She's a rock star!

I have to brag about my baby for a bit.

See, we all know that Kenna has beat the odds, defied them at every step.  And she's doing it again.

Before she had NEC, the doctors were ready to get her started on another course of Decadron.  Then she was sick.  And the Decdron was postponed.  We had met and discussed that we wanted her to have the best possible chance to get breathing on her own, to make it to Bubble CPAP.  And that meant that she would be feeding...unless they had no choice.

Well, on Sunday...they had no choice.  Kenna was requiring too much support.  And so they had to start the Decadron.  And while I knew she would respond well to it, as she had in the past, I didn't imagine she would do this well.

I talked her through it on Wednesday. 

She was struggling.  Sure, she was used to the tube down her throat, but the nares in her nose were really aggravating her.  Poor baby girl.  And the sticker on her nose and across her face designed to hold the nasal cannulas wasn't much better.  She was pretty stinking miserable.  They told me she was going to be re-intubated because she was doing so poorly.

And I talked to her.  I told Kenna that she was smart and strong and she could do this.  I reminded her how special she was and how loved.  And she calmed down.  She settled in.  Her oxygen requirement dropped from 60% to 30% in half an hour.  She was even high sating...100!  I just laid my hand on her and kept talking.  It worked. 

I worried about leaving her, but she proved that she was strong.  Kenna just needed a little encouragement to get started.  Since then, she has been without anything several times when they have had to change her CPAP out.  Yesterday when I was there, she went without any support for fifteen minutes with no problems, not even a desat.

They started a new program for babies and children that are hospitalized at Hemby.  It's called 'Beads of Courage.'  I wanted to be a part of it, to start Kenna's bead story.  The kick off was Wednesday...the same day that Kenna started the CPAP and was struggling.  Instead, her nurse started it for her last night. 

Kenna's sign on her womb room is an owl family.  I love it.  It's perfect.  I'll be hanging it up in her room when she comes home.  And her Beads of Courage...are in an owl bag.  I'll take pictures when I get a chance. 

I'm not sure I know anyone more courageous than Kenna.  She has been through it and come out on top.  Our baby girl is a rock star. 

Thank you for thinking of her!

My little princess

Kenna getting weighed after being held for two hours.  She looks relaxed.

 

And then the bathing began.  Look at that face!

Yup.  She's definitely not happy.

Then the bathing was over.  She looked surprised...and ready to get upset again if necessary.

In minutes she was weighed, bathed, diapered, and ready to go back in her womb room.  After breathing...crib time.

Please think of Kenna as she is on Bubble CPAP.  This is a huge step.  And it is time.

Dreamers know one project leads to another

I love the new paint color.

It all started with one simple idea.  We should use my tax money to get new floors before Kenna comes home.  She has premature lung disease and the thirty year old carpets weren't going to make it any easier for her around the house.  Having already survived one preemie and knowing his special needs, we wanted to do everything we could for Kenna.

And so we picked the flooring.  It arrived.  It was delivered.  And it still sits clogging up my dining room.  It has to.  Little did I know that so many projects would stem off this one simple idea.

Oh, but in remodeling, this is what happens.  We realized that if we were going to do new floors, we'd better have the walls and ceiling just right or we'll later ruin them. 

So, the ceiling in the master bedroom needed to be scraped.  The kids' rooms had been done before we moved in...new ceilings, new paint, new carpet, new lighting, and amazing trim work.  Sam is super handy to have around. 

We had installed blinds so that my peeping ex could no longer see in and we bought curtains to go over the blinds.  But other than painting an accent wall and new lamps for the nightstands, we hadn't done anything to the master.  And I'm guessing we passed on this because we knew how much work it would be.  The kids' rooms were easy.  There was no furniture in there, nothing to work around.  It was perfect.  Our room, loaded with furniture far from perfect. 

The ceiling has been scraped and painted.  The lighting has been reattached.  The back wall is painted a lovely shade of taupe in a suede treatment.  I bet you had no idea I was so talented.  I'm not.  It's easy.  And the rest of the walls are being painted.  Yes, we are almost done.  For now.  There will be new furniture in the future. 

