Rory's Cranio Journey

If you are on my Facebook then you may have seen more about Rory than you care to see.  I have mentioned several times that she has Craniosynostosis or early fusing of her skull.   This past week, Rory had her Cranio Vault Reconstruction (CVR).  We honestly did not think it was going to happen.

At home after surgery!

At Auntie's and Uncles day before surgery.

You see back in November, two days before scheduled surgery, Rory had a very small ear infection.  In fact it was caught on her 6 month well baby checkup.  I personally think her teeth were coming in and caused pressure on the ears, but needless to say, the surgery was cancelled.  Now remember the original date was supposed to be November 16th and the doctors had to push it back to the 30th.  All that waiting and we came two days before with a screeching halt.  Trevor travels a lot so him being home is hard to coordinate.  Lucky for us, he is the golden child and his office didn't mind him staying home a little longer and just wanted him to do some short few day trips.  No biggie but still need a new surgery date.  We didn't even care if it was over Christmas or New Year's as we just wanted it done and over with.   Well the new date given was 18 January.  Yuck.  So Trevor started planning his short trips.  We had a great blessing of him being home for both Thanksgiving and Christmas.  Woo Hoo.  KIDS LOVED IT.


 The Wednesday before I had a missed call from UVA and then I saw the nurse had emailed me.  I started reading and the very first sentence was "We need to reschedule".  WHAT!!!  NOT AGAIN!  As my heart started sinking.  Of course I kept reading to see when the new date was and low and behold they moved it up by two weeks!  What a relief.  New date was 4 January.  So this was really only about 2 weeks from the date.  Two days later from the email, (Friday before Christmas) Rory got a fever.  So I was just thinking catching a cold and see how she sleeps.  Then paranoid mommy kicks in so Saturday morning I took her to the doctor (thank goodness for weekend  hours).  Sure enough double ear infection very bad!  Yikes.  No this can't happen.  I went into overdrive of making sure she had the best meds, get her fever down and get everything cleared up before Pre Op and ENT visit.  There was no way I was going to let her get cancelled again.  Of course I know I can't control everything but it was better she got the ear infection over Christmas than over New Year's.   Rory did not get to celebrate Christmas with extended family as we kept her home away from everyone to keep her well.  Trevor went to his parents and I went to mine over different days and poor Rory stayed home with one of us.  It was for the best.  (Other kids were sick too, but this is about Rory). 



Rory was cleared up by Monday, New Year's Eve.  She, Trevor, and I traveled down to UVA on Wednesday for her ENT appointment and Pre Op and of course Surgery day as they were all in a row for each day.  We stayed with Trevor's brother and our sister-in-law who live down there.  It was nice to spend that time with them, since we don't get to very often.  And Rory had her own special mommy/daddy time with no one else around.

Going into surgery!

All the appointments went well and we actually made it to the surgery day.  Yes it was nerve wrecking as we handed her over for her to go into surgery.  She did so well.  So happy.  I did not cry, although Trevor thought I would.  The next several hours were spent sitting in the waiting room.  I updated baby books, played on the computer.  Trevor's brother brought us lunch so we visited for a bit in the hallway.  Then another mom we met whose son had the same surgery sat with us a for a bit towards the end.   Our sister-in-law brought us dinner just at the right moment.  The call we had that Rory was out of surgery and did awesome.  In fact the nurse on the other line said we would be pleased and everyone was oohing and ahing.  I guess they were proud of their work.  Our sister-in-law was able to sneak up to the PICU with us. After all she had our dinner and our hands were full with all the stuff we brought to keep ourselves busy.   

Straight out of surgery with a new round head.

We didn't get to hold her the first night, but that didn't matter.  We got to see her.  She looked so good.  A big difference already in her head shape.  Over the next few days, she swelled that was expected.  Only one tiny scare which was during her blood transfusion on Saturday night.  Trevor had gone to his brothers to get some more things.  As he left Rory  had just been hooked up to her transfusion in her central line.  This was in her neck.  I started nursing her and Trevor left.  Sometimes while nursing a baby, they just want the comfort not the milk and may dribble it out.  This is what I thought was going on with Rory.  After I kept feeling the little drips here and there, I decided to reposition her.  When I did this, I noticed blood everywhere.  It wasn't milk that was dripping it was blood.  Kinda scary, but I was calm.  Not sure how, but I was.  I pushed the call button and yelled for help as I could hear nurses in the hallway.  They came in and got the transfusion stopped and started to assess Rory.  Her neck was saturated, but they got any bleeding to stop.  Its hard to say if any of it was really her blood or just the donor blood.  Came to the assessment that her central line had blown and was no good as a point of entry.  After all was said and done, she only received a bit more than half of the transfusion, but they did give her plasma as well.  Her blood draws looked good, so they decided not to do another one.  She was not a happy camper with all the poking and prodding, but we all know it was for the best to make sure she was ok and that they had some IV line.  But other than that excitement, Rory did great.  She kept playing and we took her for walks.  Her surgeons were so amazed at her progress that we got to go home a day early.  It was bittersweet. 

The beginning of the swelling.

Being held for the first time.

I am awake but can't see.  Dang swelling.

Finally can see again.  My big cheek is from the excitement we had.

Loved playing with my toys.

And driving the hospital car.

Daddy and Rory walking the halls.

Look how great I look.  Hardly anymore swelling.

Going home!

 Now we are home and she is doing amazingly well.  She is back to doing all her stuff like crawling and pulling herself up, but now with a more perfect head.  They did shave her head, so now we get to see how long it will take for her hair to grow back.  We have had so many prayers and support and happy thoughts sent our way, that I truly feel this is why she did so well and got to go home a day early.  Now to get back into the swing of things as she continues to recover.