Into the light of a dark black night

Happy Halloween!
Day 40 and 41

Weight-880 grams- back under two pounds....
Oxygen- back on the NIPPV (higher level of support)
Feeds- going well!
Disposition- Mysterious

And so it continues.  The past couple of days have been rough.  Again.

I feel like I could probably copy and paste from some earlier blog and you guys wouldn't even know.  We do this song and dance that much I feel.

Prudence kept having more and more episodes.  They increased her caffeine, they gave her the benefit of the doubt.  But this morning her labs showed the ugly foot print of an infection lurking somewhere in her tiny body.  So we are back on antibiotics.  And the higher level of C-Pap is working for now.  She has had fewer and fewer episodes since they switched her NIPPV.  So at least thats heading in the right direction without a breathing tube for now.  We never know what is on the horizon.

It can be so discouraging sometimes and sometimes you wanna beat your head against a wall because of the craziness of i
t all.  We never know what report to expect any more.  If you have had a good couple of days, you start getting nervous about what is getting ready to go wrong.  Serious kids, this is no joke.

However, all being said, its also been a fun couple of days in our family.  Halloween is easily one of my favorite holidays.  Not only are zombies my all time favorite, but I love the sweet innocence of a holiday that revolves around a little mischief and mystery all coated with pumpkiny sugary goodness.  Since becoming a mommy, I think it also reminds me that there are times for a bit of magic in life.  Dressing in something way different and going from house to house where sweet good natured people give you candy and big smiles....sounds plenty magical to me.




Lucy went trick or treating for the first time this year.  And she loved it.  At first we were a little nervous how she was going to feel about it because she can be quite shy.  But a few houses in and she was sold on this getting tons of cookies for very little work.

Then Juan and I went on a date (our dates now are getting to spend an hour at the NICU together).  People who say to have a strong marriage that monthly date nights are a must, well they must not have as much fun as Juan and I do being parents or enjoying our crazy life the way it is.  While we enjoy real dates from time to time, we can have the full impact of a date giggling together over something funny for ten minutes.  Every moment of our time together feels like a date.  Tonight, we dressed Prudence in her halloween tutu and had some fun with her.  She played along nicely and humored her parents.  And we had a blast.

Good Night and happy haunts from micropreemie world!

Believe me when I tell you....

Days 38 and 39

Weight- 900 grams (they had to take away my extra calories because of belly issues)

Oxygen- Starting trials of the nasal cannula with periods of rest on C-Pap in between

Disposition- Sweet!

So Prudence is doing well.  We started working on transitioning (slowly!) to a nasal cannula.  Yesterday she loved it.  But today, eh she is being more like her old Prudence self and having quite a few episodes while on the cannula.  So back on C-Pap for now.  We are also trying to sort out some of the residual belly problems she has from the air the cpap is forcing into her belly.  Hopefully that will get worked out.  

We had some great reports today.  She had her 1 month follow up on her cranial ultrasound today.  And it showed that the small bleed she had has completely resolved.  An eye doctor also came by today and evaluated Prudence.  A big complication with being premature is retinopathy of prematurity or ROP.  This happens when the babies are left on high levels of oxygen for a long time.  Prudence has been all over the place on the oxygen front, so we were a bit worried about this, but it was something kind of on the back burner.  However, the eye doc said that she has healthy mature looking eyes and we will reevaluate in 2 weeks.  Great news.  

Juan and I have been talking a lot  about how people approach us and things that irk us.  And we kind of came up with a list of things that bother us or we feel that if people knew about us, they would look at the situation differently.

Truths about being a Preemie Parent

1) AND MOST IMPORTANT- I love my child.  Period.  There is no second clause to that saying " I love my child even though...." or "I love my child despite...." .  There is nothing but the love.  A NICU momma who is clearly not a real preemie parent said to me one day "You can't love them the same because you can't bond and they don't feel like yours."  Now, honestly, most days right now, Prudence doesn't feel like mine.  She is being taken care of by some wonderful NICU momma's.  But she is my daughter and assuming I don't love her like I love Lucy is one way to make this mom very very angry.

