Oh, How Far We've Come!

A year ago today, in a hospital room not far from here, I lay dying.

My blood pressure was so low that I could barely breathe and the bleeding and contractions just wouldn't stop.  

My mother sat in a chair at the foot of my bed, and my husband sat by my head.  To keep her hands busy, my mom was knitting.  What she was knitting, maybe neither one of us really know, but she was knitting, creating, while I, her youngest child, was dying.  

The drugs they had given me made my mouth so dry I could barely move my lips, and my vision was blurry, so I could only sort of see out of one squinted eye.  

I couldn't raise my arms or my head, and so I had to twitch a finger so that Jimmy would know that I needed some ice to cool my body that was burning me from the inside out.  My hair was a matted mess on my head and my arms and hands were a web of wires and blown veins.  

'I don't want you to be a hero', my mom said.  

'I have life insurance', I said. 'Please take care of the kids', I said.  'Please keep them together', I said.  

She nodded and knit, counting stitches, counting seconds, counting minutes.  

The nurse had insisted that all was fine, while I insisted that all was not, and by the time the doctor came, it was almost too late.  

Thirty to 45 more minutes, he said after the surgery. Thirty to 45 more minutes, he said, and neither one of you would have made it.  The placenta was completely detached, he said.  It fell off in my hands.  

I could feel the stitches, I said.  It hurt so much and I felt every prick and pull.  Why didn't the anesthesia work?  I asked.

It did, he said, but I couldn't stop the bleeding.  You almost lost your uterus, he said, but I didn't want to take it.  That's why it took so long for me to stitch you up.  I knew you felt it, he said.  That's why I couldn't look into your eyes.  You would have seen my fear, and panicked.  

That's how well we knew each other by then.  Well enough to read the signs.  

He prayed over me before the surgery.  He prayed healing over me and steadiness of hand over himself.  His eyes closed in pleading with God to please let this one work out before he stood over me and asked me why I was here.  

He made me say it.  I had to force the words out between cracked lips.  

C-section.  

He wasn't being mean, he was following protocol, you know, to be sure he cut in the right place and did the right operation.  

And then the sharp blade bit into my flesh and through the small hole that he carved in my body, he drew out our tiny Hazel Grace.  All one pound, seven ounces of her.  

And that is where this story began.  This story of life, instead of death.  This story of joy, instead of pain.  This story of celebration, instead of sorrow.  

And we've come so far, Hazel Grace.  You and I.  We are a far cry from the limp bodies that the doctor prayed over.  We are strong, we are healthy, and we are so very very blessed.  

Happy birthday, sweet baby!  May God continue to bless and strengthen you so that this is just the first of many many happy birthdays.  Look forward, Hazel Grace, to the life that is ahead of you, and strive toward it.  But don't ever forget, small one, where you came from.  Don't forget how it all began.  Hold in your heart all the prayers that have been said over you, and know that you are chosen by God and destined for great things!

Hazel Grace, a few days after she was born.

Hazel Grace, today!

Meet Hazel, my Tubie

My daughter, Hazel Grace, is a Tubie.

I didn't really even know what that was until recently, I'd say about a month or 2 ago.  I mean, I obviously knew that she had a gastrostomy tube, and I knew that it was for feeding, because it's what I had pushed for so that she could get out of the NICU at the hospital.  But when we brought her home for the first time in December, a mere 5 days before Christmas and a whole 5 months after she had been born, I was just kind of winging it.  I had already been pumping breastmilk for her since August, and she already nursed a little bit in the hospital, so I guess I just figured that the tube was just a good and 'easy' way for her to be able to get the calories she needed to grow since she has chronic lung disease, which means she burns more calories in just breathing than your average baby, and so was not able to take in enough on her own to grow.

But I guess I never really realized it would go this far (whatever that means), and I certainly didn't know there was a name for it.

Hazel will be a year old chronologically this Friday, on August 1, but her adjusted age, the age she would be if she had been born when she was supposed to be born, and not 4 months early at 24 weeks, is 8 months, which means, by 'normal' standards, she 'should' be eating solids by now.

