Jillian's Surgery

Thursday, May 10, 2012

Hello friends, I hope you are all having a great week!!!!  I am surprised you haven't all forgotten about me by now.  Finding the time to blog is becoming even more challenging than ever before. Here I thought it was going to get better!!  Thanks for still sticking with me, I am sure I will be back to regular blogging soon.  I think I am a little over half way through baby boot camp so far.  Nicholas has even started to give me a few five hour stretches at night here and there which has been nice!!  Things are still crazy though, especially during the day, hence the reason for the lack of blog posts.  Jillian is still not napping much for me again which is making everything EXTREMELY challenging. When she does nap, I have been trying to catch a few Z's myself.  As we speak, I **think** she finally just fell asleep so I thought I would type out a quick blog post while I still have the time!

Thanks to everyone who left me sweet comments and questions in my last post.  I am in the process of writing out my answers and hopefully will post those soon!!!  A lot of great questions, most of them focusing on my decision to become a Stay At Home Mom and the transition from 1 to 2 babies.  All very good questions and I can't wait to let you know how I am feeling about both!  If you have any other questions, I would be happy to hear them.

Jillian had surgery on her head on Tuesday and I wanted to let you all know how it went and how she is doing.  If you follow me on Twitter, Facebook and Instagram, you saw several updates on how our day was going.  Several of you commented that you hadn't realized she needed surgery.  I know I haven't talked much about her situation on the blog.  It all stems from a birth related issue that I did mention around the time she born, however, haven't mentioned it since.  We knew Jillian would eventually need surgery one day, however, we made the decision rather suddenly once we found out her pediatric plastic surgeon was transferring out of state in a few months. 

Just to give you a little history of what happened, Jillian had two open wounds on the top of her head when she was born.  One is right on top of her head and another one just to the right of it.  The largest one measured around the size of a quarter.  From the moment Jillian was born, we were an absolute mess to what could have caused these open wounds on her head.  Jillian had a pretty tough delivery with the use of a vacuum which did not go very well.  The vacuum had popped off her head several times because she was lodged so deep in the birth canal.  To make a long story short, my OB and the other NICU doctors present in the delivery room tried to cover up the situation by not even telling us about it.  We didn't even find out about it until our Pediatrician came to examine her an hour later and took her hat off and showed up her wounds.  Because Jillian was born with a full dark head of hair and the wounds were a deep red/black color, they weren't obvious when they first placed her on my chest.  They stuck a hat on her immediately and just handed her over to me to begin breast feeding.  During our stay at the hospital, we had a revolving door of doctors and nurses coming in to give us their opinion on what caused the woulds.  We were told it was either from the vacuum or a skin condition called Cutis Aplaysia.   We were also told that whatever it was, Jillian could possibly have brain damage and/or develop a staph infection from it.  I can't even put into words how upsetting and frustrating this whole situation was to us.  For the first several weeks of Jillian's life we spent visiting numerous doctors trying to figure out what this was and if she was going to lead a normal life.  Thankfully we found out within a week of her birth that she didn't have any underlying brain damage.  That was a huge relief although at the time it was one of the longest weeks of my life.  The past two years we have spent countless hours trying to figure out what had happen to Jillian's head and how we were going to fix it.  Our biggest fear was for her to ever feel badly about how the back of her head looked and we never, ever wanted her to be picked on by other kids for looking "different". 

We met with two pediatric plastic surgeons, one who said it was Cutis Aplaysia, the other who said it was from the vacuum delivery.  Typical for our situation, no one ever seemed to feel 100% sure either way once they assessed her head.   The plastic surgeon we ended up choosing was the one who felt it was from the vacuum. Not because he agreed with our opinion, but because he was the only one who supported his diagnosis with sound reasons to why he felt the way he did.  In his initial assessment, he said he could not see any underlying bone damage, and felt it was more likely from the vacuum delivery.  With Cutis Aplaysia, there is typically some damage to the skull as well.

Once we found out the plastic surgeon we liked was leaving, we immediately scheduled Jillian's surgery.  We knew we wanted her to have it done before she went to pre-school, however, didn't expect to have it done right after Nicholas' birth.  Talk about a lot to worry about in just a short amount of time!!! 

Jillian's surgery was scheduled for 11:15am on Tuesday.  I was so glad it wasn't at the crack of dawn like her ear tube surgery.  We at least got to have a normal morning and then headed downtown to Rainbow Babies and Children's hospital. 

Here is Jeff and Jillian passing the time in the waiting room by watching YouTube video's on Jeff's iPhone.  Is your Toddler obsessed with your iPhones?  I don't know what we ever did without them.  They certainly provide us with a major distraction in critical times such as these!!! 







Thankfully we only waited for a brief amount of time in the waiting room until they called us back to prep Jillian for surgery.  I don't know why, but I was so much more nervous for this surgery then I was for her ear tubes.  I was just an anxious mess the whole time.  I kept worrying about the anesthesia and if she would even wake up from the surgery.  Horrible thoughts were going through my head, it was awful.  I was scared to death the entire time.  Jeff was also a ball of nerves.  In situations such as this, I am so thankful to have him as a husband. He is really my rock during these tough situations.  He asks the doctors and nurses all the right questions where I just want to bury my head in the sand and act like nothing bad is about to happen. 

My sweet girl in her surgery gown, again playing with Jeff's iPhone.  Of course you can't have surgery without wearing your green Mardi Gras beads either.  She is such a girly girl! 






Jeff insisted on carrying Jillian back to the operating room instead of them wheeling her back.  Jillian put her "Snoozer" teddy bear on the gurney instead which was unbelievably cute.  There goes my sweet girl, I was such a mess when they left, I just went back to our little room and prayed that everything would turn out OK.







