The Norman Nest

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...

As the month comes to a close we are thankful to have been home from the hospital for 2 weeks!  Overall, they have been a great two weeks and I think we all feel like we are finally coming down from the adrenaline rush of February and most of March.  While chatting with a friend she gave the word picture of a car idling and I think that is a great picture of what the first week at home felt like.  It just takes some time for your brain, body and emotions to shift gears.  Nathan was really struggling (and I mean reeeeaaalllly struggling) with sleeping which was probably a combination of having been in the hospital for so long and the fact that food is totally bypassing his stomach so some of the normal things that help babies establish routines just weren't there.  The past several nights have been great for his sleeping, which helps everybody!  I just love how Madison automatically grabbed Nathan's hand for the picture!  Above is a  picture...

I got the phone call sometime yesterday afternoon.... "Do you want the good news or the GREAT news first?" Jonny asked. Because it has been a particularly difficult and tragic week for our community, church family and even just tiring personally (Nathan went back into the hospital for two nights last weekend.  Thankfully, it was just an upper respiratory infection which never progressed to his lungs and we are home again) I went all in... "The GREAT .  Give me the GREAT news ." "Dr. Fearon's office just called and they are UNDER CONTRACT with our insurance for a year!!!!" His joyful proclamation was met with silence.  Silence, because the time it took him to get that sentence out of his mouth was all the time needed for my throat to tighten and my eyes to fill with tears.   It happened.  It really, really happened.  Since October 21st, when we were first given Nathan's diagnosis of Apert Syndrome and were simultaneously info...

We are officially home !  Nathan was discharged from the hospital yesterday!  It has been a FULL 24 hours trying to get into the swing of things here.  Nathan did come home with the NJ feeding tube that goes down through his nose and into his small intestine.  As I mentioned earlier, it is continuously dripping which means that for 20/24 hours he has to be connected to it. Sweet Madison has been so happy and giggly!  I cannot tell you how many times she has given Nathan a hug, or patted his back or given him a kiss....  All so sweet... and also a little tricky with the feeding tube and the chords that come along with it!  If we make it until his surgery without that chord getting pulled out (which happened last time we brought him home on one - back in November) I will be shocked. Nathan also has to be hooked up to oxygen at night for now.  Not a lot and maybe not forever but for at least the next few weeks.  Trying to corral Maddie and ...