And she's not.

I guess you could say she is, kind of, but it's nothing worth counting calories for...it's a half a baby sized spoonful of sweet potatoes or a tablespoon of whole milk yogurt here or there, but nothing consistent and nothing worth noting.  And while I am not completely negating what she is taking in orally since she does nurse well 2 or 3 times a day, and I know that every bite is one bite closer to oral, I think that I have come to the conclusion that Hazel Grace is not getting rid of her tube any time soon.

She's not going to magically start eating enough to maintain and increase her weight.  And my milk production is going down because, well, hey.  I've got 5 kids ages 16 years, 7 years, 4 years, 2 years and one year old.  Two of them are special needs.  Because of their needs, I have appointments weekly that I have to schedule during their prime-time, which is early in the morning.  I home school the 3 oldest kids.  I work from 4PM to 1AM full time and sleep less than 6 hours a day, none of which are consecutive, and I'm just flippin' tired and stressed and I've been doing this pumping thing for a year now and no amount of tea is going to change that.

And it's not that I'm jumping off the breastmilk bandwagon...not at all.  I fully intended to pump and nurse for at least a year, and hopefully longer than that, but I am tired of hovering at the edge.  I am tired of half-knowledge.  I am tired of waiting, and I am tired of being tired and stressed about producing enough milk for my sweet baby Hazel Grace.

With feeding pole in hand, I firmly plant my feet and proudly stake my ground:

Hazel Grace, my sweet baby Hazel Grace, is a Tubie.  She may not always be a Tubie, but for right now, she's a Tubie.  And for me, that means that more than just milk needs to go down that tube so that we both have the opportunity to continue to thrive and grow...me as a wife and mother of 5 beautiful children, and she as the Tubie that is.

And so, with one foot (boob?) on the breast feeding bandwagon, I am also taking a flying leap onto the blenderized diet bandwagon.

So someone throw me a line, because I'm flying blind!

Hazel Grace...wearing her brother's cap because he wanted to keep the sun out of her eyes!

Update

As I sit here at 1:45AM, everything seems possible.  I look around my house which is a complete disaster right now, and I say 'meh, I can handle it!'  I make plans for tomorrow:  we will go to the Farmer's Market in Old Town early, then go play on the playground while Elizabeth is in her Kung Fu class, no problem!  Be back by 1, eat lunch, take a nap and go to work at 4.  Easy peasy!  But that's because I have my energy jolt now, at 1:45AM, after the physical labor of climbing up and down ladders and hefting boxes.  Tomorrow morning, however, will be a completely different story.

But I don't want it to be that way.  I want to be able to give my best to the family in the morning and then work my hardest in the evening.

Which brings me around to being purposeful with my time and reconciling myself with who I am right now at this point in my life, and being sure that I am being who I need to be right now with each of my children.

Elizabeth is doing well.  She has been a tremendous help during this time of transition from me being at home to going back to work.  She is still plugging away at her schoolwork, and doing well with what she is doing.  I try to let her get out and have fun with her friends, too, so that has taken a bit of balancing, and although it's still a work in progress, I hope that she knows how much we appreciate her.

Jo is still working through some things.  We are still working with her on some aspects of her behavior that have held her back from her school work this year, but I am looking forward to testing her soon to see really where she is.  We are not yet sure what we plan to do for her for next school year.  There are a lot of things up in the air about that.  More on that later.

Gabriel is just being a boy.  I sometimes let him choose what he wants to do during his quiet time, and sometimes he chooses to spend it outdoors swinging and playing by himself.  Last time he did this, he entertained himself for almost 2 hours.  He found a hammer and screwdriver and went around hammering things.  This was after he found a big stick and poked at the bugs and rotten fruit and veggies in the compost pile.  He's such a trip to watch through the window when he thinks no one is looking.  My going back to work has been hard on him, though, and I need to make time to spend with just him.  Everyone else seems to get time one on one with me due to circumstances, but I have to carve out special time for him.

