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Thread: Surgery in 4 days; can't handle the wait

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    Chases mom a_jessie a_jessie's Avatar
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    Default Surgery in 4 days; can't handle the wait

    I just finished watching a blog from a girl-leah (i believe her mommy is on here) from florida that had the same right sided unicoronal and used dr. ian heger. Chase is having the same procedure with Dr. Heger. The pics were so hard to watch. To know that my son will go through all of that is heart wrenching. I cant imagine the fear/sadness of seeing my little guy with his eyes swollen shut and a drainage tube off of his head. I would love to talk with this mom if any of you may know who is Leah, from Florida's mom please send me the contact info.

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    Sawyer's_Mom Sawyer's_Mom's Avatar
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    Sorry I can't help you there, but I know just want you mean though. I was looking at Julie's photo bucket pics last night of her son's (Alex) metopic surgery. I still cannot imagine Sawyer going through this and really looking like that. It just seems unreal to imagine it happening to your own child. I hope you find the mom you are looking for to get some support!! You are almost through this!! Hugs!!
    Amanda



    Mom to 3 boys
    Hayden - 1/8/05 - no cranio
    Mason - 3/15/07 - no cranio
    Sawyer - 9/15/09 - diagnosed as trigonocephaly secondary to metopic craniosynostosis 2/12/10
    Surgery 7/16/10 with Dr. Fearon & Dr. Sacco at Medical City Hospital in Dallas, TX.
    Loving life on the other side!!

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    Registered User Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet's Avatar
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    I think it's Seagrape (the member you are looking for)
    Mom to Noah (no cranio)
    Fiona (Metopic):
    Surgery #1 CVR/FOA 9-26-07 (age 10 months) Sick kids in Toronto with Dr. Phillips (PS) Dr Kulkarni (NS)
    Surgery #2 Cyst removed over left eye 9/08 Dr. Phillips (PS)
    Surgery #3 Cranioplasty 10-18-11 (almost 5 years old) for soft spots filled in with titanium plates/peek implant from bone resorption and scar revision. Dr. Phillips


  4. #4
    Alex's mama *jules* is on a distinguished road *jules*'s Avatar
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    sending you some hugs mama. I understand just how you're feeling. Before my Alex's surgey, I looked at many pics of newly post-op kiddos and just could not - for the life of me - imagine my child looking like that. I knew what to expect, but I wasn't really as prepared as I thought I was.

    I will say that the very first time I saw him after surgery, the swelling hadn't really set in yet and the most overwhelming feeling was relief. Relief that he had made it thru sugery (like a champ I must say) and that all the months of worry and anticipation were finally over. I was amazed at the immediate change in his appearance and knew that we had made the right decision to proceed with surgery.

    It wasn't until later that first night when I finally lost it. Seeing him so swollen and crying for me with tubes and wires everywhere was more than I could bear. I hadn't cried until that point. I remember sitting in a chair with him in my arms and trying to control my sobs so I wouldn't move him too much. It was very hard and thats the only moment I asked myself "OMG, what did I do to my baby!?". I will say that those feeling passed quickly and each day was easier than the one before.

    sorry...rambling :) I just wanted to share some of my experience and to say that you guys will get thru this just fine. If you need anything or have any questions you think I can help you with, please let me know.
    Julie
    mom of two boys
    Zachary Joseph Marquez 9/4/02 - no cranio
    Alexander Michael Marquez 9/2/08 - metopic cranio
    surgery 5/15/09 with Dr. Fearon & Dr. Sacco

    http://www.caringbridge.org/visit/alexmarquez

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    Brandon's mommy Gretchen Gretchen's Avatar
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    Oh yes, that horrible feeling yet somehow you cant seem to rip yourself away from the photos. I a weird theraputic way they helped. No it definitely doesnt prepare you but it does help you from feeling your not alone. I would watch "nezzys" Heathers video of Nick over and over and over again and just cry. But here we are on the other side. Somehow we made it...Hang in there momma, YOU WILL MAKE IT!
    Gretchen mommy to Andrew Charles 4/25/07, Brandon Danger (bicoronal synostosis) 7/12/09
    CVR/FOA done 2/5/10 - Dr. Scott Elton and Dr. Rodney Schmelzer of Banner Pediatric Spec.
    Cardons Childrens Center- Mesa, AZ
    www.crazylongtins.blogspot.com
    Hunter 9/9/99
    Brooke 11 6/6/98

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    Seagrape is on a distinguished road Seagrape's Avatar
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    Thanks for messaging me!! I messaged you back! I agree about everything shared here... it is very hard to hand over your baby!! And like most moms that had gone before me on CK, I found that I felt a huge relief after I handed her over. Well first my dh and I cried on the way to the waiting room, but then I felt relief...the waiting was over!!! We had both brought our MP3 players with praise/worship music on them...it helped so much to keep me at peace during her surgery. How can you worry when you are praying and trusting God.