2) You don't ever get used to the roller coaster.  Just when you think you can handle disappointing news pretty well, your Preemie will pop up with a new surprise, just to keep you on your toes.  A lot of days, you feel like you are being pushed to the brink of what a human being can handle, and somehow you end up surviving, but you never get used to or are prepared for those days.

3) We don't go home and sleep comfortably in our beds resting up for when baby does come home.  First of all, Preemie moms for the most part, are encouraged to pump breast milk for their child.  Around the clock.  Every 3 hours.  Ouch.  And its not like waking up with a newborn child to cuddle.  No no no.  You don't want to cuddle your pump.  And Preemie dads, wow guys you have a mess to deal with.  Juan is pretty much the glue holding it together.  He is my sounding board, Lucy's wrangler, and the sanity that keeps us going.  Thats a big job.  Then there is still all that house work you were going to do before baby came that now you have to do before baby comes home on top of everything else.  So there is no rest and relaxing before baby comes home. 

4) Preemie parents don't appreciate pity.  I remember a girl I worked with once that had a baby at 35 weeks.  Her baby was a healthy full term weight, but still spent a harrowing 4 hours in the NICU.  And I remember her fishing for sympathy about her premature 7lb something baby.  Not a true preemie parent.  I don't want you to tell me that you are so sorry this happened to me.  I will never be sorry that Prudence came into the world.  Don't give me pity eyes.  The pity and the sympathy does me no good.  

5)  Truly, everyday despite the roller coaster is a gift from God.  We have so many ups and downs, but every day that our Prudence grows stronger and more lovely is a blessing from God.  Even the bad set back kind of days that make us cringe.  We are learning more and more to truly cherish every moment with our girls.  

Sweet dreams from micropreemie world....

Look for the girl with the sun in her eyes and shes gone.......

Day 36 and 37

Weight- 900 grams- a drop but still 2lbs so we won't complain

Feeds- Finally adding back extra calories!  Pack on the pounds girl!

Oxygen- low settings on C-Pap- there is talk of a nasal cannula on the horizon

Disposition- determined

Prudence has been astounding us all with how well she is doing.  We are ever so slowly getting the little things down and laying the foundation for bigger things.  While some of it makes us nervous (mostly the nasal cannula- we have been teased by those words before) most of it is starting to make us cautiously excited.  We have our 1 month follow up cranial ultrasound tomorrow just to evaluate the small bleed they found earlier and making sure it is resolving.  Other than that, feed and grow Prudence is the name of the game.

She is so incredibly sweet.  Both of my girls are.  If you haven't met them in person, then you should really want to .  Prudence has this curious and spunky nature.  Nothing or nobody will stop her.  When we get to hold her, I always rejoice in this tiny strong body wiggling around until she finds her comfy spot on my chest.  When she is awake, her eyes roll towards any sound as if she is trying to figure it all out.  And Lucy.  Don't get me started about Lucy.  This girl has the ability to do something completely evil and then make me laugh about it.  They are both my heart, my loves, my joy.  And they teach me more every day about love and faith and joy.  

I had the joy of spending a good amount of time at a Halloween festival with my Lucy.  The fest was to support Capturing Hopes which is an amazing group of photographers who capture the NICU moments free of cost to parents.  These photographers have been trained to make pictures beautiful despite medical equipment, cpap masks, and what not.  It is such a blessing.

Lucy dressed up as Minnie Mouse.  And no I did not go buy a store bought costume.  I bought a little of this here and a little of that there and put together a one of a kind Minnie Mouse costume.  And I have to say, I think she was the cutest kid there.  I might be biased.  But I am probably right......

Lucy loves halloween and all that goes with it.  We got to do all sorts of art activities, sit at the halloween photo booth, and play a few halloween games.  She got to "trick or treat" to the different tables.  And I won a raffle for a basket for baby girl items.  All in all a fun day supporting a really great cause.

Of course here is my plug in for the charities that have affected us directly.  Services like Capturing Hopes or the Ronald McDonald House have been the biggest blessing to us.  People donating time, services, and what not to directly assist NICU families.  If any one is every going to donate money on the behalf of a preemie, call your local hospital, ask to speak to who is in charge of the NICU, and find out what charity programs support them before donating.  The big foundations like March of Dimes are fine, but the smaller more personal ones are what really aides the families of NICU babies and changes it all from a scary, lonely experience into something a bit more inviting and happy.  

