Following are updates about Thomas' surgery and recovery.  Because they are emotional and so "in the moment",  I honestly feel that the information is crucial for anyone who is going through the same struggle with craniosynostosis surgery.  I want you there with me, in the hospital and by Thomas' side during his recovery in the PICU.  As much as I researched and did my homework before surgery, I was certainly NOT prepared for what I experienced.  Also, the pictures are heart wrenching, but depict a true account of the horrific healing process that my poor, sweet Thomas had to face.

For more information about how we are doing since we have been home, please visit the recent posts page.  We are continually posting pictures and information about our lives after surgery.

Monday 8/24/09, 8:36 am

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ready for surgery
Good morning!  Just a quick note to let you know that Thomas is doing great.  We arrived at the hospital at 6:15 am and immediately were taken for pre-op exam, etc.  Thomas was happy as could be, smiling and flirting with all of the female nurses...so cute, and not even a peep about not eating!!  After a yummy dose of Tylenol, he passed out.  We then met with the anesthesiologists and a couple of surgical nurses.  After that, he woke up and we had to give kisses and hugs and tell our little champ that we would see him in a couple hours (fighting through all of the tears).  I was much stronger than expected, for his sake I had to be.  Watching him being wheeled away was horrible and it absolutely broke our hearts, but again, he was awake and happy with his favorite blankie in hand.  He is the first surgery of the morning, so they were taking him to get started immediately.  Thomas is in fabulous hands, that we know for certain!!

Now, we wait...I will be sure to keep you all posted once we hear from the doctors on his progress.  And then again when we are with our little angel, in his recovery room.

Thank you all so much for thinking of us and praying for Thomas.  Also, thank you for passing on the info of Thomas' progress.

Lots of Love!!

xo Cybill


Monday 8/24/09, 7:18 pm

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sleeping soundly after surgery
Hi Everyone!  Well, it has been one heck of a day, to say the least....who am I kidding?  Today totally SUCKED!!!  Thomas is my hero!  What a brave and strong little boy.  He survived his surgery like a super star and Dr. Sutton worked magic in just about an hours time.  He said that Thomas was a perfect patient and will really "enjoy his new head" (Liz, I think that you can appreciate that dry sense of humor from the doc!).  He immediately went up to the PICU (pediatric intensive care unit), where we will be staying until we go home.  Joe and I were immediately brought to him and anything and everything that I did to prepare myself, did NOT.  My heart broke all over again when I saw my little angel, my baby laying in bed hooked up to all kinds of machines and monitors, his eyes open, dazed and confused, moaning and unhappy with doctors EVERYWHERE!  I just wanted to push them all aside and scoop him up in my arms.  But, I did lean in and hold his hand and told him that I was right here with him and not to be scared....he was doing great and it would all get better soon.
 
I think that the biggest surprise to me was that there were no bandages.  The incision was what I had expected, from ear to ear across the top of his head.  It was very bloody and looked so sore!  After all of the doctors left and we were left with our amazing and super sweet nurse Kate, I finally got to hold him!!!  I was so scared of hurting him, but was assured that he was ok and not to be scared of the incision.  He was acting hungry, which I was happy to see and sucked down a bottle that I had pumped this morning (a great sign!).  I think I was expecting a smile or one of his sweet coos at this point....no, just a lot of unhappiness, grogginess, not knowing what was going on...."what the heck just happened mom" kind of looks. 
 
I then spent about five hours holding him in the chair and even was able to nurse him!  I think I have finally mastered working my way around all of these darn wires without getting him totally tangled up!  He is still getting his IV fluids, at least until he has a few more solid feedings.  He was very fussy and seemed to be in pain, and was able to get new medicine.  Which, once it kicked in, allowed him to take a little nap, laying on my chest, without too  much fussiness.  Ok, two things he definitely hates....diaper changes and getting weighed!!!  Nurse Kate and I gave him a sponge bath, which made everyone feel so much better (there was a lot of dried blood and he smelled like surgery).  That was not a walk in the park, but he got new pj's and was swaddled up nice and tight and is now sleeping so, so soundly in his bed and just looks so peaceful!!!
 
