The Norman Nest

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 ...

Highlights: We had fun dancing at Uncle David and Aunt Rachel's wedding reception! * Nathan was discharged from the PICU and sent to a normal floor.  * Because of Nathan's being discharged and being more stable, Jonny, Madison and myself were all able to be at my younger brother's wedding last Sunday!  Jonny was the officiant and Madison and I were in it :)  What a truly joyous occasion! * Jonny's mom came in from MD to be with Nathan while we were gone and several friends took turns staying the nights at the hospital so she could rest and be able to engage during the day.  We are so, SO thankful for those sacrifices that enabled us to be at the wedding. The plan: At this point, everyone is working towards our being able to take Nathan home on Sunday !!!  *We will most likely be bringing him home on a feeding tube for a few weeks- still hoping for a few more conversations and possibly tests about this.  The type of feeding tube Nat...

Family and Friends, There are a few updates on Nathan, which you will find in bullet points below.  A little further down I have shared some more personal thoughts for those who have been asking and want to know.  Thank you so much for your continued service, support and prayers for us.  To say thank you again and again on a blog seems so shallow but please know we mean it deeply. Nathan's Updates: * Nathan is breathing on room air - no oxygen support! * Nathan is finally experiencing less pain and seems to be weening well from the drugs... finally! * Nathan will have a sleep study tonight (Wed.) and then should be release from the PICU after 23 days and send to a normal floor * Towards the end of this week and early next week Nathan will have a few digestion tests done to try help us decipher if his digestion troubles have anything to do why he aspirated.  Our prayer is for clarity and unity in all these tests to help the us know how we can best proc...

We wanted to give a quick update on Nathan.  Today is his 16th day in the PICU and he is almost almost completely off of oxygen support!  Hopefully, he will be flying on his own at some point tomorrow!  We are really thankful that he continues to get stronger! His pain was still pretty high during various points of the day.  Narcotics do a number on a little body...  After a lot of work, we finally got him to a place where he was able to sleep for a few hours (pictured above.)  The Iphone doubles as a great paci holder and great white noise machine! The plan is still pretty much the same as we mentioned in our last post...  The primary focus is getting Nathan completely on his own for breathing, getting him off of the drugs and then some tests for digestion.  He really needs to be almost, if not completely off of drugs for the tests to be considered valid so that we know we are getting a clear picture of what is happening....

We are thankful to be able to share some good news!  On Thursday afternoon, Nathan was taken off the ventilator!  We were very surprised as he had bombed a trial run early in the morning (and when I say early, I mean early like 4:15am early...  please don't judge the bags under our eyes) but he was doing much better in the afternoon so the doctors decided to go for it!  He is still getting some extra oxygen support through the face shield (seen in the pic above.)  Our arms and heart were full of thanks when we finally got to hold him after 9 days, even if only for a little while! The short term goals for him are to continue to be able to cough up the fluid that is still in his lungs .  He still has a fairly decent amount in there but the hope is that as his little body keeps getting stronger he is able to keep getting it out by himself.  The other important thing at the moment is his being weened from the narcotics he has been on for 11 days now. ...