It has been a wonderful weekend.  I finally feel like the new normal has set in.  Exhausting, emotional, and absolutely amazing.  Juan and I have learned so much about being a family, being parents, and being married.  

We're Sgt. Peppers one and only lonely hearts club band

Day 33, 34, and 35
Weight- 930 grams ( and seriously, we have been at 2lbs 1oz for three days... the 1000grams is teasing me)
Feeds- Increasing steadily
Oxygen- Weaning settings, now on regular C-Pap instead of the NIPPV (Woohoo)
Disposition- Stinker

There are a lot of things we say we will never do in our life.

Example-"I will never wear booty shorts"

And I promise I am 99% sure that I will never do that (more for your benefit than mine). But on a serious note, I never thought I'd say what I am getting ready to say.....

I want to be a stay at home mom.

There.  Proud headstrong do-it-all-and-bake-cookies-too Brenna said it.  I always said I would never ever want to quit nursing.  That I loved my job too much and worked much too hard to get here to give it up.  Then, I found something I loved more.  My children.  I always told Juan that my one condition for ever wanting to quit nursing was if we had a special needs child ( Juan has 2 special needs siblings so the topic came up).  I never thought it would happen....

And while Prudence is doing well, she definitely has some specialized needs and will for a while.  It like God heard me and said...well ok Brenna here you go...a reason to quit.  Except I can't totally quit either.  So rock and a hard place.

The hard part of it all is being a nurse really.  For those of you who aren't nurses I have to tell you the truth.  When I put on my scrubs and walk into work, I feel like I am no longer viewed as a person.  People  don't care if I pee, eat, drink, sit down, or even you know, have a conversation not involving their loved one.  I am the caretaker who is lending myself entirely to you and your family.  Nurses are known for not taking care of themselves.  And most of us shrug our shoulders.  Part of the territory.

BUT......

I am a person right now.  I can't stop being a person because I am in scrubs.  Not right now.  And I do know what the patients family members are experiencing.  I can't tell them that.  I won't tell them that because I am afraid it would make them think I am distracted and not capable.  But I am capable.  I just wish that more people realized that we aren't nurses 24/7.  At some point, our lives over lap with our work.  Being a NICU parent, I try so hard to be as sweet as pie to Prudence's NICU mommies.  And I think the world of those ladies and gents that are taking care of my sweetie.  I just wish others would lend me the same courtesy while I am at work.

 Snuggled up before mommy had to return to work

That being said, our family has some wonderful things to be looking forward to.
Prudence is doing remarkably well!  Yeah I know we have said such things before but maybe now you can see what I mean about that whole being drug around by a roller coaster.... We never know what to expect when we talk to our NICU mommies.... but thats just par for the course.

They are working on weaning her cpap slowly with intentions to get her to a nasal cannula by early next week.  Apnea is still there but she is able to self recover 9 times out of 10.  Still no signs of infection and overall we are doing really well.

This next week is Lucy's first trick or treating halloween.  I am super excited for her and can't wait to dress her up and take her out.  She is going to be either a lady bug fairy or Minnie Mouse.  I have kind of an interchangeable costume so it will just depend on what she will wear on the given day.  

And of course two weeks from now is big girls 2nd birthday!  WHICH MEANS....

I WILL HAVE MY FAMILY IN THE SAME ROOM FOR THE FIRST TIME EVER!  

Lucy hasn't met Prudence yet.  She knows the name, that there is a ton of milk for the mythical Prudence, that this being has a bedroom in our house, and that grandma is crocheting a blanket for said "Poodence".  But I cannot wait for her to see her baby sister.  It makes my mothers heart so happy knowing that we all will be together finally.  

Goodnight and sweet dreams from the Mythical Prudence.....