And the garden is very nearly planted.  It would have been all done, but for the fact that there was not enough dirt.  We have to import it since we are built on a boulder topped with clay.  It's not exactly conducive to a garden.  It's barely conducive to grass...although the weeds seem to thrive.

Just when I thought our remodeling was coming to an end...Sam and I were snuggling on the couch Saturday night.  We were proud of all we had accomplished thus far.

Sam: You know...one of my crew members blows insulation.  He said he'd give me a good price for the attic.  We're loosing a lot of heat and wasting a lot of air in this old place.

me: Yes, but what about the kitchen?

Sam: What about the kitchen.

me: Well, we talked about taking out the drop down ceiling and how you'd have to climb through the attic.  Would that still be possible?

And that is why Sam ended up taking down the kitchen ceiling last night.  We have to get that done before the insulation.  The end is in sight.  I can almost see it.  I've given this a lot of thought.  And I'm not sure there are many more projects to be completed around here.  Really.  Aside from the kitchen and master bath...we're good.

Soon, I'll share pictures to prove it.  And with any luck, Kenna will be home soon to enjoy it.

Dreamers deal with haters

Every few weeks or so, I get a really nasty comment on this blog.  You never see it.  I deal with it.  I dispose of it for all of us.  And while I'm pretty sure I know the source, the coward who hides behind the anonymous comment, and that I could simply be direct and address this individual...I decided to do what I do.  I decided to help others who all deal with mean, nasty, ugly people in their lives. 

Sure, I had that millisecond where I was hurt.  Then I remembered the eternal wisdom of Taylor Swift.  People throw rocks at things that shine.  Most of the time, I'm so happy that I practically glow.  No wonder.  And then I felt sorry for this person, like I do for all people who throw stones.  How unhappy must you be with your life that you have to reach out and try to make others miserable?  That seems pretty sad.  It makes me sad for anyone who lives like that. 

My spirit is too strong to be taken down a notch by mean words. 

You can keep sending those nasty grams, making nasty comments, dropping nasty test messages.  I'm fine.  I'm good.  I'm not going to play into any of it.  You can't hurt me.  You can't dim my light.  Let that be true for all of you.  Just remember that when people are being mean, they are trying to drag you down to their level, trying to make you hurt like they are hurting.  Don't feed the anger, feel sorry for that unhappy soul.  And stay strong.  Stay true to you.

Just shine.

Dreamers deal with numbers

For some reason...numbers played a very big part in yesterday.  I sat down with one of Kenna's primaries and she taught me much about what was going on with Kenna infection wise.  She explained the numbers...what the tests were showing, what they should look like.  And it gave me a lesson that I hadn't anticipated ever learning.  To think that I had very little interest in biology in high school.  Now...I get it.

And so I left feeling reasonably comfortable with Kenna's condition.

I had also been dealing with numbers as the phone rang and rang yesterday.  And it never rang while I was just hanging around the office.  Nope.  It waited until I was in the car.  So, I kept answering the phone and struggling to write down numbers as I drove.  When I told Sam the story later, he reacted a little differently than I anticipated.

Sam: You could have crashed.

me: I know!  And you would have lost that lead forever.

He shook his head.

Sam: Yeah, it's the lead I'd be upset about losing.

I smiled.  My husband loves me.

Sam: Don't do that again.

And I was beaming. 

We have a lot going on.  And this was the first night that we were going to relax for a few minutes for bed and watch one of our many shows.  It was when he relaxed that he started sharing with me.

Sam: I have so much on my mind.  There are a lot of things bothering me that I don't tell you about.

I lifted myself off his chest. 

me: Whoa.  Are we okay?  Is there something you want to talk about?

Sam: No, just work stuff.  We are 100% great...not even 99%.  100% great.

More numbers.  Good numbers.  Now we just need to work on Kenna's numbers.  Fight that infection, little bit.  You are tougher than that.  You show that infection who's boss.

I'm not worried.  Our girl is a fighter.

Dreamers make it happen

I was on my walk yesterday when something suddenly occurred to me.  Our life has become so surreal, so strange, and yet so comfortable at the same time.

For as long as we've been together, Sam and I have been plotting and planning this future.  I remember him saying that he figured one day he'd find someone he loved.  And then after about three years of dating, that woman would move in.  And then after a year of living together, they would get engaged.  And after that, marriage.  And maybe a few years later...a child or children.  It was this ten year relationship plan that he had in mind.  He was only 27 at the time.  And in his mind, he had all the time in the world. 

