Intraventricular hemorrhage (IVH)

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For today, I copied a recent post from my blog.  I apologize in advance since I know that for some of you it will be a repeat, but it is a story that I wanted to share with all of our readers.

There really are just a plethora of frightening things that you discover when you are pregnant with multiples, especially higher order multiples such as triplets.  Premature delivery is inevitable with triplets since very few women are able to carry past 32 weeks (the average), so you know from the very beginning that you can expect NICU time for your babies.  There are a lucky few who are able to carry their babies long enough to bring them home when they are discharged, but the overwhelming majority of women have to leave their babies behind in the NICU for at least a week or two.  When I was pregnant with my triplets and reaching out to find people who had been through what I was going through, I found a lot of stories that terrified me.  So I searched for the ones that defied the odds and had unexpected outcomes.  And I held onto those stories because they gave me hope.

Here is our story…

August 13, 2008

cameron had her weekly physical therapy appointment this morning and jane (her p/t) was absolutely thrilled to see her walking. she kept watching her with a mix of awe and wonder and was so pleased with her rapid progress over the past few weeks. she was just here on friday, we missed our regular monday appointment so she came specifically to see cameron standing for the 1st time; and now, less than a week later, jane was able to see cameron take her 1st steps. i am beyond happy to tell you that jane was also thrilled (and a bit surprised) to see absolutely no asymmetry. none whatsoever. no tightness, no spasms, nothing. cameron was using both sides of her body equally and there didn’t seem to be any of the issues present that her p/t (secretly) feared might appear as she began walking and utilizing more of her body and gaining strength. but, she was walking with perfect symmetry.

why, you ask, is that such a big deal?

allow me to explain…

i don’t talk about this often because we prefer to focus on the positives of our story and relish the amazing miracles our little preemies are. but, it isn’t a secret that the peaches had a pretty rough start to their lives; being born almost 11 weeks early they were so tiny, so frail and so sick. what you may not know, is that cameron, in particular, had it incredibly rough for the first couple of weeks. i wasn’t even able to hold her until she was almost 2 weeks old. we were not sure if she was going to live long enough to come home with us, much less grow to celebrate her 1st birthday. or learn to do the eensy weensy spider. or eat. or breastfeed. or be able to sign all done. or giggle. or play. or walk.

she had a pretty severe brain bleed that was detected shortly after birth. her dr’s are almost positive it occurred while she was in utero and is a result of the stress the twin-to-twin transfusion was placing on her little body. the decelerations and lack of veritability in her heart-rate are the reasons the dr’s decided to deliver the peaches. based on the severity of her brain bleed i know that cameron would not have survived much longer in my womb and it is all part of why i am actually thankful that the peaches were delivered so early. brain bleeds are graded on a scale from I to IV, with IV being the worst. she had a bi-lateral grade II, with several areas of a grade IV. the bleed was so severe, that when the dr. read the scan, he looked up at john and told him that her brain bleed was probably not compatible with life. and if by some chance it did happen to be compatible with life, it would probably not be compatible with any kind of quality life.

cameron proved the dr’s wrong and continued to live. and as she was healing and growing, we were told often that she would have issues with all sorts of things. we were told that it was highly likely that she would develop cerebral palsy. we were told to expect moderate to severe developmental delays; in all areas. we were told it would be a long while before she was ready to come home. but, of course, cameron kept thriving and she was able to come home with us only 3 days after james and 4 days before ella. since her follow up brain scans showed that her bleed was resolving on its own, when she was released there was no need to see a neurologist. everything was left to just “wait and see.”

we had no idea what to expect from cameron, but we knew she was determined and we knew she was strong, so we decided to focus on the positives. it was an unspoken agreement, but neither john nor i have ever given cameron any reason to think she is different. we expect the same things from her that we expect from james and ella. and honestly, the only special treatment cameron gets is from her physical therapist. (and believe me, i tried to enroll the other 2 peaches in p/t along with her.) however, i know that despite the brave face, secretly both john and i have been holding our breath. scared to see what the residual effects of cameron’s brain bleed are. just waiting to see what would happen.

we are not naive. we know that we still have a long road ahead of us before she is completely out of the woods in terms of risk. and we know that there is still the chance that she could have delays and issues that come up as she gets older.

but we are okay with that.

we were told that cameron may not live. and if she were to live, her life would not have any kind of quality.

and yet, here she is today…absolutely perfect. eating almost anything and loving it all. giving tons and tons of kisses. waving hello and goodbye. signing and smiling. laughing and playing. jumping and dancing. talking and singing. quacking and oinking. standing and walking.

and now? even though i have been grateful and thankful and in awe of her all along, i am not scared anymore. and i am not holding my breath. instead, i am ready to celebrate.

i am ready to celebrate for cameron. i am ready to celebrate with cameron. i am just ready to celebrate such a miraculous little life.

cameron grace, you are one in a million baby girl. one in a million. and we couldn’t be prouder.

(and as your aunt jordie just texted me upon hearing the news…go roomba on kicking a@% in life.)

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5 thoughts on “Intraventricular hemorrhage (IVH)”

  1. I have a little miracle too. I almost lost him at birth and then at 4 days old. He is 8 months now and I still wait with baited breath for each milestone. He is doing wonderful just like your Cameron. Thank you for such a heartfelt, honest and vulnerable post.

  2. Wow, you are one strong mom not only to have triplets but also to be so positive and such an inspiration. You rule! Thanks for sharing your story and hopefully this can help someone!

  3. My daughter is 7 weeks old and has also had IVH, unlike yourself my daughter was not premature and consultants etc do not know what caused this.

    We are still in the early stages to try and find out what damage if any, the only signs she is showing at moment is she always looks to the left and not yet really responding to me or her Dad, but could this just be her being just a late developer and nothing to do with IVH?

    We are due to meet the consultant middle of november so we can ask more questions.

    I’m trying so hard to be positive as Isabel is such a beautiful baby and we love her so much.

    Reading your story has given me hope at this very dark and distressing time.
    Thank you
    xxxx

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