Fixing a hole in the ocean

Day 31 and 32
Weight- 2lbs!!!!!!!!
Oxygen- High settings on CPAP
Feeds- Finally restarted
Disposition- Octopus

So if you haven't figured it out yet,  I really like the Beatles.  Like a lot.  For fun see if you can figure out which songs my posts are titled after.......

And yes, I named my children after Beatles songs.  Judge me if you will.  I feel I am justified in choosing good old fashioned names over so many peoples decision to make some new confangled name that has never been seen or heard so their child will be unique, blah blah blah.

Lucy's name really came up when someone said to me, well you always loved the show "I Love Lucy" and you know there is the Beatles song "Lucy in the sky with diamonds".  It just made sense.  And Lucy is definitely a Lucy.

Prudence came about a bit differently.  I love the name Prudence.  Most people, unfortunately, still do not.  My grandmother even asked me if she could call her by her middle name, Clara, instead.  But Prudence chose her name.  While I was pregnant, we had first settled on Penelope Lane (Penny Lane) but that didn't feel right. I liked Sadie, but you don't name your child after a song with the word "sexy" in the title.  I liked Molly but unfortunately Juan does not and it also happens to be the new slang for some sort of drug that Miley Cyrus must like.

Sigh.

So we had gone outside the realm of the Beatles which literally broke my heart and we were going to name her Rosalind Clara Perez (Rosie for short).  One morning I was driving home from work and "Dear Prudence" came on my ipod.  And she started dancing.  Not just a wiggle.  I mean River dancing.  Geeze kid.  But that was it.  I walked in and told Juan that she wanted to be called Prudence.

Once you meet her, you see she chose wisely.  It just fits her.  Such a big name for such an independent  spunky little thing.

She runs the show.

The past few days with Miss Prudence have been wonderful.  Beautiful.  She has had very few apnea episodes and has even been turned down a smidge on her C-Pap settings.  Her chest x-ray was also much improved.

Prudence-1 Pneumonia-0

We have her follow up cranial ultrasound on Sunday.  Hopefully it will show that the bleed has resolved.  She is now 30 weeks gestational which is still what we really use to measure her age.  In a few weeks if all is well, they will start allowing more holding and hopefully preliminary nippling (allowing her to try to suck on things to strengthen her reflex).  Until then hopefully we are in a holding pattern of sorts to get her to grow and get stronger.

Rigby with one of Prudence's blankets to get used to her smell

Bad Daddy's Burger Bar opened in Winston......of course Juan had to go right away

Good night from a micropreemie big sister!

They say its your birthday....

Day 30- HAPPY ONE MONTH BIRTHDAY 

Weight- 880 grams

Disposition- Divalicious..........

Things a NICU mother never wants to hear;

1) "We ALMOST had to do chest compressions"

2) "Oh they had 16 episodes overnight"

3) "We had to bag her to get her oxygen saturations up"

4) " She stopped tolerating her feeds"

5) " No poops in a long while"

  

I am sure the list goes on and on.  But this brings me to my next point.  Some nurses just know how to talk to families.  Some know how to relay bad news without it sounding horrible.  That is why we have our favorite NICU mommas.  They can tell us things without it sounding as bad.  Now sometimes it can't be avoided.  Bad news is sometimes just a fact of life and sometimes there is no way to sugar coat it.  Sometimes its just bad.  

So last night Prudence had a big mack attack.  The episode to end all episodes.  We weren't there and we didn't get a phone call.  However Prudence became totally unresponsive.  Even to hard core stimulation.  She dropped her oxygen saturations way down and her heart rate way down and just did not wake up.  They almost did have to do chest compressions and they had to bag her to get her oxygen levels up because she would just not breathe.  

So we did walk in to getting told a few things.....not a fun night. 

However this morning it turns out that we found a cause.  An easily correctable cause.  Her feeding tube had somehow traveled back up her esophagus and had pretty much doubled in half on itself.  The pressure in her esophagus had caused her to have some pretty massive episodes because she had a vagal response.  Once they pulled that out and replaced it, she had 1 episode.  That she recovered from herself...Phew.......

