The Big Room Switch-a-Roo!

It snowed here last night.  I love the snow.  I love the peace that it seems to bring on our house and our family.  Even though we are kind of stuck inside, the quiet white outside seems to calm the kids, and energize me.

Which is great because I have not had much energy lately.

A lot has been happening around here.  To make a long story short, here's some of what's going on:

Elizabeth started classes at NOVA, our local community college, in the fall as a dual enrolled junior in home school high school/freshman in college.  But being dual enrolled means that she can't apply for financial aid, and she is limited on the number of credits she can take a semester.  She did so well on the placement tests, and tested into the highest levels of all the subjects covered, that we decided to graduated her now from high school so that she can take a full load of classes at NOVA and also apply for tuition assistance.  That means that she can graduate from NOVA next spring with an associates, and then go on to a 4 year university, entering as a junior, to finish her degree.

Hazel is doing really well.  She is still very delayed, but she is progressing on her own chart, on her own time.  She has been almost a month off the oxygen, and has even gone through having a cold without having to hook back up to it!  Her big hurdle now is gaining weight and growing.  She is almost 19 months old, and hovering just around 17 pounds.  She's tiny, but with a HUGE personality!  She pulls up and cruises, and crawls super fast all over the house, giggling when she knows she's getting into something that she's not supposed to.  She has been evaluated for in home occupational and physical therapy, and has been approved for a special needs program at the local public school when she turns 2, which means she could start in September.  If we choose to go that route, she will get her PT and OT there, but not here at the house anymore.  If we choose to not send her there, then PT and OT will continue to come here, but mostly to train us (meaning me) how to work with her and then we have to do it on our own.  And as much as I can't imagine sending a 2 year old Hazel off to school on a big yellow bus, I'm not sure that with everything else going on here, I will be able to keep up with her exercises and what she needs to continue to improve.  I guess between now and then we will have a chance to see how it goes with PT and OT coming here to train me, and go from there.

We have decided to do some major moves in the house.  The final layout will be that Jesse and Gabriel will be downstairs into the big bedroom, Elizabeth is moving up into their room, which is really her old room, and Jo has moved into the tiny room that Elizabeth occupied most recently.  Hazel is still with Jimmy and me in our room.  We hope that this will help some of the issues we have been having with keeping things neat and organized, since most of the issue was in Jo's room with it being so big.  It's been kind of a dumping ground for toys when the kids play, and the boys' clothes were in there, too, so it's been sensory overload for her.  When we moved Jo into the smaller room, all she took with her was her bed, her dresser and her desk.  We hope that minimizing what's in her room will also help to minimize her stress levels.  So far, we have moved all of Elizabeth's stuff out of her room and into the living room and Jo's old room, and we have moved Jo into Elizabeth's room.  So, as I am sure you can imagine, everything is pretty much a huge disaster at the moment, but I am hopeful that it will soon be sorted out.

(Note that I said *hopeful*.)

There are other things that are going on here, and some other stuff possibly brewing in the future, but for now, my toes and fingers are freezing, so I say goodbye for now, and I hope to be back on here much more regularly.  I know I seem to do so much better when I write!

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?