a decision:

Hazel Grace must overcome two things before she can come home.  She must be on only .5 liters of O2 at 100% and she must be able to take all of her feedings.

Since she can come home on O2 once she's down to .5 liters, but she can't come home on a NG tube (the feeding tube that goes down her nose), we have decided to focus only on the breathing aspect of her recovery and relax a bit on pushing the oral feeds by entertaining the idea of a G-tube.  This would be a little tube that attaches to a 'button' on her little tummy which allows us to feed her through a tube when she gets home.  She can still eat orally, and we will still work on her getting up to taking all of her feeds orally, of course, but we will not have to worry so much about getting her to take all of her bottle and wearing her out with trying.  It has been that she is unable to take all of her bottle by mouth because she gets tired and it makes her breathe harder and faster, which is prohibiting her from being able to be weaned down from 2 liters on her cannula.  And while the operation is invasive, it is routine and to remove the 'button' when she is done with it is an outpatient procedure, so it is not double surgery.

The idea behind all of this is to get her home as quickly as possible.  She is now 2.5 weeks past her term due date (and 131 days in the NICU!), and after discussing options with her doctor, it seems that her development will be more compromised by a longer stay in the NICU than by getting the G-tube put it.  This is partly because since we have other kids, we just can't be in the NICU for more than a few hours every day, so Hazel just isn't getting the love and attention that she needs (and deserves!  One of the NICU nurses told me that it is the policy in the NICU to not hold the babies very much so that they don't get used to being held and cry for someone to hold them.  That just makes me sad and makes my heart hurt to know that my sweet baby Hazel Grace, since she is not a crier, is just left alone in her crib for hours and hours at a time!).

So, sweet baby, breathe deep and breathe long.  you won't be there forever, and you have a house full of love waiting for you to come home!

Thursday, November 28, 2013

This is What I am Thankful For

While I am thankful for many, many things, this is just one snippet of the evening that made  me smile:

Gabriel was sitting on his Grandpa's (my dad's) lap watching a movie this evening.  He started to get squirmy.

Grandpa (whispering):  Gabriel, do you need to go to the bathroom?

Gabriel (also whispering):  No.  It's just that my pants are stuck in my fanny.

Grandpa (still whispering):  Yeah.  That happens to me sometimes too.

I am thankful for little boys who will sit on their Grandpa's laps, and I am thankful for Grandpa's who not only open their lap to little boys, but who also commiserate with little boys and their problems.  

I am also thankful for turkey and sweet potatoes, but mostly for pie.

Saturday, November 23, 2013

The Tooth Chipmunk

Elizabeth got her 4 wisdom teeth taken out yesterday.  I have never had any dental work done except for cleaning, so I really don't know what she feels like, and I can't relate to what she's going through, but going by what she says, she was in a lot of pain yesterday, but today she feels much better.

But today she looks like a chipmunk.

And it is hilarious.

I guess that as her mom, I should not laugh at her.  And I tried not to.  I really did.  And I almost made it through the whole day without totally bursting out in fits of giggles, but then I cracked.

What happened was that for most of the day, I was doing my regular running around of kids to classes, trips to the hospital and running errands, so I was able to control myself by just not being around much, but by the end of the day, after the kids had gone to bed and we were just sitting around watching a movie, I found that I could barely contain myself.

It helped that the movie was a pretty intense one that had a few tear jerker scenes in it, but then, in the end, Elizabeth got up from her seat on the floor, and I got a glimpse of her from the side, and I seriously just couldn't take it anymore.

If I'd been drinking milk at the time, it would have shot out my nose.

Yes, it was one of those.  I was guffawing uncontrollably.

I made the cat run away and hide.

I made Jimmy tell me to 'Be quiet or you'll wake the babies!'

I threw myself into a coughing fit that almost made me lose my dinner.

And I felt horrible about laughing at her, but I just couldn't stop.  

And really, Elizabeth herself admitted that she looks pretty silly and she did join in a bit, and Jimmy's no saint in this one, either, so it's not like I was by myself in this.

