Sunday, February 9, 2014

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.

Wednesday, February 5, 2014

Getting Beyond Survival

In an effort to take one of those poignant pictures of the books on the old oak table with the steaming mug beside them that makes you want to just jump in there, grab whatever afghan the person who just took the picture just got done knitting and snuggle into it, wrap your hands around the mug of tea that they brewed from herbs they grew in their garden and sit in the chair that their husband just reupholstered and watch their 12 very well behaved children doing puzzles and reading to the dog while basking in the heat of the fireplace,

I had to move a pile of dirty dishes off the table, brush crumbs onto the floor because the Cheerios hiding out under the chairs were lonely, move the scraps from Gabriel's latest cutting project to the recycling bin, shift Piglet and his Uno cards to the side, find my books, take a swig of lukewarm Mother's Milk tea, and finally take a shot.

And I can still see crumbs.

But whatever.

There they are.  The books that I'm reading.  Perhaps an interesting conglomeration of books, but let me explain.

I loosely follow Crystal Paine's blog Money Saving Mom, and one day, as I sifted through the posts about the women gathering coupons, scouring ads and visiting various stores so that they can live on a grocery budget of $50 a month, the title  'Say Goodbye to Survival Mode' jumped out at me and I knew that I had to have this book.

I want to say goodbye to survival mode.  It's driving me crazy!  It's kind of a joke around, but not one that's really funny, that goes something like this:

Jimmy (or Elizabeth):  So, what's the plan for today?
Me:  Survival.

Both of us turn toward each other and kind of chuckle, but for some reason we can't really meet each other's eyes.  Because we know it's true.  That's all it is:


And I am tired of it!

My mother always says 'The definition of insanity is doing the same thing over and over again and expecting a different result.'

Which is true...

But that means that if we (me, Jimmy and Elizabeth) want something to change around here, if we want to get beyond survival mode, and move on to enjoying life, we are going to have to...gasp...change!

The second book in my stack is Kisses from Katie by Katie Davis.  Her story is incredible, and one that I always dreamed would be my day.  But I realized that 'one day' will never come if I don't get ahold of my 'today', which leads me back to removing myself from survival gear, and takes me to the third book which is The Books of the Bible:  New Testament, and is the book that our church is using to read through the New Testament as a community.  (If you would like to join us, please do and let me know and post a picture of yourself reading on the Downtown Baptist facebook page (or not, and just read the book, although I would really like to know if you are doing it with us...)

You see, the thing is I realized that in the past, I had opportunities to be a 'Katie', but I was not standing in the center of God's will, so either I didn't see my opportunity, or it 'fell through' because it would not have been the best thing for me nor for the people I would have been sent to serve.  And now, I feel that I am so entrenched in my own world, in my own issues, that I can barely get out of survival mode, let alone be a 'Katie' to anyone else.

And so, in the next few weeks, I plan to do 3 things:
1.  Pray for Katie and her work in Uganda in a purposeful way
2.  Read through the New Testament with Elizabeth and explore what God has to say to us, and
3.  Work through Say Goodbye to Survival Mode with Elizabeth and Jimmy so that Jimmy and I can become stronger, more effective parents and partners, and Elizabeth can learn some good strategies for organizing her thoughts, priorities and goals.

In the meantime, I will tell you that I did submit a piece of my work to a company that is looking for someone to write for them, but I have not heard back from them, so I am assuming that I didn't get the job.  It was just some place on craigslist that I submitted to on a whim, so I don't even have a phone number or anything to follow up with them, but it was kind of fun, and it made me think that I may want to try again somewhere else.  Getting a small income on the side would be a part of saying goodbye to survival mode,

So, follow along with me here as our engines cough and sputter and hopefully roar into life to carry us on to the next chapter!

Saturday, February 1, 2014

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!