there will be a show tonight....

Days 89-101

I can hardly believe it's been over 100 days on this rather, ahem, stressful journey.  Some days it feels like just yesterday they were telling us to prepare ourselves for a world that would take our emotions and run wild with them. In the course of one day I have felt relieved tired scared hopeless happy sad and worried. And that's before the morning coffee is even made.

Other days it feels like this is life.  That this is how it's always been.  That we have sang this song and danced this jig since the beginning of time.

But 100 days of Prudence amazing us, of our faith growing and changing as God proves daily that he is listening and answering our prayers and 100 days of our patience growing daily.

So since I posted, Prudence has done some amazing leaps and really only a couple of things remain unresolved.  Her eyes are still not fully matured and she will require follow up as an outpatient for her retinopathy.

She did move up to the intermediate nursery on Christmas night to make room for other tiny babies.  She also has been doing fairly well with her feedings.  She gets a tablespoon of rice cereal per ounce of milk to help with her reflux but at this point it is like putting a bandaid over a cut that needs stitches.  She still has  a few episodes a day and we have restarted the countdown to home several times.

Outside of Prudence, we are still having to deal with some  big boy stuff.  FAMILY and friends days have let us down so much in the past few weeks that it has been kind of hard.  Still the blessings far outweigh the bad and we keep on moving forward.  We have so many wonderful people reaching out to us.  Some we haven't seen in years.  Some we have never even met.  Juan and I were talking just last night how the good Lord has used these past few months to test our patience reliance and obedience.  We haven't always responded in ways that were good but we are learning and growing everyday in this walk.  We have  been reminded time and time again by friends of faith that it is in his timing that Prudence will be healed and home and happy with us.


In the meantime I have aged.  I grow a bit older every time her heart slows and he  breathing stops.  A mother's curse and blessing is how much you die for your kids.  It takes a mother, any mother, to understand that.  It has nothing to do with having a sick child or any of that..  I die for Lucy as much as I do  for Prudence.  I've given up countless hours of sleep worrying, cried tears that felt like would never end and have  sacrificed my body my career and even my own sanity for my girls.  And you moms know what I mean. We are our own silent club of sufferers that have to give ourselves daily to our children over our wants desires and needs.  We choose between showers or sleep.  Between breakfast or getting your kid ready to go somewhere.  It's just kind of crazy but we all do this willingly and desire to do it again several times over.

So we keep on trucking, keep on moving, and keep on sacrificing for our girls.  Send us prayers and happy thoughts.  We are super excited/nervous/feel like scared rookie parents tonight because we are staying with her in the parenting rooms.... gee imagine getting to be a parent to such a blessing....

Honey pie, you are making me crazy......

Days 78 thru 88

As many of you know, we have had quite a few set backs so let me go back to the beginning.  Last Tuesday they began giving Prudence a diuretic to pull excess fluid from her body.  This was in effort to wean off her oxygen.  Friday, Prudence was still having some episodes but her oxygen was almost weaned all the way off.  She took most of her bottles fine, although with a few, she was real sluggish and disinterested.
So Friday night I went to work and called to check on her just after midnight.  And when I called, the night shift nurse promptly handed the phone to the nurse practitioner.

Never a good sign.

So what happened.

While Prudence was eating her midnight bottle she started to sputter a bit.  The nurse sat her up to burp her and Prudence spit up a good deal of her feeds and started dropping her oxygen saturations.  They put her back in the bed but she was already turning blue.  And then her heart stopped.

Her
Heart
Stopped.

So they had to do a minute of chest compressions and mechanical ventilation.  She finally came around and pinked back up.  Thankfully they did not need to put a breathing tube back in or anything like that. But that is enough to scare the ever living you know what out of this momma.  I left work and Juan rose out of the depths of his sleepcoma to come to the hospital and sit with our poor little girl.

Today we finally got some answers.  Prudence has severe reflux.  No this is not your "colicky" infant.  No this is not the stuff that you treat with some zantac.  This will literally stop her heart.  Prudence has trouble keeping her food in her stomach and as soon as she lays down everything decides to come back up.  When it does, it collapses her weak and scarred airway.  So Prudence stops breathing.  Which leads to her heart slowing.