Other than that things are  great.  They stopped her feeds for now while she is on the C-pap at higher settings, but we are being hopeful that they will resstart in the morning and praise the lord there is NO SIGN OF INFECTION anywhere!  CAN I GET AN AMEN!  With a little luck and a lot of prayer, we are over the worst of it and can see the tiny speck of light at the end of our still very long tunnel.

It just goes to show you.  Friday we are loving the time with her, rejoicing in how well she was doing and singing God's praises for the miracles her performs in her life.  Friday evening, we were on our knees pleading and praying for God to wrap his arms around our tiny daughter a thousand times over and have mercy on her poor body.  And this morning, we are again singing and joyful again.

I will never ride a roller coaster again once we leave here.  

We were lucky enough to have two dear friends visit.  They were NICU parents to twins and hearing how well their boys are doing and getting advice and just getting to talk about NICU things with people like its a normal thing seemed...I dunno....humanizing.  

Love and best birthday wishes from micropreemie world

Here comes the sun....

Day 28 and 29

Weight- Still 880 grams but we didn't lose so thats good
Disposition- Strong!

Our baby girl is off the ventilator!  Praise the LORD!

Yesterday they extubated and we were sure that she was going to have the tube put right back in.  Instead she came off and went to C-Pap and then from there they were able to wean down her settings a bit.  Her oxygenation is actually better than it has been and she is fairly stable.  The doctor said her chest x-ray looks better than it did on the ventilator.

So many many prayers answered.

It turns out that the episodes where Prudence was letting the ventilator do all the work were caused by reflux.  Not an uncommon thing to happen but in preemies their lungs cannot compete with the pressure in the esophagus sometimes causing apnea.  Last night they had to stop her feeds and will reassess in the morning.  Thats another hard part about the c-pap.  It forces air into her lungs but a portion of that also goes into her tiny tiny belly.  So it causes her to reflux even worse.  But the good news is still

WE ARE NOT ON A VENTILATOR!!!!

In other news, I head back to work tomorrow evening.  Apparently my demeanor has shown as much this week.  I really don't know how to feel because on one side I love my job.  I love nursing.  Since I moved to the trauma ICU, I have found a renewed joy in what I do.  But more and more I am afraid that my love for my job is something I will have to sacrifice because I love my children infinitely more and its becoming apparent that my children need me more.

Also, I have this great ability (usually) to remain emotionally uninvolved.  When I say this it doesn't mean I don't have compassion.  But I can shut off my home life when I am at work.  And I can shut off my work life when I am home.  Basically I compartmentalize my life.  It works out well because emotions don't get in the way of work.  However I am certain this is a different situation.  People will ask about Prudence.  People know.  And while its great for them to ask, if she is having a bad day and they ask, I know I will lose it.  So we will see how it goes.  I really want just to be super busy at work so no one has time to ask me anything.  So I don't have time to feel anything.

If anybody has any suggestions about surviving the return to work with a micropreemie still in the NICU, please let me know.  It will all be worth it when I get those 8 weeks off with her when she comes home, but until then....

Goodnight and much love from micropreemie world....

You say you want a revolution.....

Day 26 and 27.....

Weight- 1lb 15 oz!  1 oz away from 2lbs!
Disposition- fighter!

Today is the day.  The s*** or get off the pot kind of day......

The good news.  Prudence is improving.  Her oxygen levels have been much more stable in the past 2 days.  And she is on lower settings on her ventilator and they switched her from SIMV to Pressure support ventilation yesterday afternoon!  Awesome!  Her chest x-ray is starting to show improvement even though it does still indicate pneumonia being present.  This new antibiotic is working wonderfully.

But today is the last day of it.   And Prudence has a breathing tube now that is growing out not only serratia, but also a new kind of bacteria (I would tell you what kind but I don't know because our doctor has a really thick accent and I haven't heard anyone else identify it).  EEEK!  So the breathing tube she has in now has the potential to reinfect her and could possibly just send us back to where we were 2 weeks ago.


So the revolutionary idea of the day you might ask..... REMOVE THE NASTY TUBE FROM MY DAUGHTERS THROAT!

No I am not mad.  Just ready for a change for the better.

