A New Kind of Normal

Before leaving the hospital, I confessed to our nurse that I was nervous to take Henry home.  Over the course of his 38 day stay, our new routine, while initially difficult, began to feel normal, even comfortable.  The nurse looked at me and said, "Jen, being in a hospital should never be normal.  You'll take Henry home and create a new kind of normal for you and your family."  Of course, she was right. 

Henry has been home for 10 days now, and so here we are, creating our new kind of normal.  While we have loved having him home, it isn't without its challenges.  Our new normal consists of putting in feeding tubes and checking incisions.  Our new normal means packing a stethoscope in his diaper bag.  Our new normal includes many, many appointments with doctors and specialists - at least one a day, but sometimes more.  But our new normal also includes a lot of love and a great deal of fun as we learn the joys of becoming a family of four.

Yesterday I spoke with a mother who also has a child that was born with an omphalocele.  She said her daughter was 6 months old before she really "rounded the corner" in terms of her healing and feeding.  We talked about the struggles and frustrations, the uphill battle it seems to be at times, but we also talked about how much we love our children and how they are truly miracles.  In fact, as I type this, I look down at Henry and sure enough, he has a great big grin on his face, just for me.  I can't imagine my life without him, and he is, without question, worth all extra effort.

Well, enough jabbering - let's get to some pictures! 

Our happy boy

Free from his feeding tube - on a trial basis

Brother and sister bonding

Fresh from the bathtub

A walk to Riverside Park



From the Top

It strikes me that there might be a few new people following our blog recently, and for those of you who are unfamiliar with our story over the last 6 months, you'll find at the bottom of this post, in small letters, a link that says "Labels: Baby Boy".  You can click on that, and it will  bring up previous posts about Henry.  They'll be in reverse order, because despite my meager efforts, I'm not very computer savvy...so that's the best I can do :)



A Home Run!

                                  

Father's Day will never be the same. 

Each year on Valentine's Day we reminisce about Claire's homecoming, and now we will, in years to come, certainly remember Father's Day as the day we brought our little Henry home. 

Henry is dressed to impress in his "Later Gator" t-shirt, plaid shorts and

and his sandals, which are more fashionable than practical. 

Ready or not - here he comes!

And of course, we can't forget to honor our own Fathers. 

After all, it's their day, too!

...and Grandpa Dan Rosen in absentia :)

We love each of you! 

Thanks for your presence and your handiwork in our lives.

Yesterday

It seems like just yesterday...

...we were visiting Henry in the hospital.

...Henry was hanging with Nurse Brenda,

...and making cute crafts with Nurse Rhonda. 

 ...and Claire was strolling around the hospital, particularly the gift shop,

like she owned the place.  

It seems like just yesterday, I suppose, because it was just yesterday. 

But I'm happy to announce Henry has come home, and so our time in room 301 of the Helen DeVos Children's Hospital is now just a memory.  Oddly enough, it was sad to go, but we are eager to begin this new chapter of life with all of us under the same roof once again.  And I have to say, I love having two kids at home.  I'm learning the old adage, "the more, the merrier" has a certain ring of truth to it. 

I plan on posting Henry's homecoming pictures in the near future, but much will depend on whether or not I'm able to coordinate nap time :0)

What's up, Doc?

Henry's hernia surgery went very well today, though the surgeon reported that the hernias were more serious than they had anticipated.  Apparently, some of his intestine had slipped through one of the hernias and become twisted.  This was probably uncomfortable for Henry, and it could have caused significant problems if gone uncorrected.  So we're grateful to have this behind us and be one step closer to his homecoming.

Also, another milestone in little Henry's life -- Genesis 17:10.  Look it up.

Upcoming Surgery

Quick Update: Henry will be having surgery tomorrow afternoon to repair his hernias.  While it's a routine procedure, both his hernias are rather large, so his recovery could take a little longer than usual.  This should be a breeze, though, compared to what he went through a few weeks ago. 
Also, no guarantees, but there is a chance Henry could come home later this week - though he would, most certainly, still have his feeding tube.  We'll find out more following the surgery, and we'll certainly keep you posted. 

One Month Old

 A birthday gift for Henry.

Though I'm sure he'd want us to enjoy it on his behalf. 

Three Generations

Grandma Rosen and Claire keep entertained with a water bottle.

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