Henry Update

This past Monday, Joe and I had a family conference with Dr. DeJonge, a neonatologist, to discuss Henry's health.  Overall, he feels Henry has made terrific progress.  His eating had briefly plateaued, but has recently shown improvement.  In fact, yesterday he took his full feed, 70 ML, twice!  In order to come home, he needs to take 75 ML every feeding for 48 hours.  It's still a struggle for him, though, so in a couple weeks, if Henry still depends on his feeding tube, Dr. DeJonge would consider sending him home with it, and we would gavage any milk he doesn't drink on his own.  We're hopeful that won't be necessary, though it'd be so good to have him home!

Also, we're grateful that Henry had his PICC line, a long-term IV, removed yesterday.  Another small step and a nice indication of his progress. 

The current debate within Henry's medical team is deciding when to fix his hernias.  The surgery could be done before he's discharged, or later as an outpatient procedure.  We'll keep you posted.  In the meantime, we enjoy watching Henry grow as he becomes more alert and active.  Many nurses have told us how unusual it is for an omphalocele baby to be so pleasant.  He's such a great little guy!

 

Makeover Monday Continued

As our family has grown, we've realized our blog has also needed to expand.  "Claire's Corner" worked for a season of life, but now we're excited to introduce a new edition of our blog: "Home Grown".  We're still rather green in this wide world of blogging, so we might tweak the site as we explore our options, but for now, I hope you enjoy the changes we've made. 

Makeover Monday

Here we have Henry who sported an "all-natural" look this weekend after he tugged at his feeding tube and had it removed briefly.  

Isn't he handsome?  Setting trends in the NICU.  

Next, we have Claire, who shows off her stylish new haircut as she says "cheese" with a mouth full of food.  Absolutely lovely! 

And that wraps up the fashion show portion of Makeover Monday.  Stay tuned to see what else gets a much needed makeover today.

1 Hour, 3 Outfits

Henry's initial ensemble for the evening...until I changed his diaper, and well, you can guess what happened at that point.

Take Two.

It's time to eat, and unfortunately this outfit falls victim to some spit up.

Finally, a shirt he can shine in.  Hopefully, he'll keep it clean for at least a few hours!

Mama Said...

Over the past week, one song keeps coming to mind: "Mama said there'd be days like this; there'll be days like this my mama said."  My mom never actually said such things, but the song continues to resurface.  While I love my life, this particular season is one in which I have learned we need to simply survive.  There's no use trying to thrive - it's just too hard.  It's like trying to sprint a marathon - not a healthy endeavor for even the most advanced runners. For both our emotional and physical health, we need to treat Henry's healing process as more of a marathon, one in which we must pace ourselves.  He's doing well.  He's happy and healthy.  But his progress is slow, and so we must be patient or we run the risk of collapsing at the five mile marker. 

Today, I met with the Occupational Therapist who is helping Henry with his eating.  It's not that he can't nurse; it's just that his tiny abdomen has been through a traumatic surgery, and it's difficult for him to consume his full feeding.  He routinely takes about half his milk, and the rest is tube fed.  The OT taught me some stretches to do with him to lengthen his abdomen and make more room for his feedings.  She also showed me how to work a couple acupressure points, such as his outer thigh, to aid in his digestion.  Hopefully, these things will help, but ultimately it's up to Henry to simply figure it out.  Please pray that he'll do so sooner rather than later. 

Please pray for us as a family, too.  It has been extremely trying for us, and frankly, we're tired.  Claire does as well as can be expected, but spending 5 hours at the hospital every day is draining for Joe and me, let alone a 2 year old.  And though Joe serves as an amazing source of strength for our family, balancing all this with both his work and master's classes is, I imagine, a heavy load.  And me, well, a good cry always helps :).  I'm sure many of you can relate.  Anyway, please pray for us.  Thank you!  Thank you!

Little Mommy

Look at what I stumbled upon this afternoon...

I love our daughter, and I admire how she loves her brother.  I already see in her a true mother's heart as she cares for Henry.  She's constantly trying to hand him toys, books, diapers - anything she thinks he may like - as she says "Here go, Henry".  I adore how she says "Bless you, Henry" when he sneezes, and has to say goodbye to him before leaving his room.  Though she would love to diaper, feed and cuddle her brother, instead she cares for her baby dolls and furry friends - and the nurses keep her well stocked on itty bitty diapers for each of them.  So cute! 

A Gallery of Grandparents