Dreaming

Sweet baby,
Oh baby of mine
Of what do you dream
In your sleep so sublime?

Oh, Happy Day!

I can't believe it's finally happened!  After 19 months of it, it's all gone!  All of our tanks, our puffing dragon of a oxygen condenser, the pulse-ox...all of it GONE!!!!!

No more tubes snaking through the house!  One fewer beep in the night!  No more tape on her chubby little cheeks!

Hazel Grace has been DC'ed from her supplemental oxygen!!!!!

Moses, our DME driver, came by this morning and picked it all up!  I was so excited!

Next to go: the feeding pump and IV pole!

Breathing Easy

I can still feel it, you know, a tinge, an itch, a tingle in my flesh in that spot where almost 19 months ago the doctor drew his scalpel across my abdomen to pull from my body the struggling form of our tiny daughter who had been nestled there under my heart for just 24 short weeks.

My body has healed, and I am well, and she has grown into a 17 pound cruising little girl,

but we both still bear the scars.

I, the scar of a pregnancy ended too soon, of a baby not held in my arms or to my breast for too long, of an infancy marked with doctors' appointments and g-tubes, nasal cannula and syringes instead of sweet smelling baby skin next to mine while cuddling on the couch.

And she, the almost 19 month old who is still learning to walk and doesn't talk, she carries scars of her own:  the fear of public sink and paper towel sounds, because that always meant someone was going to do something to her, the desire to sleep in her bed, not in my arms, because that's what she was used to for so long, and the small round hole that holds the tube that gives her nourishment.

But there is one scar, one trial, that can now begin to heal and fade.  One sound we can begin to forget and have it only brought back when we hear a similar puff-and-sigh rhythm somewhere else and we have to go through our memory files to remember what it is that noise reminds us of.  There is one set of tubing that we can give away, give back, give up, pass on...

And one large tank that hung across my back for so long weighing me down at the same time it gave my little girl on my chest life.

Friends, all of you out there who prayed over us and over our sweet baby Hazel Grace,

Dear, dear friends,

It is with great joy and utmost thankfulness that I tell you that Hazel Grace, our mirco-preemie, one pound seven ounce 24 weeker, has been discontinued off her oxygen!

Yes!  You heard right!  Hazel Grace is done with the cannula!  Done with the sighing condenser dragon that hangs out in our living room, and done with the oxygen tanks!  She is done with cannula taped to her face, and done with tubes dragging behind her!

I know that a lot of you have seen us around without her tubes and tanks, but it wasn't until she had passed a full month and a half plus gone through a cold without needing the supplemental oxygen that her pulmonologist officially took her off the oxygen.

And on Thursday, I think the sun will shine a bit brighter over our house, and our house will feel a little bit lighter because Moses, our oxygen delivery man, will come not to deliver, but to take away!

And what joy will  be mine in the giving!

Feeding Hazel Grace

The snow has fallen, the streets have been somewhat plowed, the children have been bundled, sled and snowballed, unbundled, hot-chocolated, fed, pajama-ed and finally kissed goodnight,

and I have shut the door to my room...

with me on the inside, and everyone else on the outside,

and I breathe a sigh of relief of a day well done.

These last few weeks have been a nonstop flow of days best described as survival of the fittest,

and I often fall into bed at the end of them wondering if I am truly the fittest.

Hazel's feeding issues have yet to be completely resolved, although we are much closer to a happier solution.  To make a long story shorter, when Hazel was in the NICU, she was being fed my breast milk mixed with Enfamil powder to increase the number of calories per ounce of milk since she was so small and her little tummy could only process but so much volume.  Then, she began to drink from a bottle.  She would be fed as much as she could through the bottle, and then what she could not eat by mouth, would go down the tube.

The next step was that I would nurse her before her bottle once a day while I was there.  Then, she would be offered the bottle and then the rest would go down the tube.

But when she got home, and she started to nurse more often, her body began to reject the powdered formula that we were mixing into my breast milk to put down her tube, and she began to have more reflux.  So, the powder was stopped, but that meant that the volume of her intake had to increase.

She had a good latch, though, and was nursing well, which was our goal, and so, when we went to the surgeon to check on her tube placement and healing, he recommended that we stop the tube feeds altogether during the day and just tube her at night and breast feed her during the day to encourage her to nurse and to increase her stamina.  Well, I didn't quite agree with that, because it seemed like a big jump to take away all tube feeds during the day, and a call to the pediatrician confirmed what I thought, and together we came up with a plan to nurse her every other feed during the day, and tube all the rest.

