The Norman Nest

Food and Daddy, what more could a boy want? After just two nights in the hospital, we were able to bring our temporarily blind boy back to my parents.  His eyes stayed swollen shut through Friday.  He was obviously terrified the first few days; he was always wanting to be held by Jonny or me with his face as close to our face as possible.  Pictures may be worth a thousand words but they can't do justice to the swelling of this kid's head!  His temples literally went from shoulder to shoulder when the swelling was at it's highest - not to mention the puffy back of his head!   We flew back to Ohio on Saturday.  We've had some rough days (and nights) with Nathan being sick but as of today, he seems to have turned a sharp corner and is hopefully on the up-and-up.  The swelling is already going down significantly. Apparently it could take months to be completely gone but we probably won't even notice it in a few weeks :) Familiar toys to run his (new and impro

Update: The Night Before Surgery According to the surgeon, Nathan's procedure yesterday went "perfectly."  He is out of the ICU today and on a regular floor in the hospital.  There is a lot of swelling - he hasn't been able to open his eyes since before surgery.  This has caused him to be pretty anxious and upset at times.  This is all what we were told to expect but it's still hard to have your little 1 yr old freaking out because he's blind and have no ability to reason with him or console him well.  Our voices, touches and some good drugs every few hours help some.  Hopefully today and tomorrow will be the worst days of swelling and then it will go down from there. Thanks so much for keeping him in your prayers.  I keep telling him he's so much stronger than he knows. Below are a few pictures and some thoughts of mine from The Waiting Room.    Just After Surgery Father Son Bonding Swelling this

For the third time in four and a half months we are back in Dallas for Nathan to have surgery.  This time however, the doctors cleared Nathan to fly and let me tell you - it was AMAZING.  Flying for three hours with two kids is a breeze compared to two days of driving!   All of Nathan's pre-op appointments were Wednesday and we enjoyed Thanksgiving with my dad and youngest brother yesterday.   Surgery starts at 7:45am CT on Monday morning.   As we've said before, this surgery is super intense.  Simply stated, they will make an incision across Nathan's head from ear to ear.  From there, they will remove his skin, take off his skull, reshape it, put it back on, sew his skin up and give him back to us (via the ICU, of course ;) ) Seeing as how that's the simple version, it probably won't surprise anyone reading this to hear that I cried my eyes out last night as we were going to bed. How thankful we are that surgery is here in Dallas where we are wi

"Well, we aren't bored." Lately this has become the little catch phrase Jonny and I throw back and forth to each other in moments where... .... we are at a lakehouse with both kids and 25 college students for the weekend Madison decides that is the perfect time to start potty trianing. .... we play doctor and take off the second round of (horrifyingly stinky) casts to reveal all 20 digits!! ... I'm juggling two little kids in and out of the car for doctor and therapy appointments with "friendly" strangers telling me to put shoes on my son's feet.  (right.  ok.  'cause it's just that easy...  Just so you know, I can't wait to have that experience.  For now, socks-will-do-just-fine-thank-you-very-much.) ... we get a phone call and all the sudden we have a December 1st surgery scheduled for Nathan back in Dallas. ... we spend hours on the phone trying to line up a round of shots to increase Nathan's blood volume before December 1

On This Day.... We CELEBRATE the birth of our precious son one year ago. We REMEMBER the shock, fear and panic that grabbed and twisted our hearts the moment he was born. We CELEBRATE incredible doctor's, specialists, and others who by doing their job excellently ensured our son's safety during the first days of his life. We REMEMBER the fog, the weight, the emptiness of dreams crumbling around us and the sting of eyes that have cried out all their tears. We CELEBRATE that at the end of our dreams our God is still good. We REMEMBER the days when we couldn't touch him, the weeks of the ventilator when we could see him cry and cough but not hear his voice. We CELEBRATE having him in our arms (heavy, awkward casts and all) and the joy it brings us to hear him laugh. We REMEMBER walking past his room and wondering if he would ever come back to it...  wondering if our home would ever actually be his home. We CELEBRATE no unexpected hospital admissions since J

They say there are pro's and con's to everything and having the same surgery twice within 12 weeks is proving to be no exception to that rule.   The Pro's We remember what it was like last time so we are able to make helpful adaptations to our recovery plan.  For instance... *We got more drugs to come home with this time.  And we have not been bashful about using them.  Better pain management = more smiles + more sleep = better for everyone. *We knew what to expect and truthfully, it's been even better than we thought in terms of how Nathan is recovering.  He has had less nasua from anestesia still in his system, he's weaning off the hard meds more smoothly, etc. The Con's *A certain someone we all know and love was MAD to wake up and find himself in casts again.   And I mean MAD.  Little Man would lose. it. most of the time he was awake for the first day and half or so.  That wasn't so fun. However, now that he has realized they are here to stay, he seems e