The swelling is something that is a tough pill to swallow.  It breaks my heart!  I know that it is not  painful, but his head is just so puffy and swollen!!  He actually looks a little like Charlie Brown!!  Unfortunately, the swelling is going to get a lot worse before it gets better.  We were told to expect that his head will look bigger and his eyes will be swollen shut by the morning.  Then, in about another day or so, it will start going down.  As long as he is not in any pain then I will be happy!!!
 
Other good news.....I took a shower (aahhhhh) and am now in my cozy sweats and ugg slippers!  Amazing what a quick shower can do for you!  And, we were able to get a room on the 8th floor in the Family Center, so Joe will sleep in the hospital tonight and be nice and close.  It is day by day, so hopefully we will get lucky again!!
 
Ok, that is about it for now!  I am pretty much working on auto-pilot because I only slept about three hours last night and have not had a second to rest today.  Hopefully Thomas will give me the opportunity to get a little shut eye tonight.  He seems to be resting so soundly in his tight swaddle, so I am thinking that Kate made a great call in getting him cozy!  I am going to run downstairs and try to grab a little food before the cafeteria closes.  Thank you all so much for your nice messages and for thinking of us here in Philly.  I know that Thomas appreciates all of your love and prayers....keep them coming!!!!  And, feel free to please pass this email on to anyone who may be interested in hearing how we are doing.  I will be sure to keep you posted as much as possible.  Big, big THANKS to Laura for generously allowing me to use her laptop so I can keep everyone in the loop.
 
Call me if you want to chat!  My phone number in the room is 267-426-3720.  If I dont answer, then I am probably just across the room or busy with my sweet baby, so just try back!!
 
Love you all!!!!
 
xoxo Cybill
 

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surgical incision...no bandages!
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Wednesday 8/26/09, 7:52 am

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swollen and bruised
Sorry that I did not send an update yesterday, but I had a few technical difficulties and my email got lost in CHOP cyberworld.  Anyway, here is the latest on my sweet little patient...
 
We made it through yesterday.  After a pretty good first night, Thomas woke up and was pretty swollen.  His left eye was bruised and shut.  His right eye was puffy as well, but still about halfway open.  His head was very, very swollen....something that I was not prepared for, but not to this extreme!  We would told that he would "have swelling", but the poor little guy...his noggin was just so big and puffy!   Doctors from the neurosugery team came in to check on Thomas and they were thrilled with how his incision looks.  It really in incredible how in one day the healing progressed so much!  They also told me that yes, he would in fact become more swollen as the day went on, that it would get worse before it got better.  Boy, were they right!!  So, by late morning and mid afternoon, both eyes were shut and bruised.  He was very comfortable throughout the day, but boy, did I miss seeing those baby blues!!!  The best part of the day was him laying on me for about 5 hours.  We were both so, so happy to just rest with one another.
 
At this point, he was just on tylenol for pain.  The other medicine hurt his belly and caused vomiting.  Late afternoon I decided to finally leave the room for a little fresh air and something to eat.  Of course, once I left, he was acting very irritable and uncomfortable and was just down right unhappy.  So, the nurse gave him a nice dose of morphine.  He got nice and swaddled and once the drugs kicked in, was in la-la land and took a nice long nap!  So, for the most part, the day was pretty uneventful, which is good.
 
After eating last night, he power barfed all over me (and of course, the sweet little thing waited until I had just showered!).  He seemed to still be affected by the anasthesia, which, from personal experience of having 3 c-sections, is no fun!!  He got cleaned up, swaddled and propped up again to help with swelling and went back to sleep.  I nursed him again at about 11:30, before getting a little shut eye myself, and his belly was still not happy, so he threw up again.  The nurse and I decided to put him on a little fluids during the night, just so he would not get dehydrated.  I woke up at 4:30 this morning and nursed him, which made him very, very happy.  He fell asleep on my chest for about an hour, only to wake up and spit up again.  Believe it or not, he really wanted to nurse and eat again.  He held it all down and was happy, again asleep on me, until the woman from the lab came to draw blood (he didnt like her much!).  But now, after his dose of tylenol, he is swaddled, cozy and sleeping.  And as I type, I can hear his sweet little coos.  Such an angel!!
 
