The Norman Nest

Sweet Family and Friends, We've been home from the hospital for 18 days and two months from now we hope to have the first stage of Nathan's Finger/Toe release surgery completed.  The thing about time is that it just keeps ticking...  7 months and 5 days ago we went to the hospital expecting to deliver our son and join our 16.5 month old daughter at home the next day.  After all, I'm not a first-time mom, I didn't need TWO nights in the hospital - I wanted to be home... with Madison.  And Nathan.  And now, 82 Days and Nights of hospital life later, I am rejoicing to be home.  Rejoicing and trying to be thankful for and deeply engage the moments.  The little. boring. moments.  Oh, how I have learned to appreciate boring.  Moments where nothing is happening and yet I find tears stinging my eyes because it's just so precious.  Moments like these...  Mother's Day 2014 Sibling bonding This was totally candid!  How a...

We are super, super thankful to be home!  Nathan is doing well and has been giving up lots of smiles.  Madison is beyond thrilled to have Nay-Nay back and usually express that through getting so happy to see him she doesn't know what to do other than to hop, hop, hop her excited little body :) Thanks for your continued prayers for us as we adjust to Nathan's new feeding needs (g-tube) and get back into the full swing of "home life."  Nathan will keep having his roatating physical and ocupational therapies on a weekly basis and we will also begin adding speech therapy to that in the next few weeks to hopefully begin the process of helping him become an oral eater again.   The biggest thing for the next few months is for Nathan to STAY HEALTHY.  The concensus among the Dr's is that we need to do everything possible to keep him "perfect" from a respiratory standpoint between now and his surgery in July.  Here's to hoping... Your prayers and support and ...

Look, Ma!  Free cheeks for kissing!  Looks like our Little Fighter just needed to decide that he wanted to start getting better...  Lots of progress since our last post. Nathan is now breathing on his own except for a little oxygen support at night, which he was already receiving at home!  He is also being fed through his G-tube and as of today is getting the full amount that he needs!  Here's to hoping he continues to tolerate it.  Everything we can see from his test and how he is responding so far indicates that the surgery was really successful!  All this progress means that Nathan was moved out of the PICU last night and onto a regular floor.  His is also a much happier boy now that for the first time in three months he has food in his belly and no tube up his nose and down his throat!  Having a special FroYo treat :) Several folks took shifts at the hospital this weekend so that Madison could get some time with Mommy and ...

We'll start this post with a Pop Quiz (blame it on the teacher in me...) No news for a few days means: A) There is no "significant" medical update B) Days when the waiting feels long and hard are not the best days to update a public forum C) The days have been unbelievably full D) All of the above Correct Answer:  D Nathan is actually not showing any progress in the right direction since he was taken off the ventilator last Wed.  In fact, he has been teeter-tottering as to whether or not he needs to be put back on.  As of yesterday treatments and efforts to trouble shoot why he is still working so hard to breath even with significant oxygen support were really ramped up. We actually haven't even been able to do the study that will give us an indicator of how successful the digestive surgery was because they are unable to conduct the study on the type and amount of oxygen support Nathan is currently receiving.  We came to the hospital to address an eat...

Jonny here this time...First of all thank you so much for joining us in this journey!  That you'd read updates, pray with us for our little man, and constantly send encouraging notes amazes us.  We're so thankful for the support! Quick update on today: we are thankful to God that Nathan took a step in the right direction today! He came off the ventilator and is breathing on his own again! As you can see from the picture, my beautiful wife got to hold her son again! Words fail to capture the beauty of such a moment. And he was quite mesmerized as well!  Probably still a couple weeks in the hospital to recover from all the surgery.  But right now we're  celebrating today's big progress!  Please thank God with us! "Always giving thanks in all things!" - Eph 5:20

Dear Diary, Turns out today was a pretty big deal.  Which kind of makes sense since Mom has been a bit "on edge" lately, if you know what I mean...  She went on a cleaning frenzy this weekend (nervous energy) and I'm pretty sure I saw tears in her eyes when she was kissing Maddie good night on Saturday night.  Speaking of Madison - I miss her.  We dropped her off at some friend's house last night (Sunday) so she could stay there and play with them until Mum-Mum gets in town on Tuesday.  She got really excited when we got to their house and started to clap and say "yay" so I know she's having fun but it's still kind of weird not to hear her giggling or have her give me kisses. Dad woke me up at 5:55am today and stuck that long skinny tube down my nose to suction me out.  Worst alarm clock ever.  Then I did my nebulizer treatement and we were in the car by 6:15 heading to the hospital.  I don't remember a whole lot after that...  I was st...

Family Walk = Simple Pleasure :) Believe it or not I have started three different updates since the last post.  However, things have been a bit back-and-forth feeling about Nathan's last appointments and digestive troubles so I have refrained from actually posting anything. But, lots of you have been asking and we had a final conversation with Nathan's pediatric surgeon here yesterday - so here goes... Nathan will be headed back into the hospital for surgery early next Monday morning .  The results of his biopsy along with his endoscopy has led to the conclusion that the problem he has been having for the last almost six months hasn't gone away and won't improve over time.  So, Monday morning they are going to try to fix that.  There are actually 4 procedures that are possibilities at this point and the surgeon won't really know which one will be the most successful for Nathan until he can "get in there."  While they are doing that, the...