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!