But what I realized was that I had not laughed like that in ages.  I mean really belly laughed.  You know, belted it out and let 'er rip.

And oh, it was so therapeutic!

I have dealt with anger that has cracked and broken me and tears that have drained and washed me but this?  This was the laughter that filled and patched me.

And so I must say,

Thank you, Elizabeth.  Thank you for being you and letting me laugh at the situation.  You are an amazing and beautiful girl, and you will return to your full beauty in just a few more days.  I appreciate you being willing to let me snicker at your plight because it felt oh, so very good in so many ways not the least of which was that I knew that I could  giggle at you without offending you because you are strong and smart and firm in your beliefs of who and what you are

and that we love you

chipmunk cheeks and all.

What Hazel's Up To

I have not written about Hazel Grace for a while.  It seems that I don't really have time to sit and type on the computer, and when I do have a little time, I find that I can't formulate my thoughts into anything that is coherent or worthy of my Hazel Grace.

But I know that there are many people out there wondering what my sweet baby Hazel Grace is up to, so even though it is after midnight and I just got home from the hospital, I will fill you in.

Because you care

and because I care that you care

and because I firmly believe that Hazel is where she is because of your caring

and your prayers.

Hazel Grace is now on nasal cannula.  She is off the vapo-therm, and just has the nubbins in her nose that are connected directly to the air supply coming from the wall of her room.  She is on a flow of 2 liters per minute.  She started on the vapo-therm at 6 liters/min, and in the last week and a half, she has weaned down to just 2 liters (and off the vapo-therm).

This is incredibly exciting and encouraging to us!  This is a HUGE step on her way to getting home!

She also started PO feeding (bottle feeding) on Monday.  She started at just one feeding of 50mls of fortified breastmilk by mouth a shift (that would equal once every 12 hours) and all the rest of the feedings by tube but has now graduated to 3 PO feedings a day (one PO feeding to 2 tube feedings).  I just gave her a bottle at 9PM, and she took the whole thing famously.  She is on a slow flow nipple, and still has some desats (where her oxygen saturation goes down) and brady's (where her heart rate dips) while she's feeding, but she is still considered to be doing really well.

In order to come home, she has to take all of her feedings orally and she has to get completely off the breathing support.  If she doesn't do those 2 things, then we have to look at other options, like bringing her home with an oxygen tank and/or bringing her home with a G-tube (a feeding tube that goes directly into her stomach, not through her nose).  But most likely, if she does need one or both of those things, they will be only temporarily until she gets a little bigger and has more stamina.  She will always have chronic lung disease, but her lungs will grow and will most likely be able to support her with minimal difficulties in the future, and so far it seems that there are no issues with eating other than just having the stamina to feed long enough to take in all the milk before wearing herself out.  She doesn't seem to have any oral aversions or oral issues, which is surprising since she was intubated for so long.  The only thing that she does have is a deep groove in her palate, but it doesn't seem to be interfering with her eating, and the dentist said that it should resolve on its own or at least not cause any issues down the road.

Speaking of the dentist, Elizabeth got all 4 of her wisdom teeth taken out today!  They were all 4 impacted (I thought that meant they were growing in wrong, but what it actually just means is that they are under the gum still, so yes, they were impacted), so it was quite the experience to get them out, but she is recovering well.

And on the school front, I am proud to say that Jo is turning into quite the reader!  Some switch flipped and she just realized that it's really cool to be able to read big books, and also that there is a lot of really fun stuff in books and if she can read them on her own, then she can do it whenever she wants to!  I had borrowed The Indian in the Cupboard from the library on CD to listen to in the car, and she got really into it.  I reminded her that it was also a book in print, so when we went back to the library, she went up to the librarian and asked where she could find it.  When they didn't have a copy of it, she came and got the card and put it on hold...all by herself!  I was in the kids' room with the babies, and I had just sent her out to choose her books and she came back to tell me that she had gotten the book put on hold for her and would I please pick it up when it comes in.  Well, of course I will!  Yay for Jo!

