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.