At the same time, I was encouraging him in starting his own business.  His father, from whom he had learned the ropes, was nearing retirement and Sam wanted to have his own company.  We worked on that together.  He had big plans, huge plans.  He never wanted to sub for others, but figured it was a good way to learn how others ran their companies.  Then he would just run his own jobs.  I would quit mine, run his office, and write.

There was talk about what we would do to the house.  We had a long long list of all the improvements that we wanted to make around the house.  We wanted to remodel every aspect of it.  The house has a great floor plan, ample space, and good bones, but it is dated...as any thirty year old home would be.  And we had a ten year plan to remodel it, pay it off, rent it, and buy or build a home on water. 

Here we are, a mere four years into our ten year plan. 

And I look around at all the progress we've made.  Our company is now a force to contend with.  We are finishing up our first major job of the season, siding a home so large that it is considered the equivalent of four or five houses.  We have other jobs lined up.  It feels good. 

Last winter was the first winter I didn't work outside of the home.  It damn near killed us, but we made it.  And this year, we learned from our mistakes and we're already working on saving for the winter.  We're squirreling away our nuts.  I'm stocking up on food.  Our savings is growing.  I'm incredibly encouraged.

Within the next month or so, we will have completed so much of the list that I won't need to worry over where it is.  I will know for sure that all we have left to do is some trim work, fix the fireplace, and remodel the kitchen and master bath.  Practically nothing...considering what we've accomplished over the last few years.

The amazing part to me though is our relationship.  We're married and have a baby girl in less than half the time he imagined he'd need to be ready, to be comfortable. 

I should know by now that we can accomplish anything we set our minds to.  Still, that it's all actually happening is so special to me.  I really do love our life, even our struggles.  I know they won't last.  And every time we pull through we are stronger and closer than we were before. 

Figure out what you want from this life and go get it.  See what a difference it makes to be living your dream.

Baby's got back

Kenna has been sleeping a lot.  She needs to.  It's part of her recovery.

And these moments where she is awake and alert are rare.  I don't want to mes with her much when I visit.  I don't want her awake and agitated because she isn't being fed.  She'll figure that out soon enough.  I don't need her being more aware of that.

Her nurses had picked up on that, too.  They know that she is...well, they all keep using the word 'feisty.'  And they know she has a way of getting her way, a way of getting what she wants by desating when she is upset.  So, for her health, they spoil her.

And in an effort to not irritate her any more than necessary, they even change her diaper when she is laying on her belly without flipping her over.  That's what happened yesterday.  She was asleep when the nurse went in to suction her.  And since she was already bothering her, she checked her temperature.  And if she was already doing all of that, she might just as well change her diaper.

That's when I saw it.  Kenna has the beginnings of butt cheeks!

I was so excited, I had to text Sam.

me: She has a butt.

Sam: You did it.

me: I did what?

Sam: You gave her a butt.

me: Finally, my contribution to our baby!

Seriously.  She has so many of his features.  I'm pretty sure I even had a glimpse of blue eye yesterday.  Sometimes I feel like I had very little to do with her existence.  I only had twenty-four weeks to make an impression.  Apparently, I failed miserably.

Our baby is filling out.  She is healing.  And I have high hopes that she will be home...eventually.  I can't wait. 

Dreamers face their fears and come out on the other side

I have to tell you, as the mother of a preemie, there is nothing more scary for me than hearing the words 'necrotizing entercolitis.'

Since Keenan was in the NICU, that has always been my biggest fear.  See, it's one of those conditions that can really finish a baby off.  That's why Wikipedia had the images of the autopsy with their article.  Stupid Wikipedia.  The problem is that a baby can go septic, a bowel can rupture, and death can ensue. 

To find out that Kenna had what I had always feared...well, it was really demoralizing.  We had such high spirits for so long.  She was finally moving right along with her feeds, tolerating the 30 calorie ones like a champ.  There was a Decacron plan in place to wen her off the ventilator.  And I was practically planning her baby warming.

