Dreamers celebrate successes

On Kenna's three week birthday, we had the best visit ever.  Seriously.

From the moment we walked over, Kenna was active and excited to see us.  She was all squirmy and determined to make eye contact.  And daddy had her over stimulated for about an hour.  He kept talking to her and her heart would jump and her O2 sats would go through the roof.  She was so excited.

So while daddy was getting her all crazy, I talked with nurse doom.  She took care of Kenna all day and will be with her again today.  I have to tell you, she's no longer nurse doomy.  Now she's all nurse optimist.  See, that's what I do.  I turn people.  You should have seen Sam three and a half years ago.  Don't believe me?  Ask Vicki. 

Anyway...nurse optimist told me all about how Kenna has been doing.  She told me that Kenna had been having a great day, that they had been adjusting her settings and were weaning her down off the oscillator, off the oxygen.  And I noticed that the settings were lower than they had been in over a week.  And she was doing so well on the feedings that they are talking about increasing them to every three hours instead of every six. 

It was a great visit. 

Sam went to grab us a drink from the cafeteria...so Kenna and I had our mother-daughter time again.  She was doing her darndest to roll over onto her side.  She was arching her back, craning her neck, and pushing with her foot against the side of her little nest.  It was pretty stinking adorable. 

And we had such a great time talking to Kenna, talking to nurse optimist...it was hard to leave.  As always.  The thing is...I keep thinking that with each day, we're getting closer to holding her.  At least, that's what I tell myself so that I hold on.

Kenna is growing.  She's getting stronger every day.  We're pretty confident that she's going to thrive.  She has shown herself to be quite the thinker already.  She has reasoned out how to remove the tape that was bothering her from her hand by using her other hand.  Not bad for a baby they have cerebral palsy concerns about.  And maybe it's too early to worry about that.

Sam tells me I worry too much.  He tells me I know too much.  And that knowledge is dangerous.  But for now...for today...we celebrate the good stuff, the progress.  We celebrate Kenna, our little warrior.  Grow, baby, grow!

Dreamers love mother daughter time

I went to visit Kenna alone yesterday.  And I have to tell you, it was nice.  I didn't have Sam getting bored and rushing me.  I was able to take my time talking to the doctor and nurse to see what was going on with her and what they were going to do.  And once all the business was out of the way, I was able to enjoy my time with her.

Kenna seemed to really enjoy it, too.

We read a book together.  Okay, I read, she listened.  I have a book that I'm reading for the From Left to Write online book club.  The deadline is fast approaching.  And I thought that since Kenna loves hearing my voice, I would just read to her and get my work done at the same time.

We only made it through one chapter before we were interrupted, but I think that was pretty good.  Kenna was getting a little too worked up.  She was about killing herself trying to turn enough to see me while I read.  It was so sweet.  I couldn't change my position because the oscillator was in the way.  I was just as close as I could get.  And she was not thrilled with my location.

I stayed for a good hour and a half.  I probably would have stayed even longer, but we're working on boob time these days.  And when I have to pump, I have to pump.  So, I reluctantly left.

Leaving her every day is the hardest thing I do.  It really is.  The second hardest is seeing her face scrunch up, knowing that she is crying, but the tubes prevent any sound.  Kenna will usually reach out to me then, and I can't do anything.  I can't touch her, I can't pick her up and comfort her.  All I can do is talk to her to try and soothe her.

me: Just grow big and strong, little one.  Get healthy for mommy.  And when you come home, I'm going to snuggle you all the time.  You may not touch that crib for months.  I'll have waited too long to hold you.

And I mean it.  She is going to have handling restrictions for the first year of her life.  I know how this works.  We need to avoid exposing her to too many germs.  We especially need to avoid her ending up back in the hospital for anything but surgeries.  (I know how that goes, too.)

We have a long road ahead of us, but these moments sustain me.  And hopefully I'll have some good news about her response to the dexamethasone for her lungs. 

Kenna is three weeks old today.  The glycerin worked.  She pooped!  I'm so proud of how far she's come already.  She's my determined little warrior.  And she now weighs a whopping 1lb. 2.3ounces.

Dreamers deal with disappointment

Yesterday was the first day I haven't seen Kenna. 

Yeah.  And let me say it again just so you understand the gravity of the situation for me.  I didn't get to go see my baby in the NICU yesterday.

Oh, we fully intended to when we left the house. 

In the morning I had posted the pontoon boat on Craigslist.  We need to sell the boats.  That was always our intention.  Well, maybe we thought we'd keep the pontoon boat, but we aren't now.  Money is too tight to non-existent.

So, the boat was listed and calls were coming in.  And the boat is at Sam's sister's place in Belmont, which is about half an hour away from us, the opposite direction from the hospital.  Oh, but we needed the money so we had to show it to sell it.  We had three people lined up to see it.  And I figured this would be a breeze.  It was 3:30 when we arrived.  And the last person was supposed to be there around 5:30.  Plenty of time to get to the hospital.

Only, as we exited my vehicle, I started hearing this strange sound, like air escaping.  And the only place that air could be coming from...yup, my right back tire.  So, next thing I know, I'm calling for Sam while doing my best impression of the kid with his thumb in the crack at the dam.  We tried a variety of methods to stop the endless flow of air from my tire, but nothing worked.  And chewing the five year old chewing gum I found under the spare tire in the back was my way of taking it for the team.  It didn't work.  We couldn't use the spare because it was only safe to 50mph and we had to get on the highway to get home. 

Dad was at Christie's, too, watching the kids and he and Sam consulted on what to do.  It was irrelevant until the last guy came to see the boat anyway.  He claimed he wanted it.  Sam returned to the house with the news.

Sam: Good news.  He's going to the bank and talking to his friend.  He'll be back within an hour to give us the deposit.  And we can use that money to get some dinner and a tire.

Well, the hour came and went.  It was now just after 7pm.  And my hopes of making it to the hospital were growing dim.  I knew that Kenna had nurses and doctors offering care, but I wanted her to know I was there, too, even if I couldn't touch her.  Her mommy loves her so very much. 

And Sam was on the phone trying to figure out if any place was still open to fix or replace the tire.  He made a deal with the people at Sears in Gastonia to be there in fifteen minutes.  They stayed open late for him. 

