Tuesday, March 25, 2014

A New Journey

I have debated about what to say about this.  I have swung back and forth between keeping family stuff of this sort firmly in the family, and reaching out through these words and this media for much needed support and advice while maybe perhaps touching someone else who may be going through the same thing.

The thing is that there are different kinds of hurts, different kinds of special needs.  There's the kind like Hazel's, the kind that you wear outside of yourself.  The kind that everyone sees, and knows, and acknowledges.  It has tubes and wires, it has numbers and patterns, a name and predictability.  It's small and sweet, undeniable, and understandable by most people at least on some level.  Everyone says: Look at the baby!  She's so cute!  How far she's come!  What a blessing!

And then there's the kind that is burrowed deep inside.  The kind that hurts, but not like tubes running into tummies or leads and wires making diaper changing hard, but the kind that hurts your heart. The kind that is painful, hurtful in and of itself.  The kind that effects behavior, offends, and can make fun times not so fun.  The kind that has no reason, no explanation, and usually, no cure.

And so, while Hazel grows and thrives and gets round and chubby on her feeding tube, and while we talk with doctors about when she may get to be off her oxygen and when the tube may come out (probably not for a year or more), we are at the same time beginning the slow and often times painful journey to find out how to help one of our other children  with the issues that they are struggling through.

And for the sake of keeping it real, I am going to share parts of this journey here.  Because this child's struggles are no more nor less than Hazel's, they are just different.

I guess you could say that we've always known that this child would have a hard time of it.  Things were rough from the very very beginning, but I guess I never thought that we would be heading down the path that we now seem to be barreling down.  The counselor has finally said, 'I can't help enough.  You need to go to the next level.'

And so, it is with a heavy yet hopeful heart, we head out tomorrow to start the process of full evaluation.  Heavy because I don't want to be heading down this road.  Heavy because it's finally gotten so bad that there's no peace in the house.  But hopeful because perhaps this is the first step toward improvement.

And this, my friends, is why I have not written for so long.  How can I heartfully write when what is weighing on my heart is so heavy?  How do you put into words that which you can barely let into your mind without pain?  How do you say it out loud, when saying out loud is to really and truly admit it...admit that you can't do it anymore, that you can't handle what's happening on your own, that the image that you have in your mind must be reshaped, and that alone, you feel like you are drowning? 

But because we love each of our children and we want what is the best for all of them, no matter what the cost to us, I am packing up my pride tomorrow and heading into what is for us the deep unknown, and asking

for help.

Thursday, March 6, 2014

Sadness and Reconciliation, Part 2

This is Gabriel's story, from a few days ago, so I'll let him tell it:

One day, I woke up and I was all alone and I was looking for you guys and you guys were all hiding in the laundry room. And so I turned on the light and asked 'What are you doing in here?'  And then I saw a baby angel falling from the sky and I caught her and I healed her wing and then I let go of her and she was flying.  And the baby angel was Hazel Grace.  And if her wing gets hurt again and she is falling then I will catch her.  And she will be safe because I will take good care of her.  

Then, the night before last, as we watched his poor fish get sicker and sicker, he said that his fish's 'wing' was broken.

Mom, my fish's wing is broken like Hazel's wing was broken when she was a baby angel.  Maybe I can fix his wing, too.  But that's ok because if I can't, then God can fix it later.  And Hazel's wing is better, so that's ok even if my fish stays sick and dies. 

Then later:

Mom, can I get a snake now?

No, we cannot get a snake.

But I am sure that Hazel Grace feels just a lit tle more secure knowing Gabriel's got her back!

Wednesday, March 5, 2014

Sadness and Reconciliation, Part One

Gabriel's fish died.

We had set up a fish tank when Jo turned 3, and every one was allowed to choose a fish.  Gabriel was only about 4 months at the time, so we chose a pleco for him since they are the cute bottom feeders that suck on everything and he was still nursing, and putting everything in his mouth.

This fish didn't really have a name.  We just called him 'Gabriel's Fish' or the 'Sucker Fish', but Gabriel knew it was his fish, and he was very proud of it.