We imagined her home in time for the March of Dimes walk that we were doing.  How great would that be to have her walking with us?  Only that's not happening now.  Her doctor told me that I should plan on her being in the NICU for another couple of months.  That's May.  That's the middle to the end of May.

Still, that's better than the alternative. 

I would rather have her safe and in the NICU than have her come home too soon get sick and...not make it.  So, we can tolerate anything. 

We faced our biggest fear.  Kenna getting NEC...that was it.  And now, we're ready to move past that.  She is out of the danger zone.  72 hours.  That's what the doctor said.  If there was going to be a complication, we would have seen it by now.

In fact, we have every indication that she is headed on the upswing.  Her sats are better.  Her blood gas is improving.  Her eyes...they opened.  Her arms are moving.  She is tolerating her care and her tests beautifully.  That's our little fighter. 

This was a speed bump on her trip through the NICU.  She's going to be just fine.

Dreamers understand each other

doctor: How is your husband doing?  How are you two doing?

That is something that the doctors seem to check with alarming regularity.  And I know why.  They need to know how we are because all of that impacts Kenna. 

And I have to admit, we're good...especially after last weekend.  We're really good at noticing when we aren't connecting as we should, as we'd like.  And so we work to fix it pretty quickly.

That's why when the doctors asked me about how we were doing, I was able to answer them honestly.  We are doing good.

me: I know he hasn't been able to be here for a couple of days, but that's a combination of things: work and his inability to come see his daughter looking really sick and in pain.  And I respect that, just like he respects my need to be here.

They looked at me and smiled.

doctor: I wish all parents got that.

I'm sure they don't.  I'm sure there is tension galore.  I'm sure there is fighting.  I've seen it.  And that isn't necessarily coming from lifers like us.  I'm beginning to think of us that way because Kenna has been in the NICU for so long.

There's something about our relationship that I'm really proud of.  Some couples, when hard times hit, they fall apart, they break down.  When tough times hit us, you couldn't break us apart with dynamite.  We get that tight.  And in times of crisis, that's how it should be.

In life...that's how it should be.

Sure, it has been an adjustment for Sam.  He wasn't used to sharing his home, then his life.  He thought I was silly with my need to snuggle on the couch with him in the evening and go to bed together every night.  Now, he craves it, too. 

I can tell because he reaches out more than he ever has.  He waits for his hugs.  He knows when I need one.  As challenging as life is right now, it has also never been better. 

We do what we always do.  We work out the kinks.  We work through the challenges.  We do it together because no matter what, that's how we want to be...together. 

Not soon enough for our liking, Kenna will come home.  We have a ways to go, especially after this hiccup.  Can you really call NEC a hiccup?  Well, it has definitely postponed her homecoming.  I don't see any way she'll be ready to come home at the end of April now.  We're thinking some time in May.  We hope.

It doesn't matter.  That just gives us more time to prepare.  The house will be perfect for her.  And we'll be perfect together. 

Just a touch of NEC

That's what we're calling it.  There are full blown cases, but she doesn't have one of those.  There are surgical cases and she isn't one of those.  Kenna's NEC is medical.  And she is gradually improving.

I was worried about her, hated leaving her, but I have so much to do that I can't be here 24 hours a day.  That is why we have the primaries.  They are moms away from moms.  That's what one of her primaries and I decided.  And I have managed to luck out and get Kenna's primaries every day this week.

As for Kenna, she is hanging in there.  She really is.  As that same primary put it, if Kenna had to get NEC, she is doing it just right.  And she is weathering it beautifully.

Sure, she has never been more still, another one of her primaries noted, but she doesn't look bad.

And I suppose that comparatively speaking...she doesn't.  Still, I am her mother and I see the changes in her.  Her eye lids are red.  They have never been red before.  The only way she demonstrates her responsiveness at the moment is through her sats.  Those decline slightly when she is fussed with.  Other than that, she is very stable.  I'm encouraged.

The doctors have commented on my attitude.  Apparently they like it.

My philosophy is that bad things happen.  It's how you face them and deal with them that makes all the difference.

So, Kenna has a touch of NEC.  She's going to make it.  The more I say it, the more I believe it.  The more I see her improving, the more I believe it.  I'm so proud of my baby girl.  She's made of tough stock.  She's fighter.