He had warned me there would come a time when I wouldn't be able to see Kenna every day.  He reminded me that right now, with the limited work, that we simply can't afford it.  It costs a fortune in gas.  And we don't even use the parking garage unless we know it's past the time to charge.  And then to lose a tire...well, that really wasn't going to help the budget.

I guess I'm glad that Vicki had the foresight to start the Ever Ribbon charity for Kenna.  She knew that funds were tight and we would need help trying to make ends meet right now.  Sam is doing all he can, but I've been out of commission for too long.  With any luck, that will ensure I at least make it to the hospital every day.

By the time Sam returned, it was nearly 9pm and we still hadn't eaten.  Dad bought the family Bojangles for dinner.  It was nice having the family time, playing with the niece and nephew.  They are 2 &3. And it made me eager for Kenna to come home.  I'm dying to snuggle my daughter.

It was nearly 9:30pm when we headed out. 

Sam: Do you want to go to the hospital?

I did, but I doubted that I could even make it.  I had taken a two mile walk before lunch.  I had entertained the kids and gotten them to sleep while Sam and his father left to fix the tire.  And the thought of doing one more thing seemed pretty impossible.  It's a long walk in and out of the NICU.  We wouldn't have even arrived until well after 10pm.  We wouldn't have made it home until well after midnight.  And I had already called to check on her.  There would be other chances.  I have to live like Kenna will always have another day. 

So, I didn't see her yesterday.  And I will more than make up for it today.  I was asleep in Sam's lap just as soon as I finished pumping last night.  He woke me up at 1am to go to bed.  And I've already checked on Kenna this morning.  She's stable.  I'll see her soon.

Dreamers love a full belly

And Kenna...she loves a taste.  That's all she's getting right now.  Oh, but she is digesting all of it.

We're hoping that this will stimulate her bowels and get things moving.  The doctors do, too.

Funny, I've had some rough days.  There were so many times that I began to have doubts.  Oh, but at the moment, we're on cloud nine.  Maybe ten.  Is there a cloud ten?

See, Kenna is doing well.  She's stable.  She's making tiny itty bitty bits of progress.  The feedings are huge to me.  Finally, all my pumping efforts are paying off.

People ask me all the time.  They want to know what it will take for Kenna to come home.  And while there are a lot of ways that she has to mature before such a move can even be considered, I see her making strides in the right direction.

It comes down to this:

• Kenna must be able to maintain her body temperature
• She must be able to feed without a tube
• She must be able to breathe without a ventilator or oscillator
• And Kenna must not have apnea of prematurity

So, I'm hopeful that she'll start making some progress in other areas now that she has started feeding.  That feeding that I administered...so exciting.  Sam watched as I did it.  And he commented on Kenna's response.

Sam: Whatever you're doing...Kenna likes it.

He was right.  She was laying there all happy.  Her oxygen levels evened out.  She was content.

me: Look.  I made the belly happy.  She is her mother's daughter.

 I have been wondering about that.  She seems so much like her father.  Kenna hates being messed with while she's sleeping.  Her hair is so much lighter than my other kids.  And I haven't exactly had the chance to really explore the rest of her to see if anything is like me.

We watched her diaper get changed.  She has no butt.

me: Don't worry Kenna. If you take after Mommy at all, you'll be just fine.

Sam laughed.  And her nurse kept telling us how much she was enjoying us.

nurse: I've seen Kenna before, but this is the first time I've taken care of her.  She's quite the celebrity.

me: I've heard it's her attitude that proceeds her.

nurse: That's why she's still here.

Yeah.  I'm sure it's why.  If she were less of a fighter, less determined to be here, she wouldn't be here.  Kenna has already survived so much.  And her fight has just begun. 

Dreamers love deliveries

Yes, deliveries are a welcome distraction.  There's nothing like a good delivery to take the sting out of a blah day.

And this was in so may ways a blah day.

I called the NICU like I always do to see how Kenna was doing.  And they had nothing new to report.  There are no changes.  Kenna is stable.  She is still on the oscillator.  She is still needing more oxygen than we'd like.  She still hasn't pooped.  And since they haven't had to make any changes to her breathing settings, it's safe to say that her lungs are still stiff, the arteries harder than they should be.

And I know that I need to be patient, that she can't make huge progress every day that we should be content that she's having a good day, a stable day, but I thrive on progress.  So, I spent part of the afternoon considering what I could do to inspire my daughter to poop.  I thought about the book Lindsay told me about...Everybody Poops.  Maybe I could get that from the library and read it to her.  Lindsay suggested she simply has the same problem as her mother.  Yes, ladies don't poop.  Only sometimes they do and little Kenna needs to.

Then I set to work.  Sam has me writing a gazillion SEO articles for Carolina Home Enhancements.  Oh, and they are all on the same topic.  Did I say I wanted to be a writer?  Because I do.  Just not this kind.  Ah, but until my novels sell like crazy and I can afford to devote more time to them than to the areas of life that pay more, but I enjoy less...I'm stuck writing about things I am say...less passionate about.

Then it happened.  I was outside working from the garage couch, because when you work from home a change of scenery is simply working from a different room, when the mail arrived.  And I love mail.  It's like getting presents...most of the time.  This time...actual presents.

My cousin, Becky, sent clothes for Kenna to wear in the NICU.  And I absolutely love them.  There are lots of cute designs, all NICU approved...meaning they have snaps to go around the IVs and splints and all that jazz.  And there are loads of hats.  Did I mention that I'm a sucker for hats?  I love me some babies in hats.  Poor Kenna.

Suddenly, it occurred to me that this might be what she has been needing all along.  You know how when you are sick and laying around in pajamas, not getting dressed.  At first it feels kind of good, but if you've been sick for days, there comes a time when the act of being dressed makes you feel better, less sick.  Clothes make the micro preemie.  At least...that's what I'm going with.

And wouldn't it be really neat if I dressed her and suddenly, she made a sudden turn for the better?  Because that's what I imagine happening.  I can see her suddenly perking up.  Clothes.  And a hat.

So thank you, Becky.  I'll take pictures of her in outfits...because I just have to.  Thank you for thinking of her.  Thank you for picking such pretty clothes for our baby girl.  And thank you for being so practical (NICU approved!) and caring.  And thank you for distracting me when I needed it most.

Hugs!

Dreamers pray for poop...and healthy lungs

I think Kenna wanted a high five.

Kenna is strong.  She's a fighter.  And yesterday, we learned just how much.