And, while I'm listing details, I must say that Jesse's vocabulary is growing by leaps and bounds (so be careful what you say around him!) and also, I think it must have been by mistake, but he ate a piece of an apple!  We were at the Farmers' Market and I was handing him bread samples and then I just passed him an apple slice, too, and he ate it!  That is HUGE for him.  It has been impossible to get him to eat ANYTHING at all for months now.  I hope we are turning the page on the food issues with him!

And to not leave him out, Gabriel is hanging in there.  He's taking the whole Hazel experience pretty hard and is now having a difficult time separating from Jimmy and me to go to his class at church or basically to do anything, but he's doing ok.  Today I was putting together a mobile to take in to Hazel for her crib and he was helping me.  'Is this for Baby Hazel?' he asked.  'Yep' I said.  'Well, when's she coming?'  'She's not, sweetie, I'm taking it to her.'  'I know, Mom, but when's she coming?  When is Baby Hazel coming home?'

'I don't know, big guy, I don't know.  But I hope it's soon.'

'Yeah, me too.  I miss Baby Hazel.'

I know, my love, we all do.

Thursday, November 21, 2013

National Prematurity Awareness Month

There are some things that I never expected in life.

I never thought that I would be a stay at home, homeschooling mom.  I never thought that I would have 5 children. I never thought that I would live in Hawaii for a time or have friends in France or Russia or that my brother would marry a latina woman...or marry at all, for that matter...I never thought that my mother would battle and survive breast cancer, I never thought that I would still be in the same house 8 years (and 4 more kids) after we realized that we just aren't going to fit in this house

and I never thought that I would have the telephone number for Children's Hospital's NICU on speed dial on my cell phone.

I never thought I would have a premature baby.  That was for other people.  You know, people who were...well, not me.  I  never even really knew anyone who had a premature baby, and I certainly never expected any of my babies to come early.

But sweet baby Hazel Grace did, and now we are travelling that road together.

And Hazel Grace is doing well, she is thriving and getting bigger and more beautiful every day.  She is sweet and feisty and patient and demanding all in the same the same minute it seems sometimes!

And that is exactly what she needs to be and who she needs to be.

Anyway, November is National Prematurity Awareness Month, and so I jotted down some thoughts that I had about our sweet baby Hazel Grace that I thought would apply to all the tiny babies that share her floor at Children's Hospital in DC and that share our experience all around the US and the world:

Don't be afraid

I may not be at all what you expected
but I am exactly what I am meant to be.

I am a preemie.

I will always be your precious baby
But I will forge my own identity.

I'm sleeping now but I can feel you hovering over me,

Don't be afraid.
I am stronger than you think.

I am tiny
But I am mighty.

There is nothing in this world that can compare
To what you and I will go through together
Behind the doors of this privileged place
Because I am
And always will be
Your preemie.

Wednesday, November 6, 2013


Ninety-eight days later, 14 weeks after August 1, the day that our sweet baby Hazel Grace joined us, I sit here on the couch, watching my milk splash into the bottle to the rhythm the pump pulsing away beside me,

I realize just how far we've come.

Last night, Jimmy sat in the chair in the NICU at Children's Hospital holding his daughter for the second time in her life.  She was snug, wrapped in her blankets in the crook of his arm.  She was sleeping peacefully as the little nubbins in her nose provide her with a steady flow of oxygen.

He is protective of her and tells me

Don't touch

Stop moving

Don't talk so loud...You're bothering her!

And I look over his shoulder at her sleeping form and marvel at how we worry now about sound and movement disturbing her slumber when only 4 days ago, it was tubes and needles that disrupted her sleep and pained her body.

Hazel Grace was extubated on Saturday, November 2.

Yes, just this past Saturday, Jimmy and I hurried to the hospital, jittery as first time parents.  We rushed into sweet baby Hazel Grace's room and stood by, holding hands, Jimmy's sweaty, mine cold, while the team of nurses prepped the equipment...

everything that Hazel could possibly need for a successful extubation was sterilized and laid out at the ready.  The nurses, of course, have done this before, but for us, this was all new...

like a new birth.

I moved to the bed and put my hands on my baby, steadying her head and controlling her tiny waving hands so that the tubes could be untaped from her face and, for the first time in almost 13 weeks, slid out from her chest and throat.