So the plan for the day is to remove the tube and try her out on the higher c-pap settings on the NIPPV (non invasive positive pressure ventilation) and then see if we can wean her off of that.  If we can't wean her down or if she gets worse.....a brand new shiny clean from bacteria breathing tube will go back down.  But we are hoping and praying and screaming for that not to happen.

A sad part of working in the hospital business is that a lot of times our treatments to help can also really hurt sometimes.  In Prudence's case, the original reintubation when she was just over a week old introduced the serratia bacteria.  The doctors chose not to treat it at the time.  Since then her lungs have been a wreck.  But then the antibiotics that are used to treat some of these bugs also have some negative side effects which is why they didn't rush to start them from the first time she had a positive culture for bacteria.

Hindsight is 20/20.

The echocardiogram to check her heart showed something rather surprising as well.  No holes or anything.  Instead she has a flattening of the septum between her right and left ventricle.  Which means....pulmonary hypertension.  Scary to hear at first.  It means the pressure on the right side of her heart is higher than what it should be which could be flooding her lungs a bit.  EEK!  However, as everything goes in micropreemie world, its not crazy for them to hear.  So we will monitor.  And if it starts to get worse, they can start her on medicine...usually Viagra.  Yep.  My tiny under two pound daughter could have viagra.  Wow.

I know I throw a lot of medical jargon in this.  But I know that for us, there is comfort in the medicine of it.  Its a language Juan and I know how to speak and we speak it pretty well.  I have learned from trying to explain Prudence to our family that there is a big difference in understanding and not which I didn't before.  Some people fail to see the seriousness of the situation.  Others get scared at the mention of a PIV (which is an IV).  I find comfort in knowing more and think that if we arm ourselves with knowledge of the situation, we can move forward better.


On a different note, there was a baby down the way from Prudence that passed away yesterday.  The most sorrowful noise I have ever heard in my life came from the room.  I cannot fathom the depth of that mother's pain right now.  And the calm quite that filled the unit after her cries had left was unnerving.  Juan and I spent the night in mourning for that family.  While a great many things are possible because of modern medicine, there are truly some things that are in the hands of God.  We pray that God is wrapping his loving arms around that family today and lending them all of the strength they need to walk forward.  We pray that they have healing and hope renewed someday.  Nothing can replace their loss but hopefully with time, they will find peace.

Prayers love and hope from micropreemie world.......

How do I feel at the end of the day?

Day 23, 24, 25
Weight- 850 grams- roughly 1lb 14 oz!

It has been intense.  The kind of up and down intense that makes you throw up a little in your mouth....
Roller coaster.....

Prudence is still growing serratia from the cultures from her breathing tube.  Clinically we are looking better.  The secretions are thinning out and not as goopy.  We were finally able to wean the oxygen down a bit but in a scary twist we are extubating tomorrow and going to "see" how she does.  Those words make you feel kinda like your baby is being taken care of by Dr. Frankenstein.....I was assured that she will be closely monitored and that they will be prepared to reintubate quickly if need be.

As part of her lung issues, we are doing an echocardiogram.   This is going to check and see if there are any mechanical issues in her heart.  If there are any issues it means that blood could be backing up and congesting her lungs.  Which might be a part of the problem with her oxygenation.   Hopefully not though because at this point it would mean it needs to either shut on its own or have surgery.

We are starting to pack on the grams. Yay!  Tonight she weighs 1 lb and 14 oz and at 2 lbs 2 oz she can wear clothes. They added in iron and MCT oil to add in as much calories as we can.

There has been lots of kangaroo care time, visit from Auntie Megan, and so much more.  Its been a scary and unsure time because of all that is going on with her lungs.  However, Prudence is a strong feisty little warrior woman.  Sorry its such a compact post but its been a long long day!

I read the news today...oh boy.....

Day 22

Weight- 730 grams...down again
Oxygen- Ventilator settings are up again
Feeds- going well but no poops today....
Disposition- WILD WOMAN

Today was another topsy turvy Hurricane Prudence ride.

This morning was a rare event.  I had a couple hours where Juan was at work, Lucy was at grandma's and I was having some me time here at home.  I took my time and was going to just take an easy morning before heading over to the hospital for some Prudence time.  Then I called just to see how she was.