We spoke with the neonatalogist that was there for her delivery, the one who miraculously managed to intubate her.

doctor: Kenna is strong.  She's tough.  Most babies wouldn't have survived all that she has.

That's the general consensus.  He assures me that they are all rooting for her.  He tells me that they are going to do whatever it takes.

The problem is that in some cases, they have done all they can do.

It's all on Kenna now.  She has to be the one to fix some of these problems.  The arteries in her lungs are still hard and need to soften.  Her lungs are still too stiff and they need to be flexible to accommodate the air.  Her PDA needs to close.  And most of all...she needs to poop.

Yes, they have done all they can in that department.  She isn't pooping.  The doctor described her bowels as 'still as stone.'  And they won't start feeding her if there's a possibility that it can kill her.  So, they want her to poop on her own, to rid her self of the meconium. 

I may have a solution to the poop problem.  When I tried to change Keenan's diaper in the incubator, it really stimulated his bowels.  He pooped for what seemed like forever.  And by the time his nurse had returned, I had a pile of wipes and two soiled diapers for her.

Maybe Kenna just needs some Mommy attention.  I'll gladly give it.  I am dying to be more involved, to touch her.  And I need her lungs to improve so I can hold her.

So, we're praying for poop and envisioning bowels unloading meconium.  We're praying for healthy lungs and picturing perfect healthy lungs filling effortlessly with air.  And we'd be so thrilled if you would, too.

On the bright side, both eyes work.  I have seen them.  And they are beautiful.

Dreamers set them straight

Okay.  It wasn't so much a 'them' as a him.  And the 'him' in question happened to be the chief neonatologist.

Honestly...I don't know what happened.  I've listened to many many doctors give me negative reports on Kenna's status.  And this wasn't even a negative report.  Maybe it was just that all the other times her demise was hinted at while this time, he said it outright.

All I know is that I listened to the doctor tell me that Kenna didn't have an infection, that the antibiotics were stopped.  I heard him mention the platelets and when she had her last transfusion.  He told me the PDA was still there and that she has some pulmonary hypertension.  Then he talked about her head ultrasound.

doctor: Yes, her head ultrasound was normal.  We won't do another one until 36 weeks, if she makes it that far.

And something in me snapped.  I never talk back to the doctors, but this time...well, he kind of earned it.  I know that he is a doctor.  I know that he has loads of experience to go along with his degree.  I know all that and more.

Oh, but there are things that he didn't know.  And I felt compelled to explain it to him.

me: If?  If?  Not if.  When.

And he gave me an indulgent smile.

doctor: Right.

me: Do you have any idea what she has survived so far?

Then I let loose and told him.

I reminded him that not one of my doctors thought she was going to make it past 21 weeks when we discovered that the amniotic fluid was dangerously low.  I reminded him that they didn't think she'd make it to 24 weeks when we could start the Betamethasone shots to prepare her lungs.  She had stopped growing.  And by the day she was born, she was in distress.  My doctor didn't think she'd survive the delivery.  And another neonatologist didn't think she would be able to be intubated because it required such a small tube.

Kenna is two weeks old.  I can't believe she's not going to make it.  She's like me.  Go ahead.  Tell her she can't do something.  Watch her.  She'll prove you wrong every time.  She'll do it just to spite you.

And for a moment, I think he saw it.  I am, in part, where Kenna gets her feisty spirit from.  I am her biggest cheerleader.  I am her advocate.  I am the one who refuses to believe that she's not going to make it.  Kenna's come too far.  She's not ready to give up yet.  I don't think she ever will.

We watched her on her oscillator.  It is supposed to breathe for her.  And at the same time, we saw her chest moving, her doing.  Our baby is working on breathing on her own.  It was beautiful.  And so is she.

Dreamers know life goes on

Our little miracle is growing

People are feeling guilty.  And I think it's silly.

Let me explain.

I have a friend who is giving birth today.  She knows she is having a big healthy boy via c-section.  And she's excited to meet this new family member, but I sense that she feels a little guilty over her happiness, over her good fortune, over the fact that she is having a healthy baby boy while Kenna is sick and teeny tiny and in the NICU.

Don't...just don't.

I don't begrudge her any of it.  I'm not envious in the least.  Really.  I'm happy for her.

Life is unfolding as it should.

I have another friend, a blog buddy who posted on Facebook that she feels selfish because she is picking out paint swatches while Kenna's fighting for her life.  This friend has been working on a divorce.  She had to adjust to being alone and rebuilding her entire life.  Now, she's ready to paint this pretty life that she has built.  Would I really begrudge her happiness?  Never.

Life goes on.

And it should.  It's supposed to.  And even though we're not where I wanted to be right now, we are part of this wondrous life.  We are living.  We have lots of happy moments.  Mostly right now we are just super hyper focused.  We have to do what we can to get ready for business this spring.  And we are super hyper focused on Kenna.

Every day we had to worry about any changes to her health.  Would you believe she's two weeks old today?  I can't.  It has flown by.  Two weeks.  Already.  Know what else?  She weighs a pound.  Found that out when I called the hospital before bed.  Her father did the math and proclaimed that at the rate she's growing, she could be home in March.

I think that's pretty much out of the realm of possibility, but I won't tell him that.  Kenna has a long way to go.  We can't even hold her yet.  We barely touch her.  She isn't eating.  She still is on an oscillator for her breathing.  And let's not forget that she can't maintain her temperature outside of the incubator yet.  This could take a while.  Oh, but any progress is good.

Our girl is growing.  That's part of life, too.

So be happy.  All of you.  And don't be afraid to share it or flaunt it or shout it from the rooftop.  I want life to feel normal.  That's why I don't talk about all her tubes all the time when I visit.  That's why I talk about the fact that her hair is looking mighty blonde.  And that her nose...unfortunately mine.  And that her ears are nice.  And that she has cute fingers and toes.

Life is good.  Be happy.  We are.

Dreamers face reality whether they like it or not

Again, not Kenna.  She came out blurry.  Sorry.

Every time we go to visit Kenna, we have to cope with the fact that the nurses and doctors want to assault us with reality.  And I get it, really I do.

All they see when they look at her is one sick baby.

To us, Kenna is so much more.  She's our little fighter.  She the homage to our love.  She's the newest family member, the one that binds us just as much as the rings and the paperwork.  She holds our hearts in her teeny tiny hands.