The only real fix is for Prudence to get bigger.  She is not big enough for surgery (we still only weigh 4lbs 3oz) and like I said, this isn't the type of reflux that can be fixed with any medication.  We are thickening her feeds to see if that will help weigh the food down a bit more and it also means we can give her smaller volumes to get the same caloric content.  Hopefully we will see a big improvement in reflux episodes now that we know exactly how severe the problem is.

And all of this has lead to Juan and I realizing how badly we need to work on putting the girls first.  So I am going on leave early to be with Prudence and learn how to take care of my special needs little girl.
 
Overall, she is doing better.  She did aspirate or breathe in her refluxed milk.  Her chest x-rays look a bit better.  Blood work is improving daily and she did get a blood transfusion.  All we can do is that God will continue to see us through and be with our little sweetie pie as we travel down this road.

There are many times I have prayed in the past few days.  Prayed for this pain to be put on me.  For my little darling to be miraculously healed.  But when you see this girl smile.  I mean.  Geeze guys.  I am almost certain Prudence is the cause of global warming when she smiles.

So maybe, just maybe, through it all, she is growing into the strongest tiny person I know.  And I hope and pray that one day, when all this is just a distant dream, that she will continue to grow, and learn, and be as happy as she is even when all the odds are working against her.

Oh please say to me

Day 70, 71,72, 73,74,75,76, & 77 ( forgive me I've been busy)

So its been a very busy week.  I worked quite a few days in a row and have barely had time to come up for air.  In fact, I have actually made myself a bit sick by not resting and hydrating myself enough in the past week.

Prudence is doing remarkably well.  She now weighs 3lbs 10oz.  She put on about half a pound in a week.  She had a follow up cranial ultrasound which was completely unremarkable and so far is doing great.  Her episodes are mostly if not totally related to reflux and she is being weaned so very slowly off her oxygen.  She is starting to get chubby cheeks and little wrinkles of chub on her arms and legs.  The biggest gift is that Prudence passed a huge milestone when she finally left her isolette behind and is now in a big girl crib!  Its a gift that literally brought tears to my eyes.  She is also taking in at least half her feeds now via bottle.  Sometimes more if she gets really cranky about it.  It has been a hard week, but a blessed week as well.

That being said, I think its time for me to address something that I know everyone is curious about, but never asks.  While at work, someone I worked with seldom found out I had a preemie in the NICU.  Upon finding out, the first words out of her mouth were

"So do they know how severe her neurological damage is yet?"

DO WHAT LADY????

So I gave polite answers, smiled and on the inside I was screaming and crying and punching said lady in the face.  That was probably the rudest most callous thing I have yet to hear from a person when they find out about Prudence.

With that though, I understand some people have questions about what Prudence will look like long term.  Heck, Juan and I have a ton of questions about what Prudence will look like long term.  So here is what I know.

Micropreemies fall into the category of "extremely" premature.  Roughly, those born between 23 and 25 weeks.  Most like, according to statistics, Prudence will have at the very least some mild disabilities. They range from autism, mild cerebral palsy, and go on up the ladder to severe deficits.  Right now, neurologically speaking, Prudence is interacting with her environment, picking up cues, and developing at an expected rate.  They put up pictures for stimulation in her crib, and the nurses interact with her when they can while she is awake and we aren't there.  So answer the that question is we don't know the long term, but we have every reason to hope that she will have a very mild deficit if any at all.

There is a lot of reading on quality of life for babies born at the earliest weeks.  And being ICU nurses, Juan and I understand that quality of life is an extremely important topic of discussion.  However, there was never any doubt in our mind of what to do for our baby.  She was born pink and screaming at the top of her lungs.  She was ventilated by a machine for most of her first month of life.  She opened her eyes and looked at us with what my dad calls the "knowing look".  She has endured more suffering, pain and discomfort than most adults have.  But now being so close to the other side of all that suffering, she is the sunrise after a dark night.