4:45am - alarm goes off - get dressed, packed, and head to the hospital 6:00am - pre-op check-in. Apparently, Nathan is somewhat of a morning person (he gets this from his dad) 6:15 - 7:45am - pre-wait-wait. This is where we try desperately to amuse Nathan and keep him from thinking about getting hungrier and hungrier by the minute. This mission is best accomplished by taking a ridiculous number of pictures. 7:45am - 1:00pm - Wait. Wait. Wait. 1:00pm - Meet our little fighter in recovery.  Can't hold him yet, but he's recovering well. 4:00pm - On the floor recovering. Finally getting to snuggle. His big sister can't wait to come for a visit after dinner and after that the rest of the night will probably consist of trying to soothe Nathan and begging the nurses for more medicine :) He's been a trooper but definitely seems to be in a lot a pain and is pretty anxious about the casts being back on. It's hard to see him so upset - if he only knew that in four weeks, havi

 The MRI results came back clear!  NO TUMOR!  We're thankful and thrilled.  Obviously, there will be ongoing discussions/potential with Nathan's eyesight because of the unique structure of the bones in his skull and mid face - but those will be on going and are for another day... This means that next week we're heading back to Dallas for the second finger/toe surgery.  On October 9th Nathan will have ALL 10 fingers and toes released!!   9 days from now we'll be sitting, standing, pacing - waiting.  6-7 long hours of waiting for the doctor to walk through the door and take us back to see our son.  The "plan" is that this should look very much like our last surgery in Dallas - casts for 4 weeks afterwards, etc.   Knowing what to expect is somewhat of a double sided coin...  I find myself rubbing his little arms and legs incessantly as I think about how much I missed touching his sweet skin during 4 weeks of casts.  He's so close to crawling - it&#

Y'all. It has officially been 8 weeks since Nathan was in the hospital!  8 weeks in a row of no hospitalizations is more than double the longest stretch we've had in almost a year.  It's been an unbelievable gift to introduce Nathan to some family and friends that we anticipated his meeting long before now as well as just beginning to find some new rhythms as a family. How does it feel?  Kind of like this... The blue casts stayed on for 4 weeks and then (because they were "soft" casts) we took them off at home.  I'm not gonna lie - that was an intense moment, the removal of those casts .  There's nothing like peeling back layers of bandages that were filled with dried blood...  my sons' blood.  Blood from that time they used saws to separate bones... and scissors and needles to cut skin from one part of his body to move it to a place where no skin had previously existed...  Like I said, intense.  I started to think about it in the moment

Because of doing so well post surgery, we were able to leave the hospital after only one night and we have been at my (Jen's) parents house as Nathan continues to recover.  Overall, the hospital was a phenomenal experience.  They see probably 15-20 kids with Apert Syndrome a month, which means that for the first time in 9 months, Nathan's syndrome didn't feel like such an anomaly.  It feels like 9 months of adrenaline is starting to leave our bodies... The first few days the pain management was pretty intense and Nathan was sick coming off of the anesthesia.  All of that has been very much within the expected range of a "typical recovery" though and his doctors here and back home have made themselves very available to help us keep his pain under control.  He really turned a corner yesterday so we are hopeful to be heading home at the end of this week. Because Nathan's days are going so well (nights are still pretty rough) Jonny has been able to be wor

Folks, Jonny here. We're keeping this short and sweet because we are still transitioning between the OR and the floor, but from every perspective, today went really well! An hour before surgery Nathan was quite happy - I think he knew fingers were in his future and was pretty stoked about it. Dr. Fearon said the separating of the fingers and toes and skin grafting went really well. And thankfully, coming off anesthesia went quite smoothly.   Nathan's casts look pretty intense covered in these bog foam rollers but that can't keep mom from holding him! Thanks so much for all of the support, encouragement, and prayers the last 12 hours! We have felt so loved!

There is no chapter in What to Expect the First Year that can prepare a mother’s heart for a moment like this.  These hands.  And these feet. These are the hands and feet that I began to love on March 3, 2013 when we found out I was pregnant.  These are the hands and feet that grew inside my body when I had know idea that a FGFR2 gene even existed, much less that one little mutation which caused an amino acid to be changed on one little position...  could change so much. These are the hands and feet that pushed and poked as they stretched out my body.  They tricked me, these hands and feet.  “This kid is all knees and elbows!” I would declare to his dad.  Never did I imagine that those “elbows” were the tips of these hands and feet. Try I might, I never could feel the flat palms of these hands or feet like I had with my first baby. These are the hands and feet that stole. my. breathe. in the longest seconds of my life. These are the hands and feet that turn