And it's funny because when we visited her yesterday I was studying her like I always do.  She was a little restless because she had just had an echo.  Any time the doctors mess with her they raise her ire.  I love it.  Kenna has fight and spirit.  She fits right in with the family.

When she finally settled down, I looked at her hands, crossed over her belly.  And her left hand was forming a perfect sign language 'I Love You.'  See, my daughter is highly advanced.  Maybe that's why she had to come out early.

me: Look.  She's saying she loves us.

And Sam came around to my side of the incubator to see her.  He was on the other side trying to monopolize the possibility of seeing her with two eyes.  I don't need to push that, since I will have tons of time to see Kenna's eyes when I'm home with her.  I'll get to stare at them while I'm nursing.  I'll be the first one to see them during nightly feedings.  I have a lot to look forward to.

Ah, but after we finished oooohing and ahhhhhing over our amazing baby, we sat down with yet another doctor.

Like all the rest of them, she wanted to make sure we were firmly rooted in reality.  And like we always do, we assured her we were, but it took some time.  Here's how the conversation started...

doctor: So how do you think Kenna looks?

Is this a quiz?  Is there a right or wrong answer?  Did I miss something?

We told the truth.


Sam: I think she looks a little better every day.

And we had a long long long conversation about where Kenna is and their goals for her.  Yes, my baby has a list of goals to achieve.  The goals are reasonable.  It's not like they want her to do 100 pushups or anything.  Instead they want to wean her off the oxygen.  They want her to tolerate feedings.  (Finally my milk can be put to use.  I haven't been pumping six times a day for nothing.)

Before we left, after she had given her spiel, we gave ours.  I let Sam start it, I just finished it.  It's the same one we give everyone.  We choose to be happy.  We choose to have hope.  We choose to believe that she will have more good days than bad and that she will eventually be home with us.  We are prepared for a long hospital stay.  We are prepared for setbacks.  We are prepared, but we are going to dwell on that.  We're going to revel in her successes.

Did I tell you my baby has two eyes, and that she's off the dopamine, and that she doesn't need to sleep under plastic, and that she is simply amazing to us?

That's what we think about.  That's what we focus on.  And I think Kenna has the right mindset, too.

Dreamers send hugs and kisses to everyone who shares and cares

Hugs and kisses, from us...to you.

It amazes me every day that so many people follow our story and share our cares and struggles.  And it amazes me that because of my openness, others are sharing their stories.  Every day I discover others who had similar experiences and not so similar outcomes.

It breaks my heart to hear how others suffered.  I know what it's like because I've suffered loss before.  We've suffered loss before.  Before Kenna, I lost a daughter, stillborn at 27 weeks...and she was bigger than Kenna.  And Sam and I lost our son last year, miscarried at 12 weeks, the day before Thanksgiving.

Maybe I have gone through so much in my life so that I can be there for others, so that I can honestly say that I know what they are going through, what they are experiencing.  And if that's the case, I believe it's worth it. All the pain and suffering will have meaning.

Now, however, I think our story is meant to be one of hope.  At least, that's how I'm writing it.  I have been really lucky because I have such an amazing support group.  This group spans the US, and is even international...thanks to Sahaja.

All this love and support has meant that I have the strength to do what I need to do.  (I write this as I'm supposed to be at the grocery store, so this support group also gives me an excuse for being home on the couch.  As in, Sam, I'm working! So, loads of thanks.) 

We are lucky we have had so many good updates to share.  Sure, we have had our share of drama, but it's the good stuff that I remember.  Did I mention she has TWO eyes now?  Two!  And even though there was some concern that she would have kidney issues from the medicine, she isn't...yet.

We are lucky that Kenna is such a fighter.  We are lucky that she obviously wants to be here.  Of course, she doesn't know us yet.  She may not feel that way when she gets older.  It's a risk, but so very worth it.

Keenan has promised if I take a really good picture of her, he'll make it his screen saver.  That's a whole lot of love coming from a 14 year old boy.  He does care.

We've felt to much love lately.  It's come in the form of hugs and comments and comments that are like hugs and warm smiles and offers of shoulders and chocolate covered strawberries and carmel and cheddar popcorn and ready to bake frozen deep dish Chicago pizzas from a friend in Chicago.  Yeah, it's been a whole lot of love. 

And all that love is so much appreciated.  Know that I send love to everyone, too.  Know that I don't take a single moment for granted, or one single act of kindness.  We have an attitude of gratitude.  And we have much to be grateful for.

Dreamers see the future...with one or two eyes

Obviously not Kenna's eye.  She's too young for makeup.

I wish I had a picture.  There may be one to add later, but for now, you are just going to have to trust me on this without the definitive photographic proof...

Kenna has an eye!

Yes, we arrived at the hospital after my doctor appointment and the appointment for the blood draw per hospital protocol for Kenna's poor nurse who was stuck overnight.  I tried to stay out of the way and let Sam get first gander at our little one while I spoke to her nurse.  All of a sudden, he interrupted us.

Sam: Kenna has an eye open!

me: Oh!  Let me see.

And so I stood in front of him because I'm short and he's tall.  And he wrapped an arm around my waist because he loves me and we were sharing this really special moment together.  And Kenna stared at us with her one eye and scrunched up her eyebrows because this was a new and wonderful experience for her.

If I'd have known she was going to look at me today, I'd have showered longer.  I'd have done my hair better.  I'd have worn more makeup.  I mean, I only get one chance to make this first impression.  And now, I've blown it.

I asked Sam later...

me: Did I look okay?

Sam: You look fine.

me: I only had time for a quick shower.

He sniffed me.  He actually sniffed me.

Sam: You smell fine.

That was reassuring, but I doubt she can smell either of us yet through all that.  So, I'm hoping her vision is still foggy.  I bet it was.  And with one eye, she has no depth perception, so I have that going for me.

All I know is that we have a lot of fun when we go to the NICU.  It's not a chore.  I wish you could have seen us today.  Sam and I have to scrub our hands at the sinks for three minutes before we're allowed in.  So we started scrubbing and bubbles were flying.  Next thing you know, we're washing our hands while blowing a bubble back and forth between us, laughing and giggling.  (Okay, I was laughing and giggling, but Sam was definitely enjoying himself.)

Yesterday, they took too long before letting us in to the NICU after the surgery, so Sam ducked low and walked on tippy toes past the front desk.

nurses: Are you trying to sneak in?

