Suddenly *Not So* Single Journey

Happiness is slow and steady…

Author: thenicknick

Slow and steady.  Yes, slow and steady wins the race.  Only this isn’t a race.  And if it was a race it would be more like a marathon or triathlon even, but not a sprint.  Kenna is my little turtle.

Her progress these days is less exciting.

At first there was mad progress.  Tons of stuff to constantly report.  She was living under a plastic sheet inside a plastic sealed box.  She was under bili lights.  She was on dopamine for her blood pressure.  She was teeny tiny, but now she’s gaining weight.  There’s been a lot of progress the last two weeks.  Now…it has tapered off.

Kenna is stable.  Stable is good.  Oh, but I get bored and I want progress.  I want to hear that she pooped…finally.  I want to hear that she’s off the oscillator and the ventilator.  She finally just started eating.

Okay.  It’s more than all that.  I want her home.  I know it’s too soon.  I know she’s nowhere near ready yet.  And even though I tell people all the time that she will be in the hospital until at least April, maybe May, I shudder and cringe when I think about how far away that really is.  Because…it’s so far.  It’s so long.

Still, progress is better than regressing.  It is so much better than her getting sicker.  She doesn’t have an infection.  She doesn’t have any bleeds on the brain.  We have much to be happy about.  Of course, I’ll be even happier when I can touch her.  I’ll be even happier when I can hold her.

Any progress is good progress.  We’ll take it.  Kenna is holding her own.  She’s staying strong.  She’s my determined baby girl.

We’re lucky.  We’re blessed.  We have plenty to be happy about.  There are so many people keeping up with her progress, so many people who pray for her, so many people who leave us supportive comments and words of encouragement on Facebook.

I’ve said it before and I’ll keep saying it.  This is what keeps us strong.  Nothing makes a person feel weaker than feeling alone.  The strength comes from having so many people offering love and support, knowing that we’re not alone.  That’s how I keep on…knowing I’m not alone.

I’ll keep sharing.  I can’t help it.  And Kenna, well she’ll keep growing…slow and steady.  And with all that love and support, we’ll all pull through.

January 26th, 2012  |  Posted in Happiness is...  |  No Comments »

I’m not so strong all the time…

Author: thenicknick

Kenna resting peacefully. I need a script of what she's on.

I wear out.  Sometimes.  This being hopeful and happy thing can be truly exhausting.  And I never realize how exhausting until I just can’t maintain it anymore.

That’s how yesterday was.

I was done.  I simply didn’t have anything left.

I’m not getting enough sleep.  I’m not able to pump like I want to.  And eventually life catches up with me.  I get overwhelmed.  All I need is a few minutes to cry…a few minutes to let it all go.  Then I can pull myself together again.  I bounce back really quickly.

And all I need to stay strong is for S to be loving and supportive.  Sometimes, that is too much for him.  Sometimes, he’s not in a place where he can do that.  All S needs is to know that he can take care of us, that there is going to be a job or money coming in.  And he hasn’t had that hope lately.  Worse, what work he has done, he’s having trouble getting paid for.

So no, S had nothing to give me.  And I could ever so acutely feel his displeasure.  That wore on me, too.

The problem isn’t that he was upset or that he took it out on me.  The problem was that I understand.  I understand him.  I understand how he thinks.  We’re trying so very hard to fulfill each other’s needs to help each other stay happy.  It’s never been so much work before.  We have a lot weighing down on us.  If it were just one thing…totally different story.  Lately, it’s everything.

And then I saw a post by a friend on Facebook reminding all of us that just one short month ago it was Christmas Eve.  And I realized how far we’ve come.  No wonder I’m worn out.

I went from being sick and scared on bed rest to emergency c-section in two and a half weeks.  I’ve been recovering from being sick.  And all the while I’ve been stretching myself thin, which is different from actual thin, the last two weeks trying to take care of Kenna and fight for her, trying to get our life back in order, and trying to create some semblance of a new routine.

Yeah.  Sometimes…I’m too hard on myself.  And I don’t allow myself enough rest.  And everything catches up with me.  And then it takes something so little to make it all right.