Jesse is doing his best to keep up with Jo and Gabriel.  He is pretty much potty trained, when he wants to be.  I find that if he has no pants on at all, then he uses the toilet well, but as soon as you put underwear on him, he pees in it.  But putting a long shirt on him and leaving him barebottomed has lessened the amount of diapers that  need to be washed, so I'm not complaining too much yet.

Hazel is doing well, too.  She is an adjusted age of about 6.5 months (she is 10.5 months chronologically) and she weighs 5.9 kilos, which is about 13 pounds.  She is still on the oxygen at .25 liters/min, and she still has her feeding tube, but she has hit some milestones!  She can roll over from her tummy to her back now, although sometimes we still have to remind her how to do it.  She also plays with her feet, which is another big milestone.  We have been given the OK to start her on solids, which means mixing a little bit of rice or oatmeal cereal with her milk and seeing if she will take it off a spoon.  We won't be putting it down her tube.  She is still on pure breastmilk, which I continue to pump (!) and has been gaining weight well with that.  She has actually been going to church with us, too!  We packed her up and took her 3 weeks ago, and she did really well.  That meant that Jimmy got to go to church, too, so we were all there as a family.  It made such a difference for Gabriel and Jesse.  No tears at drop off!  Jesse kept telling his teachers, 'Daddy church, Mommy church, Baby Hazel church...' on through the whole family.  He was much more comfortable in his classroom and played with the other kids very well.  We also took Hazel to the park on Monday and took her for a walk.  She really liked it and did well even though it wore her out and she was ready to get home into her bed when we were done.

We are working on weaning her off her O2, but even though her saturation doesn't go down when she is off the machine, her heart rate goes up since her body is not used to doing all of the work on its own.  When she is off the oxygen, then the hours that we will have the nursing care will go down, but for now, she still has a nurse, and we have actually had the same nurse for about a month now.  I thought that we were going to have to change again, but we have worked it out where we have one nurse Monday, Wednesday and Friday, and another on Tuesday and Thursday.  We pretty much like them both, so hopefully it will work out and we will be able to keep these nurses for the foreseeable future.

And that, friends, is us in a nutshell.  We are finding our new normal and slowly slipping into the new rhythm of life.  Your thoughts, prayers, comments and encouragement are always welcome.  No one ever said it would be easy, but my goodness!  No one ever told me it would be this hard, either!

How Many Hours in a Day?

The question that weighs on my mind is whether or not the choices that we are making for the kids and their schooling are being made out of necessity or out of selfishness.

I want to homeschool all of the children.  I really do.  And I feel as if it is a huge failure on my part if we choose to send one of our children to school.  I feel as if I am failing and as if I am being selfish by not taking the time and effort to make it work to keep them all at home.  I feel like if I would just get up earlier, if I would just plan better, take more time, have more patience, be more organized, be stronger, more faithful, more trusting, more...more...more everything that I'm not, then I would be able to make it work.  Am I being selfish by not pushing myself harder and getting more done?

But on the flip side, I look at the reality.  I am a full time working mom.  That is not my choice, but it is what I am right now out of necessity.  I can not cut back my hours, and I can not redirect my energy from there to home because my job is very demanding both physically and mentally.  It pays well and has great benefits, and I really do enjoy it, but it is very tiring, and I must go in well rested and at the top of my game or I will be miserable and in the end, probably lose my hours.  And by working until 1 or 2AM, that means that I can't realistically get up any earlier than I do now, which is between 8 and 9.  Even then, I am only getting about 5 or 6 hours or sleep at best, and by the end of my work week, I am exhausted, which just adds to the problem of dealing with a child who has a behavioral disorder and is physically and emotionally demanding as well.

And when you take 40 hours off the top of the week, and then you add in a little time for sleeping and whatnot, there's not much time left, and that small amount of time must be spread across 5 children and Jimmy with hopefully a scrap or two for myself as well.  And Hazel having a nurse almost complicates things even more because I find that I leave Hazel to the nurse so that I can take time with the other kids and then I look back at the day and realize that I haven't spent nearly enough time with her...except, of course, on the almost biweekly trips to the clinics at Children's Hospital which tend to take up a whole morning, if not a whole day.  And the laundry, shopping and errands still need to be done, too.

