Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Saturday, November 20, 2010

New stuff

During this time of such crazy mommy emotions, I've neglected to mention all of the amazing things happening for J-O-E-L!!! 

We went for an appointment on Veteran's Day, and Dr. Ricker was so pleased with Joel's progress off the ventilator that he made new orders for Joel to be off the vent during all waking hours!  We are so pleased with this news.  It allows us to have more freedom, and our schedule has cleared up too.  J can come in the kitchen with me when I'm cooking dinner.  He can come in the bathroom with me when I'm putting on my make-up....normal.  Key word is normal.  Even though the winter "scare" has gotten me a little undertow, having a cordless baby is absolutely wonderful.  I'm so proud of him.  He's been on these new orders for 9 days now, and he's handling it great!

We got connected to a feeding team out of Mary Bridge, a combination of J's G.I. doc, our dietician, an occupational therapist, Diana, who we worked with as an inpatient, and Jennifer Sarver, (who we LOVE!!!,) our speech therapist.  We've been working so hard at home on Joel's feeding trials, and they're a total pain in the much preparation for 30 seconds of show, followed by barfing, or gagging, and that pretty much sums it up.  I've been eating cold dinners for a solid month, (as us typical mommies do,) and although there are nights when I want to just skip it, we don't.  I've never been so proud as I was at that appointment.  Joel has a new habit of hating his therapies.  We have 4 in-home therapies a week, and the moment those women walk in the door, Joel rolls over, telling us, "Nope, I'm not doing work today." 
At the feeding appointment, Joel did a solid hour of work.  It was awesome!!!  They introduced new instruments for us to use, switching from a spoon to a "dip," and considering the amount of food he was actually taking by mouth, he'll be getting more from dipping.  Our hard work has payed off.

Saturday, November 13, 2010


I am having more and more days where I am happy.  Happy about my wonderfully blessed role as a mommy, happy with my marriage, happy, happy, happy....

and then there are nights like tonight, when Joel was throwing a fit, and desatting, and the neb and the suction were getting caught on the crib bar, and the feeding stand was in the way of the vent stand, and the vent circuit got condensation inside it and beeped continuously.....I just want to pick up my baby.  I screamed, "I HATE CORDS!  I HATE CORDS!," like a child would.  Seriously.  It felt great temporarily, but I just want to cry tonight.

People ask how Joel is doing, how we are doing, and I always answer the same.  He's great.  We're great.  Home is great.  That is true.  We are great.  Home is great.  Joel is great.  But the fact is that marriage is hard with extra stress in it.  The mommy job is neverending as it is, and it's worse when you have someone in your home for 16 hours a day notice every parenting screw-up you make.  It's tough to have breast-feeding mommies as friends, when I so desperately wanted to nurse my last baby and wasn't able to.  It's frustrating to have people ask me in public how many children I have, and then get a confused look when I tell them that we have an infant, but he's home with a nurse.

This is a tough time.  We are going through a tough time.  I have so many people around me, and I've never felt so lonely in my entire life.

Monday, November 8, 2010

Seven hours off the vent yesterday.  Life is good. :)

Sunday, November 7, 2010

Change of Heart?

Love those big teefers, bud!

J originally liked the bumbo, and then went through a long protest period where he screamed everytime we tried putting him in, he apparently changed his mind.  Maybe it's not so bad afterall!

Tuesday, November 2, 2010

Eat it up, buddy!

Feeding.  Again.  I'm sure there will be lots of posting about food.  It's not a fun topic in this house.  We're so far away from our goal, and we're just getting started on a long journey.  Here's how the last few days have gone:

Friday: Took 3 bites of formula & rice cereal.  Gagged.  Done.
Saturday: 4 bites.  Gagged.  Barfed.  Done.
Sunday: Chaotic, skipped dinner.
Monday: 2 Bites, Gagged, Barfed.  Cried.  Done.
Tonight:  3 decent sized bites, no gagging.  Ended on a good note :)

We're still in the beginning stages, but I've gotten a lot of encouragement from others who have gone through this, and I'm determined not to give him a rest.  If he's not sick, he has to try food.  His schedule will involve eating.  We're re-arranging dinner around him, because he needs it.  THIS WILL PAY OFF someday....but for the record, this is very trying.  I am not a patient person, and I want to push him to take more each day.  This is not that easy.  This is not a picu battle, it's a nicu battle.....slow and steady wins the race!