Sam: Yes.  How am I doing?

Yeah, he's stealthy like that.

And we have conversations with Kenna.  I go in there and tell her stories.  Sam has learned to join in.  I've realized that he joins in a lot more than he used to.  My antics before used to almost embarrass him.  He thought I was too perky, too playful, too happy, drew too much attention.  I like to have fun.  It's not like I'm all raucous, I'm simply playful.

So we spent much of the visit frying to get a picture of the eye.  It was a game.  And I was talking to Kenna, teasing Sam because he was having no luck.

Sam: She's too quick for me.

me: Why do I have a feeling that I'm going to hear this a lot?  I can see it already.  Sam, what happened here?  And Daddy will say, "Kenna was too quick for me!"

It was a great visit, a very social time.  We had the chaplain visiting with us.  Some of our other nurses stopped by, including nurse doom...who had only nice things to say.  And we met another of Kenna's doctors.  Happiness and fun are very attractive.

That's us.  Happy and fun.  We are well aware that the bottom could fall out at any time.  We know there could be an expiration date on our miracle, our luck could end.  We know.  We'd rather be happy and celebrate all the special moments.  I don't want to miss one.  We face the sun because it feels so lovely on our face.  And we see rainbows and beauty wherever we look.  We look a lot.

Live that kind of life with one or two eyes, finding happiness wherever you go.  See how much better it is.  And for all your well wishes, warm words, and prayers as we watch Kenna grow...we thank you.

Dreamers fulfill each other's needs

It isn't always easy...marriage.  Even in the best of circumstances there are challenges.  In our circumstances...I think we are doing amazing.  Really.

Having a sick child isn't easy.  It can take a toll on any relationship.  Factor in that there has been a sick mom...and may still be...I'll know later today...it is even more challenging.

Kenna is doing well at the moment, but can take a turn at any time.  It's like living with a time bomb.  You never know when it is going to explode.  You never know when it is going to just rip your whole life apart.

Sam goes with me to the hospital most of the time.  And I mean...most of the time.  Even when I was in the hospital, I was visiting more.  That doesn't bother me.  It makes perfect sense.  And I am the mom.  That's what we do.

Fix things.  That's what dads do.  And when dads can't fix things, when they feel useless, they remove themselves from the situation.

This is why Sam doesn't visit every time.  This is why I almost prefer going without him.  See, I can stay there for hours.  I can sit quietly, watch patiently.  I can talk with the doctors and nurses.  It's my thing.  I like doing all of that.  Knowledge is power for me.  It helps me stay armed and at the ready.  I hate being blindsided.

We talked about it.

me: Do you want me to wait for you to go see Kenna?

Sam: Do what you want.

me: I'll wait for you.

Sam: No, if you're bored before I'm ready, you go.

me: Okay.

Sam: It's not like I can do anything.

And I completely understood.  He can't hold Kenna.  Most of the time he can't touch Kenna.  He did get to take her temp last visit.  It was an experience and a half for him.  He's never taken an axillary temp.  I can't wait until he has to take a rectal temp and she poops at the same time.  I'm wicked, aren't I?

Soon enough she will be bigger and he will be dying to go every visit.  For now, I respect that he doesn't need to be there every day, just like he respects my need to go...every day.  And that's why this works.  We're creating an environment our baby can thrive in...a loving home, two wacky parents, a teenage big brother, and a frighteningly large dog.  What more could Kenna need?

Dreamers celebrate a week in the life of Kenna

One week ago, Kenna made quite the entrance into the world.

I started that day with an appointment at Maternal Fetal Medicine, the high risk doctor at 9am.  I was admitted to the hospital, complete with gown and IV lines by 10am.  The magnesium sulfate was running hard and fast through my veins by 11am.  By noon I had my first meeting with the anesthesiologist.  By 1pm I was meeting with my doctor and the neonatologist.  A team was assembled and I was getting prepped for the OR by 2pm.  When 3pm came around, the spinal was begun.

Kenna was born at 3:40pm.

And that's when the real excitement began.  I was still getting sewn up and stapled shut as the doctor came over and talked to me about Kenna.  She was intubated.  Sam was able to be with her, just like I had requested, just like we talked about and planned.  He took a video of her for me.  If you ask him about that experience, about getting to be with his daughter, he will tell you that she grabbed his finger and squeezed.  He was so impressed with her strength.  I don't know why.  She was small, but she's mighty.  She is, after all, a product of her parents.

It has been quite the week.

We have had our ups and downs.  We have had these moments where we worried that she wasn't going to make it.  The doctors and nurses kept reminding us that she was the smallest sickest baby they had.  They kept reminding us that she was the tiniest baby they had ever worked on.  She's the smallest living baby my doctor has ever delivered.  And she's been doing this a while. 

But yesterday, the doctor made his daily call and it was different.

He gave us all the regular details.  We heard about her temp and her blood gases and her oxygen saturations and all the other usual details.  And the parting words?

Kenna is turning the corner.

Yes, her kidneys are starting to function better.  Kenna is stable enough that they can talk to us about closing her PDA, unless by some miracle it is closing on its own.  She will be checked again today for bleeds on the brain.  Soon, if everything keeps on as it is, there will be talk of weight gain and feedings.  Soon, if everything continues to go well...we'll get to hold her.

I hate to get ahead of myself.  And I very nearly want to pinch myself.  It's been weeks since I've been happy like this.  I spent weeks on bed rest and sick.  It's about time we have good things going on.

I'm so proud of you, Kenna.  I'm so glad that you are here with us.  I'm so honored that I get to parent you and love you and raise you.  You are our miracle.

Dreamers deal with negativity

For the most part, I have absolutely loved the nurses that have been caring for Kenna.  I know they have an incredibly challenging job.  I am reminded constantly that she is the smallest and most critical baby in the NICU.

I get it.

What I don't get is why we have one nurse that I want to refer to as Nurse Doom.  Yes, she is young and seems very good at her job.  I will give her the props she deserves.  At the same time, she always has something negative to say.  And by that, I don't mean simply the report.

Sure, the medical report often leaves something to be desired.  Nothing is ever 100% good with Kenna.  There is always a downside.  It will be like this for a while.  We know this.  We accept this.  We work through the constant fear.

It is constant...just lingering there on the fringe of my awareness.

