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Haven't posted in a while, XP from SN board

sarahkatherine8sarahkatherine8
in Preemies

Since I was told this could be happening because DS was premature...

Jackson was just diagnosed with hydrocephalus and will need to have a shunt placed. He will be having an MRI later in the week (just did an ultrasound today), and then we will establish some sort of plan. He has no signs/symptoms other than a rapid growth in head circumference. That was the only reason the pedi ordered the test. We are also meeting with pedi neurosurgeon this week. Does anybody have a DC with this and any experience to share? I am a wreck but realize we are very lucky that it was caught so early and developmentally he is ahead for his adjusted age and showing no other signs. It is still hard not to feel a lot of sadness, anger, guilt, and tons of worry/anxiety.

I am really scared and looking for some reassurance. Sorry I've been so absent, the past month has been busy and now really crazy.

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Re: Haven't posted in a while, XP from SN board

  • lemen99lemen99 member
    I'm sorry I don't have any experience in this area, but I'm thinking of you and sending prayers.  That's scary!
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  • gobluegoblue
    We've had hydrocephalus "scares," but DS seems to not have it - he just has a very large head which they say he'll grow into, so I understand (somewhat) the anxiety you are feeling. We've had many ultrasounds, an MRI, and a CT scan.  The ultrasounds were all inconclusive, but the MRI (last February) came back fine, as did the CT scan (just last month).  While we were in the NICU several other babies had hydrocephalus and had the shunt put in.  From what I've read and learned from talking to other parents, it is scary but is treatable - much more so today than in the past.  Good luck.
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  • MomAgain??MomAgain??
    Your son is beautiful.  You must be frantic, looking on the internet for any info possible.  Although we are not dealing with the same situation I know how you must feel.  My son has had quite a few issues since birth (which was hard enuff to begin with).  With each one I felt compelled to find out as much as possible.  But be careful ....After doing my own online investigations I was usually more terrified than before.  A lot of times you find "worst-case senerios."  Question your peditrician on EVERYTHING, ask for a second opinion.  I think the hardest part of being Mommy to a Preemie is not being able to easily "fix" all of our babies issues imeadiatly. These little guys have been thru so much.  My heart goes out to you and little Jackson (said thru tears).  I will pray for you and your baby. 
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  • SWMcFarlandSWMcFarland member

    Please call me or email me.  I had no idea you were going through this.

    I'm here for whatever you need.  I can always fly home--my parents would LOVE to see Lily!!  :-)

    3/22/09 - Lily Grace, born at 33 weeks, 2 days
    9/12/14 - M/C @ 7 weeks, 1 day (ectopic)

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  • sarahkatherine8sarahkatherine8
    SWM~We just found out :( I was sort of in denial until the u/s the other day. It has been rollercoaster emotions since. Plus DH and I are dealing with our own issues and those have to be resolved pretty quick or set aside so that sucks. All of my family from the southeast have volunteered to fly in too! We could have a reunion for Jackson's shunt placement. Poor baby. We are really lucky to have so many people that call and check on him. Emailing commencing now :) I type way too much.
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