Madeleine’s Brain

IMAG0273Despite being born super early, Madeleine has done a pretty awesome job of being alive.  Our little warrior girl came off of her ventilator at a few days old, has been eating like a champ since day one, and has generally just been spending her days being the tiny rock star that she is.  We have now learned though, that Madeleine is having some trouble with her brain.

A bleed that occurred in Madeleine’s brain early on resulted in a clot that is now basically clogging up the flow of cerebrospinal fluid in the ventricles of her brain and spine.  Her ventricles are increasing in size as a result, and although her little baby head is capable of expanding somewhat to accommodate, she may require surgery if the ventricles continue to dilate.  Since she is such a tiny little one (not yet even a kilo), this is super bad news.

On Monday, Madeleine will be having a follow-up head ultrasound to see what is happening, and whether her ventricles are getting larger. Of course, we are hoping that our sweet girl will be able to avoid surgery (or any other invasive procedures).  We are trying to be as optimistic as possible, but this is her first major issue, and it feels pretty devastating.  We would appreciate your thoughts and prayers for our beautiful girl.


6 thoughts on “Madeleine’s Brain

  1. Go babies go!!!!!!!!!! You can do it! You have an awesome Mom and Dad who are cheering you on. They have so much love to give and will be awesome to live with.
    Will be keeping you close in thought and prayer. Sending you peace and strength. If you need an other set of lips, let me know :)
    Love you both!

  2. My thoughts and prayers are with all of you Alana. I am wishing all the best for Madeleine’s and Reid’s health and well-being. Stay strong and always hope for the best, they are getting very good care and it sounds like they are strong little troopers. Best wishes and I hope everything works out ok.

  3. Pingback: NICU Central | Madeleine & Reid

  4. I gave birth to my son at 24+6 weeks just two weeks ago. He has just been diagnosed with a grade 3 brain bleed and I am terrified. Thank you so much for sharing your story of your beautiful twins, this is exactly the kind of inspiration that I needed to read right now. All my best wishes to you x.

    • Mel – I am so sorry that you are going through this. I remember those first few weeks as a blur of pain and fear and helplessness, and all I can say is I hope that you are hanging in there as best you can. I know how much I wished someone could just tell me how it was all going to end, what the future would look like, and it is SO FRUSTRATING that no one can. On the other hand…the good news is that the possibilities are still so open. Their tiny little brains are so plastic and capable of so much healing because they are still growing so much. The best case scenarios are still totally possible for your son, as awful as it seems right now!!

      I will be writing about this soon, but we went to get the results of Madeleine’s first MRI scan since her surgery this morning, and her surgeon told us that her ventricles have pretty much fully recovered. She likely does have damage to her brain somewhere, since the bleed and hydrocephalus were fairly severe, but her brain has adapted a great deal and she is walking and saying a few words and is just completely hilarious and sweet and wonderful – basically right where she should be for her corrected age. I know that not all IVH/hydrocephalus babies have happy endings, but I want to you know that nothing is off the table for your little boy right now, and the best thing you can do (as hard as it seems right now) is have hope. You will figure it out no matter what the future looks like, but I’ve seen first hand how incredible these little preemie fighters are, and I’m sure your little guy is a warrior too! Wishing you all the best – please keep me posted, or e-mail me if you ever feel like you want to talk to someone who’s been there.

      • Hi Alana,
        Thankyou for your kind words and wisdom. Great news for your little girl, so pleased it has turned out ok for you. Will keep you updated on my little man, I hope he is as strong as your little warriors x.

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