So as we move into this time of option searching and decision making for our children, I find myself at a loss of what to think and how to feel.  I find myself in limbo land once again, fitting in nowhere and everywhere, and with tons of questions, fears and doubts, and no real answers.

But the good news is that it's church time tomorrow (actually, in a few hours!) and Hazel Grace will be going with us again.  This will be the third week in a row that she's been able to go with us, and it's made such a difference to the other kids to *finally* have the whole family back together again at church!

God is good!

A Mix of Emotions

I have been wanting to write on here...I really have. But I don't have time anymore to get in the computer and it's so tedious to write from here on my phone, but tonight I have news that I just HAVE to share.

Things have been bumping along. Work is going as welk as a fulk time night job can he expected to be going, and I have realized that a big key to our family's health and happiness lies in my being very intentional about what I do with my days off and how that precious free time is spent.  And there is a fine balance between spending time with the kids, connecting with Jimmy (who I don't even really see at all on the days that I worm since he leaves for work before I get up and I leave for work before he gets home) and finding time for myself, too. I am still working on that balance, which is why I haven't written in so long and why I am writing at 2:40AM.

But today has been a beautiful and a rough day all at the same time. The child that we have been taking to the psychologist has a diagnosis, and even though I knew it was coming, it breaks my heart and hurts to know that no matter what I do, it seems that I will not be able to be the one to teach them and handle them here at home.  And as much as I know that it's not my fault and that there is nothing that Jimmy or did or didn't do that caused this, I still feel like I have failed.  Selfishly, that hurts my pride. Practically, it makes me sad to know that we all have a long road ahead of us and that my child, a child that I birthed and love and would give anything for, will have to deal with this for their whole life, and even though we will work through this and manage this, there is nothing that I can do that can take this away and heal the hurt that it causes.

But I k ow God can. And that is evident in the next piece of news I have to share...

Hazel can roll over now! I know this seems silly, but this is something that we have been working on with her for a while.  She is now 10 months old chronologically,  which is 6 months old adjusted age, and she has had a hard time with her core muscles due to her feeding and breathing tubes and her reflux not allowing her to lay flat.  

But as the time comes closer to the day of her birth, and the memories of all that entailed flood back, I look at my baby, who's small for her age (a little over 12 pounds) and who is 'developmentally delayed' and I hear the echoes of all the prayers that all of you have lifted up for her, and I see just how far she's come.

And in that, I see that if God can take a 1 pound,  seven ounce 24 week micro preemie and turn her into a strong and robust 12 pound baby, He can hold all of our family through whatever may come.

I may be completely in over my head and things may be careening totally out of my control,

But He's got us covered.

And in the sharing, I have found peace and so will now be able to sleep. So thank you for listening, whoever and where ever you are. You are important to me. Your prayers whispered over our family are felt and will have repercussions far beyond what any of us could ever imagine.

Thank you.

A Time of Change

I did not realize that it has been more than a month since I have written on here.  Time has been flying and the days have slipped away in a blur of doctors appointments, evaluations and work.

Yes, work.

I have taken a full time position at Trader Joe's and work from 4pm to 1am five days a week, from Thursday through Monday, with Tuesday and Wednesday off.  

Needless to say, I am exhausted.  

There is a long story behind why it is that we, Jimmy and I, decided that I needed to work outside the home, and I will not get into all of that here, but let's just say that our backs were kind of against a wall, but even though the job was taken under duress, it has been a blessing to our family.  

But it has forced me to redefine myself and being at a loss as to who I am exactly, has left me at a loss as to what to really say here.

