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!