Last night, S made dinner so I could write.  And he cleaned up from dinner so I could write.  And when I was too tired to write anymore, S snuggled me and took a nap with me on the couch all curled together like puppies in a pile.  And when we woke…everything seemed so much more manageable.

There’s one thing I can’t manage.  There’s something completely out of my control.  And it’s what I care about most…Kenna.

Kenna is making the doctors nervous.  She hasn’t pooped.  And her lungs need work…they are still too stiff and her arteries are still too hard.  She’s come so far, but she still has such a very long way to go.

Please think of her.  It helps all of us stay strong.  And thank you in advance.  All prayers, thoughts, and words of encouragement are so very much appreciated.

January 25th, 2012  |  Posted in Reflections  |  No Comments »

My life has changed…

Author: thenicknick

I think about how different my life was last year and the year before and especially five years ago.  In some ways…it’s obvious.  We’re married and have a baby now.  Having a baby is a big change.  Having a baby in the NICU is a ginormous change.  Really…it changes everything.

And I suppose I explained it best to Kenna the other night while I was visiting her.

I love visiting her.  I talk to her.  I tell her stories.  I still have Goodnight Moon memorized from reading it to my kids so many times.  And Kenna deserves the full experience.  She does, after all, respond to our voices.

On this particular night, I told her how much I miss having her with me all the time.  I miss having her in my belly.  I miss it.  I miss that connection.  I miss the nights when I would curl up in S’s arms or in his lap and he’d caress my belly and talk to Kenna.

Now there’s no touching my belly.  It still hurts too much.  It’s still bruised.  And there’s no talking to Kenna all day long.  I have to save it all up and share it with her when we’re there.

It’s hard not being with her all the time.  I call the NICU each night before I go to bed so I can sleep.  I need to know she’s okay.  I call in the morning to make sure that everything is okay.  I need to know that she made it through the night.  And I get increasingly agitated the later it gets in the day.  I need my Kenna fix.

I need to be with her.  Even though I can’t touch her.  Even though I can’t hold her.  What matters is that I get to be there and she can hear my voice.

That’s the biggest change.  Once again, my life isn’t my own.  Not only do I share it with S, and a teenager who barely needs me, but now everything is about Kenna.  All the choices I make and all the decisions for the future are about what is best for her, taking care of her needs, being her advocate, the best mom possible.  She has worked so hard to be here, worked so hard to stick it out, she deserves the best from me.

We have a long road ahead of us.  She has weight to gain, while I have weight to lose.  We’re both working on our health.  We both need to work on just breathing, although not in the same way.

All I know is that I am so blessed, so fortunate.  When I am weak, I have S to be strong.  When I lose my sense of humor, I have S to make me smile.  When I lose faith, I have S to help put everything in perspective.  Together, we can survive anything…whatever changes life dishes out.

We’re counting down the time until Kenna comes home.  And we do it with a smile, eagerly looking forward to adapting to that change.

January 24th, 2012  |  Posted in Reflections  |  No Comments »

Be happy. It’s a whole new week…

Author: thenicknick

And there are several things that are special about this week.  Ready?

First…I don’t have a doctor appointment this week.  For those of you who have been following me…this is phenomenal.  I have done nothing but doctor’s appointments, sometimes several a week, for what felt like forever.  So a week without doctor appointments…wow.  Whatever will I do with all that extra time?  Oh, I know.  I can spend it at the hospital, or getting more writing done.  But mostly…spending time with Kenna.

And this brings me to what’s special about today.  Ready?

Kenna is two weeks old today.  She’s made it fourteen days.  What a blessing my teeny tiny miracle is.  She’s had a week of ups and downs.  She’s toughed it out.  My baby is a fighter.  And I’m so very proud of her.  She started out at just over nine ounces.  And now…she’s a whopping 1 pound.  Yup.  She’s huge.

And now that I’m two weeks postpartum, I think it’s time to get moving on this weight thing.  I have been walking a little more, but it is so stinking cold.  I just can’t do it.  I didn’t move 1000 miles from the frigid north to freeze to death in the south.  So, I’m going to go through my many many many dusty work out videos to find something that peaks my interest and won’t kill me.  Bishop ate my favorite video.

