Pathology report is in and stitches are out.

Turns out that I was wrong all along.

It was an encephalocele. My daughter had part of her brain hanging out of her head. Thank God it’s over for now. We’ll know more as she does or does not reach her milestones.

Jesus.

I’ve never been so tired in my life.

Comments

comments

66 thoughts on “White Matter

  1. Good God. Is her surgery the end of it or is there more that may need to be done? I hope the prior. Thinking of you and your little gorgeous girl as always, Becky.

  2. Ok..wait. So, I haven’t said anything up until this point – because I knew what in my head was going to sound totally supportive and loving was going to come out sounding lame and stupid…well, because I’m an idiot. But, are you done though? I mean – you’re finished with this right? Can you go back to the pharmacy to hit that woman to make yourself feel better…Cause I think if I were you at this point my head would explode.

    See…I suck at this. I’m sorry you had to go through this. Truly. She’s beautiful, she really is.

  3. OMG, what does that mean? That she’s going to be fine?

    Honestly, I think I’d be chugging a bottle of rum a day if I were in your shoes. Or vodka, as it were.

  4. Man, that sucks. I’m sorry.

    I hope that it’s the end of it though, that she reaches her milestones on time, and it’s all a bad memory.

  5. How could the speed surgeon have missed this? You would think he would know the difference between brain tissue and fluid???

    However – the website in the link says:

    “Even large protrusions can often be removed without causing major functional disability.”

    Amelia had a small protrusion. I pray that removing it didn’t do any damage.

    You need a good night’s sleep – can you pump enough milk to fill a few bottles and go to a nice hotel for a night? (I’m thinking that even if you fill a few bottles, if you sleep at home, you’ll hear her cry when she wakes up.) Will she even drink a bottle? You may want to try giving her breast milk in a bottle every so often, so you can go out and do things like see a movie, take a kick boxing lesson, or go to a tablecloth restaurant a few times.

  6. I’ll remain forever hopeful that you have a daughter who bucks all odds and, without question, grows up strong and vibrant and curious and delightful. I’m glad you have answers now, I’m glad the surgery is done, and I’m glad you have a baby who is thriving and is loved.

    I’ll also remain hopeful you get some rest!

  7. Geez, that page you linked to is scary. I hope Amelia hits all her milestones and that this will be a distant memory someday soon. Hope you can get some rest.

  8. ok I know my post above is lame…….. I didnt mean it to come out so blase……… I just was so badly hoping that you would get the all clear we are so done with this kind of report. I am SURE amelia will hit her milestones….. but damn it totally sucks that you have to worry about it.

  9. oh my goodness! Aren’t you sort of relieved that you didn’t know it was actual encephalocele all along? As if you weren’t a wreck up until now…

    Hopefully she’ll do great with all the milestones. Surviving birth and surgery being the first two.

  10. how scary. i am glad that the surgery was success. my daughter had a fairly sever brain bleed when she was in the nicu and all is going perfectly well today, in fact her language skills are around 26 months. she is 20 months + born 11 weeks early. the healing power of the brain is incredible. hugs + prayers.

  11. I agree thank god babies brains have enormous healing power and they can overcome so much. Hope you can rest now and just worry about getting everyone well and watching baby Amelia grow and thrive. She’s your daughter you know she’s going to kick some serious ass. Have a glass of wine and take care. I’m lame too…LOL

  12. Holy.hell.
    I’m glad she’s OK.
    (Also? Sorry for the comment love absence. Am now all caught up on your life and am officially tired on your behalf.)

  13. Whew! Thank God that is behind you. Now, you must stay strong for your family……….they need you.
    Hang in there, there are so many positive vibes being sent your way, the results can ONLY be wonderful!

  14. i’m glad that you finally have an answer (although not the best answer, clearly) and i hope that this event turns into nothing more than fodder for a good “2 truths and lie” game later on in amelia’s life. she’ll be chasing her brothers in no time!

  15. The thing that keeps me going is that a baby’s brain is so resiliant and works around any damage that may have happened. (I am seeing that first hand every day!) I know it is those scary what ifs that ALWAYS brings me down, and most never come to fruition. I just try to live in the today.

    It has to be a great sign that the operation was so simple, making your neurosurgeon even think that she did not have an encephalocele. Have faith in Amelia. I bet she is going to just flourish in your loving care! (Hey, I can’t wait to see her run in to her neuro’s office and flip him the bird, too!)

    Hugs,
    Stacie

  16. Delurking to say, “Holy Crap!” That info on that link made me freak out, too. The good news is you can see her and hold her and she is doing okay. Never mind that other stuff.