The future of our child is really unclear.  She might have a great many problems ahead, she might skip through the rest of her child hood like all this was a bad dream.  We don't know.  Thing is, we really don't care.  Seriously.  Not one bit.

So ask the questions, don't be politically correct.  Juan and I will answer them if we can.  But know that in the end, the love for your child knows no limits, and whatever issues our sweet girl will have, we will meet it with a loving faithful God guiding us through as he has been from the beginning.

Sweet dreams and warm holiday wishes from Micropreemie world!

Happy Thanksgiving

Days 65, 66, 67, 68 & 69

There are so many many many blessings to be thankful for this fantastic day.

Prudence weighs just over 3lbs.  She is also starting to take bottles much better and working on big girl stuff.  Her legs are doing fantastically well with physical therapy as well.  Over all things are looking on the up and up.  She could actually move to the intermediate side but everyone in NIC 1 likes Prudence so much that they are hesitant.  She has been in her spot for 10 weeks now and I am scared to imagine Prudence anywhere else.  The only other room I have ever seen her in was an operating room.  Crazy!

This week we did do a bit of an itty bitty back slide.  So many people know of ROP or retinopathy of prematurity.  Well....unfortunately Prudence has developed a very mild form of that.  So that means more eye exams.  Those are brutal.  It also means that if it doesn't resolve until after we leave the hospital that we could have another specialist on board.  Sigh.

Annnnnnd she also got her two month vaccines.

And don't get me started on vaccines causing autism.  I think that is horse you know what.  And even if it isn't, I won't risk her life by not vaccinating her against things like the whooping cough.  I understand how vaccines aren't always necessary...but seriously folks.  Ask a real doctor if there are any real studies about vaccines and autism and the answer is no.  There isn't.  Period.

Anywho, overall we are doing well.  Juan and I are starting to abandon hope on her coming home for Christmas and thats just something we are going to have to contend with.  Of course, it is the season for miracles.

Thanksgiving has turned into something of a joke.  When I was a kid, there was something magical about the day of turkey and pumpkin pie.  Of cousins getting together and playing all day and adults strewn all over the house cooking/watching movies/ talking/drinking.  Nothing was open except the movie theater.  And now before thanksgiving meals have hardly had time to hit our stomachs, we are already talking about the shopping that will be done right after the meal.  Its depressing.

Today for me was about family.  It was about love and time together and taking time to be thankful for all our blessings.  I feel like I was robbed of that a bit by peoples discontentment with taking one full day off to be with family and say forget the outside world for right now.

I am thankful for my husband.  The moments I share with him are worth the world.  The laughs, the tears and everything in between, he is the pillar of strength, love and humility that keeps me standing in shaky times.

I am thankful for my Lucy.  She has the ability to put a smile on almost anybody's face.  She is a handful and wonderfully frustrating but at the end of the day, I cannot be more grateful that I was blessed with such a delightful, fun, and happy daughter.







I am thankful for my Prudence.  She has taught me more than I ever knew about myself and continues to teach me new lessons in patience, trust, love and faithfulness every single day.  It is so rewarding to watch her grow into the tiny person she will become.  I thank God every minute/hour/day for molding my sweet baby day by day, even outside my womb.

I am thankful for my parents.  I don't always say it like I should.  I could not do this without you guys.  Of all the support thats been offered, you are the only two people who have actually walked this with Juan and I almost step by step.  We can never thank you guys enough.

Sorry I seem to ramble but I guess I really want people to stop with the greed.  Close the stores on thanksgiving and send people home to their families.  And remember its not about TV's, toys, great deals or waiting in line for the thrill of it.  We are supposed to take this time to be thankful for the real blessings, the people in our lives.  Take one day off of the year and just be thankful.

Goodnight and sweet dreams from micropreemie world.......

The walrus is Paul.....

Days 61,62,63 and 64

Happy Birthday to me!  Smiling for daddy!