We’re trying to find a new kind of normal.  We have our daily visits to the hospital.  I live for my Kenna time.  Even though all we can do is look at her right now, it’s so nice to see her looking healthier.  I think her skin is looking better and better.  Of course part of it is because the nurses have already started training her in the ways of the mommy.  Kenna has adopted my beauty regimen: lotion.  Yes, there is a special Eucerin lotion that they use to heal her: Aquaphor.  The results are phenomenal.

S would be happier if he was busier, but he’s doing what he can, making the best of his time, and trying to keep a smile on his face…and mine.  He’s been really funny lately, which is nice.  Funny is not a descriptor I would normally give him.  He’s serious.  He can be playful.  Ah, but lately, he has been working overtime to make sure he’s funny and keeping me smiling.  I’ve really enjoyed his antics, his joking.  It’s obviously working.

So, here we are facing a whole new week.  And we do it with hope that life will continue to improve, that Kenna’s health will hold stable, that work will pick up, that I will continue to heal and feel better so I can get back to doing everything that I need to do.  This is what I love about Mondays.  So much promise.  We’ll make the best of it.

January 23rd, 2012  |  Posted in Reflections  |  No Comments »

I wasn’t going to write today…

Author: thenicknick

But I think Lisa was right.  I can’t help but write.  It’s something I have to do.

So, here I am, on a day that I really could just take a day off, and I’m at the computer doing something that I swore I wouldn’t do.  And the only thing I’ve come up with is that it’s cathartic.  Once I get the words out, I feel so much better.  It’s like when I’m nauseous and I finally give in and throw up.  All better.  Nice analogy, huh?  Well, they can’t all be pretty.

We went to the hospital last night.  And lately, every time we go, we sit down with a doctor.  This time was no different.  This time, I made the mistake of spotting the doctor that had placed the central lines in Kenna.  We hadn’t officially met yet and he had, every time we talked on the phone, expressed a deep desire to meet us.  And I’m a people pleaser.  And I wanted to thank him.

So we initiated the contact that ruined the rest of our night and possibly our entire weekend.

The doctor hauled us into the doctors’ office.  We sat there and listened to him explain how critical and sick Kenna was.  He explained that he didn’t think the medicine to close the PDA was working.  He explained that surgery was out of the question until she was at least two pounds.  Mind you, she’s not even one pound yet.  He told us that her lung disease was getting worse because of the PDA.  She’s still off the blood pressure meds, but they are thinking she’s going to be back on them again soon.  And he’s seeking FDA approval for a special experimental treatment they want to use on Kenna.

Yes, the FDA gets to decide whether or not my daughter gets medicine.  And they could take two to three weeks to decide it.  And I’m thinking it must be reasonably important if the doctors are willing to go to that effort for one baby.  Our baby.

We gave him our normal spiel, reminded him how many times Kenna had surprised us so far, how many times she had already beaten the odds.  We told him we were just going to remain hopeful, take it one day at a time.  And then we shook hands and went to see our baby girl.

Her alarms were going off.  Her blood pressure was low.  Her O2 sats were low.  And the male nurse working on her looked scared.  He was big and having trouble working on such a tiny baby through the incubator.  The doctor had followed us out and he helped.  It took a good five minutes, five minutes that felt like an hour, before the doctor stepped away, before Kenna stabilized.

S and I had stood there, tense, side by side, staring at the scene unfolding before us.  It was reality.  It was a slap in the face.  It was the first time I had really considered that she could die.  And it just sucked.

We stayed a while.  We talked to her and watched her get cared for by her night nurse.   We watched her get a diaper change and her temperature get checked.  We watched her get all snuggled in and stabilize.  And when I called at midnight before bed, she was doing better.  Her pressures had been low again, but once they ordered the blood pressure meds, Kenna stabilized before the meds arrived and could be administered.

She’s hanging in there.  Kenna is tough.

