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.