The Other Side!!

Good morning Payton! Your smile today was the biggest gift and sigh of relief we could have ever asked for after our experiences during the past 48 hours.  Right now you are peacefully napping, still being monitored closely and hooked up to lots of different things.  But we are so relieved at this point to see such progress in your recovery compared to yesterday post-surgery.  I'm going to back up though and fill you in on your past two days.

Wednesday, May 22nd (day before surgery) could not have gone more smoothly.  After hugs and kisses goodbye from Pierce, we drove to Denver with plenty of time to spare, leaving us some time to grab a quick lunch, check into the hotel, and be at Children's Hospital for the start of your pre-op appointments at 1 pm.  You did so amazingly great for your CT scan!  You were very quiet, slightly "concerned" looking, but not crying or scared at all as they got you bundled tightly.  Once you were snug enough that they felt confident you wouldn't wiggle around too much, they put you in and out to the machine while dad and I got to stay in the room.  All looked great, until the radiologist realized your little outfit had metal snaps near your head that is.  She was bummed because they had to completely un-bundle you, take you out of your clothes, and start the bundling process all over again, by which point you were getting upset.  So "take two" was more of a struggle but you did it and it was all over fairly fast. On to the next appointment.


Getting ready for CT scan



Headed into CT scan

Bloodwork was pretty much what we expected, not fun!  You cried.  We held your hand, sang to you, and gave you your pacifier dipped in sugar water (a first for you.)  Unfortunately, they couldn't get all the blood they needed from your vein the first time, so they had to heel prick you and collect more blood from there to get the rest.  Thank goodness you are so forgiving....you even gave the nurse a smile before we left (and once you'd settled down.)

After your bloodwork, we met the doctors briefly and then had a short physical exam for you with a nurse practitioner.  Your health checked out perfect, which was what we expected but still a relief.  The nurse shared your blood work results and showed us the CT scan, which CLEARLY showed the fused part of your skull on the right side (left side of picture below.)  Wow.  It was a good reminder of why this surgery needs to happen.  One eye socket already looked bigger than the other, right brow further back, and you could even see why your nose is starting to barely tilt to the left side.  It is amazing to know that surgery corrects ALL of this!
 

Payton's CT scan, May 22nd.
 Right coronal suture is fused.
(You can see where it should be open if you look closely.)

 The nurse practitioner was really helpful in explaining the entire procedure again.  She answered many questions...all while bouncing you on her knee and getting you to fall asleep in her lap.  I think she's been around babies before. :)  With the past two weeks at home breeding a build up of nerves, Derek and I felt much calmer and ready for what to expect the next morning when we arrived for your surgery.  It was nice to have this "trial" run the day before as well as get all your pre-op stuff out of the way and confirm that nothing (healthwise) was going to delay your surgery.  The hospital visit ended that day with them taking some pretty amazing 3D photos of your head.  They will do this over the next few years and be able to see and take very specific measurements of your head shape and growth.  It is exciting to think how you will grow over the next few years!  I'm not rushing it though, I still love this baby stage so much.

Payton, after a full day, you were pretty fussy by this point, so we grabbed some Subway and just went back to the hotel for an early bedtime.  You got some sleep that night (very broken up, so we eventually just put you in bed between us to cuddle.)  Your dad and I didn't sleep for more than two hours total.  I think we had too much on our minds...plus I was worried about sleeping through my alarm to wake you and feed you for your last feeding at 3 am.  Once I was up with you at 3, it just was too hard to fall back asleep and we were up at 4:30 for the day since you had a 5:30 check in time.  

Going to bed the night before surgery. Payton still gave us lots
of smiles after a long day of pre-op appointments.

Now on to surgery day.  I don't know if words can accurately describe how it feels to be waiting for your child to undergo a major surgery.  Too many other moms and dads have had to experience it at some point, and I now understand why they might describe it as "indescribable." It felt surreal.  The saving grace in all of that was how smoothly the morning went and how kind everyone was.  For two hours, we were in a holding room while nurses and doctors came in and out, checked your vitals, talked to us, had us sign consent forms, etc.   Thank goodness you are at a stage now where you can be easily distracted because you were hungry by the time they took you to surgery. 


All dressed in hospital gown and set to go for surgery.

 

Payton, one thing in my life I pray I NEVER have to experience ever again is how gut-wrenching it was to hand you over and say good-bye as they took you away. Now I can't even imagine how parents feel when their child's surgery has an unknown outcome.  Your doctors were very confident in a great outcome for you (and they were right.)  Even knowing that, it killed us to hand you over. Tears are falling down my face right now just remembering that heartache yesterday. I'm so glad its behind us.  I cried so hard I had to sit down and collect myself before we could even go back to the waiting area.  Even then, it took me a good hour before I could talk to anyone without balling. I knew it was going to be difficult, but WOW.  I'm so grateful for your dad Payton.  Derek loves us so much and is such a rock.  He was shaken too, yet he's also so composed and supportive.  We just needed to hug eachother for a while and we felt grateful to be able to comfort eachother. 