    I felt sick when I saw her in recovery...honestly like someone had punched me in the gut. I felt that she must have thought I had betrayed her. It was an unexpected feeling that I don't remember anyone talking about so prepare yourself for the guilt. After a couple hours it subsided, and once I was filled in on what everything was and we made it to our own room I felt MUCH better. But I will never forget those first few minutes in there.

    I feel funny saying this...but the 5 days we spent in NICU after the surgery really were a blessing to us in many ways. She was getting awesome care and we knew everyday was one day closer to normal and home. Having 2 older kids at home...this was the longest my hubby and I had been away from them. I cannot tell you how nice it was to have long uninterrupted talks & be there with each other. We joked about what an expensive vacation it was. He stayed across the street in the special house where they gave us a room, and I stayed right there in NICU with Leah on a chair/bed. We got into a routine and Leah healed quickly. It's surprising how quickly they bounce back and quickly they eat again. and then nurse....that was awesome.

    As scary as this is....it could have been SO much worse. I feel blessed to have traveled that journey with Leah because I literally felt God's arms around me the entire journey. He is real and He held me...which is why I cry whenever I hear Natalie Grant's "Held." It's only in times like these when we truly feel the hand of God. I'll be in touch!!!
    Denise - Mom to three beautiful girls! *April 14th made 3 years since Leah's surgery!!

    Sarah - 12
    Rebecca - 8
    Leah - 3 yrs old - born Jan 17, 2008, right coronal cranio diagnosed at 2 weeks old

    Surgery date April 14, 2008 -
    Endoscopic-assisted CVR/FOA
    Joe DiMaggio Children's Hospital (Hollywood, FL)

    ~ Leah's blog

    ~ Creative Kitchen ~ My Food/Recipe Blog ~ cooking with wholesome, REAL foods!


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    Registered User Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet's Avatar
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    Handing Fiona over was one of the hardest things I had to ever do in my life, I wanted to turn and run, but once we were in the waiting room with all the other parents I felt a calm come over me, I trusted her doctors 100% and I just knew everything was going to be OK.
    When I first saw her in the PICU she had an oxygen tank over her head, and I saw tubes and IV's everywhere...but then I saw her beautiful round forehead and I felt weak in the knees, I remember just letting on a cry and saying "OH my God look at how wonderful she looks" and a nurse came over and put her hand on my shoulder. I'll never forget it.
    It's hard when the swelling kicks in, but remember it doesn't last forever, and one day you'll look back (like me 2-1/2 years later) and knew that you did the best thing for your baby.
    Mom to Noah (no cranio)
    Fiona (Metopic):
    Surgery #1 CVR/FOA 9-26-07 (age 10 months) Sick kids in Toronto with Dr. Phillips (PS) Dr Kulkarni (NS)
    Surgery #2 Cyst removed over left eye 9/08 Dr. Phillips (PS)
    Surgery #3 Cranioplasty 10-18-11 (almost 5 years old) for soft spots filled in with titanium plates/peek implant from bone resorption and scar revision. Dr. Phillips


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    Chases mom a_jessie a_jessie's Avatar
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    thank you all so much for your support, i dont know where i would be without all the support. I feel like craniokids has become such an integral part of chase's journey.

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    Maya's mom Etinker is just starting out Etinker's Avatar
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    The days before were the toughest I felt. imagining everything that would/could happen. As hard as surgery was I could be in mom mode and take care of Maya. Make sure she was eating and the nurses were on top of her meds. Hold her close. There was nothing left to imagine. As tough as looking at pics was I'm glad I did and so was my husband. It's not the same as seeing your own kid but I can't even imagine how unprepared I would have been if I hadn't.
    Good luck and keep us posted!
    Beth
    Mother of Thea (12/30/05)
    Maya (3/3/09) Left coronal - CVR/FOA 11/2/09 , eye muscle surgeries 2/19/10, 7/16/10

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    Chases mom a_jessie a_jessie's Avatar
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    I had the first somewhat peaceful day, Chase was baptized this morning AND he kept down the steroids that he was started on in preparation for his surgery. Chase has both reactive airway disease as well as severe reflux, so in order to get his airways ready for intubation, he was put on oral steroids..... the problem we thought we might encounter was that he wouldnt be able to keep down the steroids b/c of the reflux. He surprised us all, and now he has another night at home,where he belongs! The docs want to make sure he gets the full amount of medication, so if at any point he throws up any of his medication, we have to admit him for IV meds.... please keep him in your prayers :) It is so nice to read how you all felt before/ during your little ones' surgeries. I feel like my family will be going in to this as prepared as possible.

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