But from everlasting to everlasting the LORD's love is with those who fear him and his righteousness with their children's children . . . Psalm 103:17

Thursday, September 27, 2012

Thursday, September 27

I (Gavin) tried to come up with a unique post title that we haven't used before, but decided two minutes later it wasn't worth my brain effort.  Two minutes wasted . . . .

We didn't post yesterday, so there's quite a bit to catch up on regarding the quints.  

Seth:  Let's start with the precious little guy that needs a mighty work of the Lord done on his lungs.  He's still doing quite a bit better on the nitric oxide treatment for the pulmonary hypertension.  Yesterday they did another echocardiogram that showed the the hypertension is gone, so they have started to wean the nitric oxide down, hoping to be off it early next week.  

Unfortunately, a side effect of the gas has been that his PDA (artery in his heart that should be closed) is open and large.  The good part of the PDA report is that the blood is flowing just one way and not both, which is worse.  The bad part is that the PDA is contributing again to fluid on the lungs.  He will get another echocardiogram on Monday to determine if the PDA has closed with the weaning of the nitric oxide.  If not, we're not sure what will happen.  Having a surgery like Gracie did would be the desired thing to do if his lungs were not so sick and compromised already.  They have to move the left lung out of the way when doing the ligation surgery, so Seth would likely not do well with that.  Please pray that the PDA will close and Seth will not need surgery!  

The doctor said that he has seen many babies with Seth's lung problem and, barring a very significant improvement, is expecting that he will be going home on a ventilator through a tracheostomy (ventilator tube to his trachea through the neck).  Our prayer is that God will do a mighty work in his body and heal his lungs quickly and effectively.  He is able!  He did comment on how healthy Seth is overall.  His lungs are his ONLY problem!  He is so healthy in all other aspects, unlike so many other babies with significant lung disease.  The doctor said that is really incredible that the other four are doing so well without serious problems of our own.  

An aside:  I am reminded of a comment sever that elementary school age kids aren't old enough to be a witness to God and Christ.  Aside from the proof to the contrary I've seen in Isaac's life, our little babies in the NICU who are learning how to breathe are being used as a witness to the goodness, grace and love of our great God!  We're never too young or too old.
We can't wait to finally hold little Seth!

Marcie:  Marcie has graduated to her own open air crib!  Three down, two to go!  She is still on the vapotherm machine.  She's had a little trouble with bradycardia events (heart rate dropping when she forgets to breathe), so they've put her flow back up to five liters per minute from three, but overall she continues to do well.  Grandma was holding her today and she just got so comfortable and happy she just decided it was easier not to breathe.  She'll learn.
Marcie finally wearing clothes

Grace:  Grace is doing well also.  She's gaining weight consistently and at least trying to get onto the weight charts.  She's on the CPAP machine, but are thinking that she might be able to move to the vapotherm in a week, plus or minus.  
Carrie spending time with Gracie

Will and David:  Will is now on "the blender" with David  This is the next step down from the vapotherm cannula.  So now he and David are both just getting moist air through their nasal cannula with oxygen mixed in as needed.  For the most part they have been on room air (21% oxygen) but every once in a while they need a little O2 boost.  Three days ago, we started their "nipple trials."  I had to laugh when, in all seriousness, I heard the nurses use that term.  It sounds like our babies are trying out for some kind of kiddie olympics-- "Attention, all participants in the first heat of nipple trials, please proceed to bay six of the NICU."  Sorry, I just found it amusing.  

Seriously, though, it is the first time they've been given a bottle since up till now they've only been getting fed through a tube directly into their stomach through their mouth.  They haven't really tasted the milk before Monday.  Both Will and David did great from the start, so that was encouraging.  Last night, Carrie tried breastfeeding both of them (the second try) and they did a wonderful job.  Big steps.  It's funny how we're celebrating all these little things that I have always taken for granted-- that's life in the NICU.
Carrie really wanted Will's fat legs on the record
Grandma holding Will this afternoon

Poll time:  Who does David look like?

I think that's most of the news about the small kids.  The big one?  He's doing pretty well.  We would appreciate prayer for what to do about school for him.  He is quite bored in his current class.  The work is not at all challenging and tends to be more first grade or kindergarten-ish sometimes.  His homework tonight was: 70,___,72  Fill in the missing blank.  We were a bit incredulous.  He is testing this week to get into the GATE (Gifted And Talented Edumucation) program, but are wondering about the wisdom of bumping him up to third grade, which is where he belongs age-wise.

Carrie and I are doing well, I would say.  Now that Carrie is going to the NICU twice a day, things are a bit more challenging and she is not getting the rest she needs.  We'll have to figure a better schedule out, but we know it's going to just keep changing, especially as some kids are home and some are in the hospital.  It could be as soon as 3 weeks from now when David and or Will come home, according to the doctor!  

I've been keeping myself busy in the mornings and sometimes longer at the Center here doing a variety of things: servicing and repairing lawn mowers, chainsaws, backhoes, trucks, Bobcats, building shelves, etc, etc.   I'm very happy to get my hands dirty and exercise the other parts of my brain.  

If you've read this far, I'm proud of you.  I'm done, though.  Good night!  Thanks for your love and prayers!


Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

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