The swelling is so much better this morning.  His left eye is still pretty bad and swollen shut, but he was able to open the right one a little bit.  And, his head has gone down a bit too. So we are all happy!!  I was told that throughout the day the swelling will continue to go down.  I am confident that we will see both eyes open by the end of the day and I am determined to even try and get a smile.  Unfortunately, it doesnt look like we will be coming home today.  We all want to be sure that the vomiting stops before we go anywhere!  We just live too far from the hospital to take any chances.  Good thing you can do your laundry here, because as much as I am sure I overpacked, I need to do a load!!
 
I am going to go and get a nice cup of coffee.  Sorry for the rambling....I just wanted to be sure that you all know how my little guy is doing.  Thanks so much for all of your nice messages.  Your incredible thoughts and prayers are what continue to keep us going.
 
Lots of Love!!
Cybill 
       

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Thursday 8/27/09, 12:09 am (late wed. night)

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waiting with heat packs to try and get my IV
Hi!  Ok, this one may be brief because I am exhausted and have to try and get some sleep.
 
Today was somewhat bittersweet.  Thomas' swelling was already better this morning and one eye was starting to open.  He was in much better spirits and did a great job nursing and napping.  We had so much fun snuggling together in the chair.  Quite honestly, we sat there for so long that my butt imprint will probably still be there for weeks after we leave!!  Anyway, it was worth it....Thomas was so happy sleeping in my arms and I did not want him anywhere else!!
 
We got bad news that Thomas' blood count went down and he required a transfusion.  Thankfully the blood that I donated for his surgery was seperated in half pre-op, so we still had plenty for him.  Unfortunately, he had kicked his extra IV out of his foot and the one in his hand had dried up.  So, he had to get a new one.  It took FIVE tries to get an IV in him.  Which, if any of you have had an IV know, it hurts like hell!!!!  The first time he was crying so hard that I had to leave the room (the nurse tried two different places and couldnt get it).  The second try with someone new, I layed next to him and held him trying to console him.  I almost punched the woman in the face after failing TWICE again to get the darn IV into Thomas.  Aparantly his veins are so small to begin with and because of the low blood count, they were even harder to find.  The poor baby was so hysterical that I just scooped him up and held him and he passed out laying on top of me (yup, back in the chair!).  Another woman came in and I almost cried all over again just at the sight of more needles.  She was so sweet and let Thomas stay where he was.  She sat next to me, and was able to successfully get the IV into his hand.  He cried really hard again but not nearly as bad because he was so exhausted.  So, now that the IV was in we were able to start the blood transfusion, which, took four hours.
 
So, long, long day.....although, all is well that ends well.  By the time the transfusion was finished, both of Thomas' eyes were open and he clearly was very excited to be able to see again.  My goal for the day was to get a smile.  And, I succeeded.....before passing out for the night, Thomas gave me a big toothless grin, eyes about as wide open as he could manage and even said one of his sweet little coos.  Then, he closed his eyes and passed out...all snuggled up in his bed with his favorite blankie.
 
On that note, good night!!
 
xoxo Cybill
 
 


Thursday 8/27/09, 12:43 pm

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I'm going home!
What a GREAT day!!!  Thomas slept through the night and  had a fabulous morning.  He got his blood levels checked this morning and they were back up.  Nurse Jen was even able to get blood from his IV line, so no more needles!!!!  After a visit from the neurosurgery team, we got the green light to go home!!!  The attending doctor also checked him out with his team of doctors and everyone agreed that Thomas would be better off at home than in the PICU.  His swelling is down so, so much and his right eye is even totally open....the left not far behind.
 
