Full Circle

After 47 days in the NICU, Jonathan is home with us this weekend!  We were surprised on Friday afternoon when the nurses told us that Jonathan could go home with us.  He had so many tests run on Friday to make that happen and our little man was worn out.  But we arrived home at 8:00pm on Friday with Jonathan. 

It took us 47 days to go full circle--flying to the hospital early that Sunday morning in September until arriving back home with our son the end of October.  Wow.  We are incredibly grateful for the way the Lord sustained us during this time, for the invaluable help of our family, and the countless prayers of you!

Jonathan is doing well.  He's been eating and sleeping and listening to the voices of those who love him.  We will be trying to find a new routine around our house in the days ahead.  Meanwhile, it's been such a joy to have him home and hold him close.

The Two Step

Sorry it's been a while since we posted a blog!  There just isn't enough time in the day right now.

But, today I'm sitting here by little man's bed while he sleeps and I have a few minutes to spare.  The "Two Step" is a dance (at least I think it is, not much of a dancer here!).  I think they should call these weeks in NICU the "Two Step" since it ends up being two steps forward and two steps backward.  Things can change daily, or from morning to afternoon.

We've had multiple days where Jeremy came in the morning, had a nice visit, and things had significantly changed by the time I arrived in the afternoon.  It's a great test of faith and endurance; and, yet, I still feel that I have much to learn in these areas.

God has done much to sustain us during this season in the NICU.  Even on the hardest of days, emotionally, I know that He hears my prayers (and the countless others) and He desires that I trust Him.  I have thought many times about several men of faith in the Word who cry out to God in honest prayer (some even in sack cloth and ashes) because He alone is God and Who else is there to cry out to?!  No one else has the power to heal or change our circumstances or sustain us, so why wouldn't I continue to cry out to Him.

He is good.  And one day "beauty will rise" from all these ashes (great song from Steven Curtis Chapman).  I look forward to that day, whether it's tomorrow or one day the other side of eternity!

Oh Happy Day!

Today was a GREAT day!  This was the first day we could hold Jonathan in our arms, without the pillow.  I was even able to nurse him for a few minutes, and he did great.  Jonathan was totally wide-eyed at the new position and at being so close to mom and dad.  He's been on his belly since birth (with just a few days otherwise).  That's 46 days.  I've been itching to get my hands on him and hold him close.  Though it makes me very nervous still, with his back still healing and the size of his head due to the fluid, it was so sweet today to hold him and look at him and hold him.  I kept thinking that he feels he's coming home--home to mom's arms!!  Here are few pictures celebrating today...

Five Weeks and Counting

This week finished out week 5 for Jonathan in the NICU.  He celebrated his one month birthday!  In many ways, it feels like a blur with all of the running back and forth to the hospital and spending time at home with Noah, Grace, and Ruth.  Jonathan continues to heal -- laying on his belly!  He did move up to a "big boy crib" in the NICU.  The surgeon came in this week and cleaned off the scab, the dead skin, and yucky stuff.  Now the nurses have orders to keep wet gauze on it, letting it dry out, and taking it off again by pulling up dead skin with the gauze, only to repeat the process again every 12 hours.  This process keeps the old cleaned up and stimulates the new skin growth.  Not sure how long we will be doing this, but probably a few more days.  Everyone keeps telling us that the layer of skin forming underneath looks good, medically speaking.  We haven't seen it yet, because we haven't been there for the changing of the gauze! 

Noah and Grace visited his bedside again today and were thrilled to touch Jonathan's hands and feet!!  Here are a few pictures...

Leaking Fluids

We've all dealt with "leaking fluids" -- cars leak fluid, airplanes do too (though we hope we aren't flying at the time!), diapers leak fluid, roofs in need of repair leak fluid, noses even leak fluid!  But, generally speaking, heads and backs do not leak fluid -- unless you are a myelo kid.  (Short for myelomeningocele, the official term of Jonathan's birth defect.) 

This weekend had some challenges for us.  The neurosurgeon seemed totally unphased; the parents were quite anxious.  I guess it does bring a lot of peace of mind, though, when your surgeon is calm and declares that things are still progressing as expected!  Both Jonathan's back and head started "leaking fluid" this weekend.  First, his back was leaking where the scab started pulling away from the edges.  (At this point, we will spare you the pictures that we've taken of his back.)  The surgeon tells us that the leaking is superficial at this point, but it will slow down the healing process.  This process seems to drag on, but we knew this would be a long haul.  Jonathan's lesion was significant in size.  We'll continue to take one day at a time.