That was going ok, but when we went back to the pulmonologist, she said that Hazel was not gaining enough weight, so we needed to increase her feeds from 90cc's every 3 hours to 120cc's every 3 hours.  Around the clock...day and night.

Well, we can guess where that headed!  Hazel's reflux came back with a vengeance!  There was no way that her tiny self could tolerate all that volume increase so quickly!  But I was nervous because Hazel had not gained weight, and the doctor wanted to put her back on the formula mixture, and I knew that would be worse.  So, we slowed the feeds way down and did everything we could to get her to take that volume.  In addition to that, I suddenly had to produce 120cc's every three hours in addition to the little bits that she would nurse.  She wasn't really nursing well anymore because she never felt hungry because her tummy was always full, so I had to pump every 3 hours, around the clock.  I only skipped the 3AM pumping session, even though I still had to get up to hang her feed.  I felt like I was pumping and feeding Hazel constantly!  As soon as one feed was done, I had to pump and prep the next one!

Then, the week before this past week, Hazel's reflux hit so hard that she could not keep anything down.  She would vomit the entire feed either right after it was done running or within a half an hour.  But, since she was holding nothing down that went in by tube, she was hungry and started nursing more, and she would keep whatever she got down from those sessions.  Sometimes it was a few swallows, but sometimes she would nurse til she fell asleep (oh, the glory of that feeling!  I didn't realize how much I missed it til I had a little glimpse of it!).

We were due back at the pulmonologist and I was dreading the scale there, but there was just nothing to be done about it.  If Hazel couldn't keep her food down, how can the child gain weight?

Then, last Monday, a day before the pulm appointment, Hazel started vomiting blood.  It wasn't a lot, but it was enough to cause concern for both me and Hazel's nurse, so we went to the ER at Children's and on the way, I made a follow-up appointment with gastro for the following day, knowing they would tell me to follow up with them anyway.

We were told in the ER that the blood was 'merely' due to the irritation of her esophagus due to the acid in the reflux that she was constantly experiencing.  We were told not to worry but to keep an eye on it, come back if it got worse, and...follow up with her gastro doctor.

Since I had already made the appointment, we got in the very next day, and explained the situation.  We decided to adjust her feeds so that she gets a continuous feed of 400cc's overnight, from 10PM to 6AM and then from there, she would get only 100cc's at 10AM, 2PM, and 6PM, with nursing on demand between those times, with the liberty to change the rate or the dose as Hazel needs and we see fit as long as she is getting at least 620cc's per day.

You can not imagine the change this has made in both of our lives!   We have had to change the start time of the continuous feed from 10PM to 7PM because she was still having a hard time keeping the milk down even as slow as it was running, but other than that, she has done famously, and this means...(drumroll, please...)

I DON'T HAVE TO PUMP EVERY 3 HOURS ANYMORE!!!!

Yes, folks, for the first time since Hazel Grace has come home in December, I do not have to pump every 3 hours.

This is such a HUGE relief!  I am producing pretty much the same volume, and I know that if I ever need more, I just need to pump more, but I am no longer tied to the pump every 3 hours!

In addition to that...Hazel is not connected to her feed tube 24/7!  That means that there are actually times during the day when we can even take off her extension and tickle her smooth tummy with just a little button off to the side!

Oh, the joy of it all!

I never thought that feeding such a small child could be so stressful!  I am constantly counting milliliters and calories and hours and rate and volume and I often doubt myself as to if what I am doing is right.

Am I slowing Hazel down and delaying her development by not giving her bottles?  Is my personal desire to nurse my baby detrimental to her overall well being?

I ask these questions repeatedly to both myself and her specialists and doctors, and I always get the same answer:

We don't know.  Probably not, because every baby is different, every day is new, and every experience is a brand new turning of a clean page.

So, the bottom line is, I feel in my heart that I want to hold my baby and nurse her as I did the others, and I see by her health that what we are doing is working for her, so all that is left is to trust.

To trust to One who put it all together to begin with:  Baby, Mother, Milk

Perfect food, perfect plan.

Post Traumatic Stress Syndrome

I thought it was over.  I thought that as the doors to the NICU swished closed behind us for the final time and Jimmy and I, giddy with excitement and trepidation, wheeled Hazel Grace down the hall tucked safely in her carseat for her first car ride home, I thought that I was turning the page...