The discharge papers are in place and we are going to start getting packed up!  Thomas is finally disconnected from all of his machines and his IV hep lock was taken out...yeah!  He loves his new freedom!!  So now with the hospital gown off and in our cozy clothes (with snaps of course....nothing would fit over his noggin!), we are ready to go!!
 
We really are going to miss our nurses Kate and Jen, but have promised to keep in touch and send lots of pictures.  Maybe we can even sneak in a visit at our post-op visit in a few weeks.
 
Thank you all SO SO  much again for your love and support and prayers for Thomas.  Without them we would never have had the strength to get through the past few days.  I am so, so proud of my little angel....Thomas is my hero!!!!!
 
See you soon!!!
 
xoxoxoxoxoxox Cybill


Friday 8/28/09, 10:58 pm

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home sweet home!
And back to CHOP we go...too much celebrating too soon, I guess! 

well, as much as we loved being home, last night was NOT a good night!!   Thomas was so upset and in so much pain and had just the hardest time getting comfortable during the night.  It broke my heart to see him so unhappy and only sleep after he had cried so much that he had exhausted himself.  It absolutely broke my heart to see his tears and not be able to do a darn thing to console him and make him happy.  Needless to say, it was a long night with little to no sleep!!  I did finally get him to get a little rest in his swing (I think it was the sitting up with his head elevated that worked for him).

Today did not go too well either.  Pretty much more of the same.  Although, he did begin to run a fever, which was warning sign #2.  So, between that and the horrible irritability, I call the neurosurgeon and was told to bring him immediately to the ER.

Loooooooooooooooong story short, my dad (bless his heart) drove Thomas and me back down to CHOP late this afternoon (in the pouring rain with horrible traffic) to have him examined.  We saw several doctors who speculated this and that, and wanted to do tests for infection, etc.....I could tell it was going to be a long night.  UNTIL, Dr. Deluna, my hero,  walked in the room!!  He is the neurosurgeon who assisted Dr. Sutton during surgery and who we saw everyday in the PICU.   The second he heard that we were in the ER, he immediately came down to check on us.  He was absolutely thrilled with how Thomas looks and how his healing process is going (incision, swelling, bruising, etc.).  He ruled out a few things that would be causing Thomas' severe pain.  In the end, Thomas went through such a major surgery and is going through a tremendous healing process, probably with a lot of pain and discomfort involved.  He is ok and that is what matters!! 

So, we do what we can to make it through the days that lie ahead and pray that Thomas is as comfortable and happy as possible. I still havent seen Brianna and Katie and cannot wait for the morning when I can finally hold them and smother them with hugs and kisses.  I am sure that Thomas will be thrilled to see them as well and will hurry his recovery time for their sake.

Have a great night and thank you again for all of your amazing messages!

xoxo Cybill


Saturday 8/29/09, 12:47 pm

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Thomas had a great night and we both were able to get a little sleep (he is his swing and me on the couch next to him).  I am just so happy that he is not totally screaming in pain!!!  He is still a little fussy and back to his normal happy self, but seeing him smile is just the greatest thing ever!  He is already making huge improvements and we can tell that his pain and discomfort is starting to subside.

It was so great to see Brianna and Katie when they came home this morning!!  They were so happy to see Thomas and he smiled instantly when he saw them.  I am proud of them both for being so brave and understanding that he is ok, despite how he may look.  I even let them touch his stitches, which they thought was pretty cool!  They smothered him in kisses and then Katie said, "Mommy, his face looks funny!".  Oh, kids and their honesty!  I had to try and explain to her that his head is still swollen and will get better everyday.  All in all, they were just so happy to see him and know that he is ok.

Hopefully we will not have to be making any trips down to Philly anytime soon, except for our follow-up visit with the Neurosurgeon in a few weeks.  Thomas was instructed to go about his normal life (well, at least back to what he was doing as a three month old!).  So, now just day by day....and hopefully we will be able to finally breathe a sigh of relief and enjoy the last week of summer.

Lots of love and thank you!!

xoxoxo Cybill

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my incision is getting better and better every day!
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