Any moment, the phone rings and my world could be shattered.  Any moment, Kenna could suddenly tank.  At the same time I choose not to think like that.  I can't.  How could I even function if I did?

So there I was, at the hospital last night.  And I listened as the nurses changed shifts and spoke about what was going on with Kenna.  Communication is key.  And then, Nurse Doom started.  I gave her a chance.  I really did.

me: Tell me something good.

nurse: Well, she's really sick.  She's so premature...

And as yesterday was a bit of a sensitive day, I had to stop her.  My eyes were already watering up.

me: I kept her in as long as I could.  I did everything imaginable to keep her safe, make her healthy.

She nodded.  I don't think she had considered how personally I could take all of those comments.

I had to decide on Monday whether it was safer to keep her in or take her out.  And the answer was definitely to give her a chance, she had to be born.  It wasn't an easy decision.  It wasn't even an easy c-section.

They could barely get the spinal in.  It took forever and countless tries.  They had to open up the back side of my uterus.  Do you have any idea what it takes to open up the back side of the uterus?  I wish I didn't.  I could have gone my entire life without knowing that, without feeling it, without Sam seeing it.  I'm ridiculously bruised from the lack of platelets.  It was quite the experience.

And that only came after weeks of bed rest, a ridiculous number of doctor appointments during that time, lots of shots, and a restricted diet.  I'm not sure what aspect of that hurt more.  It's a really close call.

Before that, even, I did everything I was supposed to.  I ate right.  I exercised.  I took my vitamins.

Needless to say, I don't need to be reminded that she came too early.  I don't need to be reminded that she is sick.  What I do need is for someone to consider that there is hope.  She's still here.  Kenna is a fighter.  There is always hope.

Sam said the nicest thing today.

Sam: I think we need to save the burning of the Christmas tree for when Kenna comes home.  We'll have a Baby Warming Party.

You heard that, right?  He said 'when.'

me: I love that idea.  My mom could come down and Jennie and George.

You know me.  I love having something to plan and look forward to.  (Not that Kenna's homecoming isn't enough...)  That is how I handle negativity.  I find that little flicker of hope, then I turn it into a raging bonfire.  Our next big one...for Kenna.

Dreamers light a candle of hope for Kenna

We believe in hope.  We struggle to remain hopeful.  Some days are easier than others.  Every day is a practice in hope and patience with a micro preemie.

Kenna keeps us on our toes. 

We get daily updates from the doctor.  Usually, I have already called to get my own update.  I do it twice a day.  I call first thing in the morning to see how Kenna managed over night.  And then I call at night so that I can sleep.  In the middle, we visit.

Kenna is stable.

I write daily Facebook updates because...people ask.  And it is easier to write a mass update than to call and update so many individuals.  There are so many who are keeping up with Kenna's condition.  There is no denying we are blessed.  Despite the challenges, we are very blessed.

And I'm glad for the challenges.

You may think I'm crazy, but we thrive on challenges.  We appreciate our life because it doesn't come easily.  We adore our children because we know what miraculous blessings they are.  And while it would be nice if something was easy...ever...the challenge means that Kenna is still with us, still fighting.

So this weekend, I followed the lead of our step-sister.  Kenna has her own group.  People are lighting candles for her.  If you would like, I'd be honored and deeply touched if you did, too.

Light a candle for Kenna. 

Fill a page with words of hope.  And maybe we'll get lucky.  Maybe she'll have one really great day in there before we celebrate her first week of life on Monday.  One week.  It went so fast, yet I felt every minute of it.

And I felt the strength and love and prayers that were sent on her behalf.  It gave me the strength and hope I needed to carry on.  Thank you for that.  My words are simply inadequate to show you how much it all means to us.  Just know that you have made a difference in our life and the life of one teeny tiny little girl.

When it rains, dreamers dance in it

Or in this case, we dance, kick, and splash.

Eventually.

Yesterday was rough.  No lies.  It was incredibly painful.  And scary.  And no one is out of the woods yet.

Wednesday night, I was being checked by my nurse after Sam went home.  He left before 9pm so he could be asleep by 10pm.  He had a job to complete.  As the nurse is checking me, she realizes that I have a huge bruise where around my incision and extending to my belly button and the sides.

She left, reasonably calmly and returned with a team.  Yes, a team of four nurses to check on my bruise.  They all agreed they had seen nothing like it previously.  To top it off, it was tender, like I had mentioned, and warm to the touch.

Something you should know about me...I don't complain.  If I mention something, assume it is a big deal.  My doctors have discovered this the hard way.  That's how I ended up in here Monday with the HELP syndrome.  My liver was shutting down.  My platelets were dropping.  My kidneys were questionable.  My blood pressure was soaring.  It was not my finest hour.

So, a call was made to the doctor, who promised to check me first thing in the morning.  Well, first thing in the morning came around 1pm.  It was then that i received news...good and bad.  Apparently the bruising is from the HELP syndrome.  With my low platelet count at the time of the surgery, I simply look really bruised.  It could take a month for that to heal.  And that was the good news.

The bad news is that I may have cancer. 

Yeah. when it rains it pours.  Apparently, when they sent my placenta away for examination, they also included some other suspicious looking uterine material.  I ended up getting a biopsy with no extra cutting.  Good, right?  Because it looks like I have a tumor or tumors.

The doctor kept saying that, kept beating around the bush until finally I just stopped her and confronted her.

me: So, we're talking about cancer here, right?

She hesitated, but she knows me and finally just came clean.

doctor: Yes.  Cancer.  But not the kind people die from.

me: How do you mean?

doctor: Well, we can treat it.  And we can do surgery.  It looks like it's all contained in the uterous.

I'm not sure how she could know that, since she didn't even know I had it until...yesterday.  Still, I have hope.  I couldn't really have cancer and a micro preemie who needs me...could I? 

No matter what, I can take it.  We'll be looking at the cancer more next week.  And we'll take it from there.  In the meantime, I have a baby who needs love and attention and healing.  I have a husband who is struggling to hold our life together while taking care of all of us.  I have a son who needs a normal life.  I have a lot to do, a lot to live for.

I can take a lesson from Kenna.  She just survived her central line insertion last night.  She's the smallest baby the doctor has ever performed this procedure on.  She defies the odds at every turn.  And she came from me.  I am blessed to have her.  She surprises all of us every day.

Time to find my happy and dance.

This dreamer is falling apart

Kenna's resting under the billi lights...