After Jeff returned from dropping her off we nervously paced around the waiting room a bit and then decided to grab some lunch in the cafeteria.  Thankfully, they provided us with a pager in case she came out of surgery earlier than anticipated. 

After an hour, the doctor called us in to a back room to speak to us about how her surgery went.  We still weren't able to see her but were so relieved just knowing that it had gone well and she would be waking up shortly.  The doctor explained to us that he had to remove several layers of deep scar tissue down to the bone and found there to be a slight indentation to the skull bone which caused him to question his original diagnosis. He said that it could have been very possible that she did have Cutis Aplaysia but couldn't confidently say for sure. 

Here is our sweet girl still asleep from the affects of the anesthesia, still hooked up to her IV and monitors.  Thankfully she woke up a few minutes later and all she wanted to do was cuddle with Mommy and Daddy. 







Jillian has a large incision on the back of her head where her large scar balls used to be.  Her doctor cut out the scars and pulled her skin together which will form a very thin horizontal line along the back of her head.  Her hair should eventually cover the thin scar once it grows back.  They had to shave her head a little but surprisingly not as much as I thought they would.  Thankfully Jillian seems to have my thick and wavy dark hair so good hair days are certainly still in her future! 

I honestly don't think we will ever know what happened to Jillian's head on the day of her birth. All I know is that it was a trying time for all of us and one I am looking forward to putting behind us once Jillian's incision finally heals.

Jillian is doing amazingly well now and hasn't complained once about her incision bothering her.  She is more worried about her the little black and blue mark on her hand from where her IV was.  I thought for sure I was going to have a few rough days at home with her managing her pain, however, she is acting like nothing happened.  She is just a resilient and happy little girl!  Thanks to everyone for all of your thoughts and prayers, it really meant a lot to us!


20 comments:

  1. I cant believe I didnt know she was having surgery. Hoping for a quick recovery and that she's feeling better now! Hugs to her for sure!!!

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  2. Oh Karen, I've been in the waiting room while my baby was having head surgery, and all I can say is that I want to give you a hug! So glad to hear that there's at least a physical resolution to the issue and that Jillian is doing so well. She's such a beautiful little girl!

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  3. My goodness, K...I had no idea! Sweet girl was a trooper, and truth be told probably handled it a lot better than momma and daddy, right?! Kids are so resilient. So glad to see that the new family of 4 is hanging in there. I will certainly keep y'all, especially Sweet Jillian in my thoughts and prayers. Take care, friend!

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  4. Wow. What a ride! I can see how frustrating that would be. I can only imagine how glad you are to have that surgery behind you. Praise the Lord she is doing well!

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  5. Prayers for fast healing for your precious girl!

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  6. Hope she is feeling better soon. :)

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  7. So glad that everything went well. Prayers for a speedy recovery.

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  8. Well, goodness one more thing we have in common. Not the head surgery but a newborn with complications and being told she/he may have brain damage. I finally realized that doctors don't always have the answers and just remain thankful that Reid is a happy, healthy kid!

    I KNOW how nerve-racking that is So glad she is okay. And kids are amazing with how quickly they bounce back!!!

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  9. Such a sweet girl. I'm so glad she is doing well. For some reason, on my computer, the w's are missing in your post so I may have to go back and read again because I had to fill in all the w words. There may be another letter missing, too. But, I think it is mainly with W's. I need to read your post on my phone.

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  10. I can't imagine how stressed you've been! So glad everything went well & she's recovering without any problems. Have a great weekend!

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  11. Oh Karen, I had no idea! I am so glad that Jillian is doing well now and that you will all be able to move forward. I can't believe they tried to cover it up - how awful of them! So glad she is okay now!

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  12. Wow, Karen you are so brave. It is so hard for a mommy to deal with, and yo not only handled it so well, but then sat down and wrote about it! Thank you for sharing your story, I am so happy she is doing well.

    Happy to know good hair days are still in her future:)

    Jessica
    stayathomeista.com

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  13. I am so glad to hear that Jillian is doing well after her surgery and that she has bounced back to her normal self. It must be a weight off your shoulders to have this done and to see her happy and healthy. I cannot imagine what it is like to see your child go into surgery and be put under General Anasetic (ok the correct spelling for that word I am not going to attempt lol) how scary for you and your husband :(
    Have a wonderful weekend with her!!

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  14. It is great to hear that Jillian's surgery went well!

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  15. Wow, I cannot believe all that. I am so sorry for what you went through but thank god she is safe and there is no residual damage but for the scars. poor thing!

    Happy Mother's day to you!

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  16. Wow! How scary for you! I'm so glad to hear she is doing well! What a brave little one! Happy Mother's day to you!!
    xx

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  17. wow how scary but so glad to hear things went well.

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  18. I am so glad to hear that all went well Karen. Yet saddened that you had to go through that from the minute she was born. I am sure it was beyond stressful!! She will be fine and although you will never know what happened, be thankful that it wasn't worse. Glad to hear you are getting a few hours of sleep from Nicholas...I am sure you feel so much better when you are rested!

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  19. I hope she is feeling better soon <3! I read your post and others too...but glad to hear its over. so anyways, i am first time here, visiting your blog, and guess what brought me here? your daughers name, jillian (on your profile page)..my daughters name is jillian and they surely are special girls, just by names too!
    I really like your blog and will come back very soon!

    welcome to visit us www.neverending-joy.blogspot.ca

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  20. Hope you are doing well. I'm on the laptop today and all the w's are so it just must be my computer...it's old.

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