At the same time, I’d be lying if I didn’t admit to being scared.  She’s not even two weeks old yet, but I can’t imagine life without her.  Kenna wasn’t an accident.  She was planned and loved and wanted.  She is the realization of my dreams.  I always wanted to have a baby with a loving, supportive and involved husband.  I have that.  S made what was an otherwise horrible pregnancy bearable.  Kenna beat the odds and made it out of the womb alive.  I refuse to believe we’re going to lose her now.

And so I share.  I share to get all my worries and fears out, so I can face them and cope with them and force them from my mind and move on…get back in fighting mode.  I share because I know that if I do, there will be so many people fighting with us.  And I need the strength that comes from that knowledge.

Please…think of us.  And know, in advance, that it is so very much appreciated.

January 21st, 2012  |  Posted in Reflections  |  No Comments »

So, this is what a good day looks like…

Author: thenicknick

The magic hat...

And I can’t say every aspect of the day looks good, just that it seeeeeeemed good overall.

It started with us getting up.  (Always a good start.) And I had a long long long list of things to accomplish for the day.  There were calls to be made.  Potential clients to speak with.  Paperwork to complete.  And so much more.

So, I didn’t waste time getting pretty, I simply got to work.  That’s the way we do.  I was starting to make some headway.  I even managed to get dressed.  Then S’s phone rang.  He had been speaking with this guy who had several commercial Hardie jobs available.  They were big projects and each successful completion would lead to more projects.  He could promise S five jobs per year.  There were jobs all over North and South Carolina.  He made S drool with promises of a Myrtle Beach project.

S had to go meet him ASAP.  And since it was uptown, he would bring me with him and we’d go to the hospital in the morning instead of in the evening.  I loved that idea.  And so we went.  I sat in the car and read my latest book that I received as a member of the From Left to Write online book club.  I love it so far.

The project doesn’t look like it’s going to happen.  The guy wanted too much work for too little money.  And S wasn’t even sure he could afford to pay his guys the normal rates without losing money.  So, no go on the job.  Is it wrong of me to admit that I didn’t want him traveling all over?  Because…I don’t.  Not with Kenna in the hospital for goodness knows how long.  Not even after Kenna gets out of the hospital.  Not at all.  I like him home with me at night.  I like our snuggle and unwind time.  I like talking to him.  I need the intimacy our life allows.

Then it was off to the hospital.  I had found a hat there once that I liked.  It was sage green with a pink flower on it.  And I could simply imagine it on Kenna when she came home, or maybe even before.  Mommy loves hats, so Kenna better get used to them.  Plus, as a preemie, they help her stay warm.  Yeah, that’s my excuse.  Well, imagine my disappointment when it was gone the next time I came.

So, I asked the respiratory therapist about the basket I saw it in.  She assured me they were free and went fast, so if I ever saw anything I liked to simply snatch it up and hold onto it until Kenna was ready for it.  Well, every visit since, I have peeked in the basket.  And today, voila!  The hat.  Maybe the same hat.  All I know is that I did what I was told.  I snatched up that hat.  It will be ready for Kenna when she’s ready for it.

Then, there was the call I made to the one job that S thought was probably dead in the water.  Well, we talked for a good ten minutes about the job and our personal lives, and I’d dare say the job still has some life in it.  He even promised to call back in a few days.  Woo hoo!  This job could literally save us.  We have started referring to our current state as rock bottom, but I’m sure we could fall way farther than this.

So, the day in review…new hat for Kenna, potential job for S, makes everything happier for me.

January 20th, 2012  |  Posted in Reflections  |  No Comments »

Happiness is being on the mend…

Author: thenicknick

This would have been a picture of Kenna with her eye open, but she shut it before Daddy could snap the picture.

Yes, Thursday is my dedicated happiness day.  That one day a week, I dig deep and find so many things to be happy about.  And then I write about one.  Some weeks it is easier to find my happy than others.  Sometimes, my happy just overflows.

This is one of those weeks.

Sure, S is stressed.  I’m thinking of incorporating that in his name, see if he will loosen up.  I doubt it.  I think he’d look at it as me making fun of him…which I kinda am…but I’m his wife and I love him through everything.  So what if I poke my bear?

Ah, but back to the happy.