I thought that I could look back, wipe my brow, and say, 'Whew!  Well, we made it through that one!' and move on to the next chapter in the book of our life with our baby.

And it's not like we have had to go back to the NICU.  Praise God we have been so far spared that trip, but we have had to go back to the hospital for check up appointments and routine exams.

Getting ready for our first trip out of the house and to our first follow-up appointment was a bit of a challenge.  I had made a list and checked all the items off:

Spare clothes?  Check
Diapers? Check
Feed pump?  Check
Spare extension tube?  Check
Emergency MIC-KEY button?  Check
Oxygen tank?  Check
Water for flushing...syringes for flushing and meds...feeding bag?  Check, check, check.

I think I'm ready.

And I was.  There was nothing that we needed that we didn't have on that first trip back to the place where it all started.

But what I was not prepared for, what I had forgotten to fully prepare, was myself.

I'm not even sure that there is a way to prepare for it:  Post Traumatic Stress Syndrome.

I know it sounds silly.  I was in the NICU, for Pete's sake, not a war zone, and there were no bombs dropping and no sirens blaring...

or were there?

As I headed down the hall toward the clinic where Hazel had her appointment, I passed by one of the elevators that is reserved for staff and patients.  At just the moment that I was passing, I heard the soft ding and the doors slid open, and there it was

an isolette

with a baby inside.

My stomach dropped to my knees which were feeling weak, and my hands got a death grip on the handle of the stroller where Hazel lay sleeping peacefully.  I peered past my white knuckles to instinctively check the tiny bundle inside the stroller.  Is she breathing?  Is she blue? How is she saturating?  Panic began to rise and along with it my breakfast, but my throat was so tight that nothing would have made it past it anyway.  The nurse peered at me.  'Are you ok?'

'Yes' I choked out and reminded myself to breathe and forced my feet to continue walking down the long hall that now looked too bright, was too noisy and was altogether way too long.  I realized that I could leave the NICU, but the NICU would never leave me.

I know that Hazel Grace feels it, too.

We have a bottle of the same hand sanitizer that the nurses at the hospital use, and for the longest time after she got home, when we would use the sanitizer and then approach her, she would tense and cry.  The memories too fresh for the gentle tones of our voices to overcome the fear of the unknown.  Or I guess I should say the fear of the known...the blood draws, the pokes and prods, the rough hands of strangers...the scent brought it all back.

She seems to be over that now.  She doesn't seem to mind at all that we approach her after using the lotion, but there are still signs of her recall of the time she spent in the NICU.  We got her one of those bouncy seats, you know the ones that have the vibrator in them that the babies just seem to love?  The first time we put her in it, to give her another view of the world, we switched it on, and a look of pure panic and terror came over her tiny face.  Her eyes flew open and her back arched, arms splayed, legs tense, and she started to cry.  A deep, heartfelt cry.  A cry of pain and fear and complete terror.

We immediately turned the vibrator off and took her out to comfort her, and it took a while for her breathing to return to normal and her heart rate to slow down.  What we realized was that the vibrating must have reminded her of all the time that she was intubated in the hospital.   The machine that breathed for her through a tube down her throat vibrated her bed very strongly such that you could feel the vibrations through the whole isolette.  It must have felt very similar to the vibrations of the seat.

We still put her in the seat, but we have taken out the batteries so no one can accidentally turn it on, and she lies there peacefully, looking up at us with a look of trust and dependence.

And I know that I will do all that I can to protect her from ever having to experience anything like what she had to go through the first 5 months of her life.

It is over,

But it's not.

It has deeply affected our family in ways that I am sure will continue to surface long after the whole ordeal is 'over.'

And in the meantime, we do what we can to protect and support one another, trying to keep in mind the raw and tender nerves and emotions that sit just beneath the surface of all that appears well and good,

And as I stroll down the halls of that big hospital where Hazel's life was saved and our lives were torn apart, revised, and thrown back at us in disarray,

And as the elevator doors ding and the wheels of the isolettes whisper their sticky swishing sound as they make their way down the hall in the opposite direction, going in  where we so recently came out,

Instead of turning my eyes down in panic and uncertainty, I will turn my eyes up.