So, today his head was leaking a little bit when I arrived.  The incision just won't heal completely and fuse, so when the surgeon came by today he wanted to put in a couple of stitches to close it up.  Mind you, I'm holding Jonathan on a pillow at this point.  The surgeon just ordered the sutures right there on the spot, cleaned up, put on his "surgeon's gloves" and stitched Jonathan's head right there on my lap!!  Yes, I did have to look away several times.  Jonathan woke up long enough to cry and then fell right back asleep. 

He is already much more tolerant of pain that I ever will be.  And he will be such a tough little guy -- a real fighter!  This is a whole new world, absolutely.  You never know what each day will hold.

Bye to Bisquick

Many of you may not know that we have lived overseas in Central Asia for the past 12 years.  In fact, we met overseas and lived in the States together just long enough to get through the process to get back to work in Central Asia.  Our first three children were born overseas and think that our crazy lives are "normal."

We have called the city of Bisquick our home for the past four years.  As we came back to the States to take care of Jonathan's needs, we knew that this could be the end of a wonderful chapter of our family life.  Thankfully, we've had several months to think about this and do some grieving.  How do you say "goodbye" to a place that is so dear?

We now know, with certainty, that we will not be going back to Bisquick.  In fact, we know that God is "relocating" us to the States in order to best attend to Jonathan's needs.  We have seen God do so many amazing things in our time in Bisquick, humbled by the privilege that He let us be a small part of drawing a people to Himself.  We know, in our heads, that God will direct our steps and provide another place here where we can work for Him.  However, that doesn't always make it easy for our hearts as we face a season of transition.  We are expectant.  The slate is blank before us, in a way that we experience but a few times in life.

As our family grieves and looks ahead and seeks to trust Him as we wait for His provision--with work, a place to live, and countless other details--please continue to pray for us.  Whatever He does, it will be good!  So, we pray and wait.  Meanwhile, we continue to take care of our children, love them, teach them to trust God in ALL things.  Jonathan's journey is also our journey because God has called us to this road and will reestablish our steps in a new place.

Good Days, Bad Days

Jonathan had some really great days and was able to spend some good time on his back.  The surgeon warned us that his back would most likely open back up as he rubbed the glue off of the wound on his back.  Sure enough, when we went to the hospital yesterday his back had a spot on it.  (So glad the surgeon had told us just what we'd see!)  Today, it opened some more after they removed the rest of the glue.  They will be cleaning it and monitoring it to make sure the dead skin is removed so that the new skin can grow.  Yes, this is difficult to watch when it's your baby boy going through this process.  But he's doing great and proving to be a real fighter.  He seems to enjoy hanging out on his belly.  He's going to love it when he can come home and be around all the fun and excitement of home.  Here are a few pictures from the last few days!

Milestones...

Thursday and Friday have been VERY big days for little Jonathan!  On Thursday, he increased his number of bottle feeds.  And they started rotating his head every few hours.  (I know he was happy to be facing a different direction for a change.  He's been healing from the shunt surgery--on his belly, only looking one direction.)

When we arrived to feed him in the afternoon, he was bright-eyed and we took lots of pictures of his sweet face.  It was so much fun!  We were both laughing and it was a very special time of watching him in wonder.  The nurses said that he is doing a great job with his feedings (and have since started feeding him with the bottle every three hours!). 

Friday was another great day!  In general, Jeremy spends the morning with Jonathan and then I head up there in the afternoons.  This gives us each some time every day with Noah, Grace, and Ruth also.  So, on Friday Jeremy called me from the hospital to say that he had some news...good news!  The neurosurgeon came by while Jeremy was at the hospital.  After looking at Jonathan's back for a while, he turned to Jeremy and said, "It's time.  Today's the day.  We're rolling him over to his back.  And Mom gets to hold him on a pillow."  We were extremely excited and nervous all at the same time.  Wanting to hold him, but wanting that back to be healed enough to hold.  The surgeon reassured us several times that he was confident the back was healed enough, especially in the layers of muscle, to hold.  Even if some of the skin reopens, it will be ok.

So, when I got to the hospital in the afternoon.  They turned Jonathan over and placed him on a pillow in my lap.  I got to feed him with the bottle and see his whole face!  He wore himself out and fell right back to sleep.  The OT then showed me some stretches and massages that we can do for Jonathan when we are holding him, in order to stretch some of the muscles that are now tight because he's spent the first few weeks of his life on his belly.  It's also to help his legs and feet with circulation since he's not moving from the waist down.

Here are a couple of pictures from these great milestones in Jonathan's life.  But what a blessing to see the Lord answer prayers for our son and be able to rejoice in these victories in his life!  We were so surprised by how quickly this happened.  No telling what this next week will hold:)