I am feeling so much better.  I know it may not seem like much, but as I write this I am a week and a half postpartum.   And after the cancer discussion that we  be had…I feel great.

And I think sometimes we take for granted feeling well.  Sometimes I don’t think we realize what a blessing it is to have our health.  For me, I am much better able to handle what life throws at me when I’m not feeling sick to begin with.  I can face what life throws at me…if I can just feel okay physically.

This past week…not so much.  With the HELPP syndrome kicking my butt, I was tired and in pain.  My pressures returned to normal literally hours after the c-section.  The doctors were amazed.  What can I say?  I live to please.  And then it was just the headaches, swelling, and incision pain I had to contend with.  That’s all.  But that’s enough.

Mobility is everything.  And when it hurts to move, to get up, to go to the bathroom or anywhere else, for that matter, it’s rough.  It’s rough trying to think when my head feels like it’s going to explode.  It’s rough when my feet are so swollen that I can’t walk and my hands are so swollen that I have trouble writing, or typing or of the other ‘ing’ things I so much enjoy.

But now…I’m better.   And that has made a huge difference.  I did laundry.  It may not seem like much, but trust me when I say that no one else was doing it.  And I cleaned the bathroom.  Again…I work alone in that department.  It’s okay.  Let’s just say I have an eye for detail that escapes my male family members.  Thank goodness Kenna is going to balance out all the testosterone in the house.

Speaking of Kenna…

She has had a week of amazing progress.  Yes, simply amazing progress.  She hasn’t had to be under plastic to maintain her body temp since Saturday.  And she’s been stable enough to work on fixing her PDA.  And, fingers crossed…knock on wood, she isn’t even suffering from the side effects.  Her kidneys are functioning better.  She’s not puffy.  And she’s finally gaining some weight…she’s a whopping 12 ounces right now.  (They don’t weigh her every day.)  We’ll know today if the PDA is responding to the medication.  Knowing the negative impact could take longer.  It doesn’t matter to me at the moment.  In my mind, in my heart, I know she is healing.  She looks better to me every day.  And that is enough.  Maybe one of these days, I’ll even get to see her with both eyes open.  So far, only the nurses have had that good fortune.  I’m more than a little jealous.

So, I’m on the mend.  And Kenna is on the mend.  And in a few months, life will return to a new kind of normal.  I can’t wait.

January 19th, 2012  |  Posted in Happiness is...  |  No Comments »

And now we wait, but I’m not so worried…

Author: thenicknick

First stop yesterday was at my doctor.  And I love going there.  I do.  They have become family.  I go there and get hugged and loved on.  It’s nice.

So, I start at the desk where the woman who checks me in knows all about me.

nurse: How is that baby?

me: Wanna see pictures?

Yes, I have become that mother who carries around a camera full of pictures of her newborn and assaults everyone she sees with them.  On the bright side, most people want to see my little miracle.  And so did the nurse.

Then I was called back and I was seriously disappointed.  It wasn’t my normal nurse.

me: Is Nicole here?

nurse: Yes.  Are you the Nicole she was telling me about?

I can’t be certain, but how many of us can there be, right?

So, I had to train a new nurse to hide my weight from S.  She didn’t do a very good job.  And then, while I was in the bathroom, I could hear her talking to Nicole, telling her I was there.

There was hugging and picture sharing.  Then she had to get back to work.

I was brought to the exam room.  My belly was examined.  And it was proclaimed I was healing, very nearly healed.

Then the doctor came in.  It was a really long nice hug.  She was happy to see me doing so well, so happy to hear that Kenna was doing well.  She explained she hadn’t stopped into the NICU because she didn’t want to introduce any potential germs.  I completely understood…and appreciated her sensitivity.

There was an exam and then a talk.

me: So about the tumors…

Here’s the gist of it…

There was some uterine material under the placenta.  It looked necrotic.  They sent the material off to pathology.  They have neither been able to confirm or deny that it is a rare placental cancer.  The only way to do that is with an MRI.  The MRI can’t happen for five weeks or so, once the uterus is completely healed.  So, we wait.

