Wednesday, January 29, 2014

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...


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.

Saturday, January 11, 2014

Ignorance is Bliss?

Hazel had an appointment with a cardiologist earlier this week.

I figured that it was just a follow up appointment due to the fact that Hazel is a preemie.  I had kind of wondered why they sent her home with a heart rate and breathing monitor since as far as I had been told, she had never had any apnea nor brady episodes (where her breathing and/or heart rate slow to unsafe tempos).  Her biggest issue had always been that her blood would desaturate due to her chronic lung disease, but they didn't send her home with a pulse/ox monitor.  When I asked about it, I was told by the doctor that I was to watch her heart rate and breathing rate and if those slowed and if she showed clinical signs of desaturation, then I would know that she was desatting and take action.

But the clinical signs of desaturation are turning blue and what not,which doesn't happen until the condition is pretty bad, so I was not too confident in the process of monitoring what I understood to be her biggest problem.

I talked to my pediatrician, and she agreed that we should watch her saturation levels more closely and put Hazel on a pulse/ox monitor, too.  That also means that we can take her off the oxygen for a few hours a day to give her lungs a workout breathing on their own while still keeping a close eye on her O2 levels but that's another story.

Anyway, while I was a bit perplexed about the cardiologist appointment, as I said, I just assumed it was routine follow-up.

So, imagine my surprise when the doctor, whom I had never met before, asked me how Hazel was doing with her 'condition'.

Me:  Ummm....what condition?

Then came the question:

Do you know why you are here?

Me:  But now I get the feeling that I should know why I am here...would you like to tell me why I am here with Hazel?

Doc:  Oh, so they didn't tell you?

Me:  No.  Tell me what?

Doc:  Oh.  Well.  Hazel has a hole between the two ventricles in her heart.  It's just a small one....they never told you about this?

Me:  No.

Doc, looking at the charts:  Well they did the echo on December 20th...oh, that's the day you got discharged!  Anyway, they found a small hole.  Let's just take a look, shall we?  I will explain after we see what's going on...

Me:  Why yes, I do believe we shall take a look, and then perhaps offer an explanation, oh, so many explanations...

Doc, peering at the screen where my sweet baby Hazel's heart twitches and pulses as she squirms in my arms in protest of the slimy goop smeared across her chest:'s another angle...let me see...Well!  Good!  It looks like it's all closed up.  No explanation needed!  Whew.

And I sat there, still thinking that there really did need to be some sort of why was I not informed of the hole in my daughter's heart...

But as I clutched my tiny girl to my heart, wiping her chest of goop and her face of tears, buttoning her PJ's and straightening her tubes and attaching her leads...

I realized that what I must say is

Thank you, God.

Thank you for healing her heart.

And even though I was a bit put off and frustrated by yet another example of the lack of communication, I also sigh over my baby girl and say

Thank you, God.  Thank you for hiding this from me.  It was not life threatening, and there was nothing that I could do about it, and so I guess, in your infinite wisdom, you knew that this would be taken care of, and I just didn't need to know about it.

And in that ignorance, instead of worrying and stressing, I was able to sit and hold my baby, heart to heart, as she healed in ways that I will never need to understand, and together, we could just


Sunday, January 5, 2014


Right now, I am really frustrated.

Hazel's nose is stopped up so she hasn't been nursing at all, and so I have to pump and pump to keep up with what she is drinking.  And when I hang a feed, whatever is left in the bag has to be tossed but it is almost impossible to gauge it right because of priming the tubing sometimes takes more or less milk depending on if there are air bubbles in the tubes.  I am also not convinced that the moderator calculates correctly because sometimes it seems that I put in way too much or too little and it never seems to calculate for what I think that I have measured and put in.


Also, our nurse that came on Friday is sick and can't come tomorrow, so we have yet another new nurse for tomorrow, but if our 'regular' is still sick on Tuesday, we will have yet another one til she gets  better.

I like our new nurse well enough, I guess.  I mean it didn't seem like there was instant chemistry or anything, but I'm not sure that it is possible to have that kind of thing in this kind of situation.  I mean, some stranger is coming into our very crazy house and trying to take care of Hazel with me looking over their shoulder all the time.