It started out at just a few inches and ended up at almost a foot long, and it survived everything!

It survived the time we went out of town and my in-laws watched the house and the power went out and they didn't start the filter again so the snail laid eggs and the tank got over run with snails.

It survived the time the aerator tube came loose and drained almost the whole tank onto the floor.

It survived the time the paper came off the back of the tank and the sun turned the whole tank green.

It survived when I didn't change or refill the tank forever and a day until the water had evaporated to less than half and the filter stopped working.

It survived when our other fish had babies, then ate the babies and all the other fish in the tank and then died.

It survived when the heater quit working in the tank and the water got really really cold.

It survived pretty much just about everything.  

But then, yesterday, it just stopped moving.  Gabriel kept saying that its 'wing' was broken, and that it was sick.  

And then, today, it was gone.  Gabriel's fish had died.

Poor fish.
Poor Gabriel.  

Tuesday, March 4, 2014

A Little Piece

It hits me suddenly, this urge to write.

The letters, words push up against me and the must be said and they must be heard, even if it's just here on this blank white page.

A flood after a dry spell.

And if I suppress this urge, this furtive desire to say, be, create

If I say, no, not now;  I don't have the time right now.

If I turn away, the words pile up and jumble together and the moment's lost and the thought is suppressed and it never comes together again in quite the same way.

And I am disappointed in myself for not being true to who I want to be and who I am.

But some days, I barely want to haul this tired body out of bed.  I don't want to go through the same old same old again...

Tears, fighting, whining, more tears, meltdowns...and that's just before lunch!

And I say, what am I doing?  What am I doing that is making a difference?  Why do I bother?  I go through the same motions every day and nothing seems to change.

How many times can you say don't jump on the couch because it's ripping apart just to turn around and see it being jumped upon again?  How many things do you need to say  no to that you never thought would need an explanation?  Like shampoo dumped on the bathroom floor by a child who is old enough to know better but says that they 'didn't know'.  How was I supposed to know that 'no dumping shampoo on the bathroom floor' needed to be a rule that would need to be spelled out?

And I know that parenting is a God given task and that it is a glorious one and that children are gifts from God,

but when I'm on my knees wiping up half a bottle of shampoo that I clipped coupons for and bought on sale because the budget's tight, and as I ring the sopping mess out into the bathtub and watch the lather wash down the drain wasted because it's been too long since the floor's been mopped to be able to salvage it, I wonder if I'm truly cut out for the job

because I don't see the joy right then.  I can't count the gifts, and I have nothing to offer but a tired, worn out body that houses a tired, worn out shell of a mom who feels inadequate and would much rather hide in a corner than reveal her shortcomings to the little ones that desire so much from her.

My knees cold on the hard floor, my back aching from the precarious balance it takes to get every last sud off the floor because the tiles are an ice rink when coated with the soapy film,

I can't see the glory.

But then I look over at the one who's helping me clean it all up.  I glance at the culprit and I realize that we are working together.  True, it's not fun, but who's to define 'fun'?  Maybe that's all they wanted.  Maybe the dumping of the soap was precipitated by the desire for the punishment:  clean up the mess with Mom.

With Mom.

Maybe that's all they really want.  Maybe they don't care that I'm tired and worn out.  Maybe to them I'm not worn out, but worn in

like comfy pajamas

and maybe all they really need, all they really want, all they are really asking for with their cries and grasping hands is for this tired worn out mom to sink into the couch and let them spread a book across my knees or let them push a deck of cards into my hands and match the colors and the numbers and let them win

or not.

Maybe my inadequacies are in my head, not theirs

So tomorrow morning, as I push back the blanket, and I push back my hair into a messy ponytail that's just messy and not cute messy, I will also push back the lies.

I will push away the lies that whisper in my ear:

You can't do it.  You're not good enough.  You don't have what it takes.  You're not what they need...

and in the pushing away, I will make space.

Space in my arms, space on my lap, space in my patience...

Space in my time.

Because that's all they're really looking for anyway,

Just a little space.  A little piece of Mom that can go a long way.

Monday, March 3, 2014

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...)


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.