And then we heard it.

The sound that every parents waits for in the delivery room...

The sound that we have been waiting months to hear...

The sound of our sweet baby Hazel's cry.

I had to turn away.  I had to relinquish my position by her bed because even though she was the one crying, my tears were falling

and I reached for Jimmy and found him reaching for me, too.

And my scar throbbed to the sound of her wailing...the scar that was cut into my flesh to bring her here into this world,

the scar that was waiting for this sound, the sound of my baby's cry, to fully heal.

And the tears that fell from our eyes, Jimmy's and mine, were tears that were an overflow from the heart

And it doesn't mean that she's well, it doesn't mean that we bring the carseat in to pack her up and take her home,

but it does mean that God is good and that He hears our prayers and He grants healing both to lungs and to scars and to hearts

and it also means that she has nubbins in her nose and a tube for milk to her tummy

which makes her still be the cutest baby ever created

and which also means that she can be held by her daddy

now in his arms, later on his knee, sometimes on his back,

but always in his heart.


Monday, November 4, 2013

The Transfer

I wrote this last week on Wednesday, October 30, but didn't get a chance to post it.  I wanted to still post it now, even though things have changed so much, because I want to always remember this...who I was, who I am, and what we have gone through together.  Because after all, isn't that what makes us a family?

It's like starting over...the opening of a not so old wound.  The pain is deep and unexpected and the sharpness of it takes your breath away and leaves you standing there, leaning on the edge of the plexiglass bed clutching a little pink weight chart.

The transfer.

My sweet baby Hazel Grace has been transferred.  Sweet Hazel has moved from the comfort of Alexandria Hospital which is a mere 15 minutes away to Children's Hospital which, from our door to Hazel's bed, is at least an hour on a good day.

But the thing is that it's not just the drive from here to there, it's the whole newness of it all.

Everything is different at Children's.  Everything.  From the way they tape the tubes to her mouth to the size of diaper that she's wearing and the timing of the feedings and meds and the type of bottles and pumps they have available.  Every last thing is different.  Even the way they orient her in her bed is different.

Not that different is bad, it's just...well...different.

I look around and nothing is familiar.  The nurses, the doctors...everyone is new.  I don't know them, and they don't know me.  Better yet, they don't know Hazel.

And yet, I have to get in my car and drive off.  Way off.  And I have to leave my sweet baby Hazel Grace alone with a whole new set of strangers in a whole new strange place.  And these strangers will spend more time with my baby than I will.

And that breaks my heart.

How can I drive away when she needs me most?  Who will tell them that she likes to sleep on her left side?  who will let them know that she doesn't like her feet wrapped up but she likes to sleep with her little blanket over her head?

Who will 'hear' her when she cries?

Hazel Grace has a private room which means that even though all of her alarms are sent directly to her nurse's pager, she is not in eyesight of anyone most of the time.  So, when she's upset, and her little eyebrows squinch together and her mouth opens way up and the tiny tears come into her little eyes as the silent cry comes out,

who will be there for her?

Who will pat her back and who will hold her hands and who will comfort her and will she think...

Where's my mom?  And why isn't she here for me?

But I have no choice.  I have to leave.

So I take my heart, beating and raw, and I wrap it up right there next to her.

And if I could, I'd give her, my lungs, full of air, and take hers with all their tubes.

But I can't.  So all I can do is leave my heart and drive away, snaking my way through the city to our house so very far away

and if you ever wonder just how far the heart strings can stretch, just how many turns and tunnels you can take before they snap

Just let me tell you that they can stretch.  It will hurt, and the pain is real, but they can stretch.

I can leave my heart there with her, my sweet baby Hazel Grace, and I can come home.

And I can love my kids and hug my husband while my heart's still wrapped up there with my Hazel Grace.

Because the pull of those strings, the pull of my body wanting to reunite with my heart, is the pull that gets me up in the morning and the pull that drags me through the day until I can retrace the route to the crib where my heart lies, waiting for my return.

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 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


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.

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.