I mean, where exactly do I fit in?  I am no longer a stay at home mom, yet I am with the kids all day.  I am still a homeschooling mom, but my days are filled with appointments for Hazel and for our other child who is struggling.  I am a full time working mom, and yet I am gone every evening, and not in the carpool line to commiserate with other mothers who carry a briefcase and work all day, nor am I a soccer mom carting my kids to practice every evening.  Birthday parties and playdates on a Saturday are more of a reprieve for me to catch a few winks in the quiet of the car rather than a time to sit around and chat with other mothers.

I have worked overnight before, so my body has adapted to the new hours surprisingly easily and quickly, but it seems to have over adapted so that even though I am home most nights by 2am or shortly thereafter, I am wide awake, hungry and ready to tackle the world at that hour, and then, come morning, when I must drag myself out of the bed and face the day, I am an exhausted mess that wants nothing more than to crawl into bed and pull the covers over my head.    If only I were ready to crash as soon as I get home!  Then I could get a good 6 hours of sleep by 8am and face the day relatively rested.  

And then, of course, comes the guilt.  

I know that what I am doing is necessary, but then I feel guilty about actually enjoying it.  And I do enjoy the work.  It is relatively mindless, but it is actually an area where I excel.  Contrary to the testament of my house and the mess you will find inside, I am actually a very organized person who pays attention to detail, which is exactly what a place like Trader Joe's, with its tight spaces and multiple products, requires.  You have 7 boxes to fit into a 5 box space.  How do you manipulate the items surrounding it to make it fit neatly and accessibly?  How do make each customer feel special?  How do you keep the salads fresh?  Empty meat case and chickens in the back cooler?  Bring. It. On.  I will check those dates, toss that chicken on the shelf, bag those groceries and align those boxes with my eyes blindfolded and my hands tied behind my back all while carrying on a cheerful conversation with anyone in earshot, (most of whom come up past my waist)!

But then it is my family who must deal with me while I am tired and trying to pull myself together.  It has not been until this week that I finally have enjoyed my 2 days off.  I purposefully went to bed 'early' when I got home on Monday night (early Tuesday morning) and I woke with purpose and a list of things to get done on Tuesday.  I powered through the day without a nap so that I would be able to go to bed at a reasonable hour on Tuesday night and did it all again today.  

And so, here I am now.  

But the guilt does settle over me like  a heavy mantle.  Jimmy gets up in the morning with the kids, passes Hazel off to the nurse when she wakes up, and then leaves to walk to work.  I get up at 8 or 9, and then do what needs to be done until about 2, when the littles take a nap and I try to catch a wink or two as well.  Then, it's up at 3 to get my lunch together and throw on my t-shirt, hook my box cutter on my belt, and get to work by 4.  Then Jimmy walks home at 5, and the nurse leaves and he and Elizabeth take over and get dinner and everyone into bed.  And all of this makes me wonder if I'm not just escaping.  If it's ok to enjoy my work when it means leaving everyone else behind.

Is it even ok for me to be working at all when it means not holding my baby as much as I would like?  When it means not seeing my husband for sometimes days on end?  When it means leaving Elizabeth to take care of the kids when she 'should' just be enjoying being a teenager...

Is it ok?  

But the proof is in the pudding, as the saying goes.  Hazel is thriving, Jimmy and I are more purposeful in carving out time together and in enjoying each other's company when we have it, the child that we have been having such issues with seems to be responding well to therapies and consultations, and Elizabeth makes me more and more proud of her every day as she makes good choices in her friendships and in her faith walk.  

And so I square my shoulders, tighten my grip on the bag of my ever-present breast pump, and step into the field of vision of the laser eye that swishes the doors open to the rustle of bags and the chatter of people over the muted ding of the registers, and breathe in the familiar scene that is chaos that must be returned to order before my day is done, 

And I breathe out with a sigh of acceptance that this is me and this is ok.  

Because what I do for a season doesn't define me...

Does it?

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.

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!

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.  

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.

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.

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:

Survival.

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 own...one 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!

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.

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:  Ummmm....no.  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:  Ahhh...yes...there...here'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 explanation...like 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

breathe.

Frustrated

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.

Frustrating.

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.

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.

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,  

cut,

washed,

 shaped,

dried,

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!

Cheese!