Now keep in mind that this is a rare cancer.  My doctor has never seen it before.  Yes, the same doctor who has never delivered a baby that small.  One might say that is also rare.  The odds may not be in my favor on this one.  Oh, but wouldn’t it make a great story?  And I love my stories.  Regardless, we have a plan.

S refuses to consider risking another pregnancy.  Apparently he took the ’til death thing seriously and he’s not looking for an out.  He wants me to get a hysterectomy if it comes down to it.  That’s the ultimate birth control.   And it’s the best way to ensure that the cancer would be completely removed.  So, there’s that.

I’m not going to worry about it for the next five weeks or the next five minutes.  We’re good.  We have bigger things to worry about.  Okay, we have really teeny tiny things to worry about.  Kenna takes top billing.

And life goes on.

January 18th, 2012  |  Posted in Reflections  |  No Comments »

I’m getting my exercise…

Author: thenicknick

Yesterday I was feeling so strong and ready.  It was Monday, one week after Kenna’s birth.  I made it home form the hospital late Thursday night.  It was time to get back in the swing of things.

As I was working away on the computer, I realized I had a message from Dana.  We have been online buddies for some time.  We belong to the Charlotte Media Group on Facebook.  (It’s very elite.  You have to be in some type of media and live in Charlotte…and be invited to join.  It makes me feel special.)  So, I read her message with enthusiasm.  She has been very supportive of us since Kenna’s early arrival.

The message?  She wants to write a piece about Kenna for the South Charlotte Observer.  Wow.  But I understand why.  Kenna is special.  She is tiny.  We are reminded of that every day.  And she is a fighter.  She wants it to be a story of hope.  That’s my kind of story.  Hope.  There is always hope.

And then, next thing I know…we discover she lives on the road behind mine.  This is Charlotte.  What are the chances?  Slim.  I can tell you that.  And yet my life is filled with connections and coincidences.  I love it.

And then, the next thing I know…we have agreed to be walking buddies and I’m walking over to meet her.  Only we did it the girl way.  We gave house descriptions instead of house numbers.  Did I mention that her street is a circle?  Oh, and I picked the wrong end.  So, I was walking and I was walking and my legs…felt great!  My belly…not as great.  And by the time I actually found her, after going back and forth and even down on the greenway in case I was supposed to meet her in back…I did find her.  We laughed about it.  Then Dana took  a look at me.

Dana: You look great.  How are you feeling?  Want to keep walking?

me: Sure.

I mean…I did have to get home somehow.  And I think she recognized that I was dying.

Dana: So, to your house then?

me: Oh, yeah.

So we went back to my house and talked for a while.  She had her daughter in a sling.  And it was so nice seeing a happy, healthy baby girl.  And yeah, I could imagine the girls playing together when they get bigger.  It was a great visit.  We have a lot in common.  And I look forward to getting to know her better.

Then I had lunch and pumped and prepared to go to the hospital.  That’s when I found out Kenna had a few issues and needed a surgical procedure and my permission.  It was rough, scary.  And I know I worry about it all more than S.  He is convinced that Kenna can weather anything.  He thinks it is just a matter of time before she’s a hundred percent and home with us.  I have tons of hope, but I know too much when I should rely more on faith.

Kenna pulled through like a champ and we reluctantly went home for the night.  We spoke to the doctor in the evening.  And I must have been feeling pretty comfortable because I fell asleep on the couch and forgot to call the hospital.

Of course, we’ve more than made up for it this morning.  I’ve had two heart stopping calls from the hospital already.  Yes, apparently the nurse caring for Kenna overnight stuck herself with one of the needles after drawing some blood.  And because Kenna is less that six months, they need my blood to make sure there’s no danger of HIV.  I’m not worried.  We’ve been tested so many times between the insurance and the pregnancies, we know we’re clean.  Ah, but it does mean another run to another doctor’s office after my appointment this morning.

The good thing is we can park one place and walk to all the others.  So we’ll start at my doctor’s office, go to the next tower over by covered walkway, and then finally the hospital by another covered walkway.  That should do it for my daily regimen of exercise.  I’ll be thinner in no time.

January 17th, 2012  |  Posted in Reflections  |  2 Comments »