My favorite NICU momma answered the phone and told me how Prudence was up again on her ventilator settings.  Still having a ton of secretions that had to be cleared from her tube.

There goes Brenna time and Mommy mode kicked into gear.

In a sort of frantic mode, I got ready as quick as I humanly could and got out to the hospital.  When I got there, Prudence was being Prudence.  Feisty, little stink bug.

So the deal.  Prudence has only had a handful of doses of the new antibiotic.  We still have time to see if its going to work.  And as the day progressed, respiratory therapy reported to me that the secretions were thinning out some and that there wasn't quite as much.  Phew.

However, Prudence has a heart murmur.  She has had it for several days now.  Today it was louder.  This could be a number of things, most concerning of all being a PDA or patent ductus arteriouses (I hope I spelled that right).  And unfortunately due to her being over two weeks old now, if thats the case medication will not work to close it.  So if thats the case, it would either be the waiting game to see if it would shut on its on or surgery.  Which means a transfer to Baptist.  Which means bye-bye to my favorite NICU mommies.  

The way to test for this is called an echocardiogram.  At this time, Prudence's doctor does not want to test for this.  They want to see if the antibiotics will help the infection and if the hole in her heart will shut on its own.  And for now she isn't terribly symptomatic of this hole being open in her heart.

Not horrible news.
Still leaves my momma's heart in limbo.

And at this point I honestly don't know what to say.  I have no words and my heart is heavy.  Worst of all is I sit alone in the NICU most days.  The nurses up there are becoming my friends.  The ones who talk to me and carry on friendly exchanges.

But then Juan and I are finding out how evident it is that it takes a trial to test a friendship, and some of ours are not doing so hot.

But in better news- I found this in my neighbors yard

And I went into a dream.....

DAY 21- HAPPY 3 WEEKS BABY GIRL!
Weight- 790 grams- thats 1 lb 11.9oz....WOOT
Disposition- Celebratory

Pneumonia sucks... a big one.

Today was the pivotal lab draw/chest x-ray/talk about the tube out day.  Annnnnnnd the verdict is.....

Well complicated.  Her chest x-ray did look improved after the lasix.  Which is great.  But she is still have a ton of thick secretions.  Prudence is already up higher on her ventilator settings to maintain her oxygenation.  And on a routine check of breathing tube cultures we found an increased amount of bacteria in her tube instead of less- But WE WERE ON ANTIBIOTICS!!!  WHAT?!?!

So the plan is to continue diuretics so they are helping some.  And to switch to a new antibiotic.  They are going to check a culture of her breathing tube on Sunday evening and then we will try to do a breathing trial on Monday to see if she would fly off the ventilator on NIPPV.  

And thats the only big change.  It sucks.  

But if thats the only big change, we will take it and be glad.   We have a lot of other really great things going for us.  

We have this beautiful baby girl who for the most part is acting either her age or a bit older.  She just has micropreemie lungs.  

Lately I am finding that I am more irritable with complainers.  People go complaining on and on about their day in and day out.   It is so easy to get caught up in the day to day and forget how precious all this really is.  The day before I had Prudence, I was talking on the phone to my dad.  I was upset because of all the projects that needed to be done around my house that weren't getting done.  I kept thinking, this will never be finished before the baby gets here and then it will just never get done once she gets here.  The next day Prudence came into the world and I quickly learned how different my priorities should have been.  

We are so grateful for the good news lately that most of the bad news doesn't upset us as much.  

Our sweet Prudence doesn't have strong lungs.  She does not have healthy lungs and there is a chance she never will have healthy lungs.  

But miraculously, everything else is doing well so far.  Isn't that far better to concentrate on?  Juan and I cannot change her lung situation no matter what we do.  That is up to the wisdom of Doctors and the mercy of God.  

So before you start complaining again about something mundane, something trivial or small, remember that there are people around you every day, people dealing with cancer, illness, or other things much bigger than what they can handle.  And they choose to step out and live instead of sulk and cry.  If they can do it, so can we.  

Afternoon at the Autumn Leaves festival!

Love and prayers from the micropreemie family!