This week has been full of blessings.  Prudence turned two months old.  Oh my goodness.  TWO MONTHS!  We have come so very far in this amazing journey.  I remember this tiny frail being laying in the isolette while I peered in from my stretcher as the nurse practitioner told us the in's and out's of the NICU and what was going on with Prudence.  I took in very little of what was being said looking in with wide eyed wonder at my sweet baby.  How far we have come.  Today I looked at her feet and wondered when they had gotten so big!  She has almost doubled her birth weight and is starting to get the first traces of baby chub on her cheeks and arms and legs.

Prudence was allowed to start taking small amounts from a bottle or attempt to breastfeed this week too!  Breast feeding has been a bit of a bust because as soon as I get her to latch on, she usually falls asleep.  Its the warm snuggly mommy thing that throws a wrench in that plan.  So instead tonight for the first time ever in my life I fed my child from a bottle.  I never bottle fed Lucy because if she was with me, she got a boob (I am sure thats a bit too much for some folks, but I never forced you to read this anyways)  So the nurse mommy on tonight walked me through bottle feeding a preemie and how to manage little things and what to look for to check for tolerance.  Example, if your baby turns grey or blue, its time to stop bottle feeding.  Prudence took the 1/2 ounce like a champ!  And she burps like a big girl too!

You guys, it was awesome......

So now we grow and wait on her to get stronger.

I had the grand opportunity to catch up with a friend from college today as well.  It was so nice to meet up with this wonderful lady and talk about how much has changed in the past 4 years!  I lost contact with most of my friends from college.  I forgot how much I loved listening to her talk.  The way she tells a story makes me want to be sitting around a camp fire on a cool night with a cup of coffee in my hand!  Her and her husband are expecting their first wee one mid 2014 and I couldn't be more excited!  I certainly hope we don't go another 4 years without seeing each other!

With the holidays and Christmas just around the corner, Juan and I got a jump start on shopping for the girls.  We also worked on Prudence's room decorating and cleaning and starting to actually plan on what we have to get done before she gets home since we are over halfway through this journey now!  All in all, things are going pretty well....

Goodnight from not-so-micro-anymore preemie world

And with a love like that, you know you should be glad

Grumpy baby

Day 57, 58, 59, and 60

Weight- 2lbs 10 oz
Feeds- Full feeds at 7ml with MCT oil!
Oxygen- 2Liters Nasal Cannula
Disposition- Chilled



Its so hard to go back 8 weeks ago and visualize where all this started.  It seems like so long ago that we were being admitted to the NICU.  She was on a ventilator and we were being told all the stuff that didn't seem real until now.  The roller coaster ride.  The good days and bad days.

They tried to warn us.

The reason for reminiscing?  Well there was a 25 weeker admitted yesterday.  Today I heard one of the nurse practitioners warning them.  The same song and dance we got oh so long ago.  At almost 60 days in the NICU, I feel more like I'm entering my home away from home than an ICU.  The nurses are fantastic and really make a difference in a huge way.  They don't only care for sick babies, they nurse broken hearted mommies, strong tough daddies and worried grandparents too.  They nurse unknowing siblings who are in sensory overload when they step back there to see baby sister/brother.  They nurse whole families back to health.

Really NICU nurses are angels.  I am not sure they all know exactly what they do for families.  They save my babies life a hundred times a day in a thousand small ways and they have cared for us all along.  Amazing.

One of the stunning pictures taken by Capturing Hopes Photography

Then you have the wonderful people who donate time and services.  Capturing Hopes photography and the Ronald McDonald Room at Forsyth have been a godsend.  The photography allows me to come in and be a mommy and pose with my baby.  Missed opportunities from pregnancy turn into sweet pictures to remember ever micro step of our journey.  The Ronald McDonald House offers a place of refuge.  Free snacks and drinks, a playroom for tots, a nice clean and seldom used bathroom, and a quiet room to go and collect your thoughts- all without leaving the NICU.