 And we are so blessed.  We are blessed to have so many people who rally for her every time she has a dip.  And we are so blessed to have Kenna come out so hardy, so strong, so ready to weather all the challenges.

We're dancing in the rain.

Dreamers search for the sunny side

I think I thought of two pounds as some magical number...like if Kenna just hit two pounds, everything would be great...she would be out of the woods.  Unfortunately, life is not like that in the NICU.  Shoot, life is not like that anywhere.

So, yesterday morning started with my normal call to the hospital.  And I was pretty much told that Kenna was doing reasonably well.  She had a poopy diaper overnight with some blood and so the feedings had been discontinued.  I had no real reason to worry since we had been through this before and discovered that...there was nothing to worry about. 

Only this time...there was.

We were busy all morning and my shower was delayed until 1pm.  Yeah.  That late.  And it was during that shower that I had a call from the former nurse doom who has since become my favorite nurse.  (I'm attributing that dark period of our relationship to her morning sickness.  She's having a little girl in July.)  I called back immediately, after feeling incredibly guilty for showering at all.  That's how it is with me.

So the nurse told me that Kenna seemed worse, that there was an ugly residual from her last feeding (they suck out her stomach contents to see that she is digesting her meals before administering a new one) and that her blood sugars were really high...like twice the high end of the normal limits high.

And I told her I'd be there as soon as I could.  First I finished what I was doing.  And then, I made it to the hospital where I saw how sick my baby was.  She didn't look horrible, but she wasn't her feisty little self.  She opened one eye to look at me, then that was the last I saw of her...or rather...she saw of me.  I was there for another two hours.

I was there while they took x-rays and ran a battery of tests on her...drawing blood, taking cultures from her endotracheal tube, and trying desperately to get a urine sample through catheterization.  It wasn't pretty.  None of it was easy.  And she was sluggish at best during every bit of it.

There is a reason I worked hard to get the primary nurses I wanted.  Having primaries means that when something isn't right with a baby, the nurse knows the baby well enough to catch it early.  Like yesterday.

Kenna has NEC (necrotizing entercolitis).  It can be fatal.  It can require surgery. And sometimes, if you are super lucky, it can be caught early enough that it can be treated with antibiotics.  We'll see where we fall over the next few days.  The antibiotics are running now.   And once Kenna is feeling a bit better, she'll be giving the nurses a really hard time for not feeding her.  I'm looking forward to that.

So the nurse and I were talking post diagnosis...

me: Well, just think of all the milk I'll be able to store over the next few weeks.

She smiled at me.

nurse: And look at you finding the positive.  Amazing.

me: That's what I do.  Just give me a minute to process and I can come up with something.

nurse: That's what Kenna needs.

I know this.  And that's why we do what we do.  That's why we are the way we are. 

Hang in there, baby girl.  You have a whole lot of people rooting for you.

Dear Kenna: a letter on daddy issues

Dear Kenna,

I hope you have Daddy issues...only not the kind that everyone else thinks of.

I hope that you grow up hoping to have someday what Daddy and I have.  I hope that you are particular and learn that some things are worth the wait.  I hope you see the way Daddy and I look at each other and want that.  I hope you see the way we work together as a team and never settle for less.

I hope that someday on your wedding day, after all the other guests have gone, your husband makes another vow to you, a private one, spoken from the heart where he promises to be the best husband to you and the best father for your children.  May this man do that every day of your lives together, strive to be the best man he can be for you and your family.

While I never wish challenges and struggles and burdens upon you, if they come, and they usually do, I hope your husband will weather the storm with you.  I hope that you never feel lost and alone.  I hope that he always has your back...and your front...and both of your sides.  And I hope that's where he is...at your side.

I hope that you will have understood over the years how important communication is.  And I hope that you will have a husband you can talk to, that you can share your hopes and dreams and fears with.  I hope he loves you enough to recognize when you are sad and sits down and asks you about it.  And I hope he pushes you to share even if you are afraid to or think you aren't ready.

May he say all the words of comfort that you need to hear in that moment and wrap you in a magical embrace that you will come to need as much as you need the air you breathe.  May his kisses soothe and heal, coming from lips that would never lie to you.  May his words come from a heart that would always be true to you.

