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!