Skin to skin time with mommy makes for a happy
baby

At almost 60 days, Juan and I have learned what it means to truly be grateful for what we have been given, not mourn the loss of what we think we deserve.  There have been two babies up there to pass away while we were just down the hallway.  There have been babies who have to have fluid drawn off their brains weekly, there are babies who get transported to Baptist for heart surgery, bowel surgery or any other number of things.  We are so lucky.  Prudence is healthy.  Small but healthy.  She still has issues with not being able to tolerate a bolus feeding.  Thats ok.  She still can't be weaned off a nasal cannula.  Thats ok.  Her brain bleed resolved.  Her eyes are healthy and mature.  She poops on her own for the most part.  We are LUCKY.  God has been merciful to us.  He might change the course tomorrow.  But so far, he has answered our prayers and carried us along in His loving hands.

So please, remember that its ok to complain.  Its ok to talk about hardships and groan at the difficult times you are walking through.  But when thats over, please stop and be grateful for the life you have been given, no matter how bad it may seem.  Juan and I take nothing for granted now.


Prudence is growing into an amazing, inspirational and joyous little lady.  We are so very happy to be the parents of such a remarkable little lady.

Mother Superior jump the gun

Days 53-56

Weight-  A WHOLE 1 POUND ABOVE MY BIRTH WEIGHT!  2lbs 7oz
Oxygen- 1.25 liters nasal cannula
Disposition- Sunny with a chance of clouds...

Prudence has come so very very far.  Physical therapy started splinting her legs today with a neat contraption that was made out of an armboard, some guaze, tape and some really soft straps.  Several times a day as much as she tolerates, she straps on her little surfboard looking thing to help reposition her legs and train her hips to hold her legs a certain way.  I was fortunate enough to meet the physical therapist and see what she does.  Luckily, Prudence is still really flexible and her joints haven't become rigid.  Therefore, according to her therapist, she should be easy to train back into correct positioning.  This will most likely be something that we have to follow up on outside of the hospital.

Lucy had her two year check up too.....
Absolutely perfect!

They tried to condense her feeds down today.  In order for Prudence to take bottles, she first has to be able to tolerate taking a feed in a shorter amount of time.  Right now, Prudence is having her feeds run continuously around the clock to her stomach because the larger volumes cause her to have horrible reflux.  We tried to run her feeds over two hours today and then off for an hour.  Well she did not tolerate that at all.  She had several reflux related episodes that were very hard for her to recover from.  Think of choking on your own spit up and not being able to figure it out to keep breathing.  Thats what happens.

So we had to back off and also abort the plan to turn down the flow on her nasal cannula just because she was having such a hard time recovering from the episodes.  Sigh.

The bright side though is that the set backs are fewer and less severe than they were just 4 weeks ago.  Its so amazing to think in just 4 weeks we can go from praying that she not go back on the ventilator to now getting frustrated when we can't dial back the flow on her nasal cannula.  My sweetheart has climbed mountains in such a short amount of time.

 So yesterday, I turned 27.  I feel about 50.  Since having Lucy and Prudence, I have grown up so much.  And I observe my peers.  Some are not married, living it up in big cities, doing things like going to bars, concerts, and living life for themselves.  Some are engaged and planning their big days.  Some are newlyweds who take extravagant trips for their first anniversary and make their life seem like an episode of "Lifestyles of the Rich and Famous."  Some are enduring their first sleepless nights as new parents to their first child and smiling through the process.  Very few have walked the road Juan and I are on right now and quite frankly I start to wonder if I am really old enough to be dealing with these things.  Nowadays, people are allowed to stay in a state of suspended  youth.  Be carefree and wild longer.

My idea of a wild night is one where Juan and I manage to stay awake through half of "The Princess Bride" which we bought for $4.75 at Target.  Woohoo.

Home is where my heart is.  My heart is fused with Juan's and together we have two beautiful girls, a cozy home, and dreams of what our family will get to do together one day.  Dreams of being young parents who get to enjoy our children to the fullest and one day, be young enough to enjoy playing with our grandchildren before our hip replacements.  Most important, I am glad that I never fell pray to the glamour of the jetsetter married life.  The extravagant ways of most couples of my generation.  Instead, I have invested all of that into something much more fulfilling and lasting.  I am not condemning you if you are into all that.  But I do urge everyone to never feel pressured by the new norms.

I am doing what I was meant to do.  I was called to motherhood.  And its one call I am glad I answered!