May this man surprise you often with the depth of his feelings and the quiet ways he shows it.  Trust in what you see more than what you hear, just like you learned from your daddy.  No matter what, know that your mommy and your daddy will always be there for you to kiss your boo boos when you are little and help heal the bigger wounds when you are older.

With much love,

Mommy (& Daddy...the first man you'll ever love)

Two months already?!

Yes, today my little one turns two months old.  I can't believe it.  It has gone so quickly and dragged on all at the same time. 

I just have to look at her little face to know that we are so very blessed.

Things could have gone so horribly wrong so many times, but my little warrior pressed on and persevered.  I am so proud of her. 

It seems like it wasn't so long ago that I sat up in bed one night when I realized that what was different about  Kenna was that she no longer slept under her plastic blanket.  And then it wasn't long after that we saw an eye...then two.  She has made such progress in so many areas.  She no longer has any IVs, her central line was removed.  She is on full feeds and they keep increasing as she proves her ability to digest all they can give her.  They have increased the calories of her feeds up to the maximum of 30 from plain old milk which is 20 calories. 

She had the good fortune to be born with good skin.  Where it should have been weak and ripped, leaving her exposed to germs and infections, Kenna's has been strong.  She has always looked remarkably good for being sixteen weeks early. 

While Kenna still has that pesky PDA, it is smaller.  It doesn't seem to be negatively impacting her heart.  And there has been no further mention of potential surgery.  The longer we can wait, the better.

The number of transfusions she has been receiving has decreased greatly, too.  And there is some hope that with the new vitamin and iron supplements she is receiving that she will no longer require any.  That doesn't worry me in the least.  In time all will be healed.

So, we're still seeing progress, though it is gradual.  She has been flirting with two pounds for over a week.  There's been a lot of winking, a few cat calls, but two pounds has yet to seal the deal.  That's just the way it is.  For now.  Just like we aren't able to hold her much...for now.  And just like she is better off in the hospital...for now. 

We'll certainly be celebrating three months in the hospital...and possibly four months.  And if Mawmaw Vicki keeps bringing them goodies to celebrate, they may keep her forever.  Mawmaw Vicki's baking is that good. 

So glad you are here, Kenna Claire.  May you only remember the good times.

Dreamers make self-improvements

We've been busy working on the home for...well, forever.  And there's a lot to work on.  It's a 1980 contemporary ranch.  We love the floor plan.  We love all the space.  We don't love all the dated looks.

We have already remodeled one bathroom last summer.  And the kids' rooms have been completely updated from floor to ceiling, only we went in the opposite order, which is how all these remodels need to go.  And so. we're working on our next projects.  All we have left of the main living area is new flooring.  That is waiting on some tax return money.

Then it's on to other areas of the house.  We have the hall to repaint since the flooring will go down there, too.  We have the new lighting to get.  It's really dark in the hall.  And lighting is such a quick cheap fix.

I have this feeling that there will be some work done in the master bedroom.  It makes perfect sense.  That will be the one room that hasn't had new flooring.  And I worry about Kenna's lungs.  I worry that there will be too much old dust hanging around in the room she will be sleeping in the first year of her life.  So, if we can, we will fix that, too.

But we have to work on ourselves some.

Marriage isn't easy.  We need to take some time to connect in ways that we haven't for too long.  It's been a really long time since we've stayed up and just talked about anything other than business.  I know that it's our livelihood, but there's more than that.  There has to be more than that.

So, I bought a new dress and new shoes...for a business meeting.  It wasn't a compete transformation, but it was a lovely start.  It made me feel sexy.  And I need to feel sexy.  I need for him to see me as something more and to remember what drew him to me. 

And that we feel comfortable enough to start thinking about anything but Kenna all the time is a good sign.  It means she is improving.  It means that we are confident in her health.  And it feels really good to call the hospital and not be scared all the time.  Everything will be better in time.

Slow but steady...she's winning!

I spoke to the doctors and was heard.

Kenna won't be starting the next course of the steroids immediately.  Instead, she is starting the 30 calorie feed.  She will hopefully gain some weight.  And then we will feel more comfortable with her taking that next big step.

In addition to the change in her feedings, there is a change in that she is finally being given vitamins and iron.  Preemies have difficulty with making enough blood to keep up with the blood draws, so the iron will help.  It will also help because breast milk babies need the iron supplement.  Babies who are on formula don't have that issue because there's already iron and vitamins in the formula.