I will turn them up toward the twinkling blue ceilings of that impressive hospital, and I will breathe the prayer that I have sighed so many times both over my baby going out, and that baby going in:

Numbers 6:24-26
The Lord bless you and keep you
The Lord make His face shine upon you, and be gracious unto you;
The Lord lift His countenance upon you, and give you peace. (Italic emphasis mine)

Because I can't take away what has happened to us, and I can't stop what will happen to them,

All I can do is turn it over to God and pray peace over all of us.

And as my eyes burn and the tear threatens to fall over what has happened and what is to come, I know that His peace is enough.

Our Friend MIC-KEY (Not the Mouse!)

Because I know that you are all dying to know, and because I personally think that it's pretty fascinating, I wanted to give you all a quick tutorial on Hazel's MIC-KEY button.

First, I want to start out by saying that I do not know why it is called a MIC-KEY button, but I do know that there are other types of G-tubes out there, like the PEG, but the MIC-KEY is the one that Children's uses, and I have heard that it is 'better' then some of the others and easier to use.  One of the differences that I have seen is the the MIC-KEY sits pretty flat on Hazel's tummy and the tube comes out the side whereas I think that the tube for the PEG comes straight out.

Next, I want to assure you that I am not a doctor.  Or a nurse.  Or anyone having anything to do with anything medical in any professional way.  The only reason I know anything about any of this is through experience, asking questions (did I tell you that while Hazel was in the hospital Jimmy and I took this great marriage course in our church and when he was asked to write down my hobbies, he wrote 'asking questions' as one of them?  Well, he did, and I do) and reading...a lot.  Preemie book?  The one that said 'don't read this book cover to cover because it will worry you too much'?  Yeah.  I devoured that one.  That being said, anything that I say here, or anywhere actually, should never be taken as medical advice, and feel free to correct me (nicely, please!) or add to anything that I say.

Anyway, here we go:

G-tube stands for gastrostomy feeding tube, with 'gastro' indicating something having to do with the stomach, and 'stoma' meaning 'hole', so we have a tube that passes feed through a hole into the stomach.


In the pictures below, you can see a diagram of the basis of the button itself and the extension kit.  The 'balloon' looking part that is what goes on the inside of Hazel's stomach.  A tube starts right at the end of the balloon, passing through it, passing through Hazel's abdominal wall and ends with the 'button' that sits right on her skin.  The flap in the picture that is down and to the right is what closes the hole when there is no extension tube connected to it so that her stomach contents don't come out, and the little pointer looking thing pointing up and to the left is where you connect a syringe to inflate or deflate the balloon, in our case with water, that is on the inside.  The purpose of the balloon is to hold the tube and button in place both so that it doesn't come out, and so that it stays snug against the skin and doesn't leak.

This picture below is the packaging for Hazel's 'emergency' tube.  It is sterile and ready to be used in case hers comes out.  So far, we have not needed this, and I am hoping to never, ever need this.  Even though the tissue that forms the hole where the tube passes through heals much like a hole for an earring while the tube is in, it is not like an earring in that if the tube comes out, it will heal very quickly, beginning to close in a matter or 30 minutes or so, and being impassable in about 24 hours.  This is a good thing if you remove the tube because you no longer need it, but a not so good thing if it is pulled out accidentally.   This package also shows the size of the tube that Hazel has.  It is has a diameter labeled at '12 French', which I don't know why it is French, nor what that unit of measuring is, but the other size is 1cm, which indicates the length of the tube between the top of the balloon and the bottom of the button.  Which means that Hazel's abdominal wall is 1cm thick.  Now, you may think 'how can that be?  The stomach does not lie that close to the skin, so how can the tube be only 1cm long?'  Ahhh...good question!  And one that has an answer that then greatly affects the way that we are able to feed Hazel.  You see, when Hazel had her surgery, they did the surgery laproscopically by making a cut in her belly button and another in her abdomen where the button would go.  Then they pulled her stomach out to the edge of her abdominal wall and passed the tube through the hole that they made there and inflated the balloon.  That is why if the tube came out in the first 2 weeks or so, she would have needed surgery to put it back.  The stomach would have gone back to its original location in the abdominal cavity.  Now, however, the stomach is more permanently connected to the abdominal wall by the tissue that forms the hole where the tube passes.