The waiting went much faster than I actually expected.  We walked a bit, talked to your grandparents on the phone, read magazines, and just tried to stay occupied.  An OR nurse called out to update us every hour and continuously shared that things were going as expected.  Finally, 4 1/2 hours after your surgery began, the doctors came out and smiled and shared that everything went great!  Another couple in the surgery waiting area smiled at Derek afterwards and told him they could visibly see his shoulders relax.  We were relieved and very anxious (and nervous) to see you.  We still waited over an hour before they felt your were stable enough for us to come back to you.

The first sight of you post-surgery took my breath away.  I don't think I'm going to post any pictures at this point.  Maybe once you are more recovered, your swelling has improved, and your incision is better healed- we'll see.  But I'll show you someday if you want to see them Payton.  When we walked around the corner, I knew it was you when I saw this tiny little body in a hospital crib with things sticking to you everywhere, IV's coming out of both ankles, oxygen mask on, a sore-looking incision across your head, and-even though we were warned about it-a large drain coming out of your head and running across your forehead under your skin.  Even though it was hard to see you like this, Derek and I were both still just relieved to be by your side again.  And we haven't left your side since.  We sat with you for a few more hours in the recovery area because the doctors and nurses weren't happy enough with your breathing to send you to your own room quite yet.  You were also very sleepy and once woke for brief periods, at which point you wimpered and made sad faces like, "What's going on?"  SO hard to see but nurses said a big part of that is just because of how it feels coming off of anestesia. You DID like for your hand to be held and we just talked to you and squeezed you hands constantly. 

It was a great relief when they finally transferred us to your own room by about 4 pm, which is where we are all now staying together until you can come home (at the earliest Sunday they said...don't know yet.) That whole afternoon and evening, they kept you on oxygen and monitored you a little closer because of some mild respiratory issues. But today, you are already off oxygen and doing well breathing completely on your own.  As I'm writing this, I'm thinking (and hoping I don't jinx us) that we may be past the most difficult part of this experience, the first 24 hours.  You are a completely different baby today than you were last night, a happier, more restful, calm baby.  Last night, you just seemed so uncomfortable and out of sorts.  Derek and I had a mini-meltdown by that night because you were having to be poked and prodded so much every single hour.  Right when you'd finally settle down, someone was there to take your blood pressure, prick your heel to draw a blood sample, take your temp, etc.  We totally understand WHY they were doing this, but it was just so frustrating to see you disoriented and unhappy.  Thank God we are past that for now.  Today has been a whole new day. 

Speaking of "whole new day," Derek and I realized early this morning that because we were so concerned first and foremost with how you were FEELING yesterday, we never really gave much thought to how you LOOKED.  I got to hold you and nurse you early this morning (which was so wonderful, even with cords and monitors everywhere.)  You fell asleep in my arms and Derek and I just looked at your face and head closely.  Even through the swelling and with the drain still in (which they plan to take out by tomorrow), we can tell you have much more symmetrical brows!  Your forehead looks amazing.  I think we were both stunned and thrilled.  Funny how the whole point of surgery (reshaping your skull) was actually an afterthought for us at first.  But once you started feeling better, we could also focus on the outcome of surgery and get excited for you about how much this will be a good thing for you for the REST of your life.  I can't wait to see your results as you heal more in the coming weeks (and even next two years-the "final" look won't be known until you are still a little older and your bones have grown more.)

So now (I can't believe you are STILL asleep as I'm typing this long post), we just rest, take care of you, and help you through the next 24-48 hrs of swelling and pain management.  By Saturday, your swelling should be on it's way back down.  Nurses are going to teach us today or tomorrow how to wash your hair and clean your incision.  You won't wear any bandages or helmets at all and they say we are going to be amazed at how fast you are bouncing back in the coming days.  You may still LOOK hurt for a while, with your noticeable incision and some swelling/bruising, but you'll FEEL really good as long as we stay ahead of any pain.  I for one, can't wait to see you feeling so great again! 

We have recieved SO many texts, emails, and prayers from friends and family the past few days and are very thankful for the support system and love.  One amazing display of support yesterday was a picture sent to us from Derek's coworkers right after donating blood at a blood bank, which we had no idea they were doing.  The picture was titled "We did it for Payton!" Now, after my own child has had a blood transfusion, it makes you think more about who generously donated their own blood so that our baby could stay healthy and safe during surgery.   It doesn't feel like just a "thanks" is enough to express how much we have appreciated and drawn strength from everyone's support and words of encouragement.  Now, Payton, let's hope for continued progress over the next few days so we can bring you home soon!  Maybe by Sunday or Monday.....stay strong little girl!