Kenna just gets what I eat.  There's a lot of hot sauce and chocolate.  There's plenty of dairy and veggies.  And because of her father...plenty of chicken.

So, we're seeing progress.  Once the steroids start, the progress should be extreme.  We're ready.  I think.

All I know is that I loved the visit yesterday, seeing Kenna so alert.  We live in the moment.  Each moment counts.

And today is eye exam number two.  We'll see if the eyes are more mature.  I think it will take lots of visits and lots of time before we get a definitive word on the eyes.  She tolerated the last exam well, but seemed worn out after.  I expect more of the same this time.

So we wait and hope for the best.

Dreamers set some conditions...

So, we knew this day would come.  We had to make some decisions about Kenna's care.

A month ago she had her first treatment of Decadron.  It's a steroid.  And while she didn't get any muscles or suffer any 'roid rage, she didn't manage to get strong enough to breathe on her own for long either...a mere 24 hours and 50 minutes.

We worried for a long time after that.  It seemed like the experience nearly killed her.  She was completely worn out after that.  And it has taken virtually a month for her to get back to where she was breathing wise.  Her weight has been on the rise.  In truth, although they have skirted the issue and mentioned a second course of the Decadron, I have hesitated to move forward.

More than anything I wanted her to be stronger and gain more weight before we went that direction.  On top of that, Kenna hates laying on her back.  What does one have to do with the other?  Well, funny you should ask.

The bubble CPAP mostly has to be done while the baby is laying on the back.  My little fighter will position herself.  And I worry that she will be so mad laying on her back that this won't work.  Ever since she discovered the joy on being on her belly, it has been her comfort position.

Whenever she gets upset, it's onto her belly to calm down.  And it works.  Her sats go up.  Her breathing is better.  She is overall much happier.

Only there is no belly time on CPAP.

So, there's that.  And there are other worries.

The doctor explained that she probably won't be at any greater risk for cerebral palsy than she was before due to the use of Decadron.  And she is stronger, hopefully strong enough.  We shall see.

There is no other option.  We have to move forward and she needs help.  The Decadron will do that.

I made one condition of sorts.  I explained that there had been talk of raising her to the 30 calorie feeds.  And I wanted them to do that so she could gain some more weight before we did this.  The doctors agreed.  There were even smiles.  I guess they like that I'm on top of things.

I read to Kenna yesterday...Guess How Much I Love You?  With all my heart.

So, we're moving forward and taking a risk.  It's time.  She's tough.  And she has so many people thinking of her that I know she'll be just fine.

So, the bright side...

I find myself once again discussing something I truly hate discussing, but that is clearly somewhat troubling.  And this is as close as I'm going to get to discussing it.  Trust me.  So, if you want to hear more about my boobs and milk, keep reading.  If you are more like Sam and are sick to death of hearing about it, come back tomorrow when I'll have something new to discuss.

Remember from here on, you  are reading at your own peril.

So...I'm now taking fenugreek...on account of the fact that I already took two rounds of Reglan and aside from the fact that the side effects were rough...especially the rash...a third round could results in permanent Parkinson-like tremors.  And no way do I need to risk that. 

Hence the fenugreek.

It's all natural.  It's an herb.  And I can pick it up at GNC.  Cool.

Only I wasn't taking enough.  I have been increasing the dosage.  I am now up to 16 pills a day.  I don't do pills.  I suck at pills.  And now I'm choking down 16 a day.  And there are side effects.  Despite the fact that I've always considered myself pretty hale and hardy, I now seem to be getting every side effect from everything I take.

Now there could be a really bright side to this.  If this works, I'll gladly continue to subject myself to them.  I won't mind that I reek of maple syrup or that I'm constantly nauseous.  And shoot, between feeling nauseous and having sixteen pills floating around my stomach, I might not have much room for food.  And then I could lose some more weight.

That would be the best side effect ever.

I'm a little disappointed though.  I really wanted to be able to nurse Kenna for the first year.  It matters to me that she have the best start.  That's why I'm trying so hard.

And Sam's reaction?