Faith, trust, and pixie dust wishes from micropreemie world!

 (PS I have watched way too much Tinker Bell in the past few months)

She's so heavy....

Days 50, 51, and 52

Weight- 2lbs 6 oz
Oxygen- 1.75 liters nasal cannula!
Diaper preference- Pampers preemie size
Disposition- Stink bug

Prudence is doing so well.  We have increased feeds again and we are hoping and a praying that soon the doctors will let us start trying to "nipple" or try to bottle/breast feed her soon.  She is so funny to watch now.  She has definitely grown up in the past few weeks.  Prudence will now lay there wide awake looking around and taking her blurry world in.  And she LOVES LOVES LOVES her paci.  Oh my goodness.  You think the world was going to end if she doesn't get it.  Today she actually worked her nasal cannula into her mouth to try to suck on it and was horribly disappointed when it didn't satisfy her needs.

I think we are hopefully headed into the "feeding and growing" stage.  Hopefully we have the worst of it behind us.  But you never know.

Lucy is also warming up to little sister.  Today Lucy came in while I was doing kangaroo care with Prudence and she started giggling and becoming interested in "Poodence".


In the past few weeks I have been chewing over something in my mind.  Whether or not to bring it up.  At first I was angry.  Then I was upset.  Then I felt guilty.  But I am the kind of person that thinks certain things just need to be said.  So, I am gonna say it.

Not all preemies are created equal.  So stop assuming that.

There I said it.  And here is why.  People don't educate themselves.  Any baby born before 36 weeks is a preemie.  As I mentioned earlier, one of my best friends had a 35 weeker recently.  And he went home with them when they were discharged.  Did he need extra monitoring?  Yes.  Is he a preemie? Yes.  So the general public will happily box him and Prudence together and put a cute bow on it.  However, they are two very different preemies.  (And luckily my friend knows the difference but its easy to use as an example)

He will probably have no long term complications from his early arrival.  Sure he might have to work a bit harder starting out than some full term babies.  But his lungs work, he can eat, and overall he is in good health.  Babies born about 5 weeks earlier than him, well they need help with the feeding and probably a little lung help.  Babies born 10 weeks earlier than him, well they just are in no way ready to live in this world.

SO please.  Stop assuming that since you spent 2 days in the NICU, that you know.  Don't think because you spent a month in the NICU, that you know.  Really when they were born doesn't matter.  The weeks don't matter.  A full term mom can have a baby that is born sicker than a 30 week baby.  And until you have watched your baby struggle to breath, to lay there not breathing for half a minute which seems like eternity.  When you use the words "grey is not a pretty color for your skin sweet heart" because you have gotten used to her apnea episodes.  Until you have had to see and deal with some pretty unimaginable things, then you don't know.  Not all preemies just need to gain some weight and then go home.  So please stop assuming and listen when NICU mommies talk.  You might just gain some perspective.

Cellophane flowers of yellow and green

Days 45,46,47, 48, and 49 (Wow its been a crazy busy week)

Weight- 2lbs 5oz now!  Growing up so big!

Disposition-fashionable

This has been the busiest and best week yet.  Let me start from the top.

Prudence finally got to wear clothes!  Oh my goodness you have no idea how excited I am that I can finally see my daughter wearing cute little girl clothes! Part of the reason they make us wait until over 1000 grams is her temperature regulation.  Babies have to be a certain weight before they start trying to get them to regulate their own temperature.  She used to wear a temperature probe at all times and the bed adjusted its temperature based on hers.  Now her bed is set on one temperature and we monitor hers every four hours to make sure she is not getting too hot or too cold.  So far she is doing well.  

Also the PICC line came out.  She finished up her antibiotics and has been doing well for the most part.  She is still having apnea episodes.  A few are ones she is fixing on her own, a few are ones that she has to get a spanking for.  But for the most part, she is bright eyed and bushy tailed.  Hopefully in the next few days we can start trying to feed her a small amount of food orally!  Thats a big step on the way to home!  And a huge shout out to all the NICU mommy's that have cared for Prudence.  You guys are my heros.  Almost everyone of you is in my thoughts and prayers since I feel as many of you are almost family at this point.  I am sure Prudence thinks she has a lot of aunts out there.  