So, how does this affect how Hazel eats?  Well, imagine that you have a tiny tummy with an opening at the top where the food goes in when it comes through the mouth.  There is a flap covering that hole that is supposed to let stuff in, but not out.  In a preemie, and many term babies, too, for that matter, that flap is very underdeveloped and immature, and so it is floppy and doesn't close well.  Now, take that tiny tummy and stretch it way off to the side and imagine what happens to the opening at the top.  Right.  It's stretched, too, which means that the floppy flap is even less effective at keeping food where it belongs in the stomach.  Add to that the extra space that the balloon is taking up in that tiny tummy, and you can imagine that we have quite the compromised stomach capacity.  That is why Hazel has a hard time nursing.  While nursing, the milk flow is fast and fills her tummy faster than she can handle it.  That is why when we hang her feeds, we have to run them over an hour, which is much longer than an average baby would usually nurse.

This is a close up of the end of the extension kit.  This is the end that we attach the feed pump to.  The white clip is a clamp that we use to clamp off the tube when it's not in use.  If you don't clamp it, then if you open one of the ports, and Hazel has anything in her stomach and she cries or kicks her feet or tightens her abdomen in any way, the contents of her stomach will come out the open port.  This can be good, if you are trying to get gas out of her tummy (she did not get a NISSIN, by the way, so she is able to burp, in case you are wondering.  A NISSIN is a procedure that tightens the top of the stomach to help control reflux but makes you not be able to burp or throw up).  If she is very gassy and can't bring up a burp, we have a very large syringe, that we take the plunger out of and attach to the open port so that her stomach contents can bubble up and with them, the gas.  When she calms again, gravity takes the contents back into her stomach.  But in any other case, you pretty much want to let what goes in, stay in.

This is the other end of the extension kit.  It snaps into the button on Hazel's tummy and locks into place (hence the 'key' part of the name?  Don't know...)

The milk that I pump is hung in this bag...

...and run through this pump.

Of course, you have to get the air out of the tubing before you can start the feed, so you can either use the 'prime' button on the machine, if you happen to have all day to wait for it, or you can squeeze the blue part of the tube where the little symbol of a drop of water is, squeeze the bag at the same time, and hope you don't squirt milk on the cat.  Just sayin'.  Things happen.

Then, the end of the tube from the feeding bag that has passed through the feeding machine is connected into the feed port of the extension kit like so,

 the machine is programmed, and off we go!

The smaller port is where we put the medication in.

So, looking for the sliver lining in this whole thing, we have two very nice benefits that come from having a G-tube.  One is that we never have to give Hazel her meds by mouth, we just push them through her tube, which is very handy when she has 4 oral meds she takes twice a day, and two, in the middle of the night, she just fusses a bit when she's hungry, and I have gotten quite adept at setting up her feeds quickly, and we both just fall asleep while they run and let the machine cut off when it's done.

Until, of course, she kicks her feet and happens to accidentally open the med port of a defective tube and we end up with a sopping wet mess of milk and stomach contents in her bed, but that doesn't happen often, thank goodness, and I have learned my lesson and I make sure to keep the tube up high and wrapped in a blanket so she can't kick at it.

And there you have it. That's how those cheeks have gotten so chubby!

An Almost 10 Pound Thank You Miracle

One pound, 7 ounces, 652 grams.

That's what Hazel Grace weighed when she entered this world on August 1st, 2013.  A soaking wet, bleating little 11' handful that was whisked away from us before her scent had even settled on our skin.

And now, that tiny waif of a soul, that barely-there child, a heart just a beat away from heaven and lungs that could not even support the body that fit in a palm,

that girl-child of ours weighs almost 10 pounds.

Six months later, after that fateful day in August, I hold Hazel Grace in my arms, and she sits heavy on my chest, no longer able to tuck into the hollow of my collar bone like she did that day so long ago in the NICU at INOVA Alexandria Hospital, the very first time that I held her.

She's actually kind of...chubby!

Little baby legs filling out and gathering rolls of baby fat, the second chin hiding her neck that becomes more sturdy every day, round tummy, smooth arms waving...

chubby.

And I see it for what it is:

A miracle.

Someone close to me recently said that they don't believe in miracles anymore.  That they used to be wide-eyed and believing like I am, but that now they are sour on the whole thing and that miracles just don't happen.  'But what about Hazel Grace?' I say.  'She is a miracle.  How can you not see a miracle in her?'

'But she's your miracle,' was the response that came.  'She's yours, not mine.'