Sam: You're doing the best you can.  If you dry up we cry for thirty minutes and move on.  We stock up on formula.  No big deal.

That's just the love and support I needed.  Nothing to feed my emotions too much.  Something to keep me headed in the right direction.  This is why we work...even when my boobs don't.

Somehow, Kenna will be fed.  That's already very important to her.  She begins to freak out when she doesn't get fed regularly.  I think we know which parent she gets that from.  Guilty.  And with this eating will come growth.

Grow, baby girl.  We're ready.

Dreamers make progress

It has been an incredibly busy week.

Sam started his big job.  And I caught up on all the books.  We had a bazillion deliveries.  And we managed to assemble everything that involved assembly.

We have been rocketing right along.

And this is no time to slow down.  In fact, I'm speeding up.  I discovered a pedometer app.  It tells me all kinds of cool things...like I'm walking farther than I thought I was every day.  And how fast I'm moving.  And how many steps I take while moving.  And how many calories I've burned while moving.  Stuff like that. 

It makes me feel super serious about getting fit.  This app even has a history feature on it.  So if I try to skip a walk or even a series of walks, I'll know.  The app will be all in my face.  I can't have that.  It's just easier to walk.

So, it finished raining and I'm going to go walking.  It's cold and threatens to rain again, but I'm going to go walking.  I am very nearly thirty-ten, so I need to go walking.  I promised myself that I wanted to look better at thirty-ten than I had at thirty.  I'm a little behind.  I'm thinking the whole pregnancy may have had something to do with that.  And Kenna was really considerate to come so early and give her mama a chance to lose all that weight before...thirty-ten.

The fitness isn't the only area that I'm working on.  Nope.  I have big plans to get more writing done.  I used to write five pages a day.  And that was when I was working full-time.  So there really is no excuse for not writing when I'm working from home full-time. 

And if I don't build in these habits now, they aren't going to get any easier when I'm trying to do everything I do with an infant.  I'm thinking I have about two months.  Maybe a little more.  I'm hoping that if I just keep plugging along, it will go a lot faster.  It's been almost two months so far.  I can barely believe it. 

There has been progress.  There will be even more.  Shoot, look how far Kenna has come.  I'm hoping I will soon be able to report that she is 2lbs.  And I'm hoping that we'll soon be able to report that she no longer needs respiratory assistance of any kind.  She's getting closer every day as they gradually wean down her ventilator settings. 

In the meantime, we'll just love her through this.  It's the easiest thing I have to do.

Dreamers give thanks

We have much to give thanks for.  So, I'm just going to get started.

Medically, Kenna is doing well.  As well as she can.  She had an eye exam yesterday that showed she had very immature eyes that needed more exams.  So she will be seen by the doctor weekly and bi-weekly until we have a definitive answer about the condition of her eyes and then...we'll see what needs to be done from there.

Also, they are talking about increasing the calories in her feeds to the max of 30 calories per feed.  This means that she should be gaining weight a little faster and she should experience more lung development.  That is what she needs.  She has premature lung disease. 

On the bright side, her transfusions went well Tuesday.  Both of them.  And she was finally able to eat Wednesday morning.  After 24 hours without a meal, she was eager to get back to it.  And...she was weighed.  Would you believe that she is now 830 grams?  That is 1lb 13.3 oz.  She's huge.  Okay, maybe not huge, but she's way bigger than she was.  My dream of her being 2lbs by the time she was 2 months old is probably going to be a reality.

Yay!

As if that isn't enough to be thankful for, Kenna received many presents this week.  Her bouncy arrived on Tuesday.  And on Wednesday, she received her car seat and stroller.  Yes, Gramma and Aunt Allison love her very much.

The big surprise was the package from the Team Abby Foundation, created after the founder's daughter was in the NICU for an extended period of time.  Her story can be found here.  They asked if they could send me a package and I was honored they thought of us.  Still, that package was more than I ever imagined.  There was a Team Abby reusable water bottle, a hand sanitizer, Kleenex, Chapsticks, two books: Guess How Much I Love You and Mr. Brown Can Moo Can You?, two blankets from Aden and Anais, and a bear.  It's pretty much everything a mommy and her baby need in the NICU.  So thoughtful. So very much appreciated.

We are blessed.  We are loved.  We are making it together.