Usually I pride myself on holding it together.  And right now...not so much.

I'm in the hospital, which isn't bothering me a bit, which is an indication of just how badly I really am doing, I suppose.  I'm frustrated because I can't keep track of anything.  And part of the reason for that is that I want to do nothing but sleep.

My Percocet makes me want to sleep.  And the Regulin for the milk supply makes me want to sleep.  And because of all that...I find myself nodding out all the time.  And then I have to glance at the clock.   I'm dreaming and now talking to my dreams.   I've caught myself doing this twice.

It's not like me.  And I'm bit happy about it.  Part of me wants to simply go to bed and wake up sharp once more.  The other part considers that I may not be sharp for some time. 

And if it is the meds, there's nothing to be done about it.  I need the pain pills.  I need the Regulin.  And in reality, I also need sleep.  It's just impossible to get it while I have so much going on around here.

I've called to check on Kenna.  She is doing pretty well, all things considered.  And I'm considering everything.  We are waiting on some labs.  We have results of others.  Her day is going well.  Her night ended well.  My little toughy is hanging in there.  It makes me happy. 

I'll be happier, too, when the doctor comes over to check on my stomach...which is bruised and red and tender to touch and warm.  Just when things were finally settling down, I need an infection.  Sam is really worried.  And he's bothered by how long it's taking to find anything.  Me, too.   Every delay is a delay of my departure. 

And while I like being here, being close to Kenna, I have a family at home that needs me, too.  Man, do they need me.  The house has needed dusting for weeks.  And I've still boon doing the laundry.  I love Sam, but I just don't like adding to his burdens in the form of extra work.

Soon enough, all of this will pass.  Soon enough, I'll be good as new and Kenna will be on the mend.  It will be months before she comes home.  I don't care.  Whatever it takes.  No matter what.  I just want her home...healthy, happy, and strong.  We can't ask for more than that.

Dreamers appreciate all their blessings.

Sam and Christie hanging with me at the hospital

As I type, a few tears are trickling down my cheeks.  My big, red, puffy cheeks.

It is obvious to me that I am blessed.  I really am.

Sam has gone home to pick up Keenan so that he can come visit me and meet his teeny tiny sister.  Christie, Sam's sister, came and visited for several hours this morning.  And even though I am alone for the moment, I don't feel abandoned in the least.  I feel loved and supported.

Because I am.

And this is why I am blessed.

Sure, I hurt...a product of the c-section.  Sure, Kenna's condition is touch and go.  (Although, we're barely allowed to touch...)  Sure, there are financial challenges.  Aren't there always?

All that matters is that I can't for one moment muster up an ounce of sadness about any of it.  How could I?  I have been blessed with an amazing support group.

I felt so guilty that I hadn't been able to post an update about our status yesterday, but when I finally managed...I discovered that 45 people had sent messages of love and support.  Yeah, it made me cry.  It humbles me to know that I have so many loving, caring people in my life.

Somehow, we will get through this.  Kenna is fighting.  She has a number of challenges to face every day.  And I know I should be a nervous wreck, but for some reason, I'm not.  I am calm and serene and positive.  There are so many people rooting for us, I can't imagine a negative outcome.

Dreamers learn to live life moment by moment

That's one of the best ways to live anyway.  Of course, sometimes this life is lived that way by choice, other times it is thrust upon us.  Right now...big thrust.

I am headed to the high risk doctor again this morning.

And I have to admit, I didn't think I was going to make it.  I really didn't.  The pain has been a bit much.  It's one of the indicators that she's going to have to come out soon.

Sam and I have discussed it.

Sam: Babe, we'll go when you say, but I have a feeling that when we do, she's coming out.

me: I know.  Why do you think I'm hanging on?  I wanted her to cook as long as possible.

I do.  I'll make it.  I'm tough.  It's Kenna I worry about.  She's teeny tiny...even if she does have a strong heart.  And the longer she bakes, the better off she'll be, the better her chance of survival.

So, we don't plan.  And this is really a challenge for me.  I'm a planner.  And I can't plan right now.  It's a huge growth experience.  I'm learning to live more in the moment than ever before.  See, I thrive on my future plans, goals and dreams.  Right now...there is nothing past her birth.  There is nothing past the pregnancy.  And I don't know when she'll be arriving.

For now, I plan by the doctor appointment.  I planned to survive the pain until today's appointment.  And I plan to survive the pain until my Thursday appointment.  And I'll plan to survive until each of the appointments that are made in the middle and even after.

It's a good plan.  It's all I have at the moment...that and more life lessons.

Dreamers see hope everywhere

Or we try to at least.

I was crying before I even made it to the doctor yesterday.  Of course, that was for more personal reasons.  So, maybe I should plan to arrive teary eyed from now on and I'll have a better outcome in the office.

Sam had a meeting so he wasn't with me.  I know we need the money.  I know he can't be with me every minute.  That doesn't mean I have to like it.  Because I didn't.  And that's still not why I was crying.  I was just mildly disappointed over that.  Remember, I'm one tough cookie.

Well, then I made it to the office, where I experienced no lines and no waiting.  I have the same ultrasound tech each time.  And this time, I noticed a difference in her demeanor.

me: What?  No racing from the room?  That was subtle last time.

tech: Yeah.  Sorry.  No, she looks stable.

Kenna is stable.  She has gained two ounces.  That makes her 11 ounces at the moment.  And while I would love for her to be a pound or more, it may not happen while she is in utero.  There's no room with the low fluids.  At the same time, there was a lot more circulation than last time.  The screen was ablaze with red and blue.  It was a good sign.

And then the doctor came in to talk to me.  He didn't use the word abortion, like the other doctor did, he was encouraged by what he saw going on with her.  Kenna is better than she was.  She is growing...some.  And we're still working on the balance for keeping her in as long as possible without losing me.

He was concerned about some of my symptoms...especially the headaches and blood pressure.  This doctor used the word 'stroke.'  That was new.  Before it was all about seizures and comas.  So, I have to watch for my headaches.  And I have to stay closely monitored.  And with all the appointments we have scheduled, I don't think that will be a problem.

Shot two of the steroids is today.  And I'm supposed to feel really good for a couple of days after.  I feel mostly good now.

We talked about having a preemie, me and the doctor.  He talked about how good they are here, how it's one of the best NICUs in the state.  And I feel pretty good about that.  He said they'd like her to be a bit bigger, but she's got a good chance from now on.