We had a photo shoot as well with Capturing Hopes, the NICU photography organization that provides free professional photography for NICU parents.  We were asked to allow our photo session to be a part of a story that the local paper is doing.  And we couldn't have been happier to participate.  We can't wait to read the story of these wonderful people doing such a wonderful service.

"Awww! Poodence"

On the home front, Lucy has turned 2!!!  So today for the first time ever, I had both of my girls in the same room at once.  It was such a beautiful happy moment in time.  Of course it was short lived since Lucy is such a busy body.  But knowing that Lucy has seen Prudence in person makes my heart happy.  Today we did a very small birthday party and made Lucy the center of attention.  She loved all her presents and her tinker bell tutu that Auntie Megan made for her.  It was such a wonderful day.   Our sweet baby girl is growing up before our eyes and becoming a little lady.   

What bath time is complete without lady bug headband time........

I also got medically cleared by my doctor and finally got answers to some of my questions.  My doctor determined that my early delivery was because of a placental abruption.  Basically, my placenta was tearing away from the uterus and Prudence and I could have bled to death if left unattended. We are lucky on so many levels that I can only thank God for the blessings he has given us.  Now I am being worked up for clotting disorders because my doctor thinks that a clot might have precipitated the abruption.  But the even better news...I can still have more children in the future!  I know people are thinking...how can you think of such things with such a handful in these two little whippersnappers already.  I have always wanted a decent size family though and even if I could not have any more biological children, Juan and I would have sought to grow our family eventually.

Eating the icing on the birthday cake!

Mostly we have just been trying to keep our heads above water still.  Our schedule is so jam packed, especially since I returned to work.  The impending holidays and the constant struggle to balance all this on one jam packed tray is just exhausting.  Sigh.                                                                The rewards are worth it.  So many fantastic memories from this week.  

Good night and sweet fairy birthday dreams from micropreemie world!

Take a sad song and make it better....

Silly pre-yawn face

Day 42, 43, and 44

Weight- 950 grams
Oxygen- NASAL CANNULA!
Feeds- back to full volume finally!
Disposition- so comfy!

These past couple of days have been a God send.  Friday was a pretty uneventful day.  Prudence got tanked up with some blood and they decided to go ahead and do a full course of antibiotics.  So they put a PICC line in again and that was that.

Saturday, mid afternoon, update time from the NICU turned into the most incredible few moments.  Prudence had worked off her C-Pap which is nothing new.  What was new was, she didn't need it.  No alarms went off.  She did fine.

Little turd.

So they switched her to a nasal cannula and just decided to see how she would do.

And right now at about 36 hours, she is still on the nasal cannula.

Only 1 episode that she didn't fix herself and needed help on.

And she now takes her pacifier that has been dipped in a bit of sugar water and sucks on it like its going to go out of style any second.  This has been, the most beautiful glorious and uplifting time.  I have cried many times, all tears of absolute joy and happiness and I have lifted my hands up to praise God for his miracles more than once.

In other joyous news, my best friend also celebrated the birth of her first son!  We are so happy this little boy has made it safely into this world and cannot wait to meet him!

And so, the world keeps spinning, Prudence keeps growing, and joy continues to grow.  We are preparing for Lucy's birthday later this week.  And mine the next.  And Thanksgiving.  And Christmas.  We work, we sleep a tad, and we get housework done.  We spend time with Lucy and then we spend time with Prudence.  Its such a ridiculously busy season of our lives and yet its moving by so fast.  Over 6 weeks now in the NICU and I cannot imagine not going there.  I love some of the people we have had the pleasure to get to know and every now and then it occurs to me that I could work with these little miracles.  Its amazing to watch them grow and heal from such a rocky start and I have such a great respect for these angels in blue scrubs and what they do.  Of course, I come back to realize that I have no clue how to handle sick babies.........
Oh well

Good night and wishes of a thousand sugar paci's from micropreemie world....

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....