Also, one of my other children is exhibiting very disturbing behavior and I am worried.  I need to make an appointment for an evaluation, but when?  That's another thing that I must do tomorrow.

I am light years behind in schooling and I am supposed to start back up tomorrow, and you are looking at one unprepared homeschooling mom.

So then, why am I on here instead of over there in that corner getting myself ready for the onslaught tomorrow?

Because I'm burnt out.

The days are pushing together.  I don't really leave the house, and if I do leave the house, I have to take everyone with me.  That usually doesn't bother me, but this one child is driving me crazy!  From morning til night, it is constant whining, crying and fighting.  I am hoping that school will help, but then I am defeating myself by not preparing more than I already am.  I plan to just pick up where we left off in September when everything went to pot and came to a screeching halt.  Yes, I'm that far behind.

Well, except for Elizabeth.  She has been keeping up with her work for the most part.  But if she doesn't finish her science, she's not going to Kung Fu in January.  Oh, wait.  It is January and she's not done.  So I guess she's not going.  But she's out there playing some video game with Jimmy, so I guess she's not going to miss Kung Fu as much as I thought (hoped?) she would.  I hate nagging, but I can't seem to find the trigger that will make her just get this class done!

The days are about survival, the nights are about snatching snippets of sleep between feedings, and I'm about to crumble.  I haven't been to church in weeks, and I'm missing my life.  The one that was hard, but do-able.  I don't even know what this life that I have now is.  Everything is a juggle of people, time and space, and I feel that the lion's share of it is falling on my shoulders.

I am feeling weighed down and bent.

Maybe it's God waiting for me to hit my knees and finally look up again

and breathe Him in.

Saturday, January 4, 2014

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.

Friday, January 3, 2014

The Kindest Cut

When I was pregnant with Hazel Grace, I wanted to get my hair cut.  I had wanted to go the the salon in Springfield called The Kindest Cut so that I could donate my hair and get a free cut to boot.

But then I was sick with Hazel and it never happened.

So when I realized that Hazel was going to come home imminently and that I still had long, unmanageable hair, I knew that if I didn't go and get my hair cut before she came home, I would not have the opportunity to do it for who knows how long.

Then I realized that both Elizabeth and Jo had incredibly long hair as well, and so all three of us decided to go and get our hair cut and donated to Locks of Love, which is a foundation that makes wigs for children with illnesses that cause them to lose their hair.

Jo was very excited to cut and donate her hair since she was familiar with Children's Hospital in DC since that's where Hazel was, and she had seen some of the sick children in the halls when we had gone to visit Hazel.  She was happy to be able to do something tangible for the kids.

This is what Jo started with:

 Then it was braided,  





and oh, my!
It turned out a bit curlier than we expected, but she loves it, and it's pretty much out of her face, so I'm not complaining!

This is what Elizabeth and I started out with:

and we got the same treatment as Jo

These are Elizabeth's braids

and her final 'do'

and these are my braids
and my final look!


Thursday, January 2, 2014

You May Not Want to Read This Post...

if you live in our neighborhood and were the recipient of some cookies today, because the following photographs may cause you unease.  (Mr. Brian, that means you.)

I think that the holiday season is hardly celebratory if there is not baking of some sort going on at some time.  This year, however, with things as they are, I have not baked a thing, and have barely even cooked anything worth writing about (or even eating, if we want to get really honest here).

I was feeling kind of down about that because I really do like to cook, bake and can, until I ran across a blog posting somewhere that said the following:

If it's going to make you yell don't do it!

I am sorry that I don't remember where I saw that so that I can give full credit where credit is due, but I will say that I took this lady's words to heart.

And I knew that trying to bake or cook or can would make me yell at someone somewhere, so I decided to let it all go and not even try and instead spend the tiny amount of energy and patience I had on other things.

And Christmas came and went and New Year's came and went and the kitchen saw no action, but there was also a sense of calm because I wasn't feeling pressured to produce tasty wonders in the kitchen.

But then, on my last trip to the grocery store, I saw those cookies that are in the boxes that all you have to do is open the box, put the cookies on the cookie sheet and pop them in the oven and I though that I could handle that, so I picked up a few boxes.

Today, we finally had the chance to actually break open the packages and cook them.

Everyone lent a hand...