But that's just not true!  Hazel Grace is our miracle, to be sure, but she's not only our miracle!  She is a miracle for all of us.  For all of you out there reading this who have cared about our sweet baby and prayed over her and our family, she is your miracle, too.

There is no possible way that I can personally thank everyone who has prayed over us, lent a helping hand or a listening ear, blessed us with gifts of time, money or much needed equipment and goodies for Hazel Grace, or just been there when things got really tough,

but please don't think that it has gone unnoticed.

Every gift, every prayer, every kind word or helping hand has been tucked away in my heart and in the heart of this family.

You have made this possible, and Hazel Grace is your miracle just as much as she ours.

So breathe it in, the milky fragrance of the miracle of a sweet baby,

And sigh it out with a word of thanks to our Heavenly Father who is the One who made any of this even possible.

And it is with sincerest thanks, and a promise to do better at keeping everyone updated, I present to you

Hazel Grace.  The micro-preemie who's not so 'micro' anymore.

The Helper that Wasn't

Well, so our first skilled nurse turned out to not be what we really needed here with us.  It's all pretty sad, really, but it turned out that she had been cheating the company for a while, and it just so happened that I ended up asking the right questions of the right people, and her deception was discovered.

It's sad because I liked her as a person, and also because she said that she didn't really need the job, that her husband made the money for the family and she was just making extra 'fun' money, really, so it's not even like she was lying in an effort to make ends meet or because of financial hardship.

So why did she do it?

I guess I'll never know.

But, anyway, a new nurse started on Friday, and I hope she works out better than the last one, and that our family is a better fit for her.  The nurse we had before seemed to like the kids and the action here at the house, but I think that she was a bit overwhelmed by what Jimmy and I expected her to do with Hazel.

The nurses are here only for the good of Hazel.  They are not helpers for the house nor for the other kids.  They can if they want, but they don't have to do anything other than attend to Hazel and her needs.  But that meant that nurse #1 only sat on the couch, rocked Hazel's bassinet with her foot occasionally when she cried and hung her feeds and gave her her meds.

Well, I could do that.

What Jimmy and I are looking for is someone to hold and love on Hazel Grace to make up for all the lonely days and nights in the NICU.  Now, you could say that that is not part of the contract since it does not have to do with Hazel's medical well-being, but I would have to disagree.  To make up for the delays brought on by being a preemie, Hazel needs more attention and more interaction than a 'regular' baby does.  She also has to be both swaddled and let free to mimic the muscle tones and movements that she missed out on in utero by being born so early.  By being left on her back unswaddled for hours at a time is bad for her skeletal, muscle and cognitive development.  She must be able to and encouraged to bring her hands together in front of her to properly flex and stretch her muscles and frame as well as to be able to eventually 'discover' her hands.

Well, with nurse #1, this was not happening.  She was not familiar with nor did she know how to use the swaddle that we had which is the same as what is used in the hospital.

She also had issues with drawing up the correct dosage of Hazel's medicines.  She drew up a dose that was 5 times more than it should have been because she did not understand the label on the bottle.

That's kind of scary.

I mean, if she's been a nurse for years and years, and we are just now discovering that she does not know some of the basics of medications, breast milk and preemie care, then what has been happening to the other babies that she has cared for before Hazel Grace?

I guess I'm just trying to say what is said in books all over:

You have to be your own or your child's advocate in the medical world.  All because someone has a title or someone is employed by a company, that doesn't mean that they really know what they are doing nor that they have your best interest in mind.

I mean, what if I had gone along with the time sheet fraud like she asked me to?  She posed it in a reasonable way.  What she said about how she was paid and how 'the system' worked kind of made sense.  What if I had just trusted her without watching what she was doing or asking questions?  If the fraud had been discovered down the road by someone else, would we have been implicated since we are the ones who sign her papers every day?  And what would have happened had tiny Hazel gotten a dose of her meds that was 5x's what it should have been?  Would she have gotten sicker?  Would we have been able to trace it back to that incident or incidents to be able to know what happened to 'fix' it?

Anyway, hopefully this new nurse #2 will work out better.  I feel a little gun shy about the whole thing now.

I guess Hazel and I both need to work on just breathing through it all.

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.

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.

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?
or
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?

Perfect!

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.

Miracle.

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!

Extubation

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.

 

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.

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.

A Quick Update on Hazel Grace

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

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

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

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

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

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

I'll keep you posted!

Floating

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.

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!  

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.

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?