That's what I believe.  That's how I get through.  The last two weeks were the rough stuff, the horrible waiting time where we didn't know if she even had a chance.  I'm a risk taker.  Getting divorced was a risk.  Dating was a risk.  Getting remarried was a risk.  Getting pregnant...risk risk risk.

Ah, but with great risks come great rewards.

There is always hope.  That's what this doctor said to me.  And I liked him immediately.  I have hope aplenty.  For me, hope abounds.

We're going to have a teeny tiny daughter.  One day, hopefully not too soon, I'll be introducing the world to Kenna Claire.  Life is full of miraculous possibility if only you are open to it.

Dreamers use distractions to their advantage

It's a proven fact.  Time and pain are best managed with distractions.

When I was younger, my mother did a fine job of keeping us busy so that we never noticed those long vacation days before Christmas.  As I grew older, staying busy has never been a problem.

Ah, but life on bed rest is different.  Sometimes I feel every minute of every day.  At least...it seems that way.  And because the pain has become an almost constant, I have learned how to manage the time and the pain with distractions.

As I write this, I congratulate myself for having gone so long without pain meds.  Don't get too excited.  I am limited to acetaminophen until Kenna is clear of the womb.  The trick is to not let the pain get out of control.  Yet another aspect of my life has become all about finding balance.  I have to balance not taking meds too soon with not waiting too long.

I have my word games that I play.  I have my Facebook time that I take.  And I cruise the web here and there as I plan what to do next.  New projects.  Searching for new inspiration.  And all of that works to help me keep my mind off the pain.

If I play it right, I can still manage to get lots of work done while I cope with all of this.  I have about completed a month of SEO writing.  I like that.  And that means that all that I need to focus on now are the extras.  The sponsored blog posts.  And I'm doing okay with that.  I may even have time to work on the next novel that I hope to complete.

Life is becoming more manageable.  I'm happy.  I'm calm.  And even though on paper I'm looking worse, I feel like I'm doing better.  Be blessed.  And find your positive distraction.

Dreamers play the waiting game in style

Yup.  That's what we do.

When we were waiting over Christmas, Sam's family came to visit Christmas Eve.  I loved it.  And then Lonnie and Lindsay came to visit Christmas Day.  Then some neighbors were around for New Year's Eve.  And I totally blew the bed rest thing for a few hours and went to visit Sam's family New Year's Day.  (Come on, Mama Vicki made cake!)  I rested plenty there, so I only wasn't laying during the drive.

And that brings me to tonight.

Lindsay and I have been planning a night of movies and snacks.  Those are my favorite nights.  And if I'm going to be stuck on the couch, it's nice to do it with friends around, having fun, pretending everything is normal.  It makes it easier that way.  The more distractions I have, the better I feel.  Instead, I lay around and feel every little pain.

So, we'll be watching movies.  Horror movies!  And we'll be eating all kinds of goodies.  I don't know yet.  I have some things I'd like, but since Sam does the shopping these days, I have to wait and see what he selects.  In a perfect world, there would be homemade nachos.  We use turkey meat.  And Sam cooks it so well that it is incredibly tender.  There would be cheese and lettuce and salsa and sour cream...all the perfect taco fixings.  And brownies.  I think we need brownies.  Definitely.

And then in the morning...the next step.  It feels so good to make it.  Kenna is holding up better than I am.  I'm good with that.  We're taking it day by day.  Each day is a huge victory.  And I'm so happy.

Dreamers adapt

That's a sign of a true dreamer.  We don't crumble when life nails us with lemons.  Nope, we collect them, squeeze them, add water to dilute, and sweeten them with sugar.  We aren't easily deterred.

We simply face what life hands us and change up when we need to.

For example...last year Sam and I were planning our great big getaway.  We figured we'd downsize and travel by boat.  We found and bought a boat.  We learned to sail.  We went sailing.  We lost our mast.  We realized that if we couldn't make it out of the bay, we probably shouldn't try our luck at the open sea.

Here's where the adaptation comes in...

We sold the boat.  Actually, it was more of a trade, which would explain why we are currently sitting on three boats.  When the weather improves, we will be selling them.  And with the money, we will catch up and move forward.  We have all kinds of things we hope to accomplish in the next eleven months and twenty-two days.

It's all about our baby and building our future these days.  Hopefully, travel will be part of it. I am exploring the options of getting paid as a travel writer.  Combine two of my passions?  Yes, please.

We're adapting bit by bit.  These days with my short leash...the adaptations are smaller.  Take lunch.  Sam brought home buffalo chicken strips.  And, dare devil that I am, I ate them...and lived.  Small steps.  Big pay off.  I'm not hungry at the moment.  Sometimes, that is enough.

Dreamers look to the future

I've been watching to see what some of my other blog buddies have been posting about.  I find inspiration everywhere.  And one thing I have noticed it that even as we stand here on the cusp of a new and amazing year, many are looking on the past year.

That's all well and good.  I do believe that we learn from our history, that only by studying it and learning from it do we improve our life.  At the same time, this dreamer is looking to the future.  I'm focusing on the happy.  I have plenty to be happy about.

And there is a lot about 2011 that I choose to forget.

So, we talk about the good things.  We focus on the big picture.  We live big, love big, and dream big.

2012 is going to be a huge year.

• We have a baby on the way.  Little Kenna will be here sooner than we'd like, but we're doing everything we can to ensure she has a strong start.  We have so many people interested and invested in her that I can't imagine that she won't make it. 
• We have a new window distributor we're working with.  Carolina Home Enhancements has teamed up with BF Rich.  They have a great product that we're so excited to carry.  We have been excited that the new government rated low E windows would make the home more energy efficient.  Homeowners saw a reduction of around 30% per bill for heating and cooling.  These windows...40%!  I know.  And they are essentially the same price as the others.  Yay!
• I have plans to complete another four novels this year.  Yup.  Last year I loaded four novels on Amazon.  And I'm fully prepared to do that again.  And again.  And again.  Yeah, I have a plan.  Here's hoping it will work.  I'm willing to put forth the effort.  May that be enough.

There's more.  There's always more.  All that matters is that we're going to work our tails off to achieve everything we hope this year.

Soon, I'll be posting our lists on Live the List Challenge.  And I hope to see your lists there, too.  Let's work toward our better life together.