...even Jesse, although he had a hard time understanding that you were supposed to line the cookies up on the pan and he kept grabbing them and trying to stack them like blocks.

And then the cookies went into the oven...

and in 10 minutes, we were done!

Now, it's not quite the same as mixing, rolling and cutting the cookies out and decorating them with care, but hey, there was no yelling going on except for from the kids who were absolutely enjoying themselves and probably didn't care or even really notice that the cookies weren't made from scratch!

Then, we bagged some of them up and passed them around to the neighbors (Miss Eva, you weren't home when we came by!)

And then...

it started to snow.  Big, fat flakes coming down and covering everything.

What could be better than a house smelling of cookies, kids feeling accomplished and happy for sharing the cookies they made,

and Hazel Grace here to share it all with us and to watch her first snowfall through the same window that her brothers and sisters watched theirs!

So, it may be late, but the heart's still there, and we are blessed, oh so very blessed!

Merry Christmas!

Wednesday, January 1, 2014

Is It Cheating?

I wrote this Monday morning, but somehow didn't get around to publishing til now:

I am sitting here, in the wee hours of the morning, waiting for the nurse to arrive.

No, nothing's wrong, it's just that due to Hazel's conditions, her G-tube and oxygen hook-up that comes with so many tubes and monitors, we are entitled, according to our insurance, to 12 hours a day of in home skilled nursing care.

And I mean, it makes sense.

Not just anyone can take care of a baby with Hazel's conditions, and if I had to work all day, someone who knew what they were doing would have to come in and keep her.  It's not like I would be able to drop her off at a daycare.

But, I'm not 'working'.

I am at home, pretty much all day, every day.

So, do I need this help?

I didn't know that I was going to get this help when Jimmy and I decided to go ahead and push to get the G-tube for Hazel so that she could come home.  I  had imagined our family just somehow juggling everything that needed to be done and just figuring it out.  And so, when I got the call telling me that we were, according to our insurance, eligible for 12 hours per day of skilled nursing care for Hazel, I hesitated and really didn't know how to answer.

I mean, isn't the reason that we brought Hazel home so that we can be with her and take care of her?

So, is it cheating to have someone else come in and take care of her?

A skilled nurse in the house means that our family can pretty much just live our lives like we did before because for 12 hours, there will be a someone dedicated just to Hazel Grace.

But I'm her mother.  I should be taking care of my baby.  I should be rocking her, changing her, medicating her, feeding her...

But if I am doing all of that, then when do I have time for the other kids?

What is really fair here?

Jo needs to move ahead in her school work, and all the kids need to be able to get outside to run around, and it's too much to ask Elizabeth to do all of this with the little ones while I am full time with Hazel.

Because it really is pretty much full time.  Hazel has 5 medications, 4 of which she must take 2 times a day, at different times...certain medicines need to pair with certain medications, and other ones need to be either before, during or after a feed.  Then, she must be fed every 3 hours around the clock.  Since she is not nursing fully, that means that I also must pump and in order to feed her, I must hang her feed and be around while it runs, usually over 45 minutes to one hour.  I am only allotted one feeding bag a day, so I must wash the bag and tubing after every feed and prime it before every feed while warming my pumped milk and mixing it with the powder that must be carefully measured on a gram scale that fortifies it.  Often, her tube needs to be vented as well to prevent gas build up in her stomach, and this is all day and night.  And that's on top of all of the regular baby stuff like spit-up from her pretty serious reflux, laundry, diapers and tears.  And all of this is while she is connected to tubes and monitors.

So part of me knows that I need this, but the other part of me feels like it's just wrong.  It's just wrong to get someone else to care for our baby.  It's just wrong to need this help.

I do know that we don't need someone for 12 hours, and we have taken the option for reducing the hours down to 'only' 10 hours a day, but it still just feels weird.  I mean, I'm here in the house.  I'm here with and for Hazel.  It's not like I just leave her to the nurse all day and don't give her a second glance, but I still feel guilty

like I'm cheating.

Am I letting her down?

Or do I need to just stop, and breathe, and realize that as hard as it is for me to hand over my baby, the baby that I was apart from for so many long months, it is the best thing for the family as a whole, and we will have years to come to snuggle on the couch?