  17. Oh, Becky. I am so sorry this wasn’t the uncomplicated news you needed. I am thinking of you and sending calm and vodka vibes. Oy.

  18. Well, better to get the scary news after the fact. Get someone to come and watch the kids so you can take a mental health break – even if it’s an hour to go to get a massage or manicure. In the long run, Amelia will be OK – she’s got her mom and dad to take care of her.

  19. She’s been a trooper already and has done so much. She’ll beat this one down. I’m holding all in my prayers.

  20. becky, as it was on the back of her head, there is a really positive way to look at it. if she follows you visually, her occipital lobe’s probably okay. if she’s interactive, her cerebellum’s probably okay too.

    things like balance might not be her best bet later in life, but do you want a ballerina or figure skater anyway? i mean, football and swimming are way cooler sports that don’t require as much balance 🙂

  21. I can’t imagine how scary all this would be. I hope everything turns out okay and also hope you’re able to get some rest. You’ll both be in my thoughts, hoping for the best.

  22. She’s perfect. Kids (and brains) are extremely resilient and I honestly believe that she will hit her milestones as she is supposed to. All she needs are great parents and she has those. xoxo

  23. I don’t know much about brains, but I was once told that people don’t actually use their whole brain – so maybe the part that got cut off was just extra. Hopefully.

  24. Oh, God. I wish you just got to sit back and enjoy your sweet girl without having to worry more than every parent worries. Do your best, enjoy the moments when all you’re thinking about is how wonderful she is, and I hope that soon you will get evidence that she is on track and you don’t have anything to worry about.

  25. Now I’m confused, but if I read your post correctly, it’s a “wait and see?”

    Either way Love, you must be utterly drained. A pill and a cocktail is exactly what you need.

    In the event that doesn’t work, sending prayers and good thoughts your way.

  26. Holy shit! I’m actually glad you didn’t know beforehand. You were flipped out enough. So, this just means we watch for delays and things right? Nothing else to “worry” about? Since her brain is now fully contained in her precious noggin?

  27. God, what a blow. I am glad her stitches are out. I’m hoping the fear and exhaustion ease as you see her thriving.

  28. Knowing is better than not knowing. She seems to be focusing well judging by the pics. That’s got to be a good sign. And, hey, she’ll have a great story to tell and an excuse for anything she does that’s dumb for the rest of her life.

  29. I know you must be struggling to maintain sanity right now. I hate that this is so difficult, but I hope and pray for the best outcome possible for both of you!

    much love

  30. Good God. What news to fucking wake up to, huh?

    But listen, it seems optimistic that the surgery went so well and so fast. plus Amelia came out fiesty and eating, she’s responding to you and to the world around her, she’s beautiful and perfect.

    I’m not going to tell you not to worry, because of course it’s worrisome, but I will say that I have every faith that she will be running circles around her brothers in no time. I’m thinking of you and sweet Amelia.

  31. She’s going to be just fine. As others have said before, the baby brain is very resilient. It’s firing up new neurons and pathways every millisecond. I know that doesn’t help the worry much, especially in your sleep-deprived state. The important thing is that the surgery is over and she’s home with you doing exactly what a newborn should – preventing everyone from getting any sleep! Big hugs and lots of love coming your way, my friend.

  32. God, I feel like a celebrity just commented on my blog. Thanks for the compliment. You are my idol. I hope you don’t gag with the next post. I did get my hipmelon sling thanks to your “wayward son” post. I think about you every day and have the utmost respect for you as a mother and a woman. It sounds cheesy, but there’s no other way to say it: keep up the good work. We are all rooting for you.

  33. Great day. I thought it was over. I’m sorry. No matter what we all say, your still gonna worry.
    I hope and pray everything turns out well for her.

  34. Becks, I’m sure that whatever happens, you and the Daver are going to handle it like champions. The worst is over, hopefully. She’s alive, she’s healthy, and she’s in the thoughts and prayers of many people. Best wishes.

  35. Just compare it to all the brain cells we destroyed with drugs & alcohol. You never really miss’em. Except when you can’t remember much, but she hasn’t done anything yet so there’s nothing to forget. It’s all gonna get better from here on in. xoxoxoxoxoxoxoxo

  36. You know I’m thinking about you always. This news is suckier than sucky but, like others said, it’s wait and see and she could be just fine. What are the doctors saying about how severe it was? I try to stay off of website like the one you directed us to because they always make things sound more dire than they are. I’m on team “She’s Gonna Be Fine!” But I understand the worry. Jesus do I understand.

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