I'm having to restrain my poor baby :( - Vascular Birthmarks Foundation Forum
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  #1  
Old 05-30-2011, 09:45 PM
twinmommy twinmommy is offline
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Default I'm having to restrain my poor baby :(

Ruby's H. ulcerated and has gotten VERY large.

She has proven to be a relative of houdini, able to escape from ANY swaddle (and believe I've purchased every one on the market, muslin, cotton, you name it). In desperation I started googling baby restraints for surgery and found honey cuffs. I copied the idea and sewed her strips this morning with velcro, sherpa and clips.



Unfortunate for us this all happened on a holiday weekend, otherwise our specialist would have been in today and we would have demanded seeing him. He has not seen it since it has gotten this bad.

She started her beta blocker last Thursday... we haven't seen much change but then again her ulceration is so large it is hard to tell.

This has been a horrible week.
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Old 05-30-2011, 09:59 PM
missy missy is offline
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As bad as things are, I have a bit of praise for you: GOOD for YOU for figuring out how to make one yourself!! That is the cutest little restraint I have ever seen!

But I'm terribly sorry for your daughter and you. Let us know what happens next week.

Missy
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  #3  
Old 05-30-2011, 10:14 PM
twinmommy twinmommy is offline
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a) super glad I had purchased diaper covers, never even started cloth diapering but was planning to after they were a little bigger
b) was double super glad I had made those pacifier clips (never even used them!) because of the holiday, wouldn't have been able to go to fabric store until tomorrow.

She seems so much happier than being swaddled, even though she is ticked off that she's unable to fling her arms.
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Old 05-31-2011, 02:10 AM
KatieG KatieG is offline
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Oh poor thing. I hope you can get in to see someone ASAP.
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Old 06-01-2011, 01:38 PM
smurph smurph is offline
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Oh my goodness, poor baby. That looks like it hurts! I hope you get someone to see you right away. Good luck!
shannon
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  #6  
Old 06-02-2011, 12:35 AM
twinmommy twinmommy is offline
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We are moving forward with surgery, it is scheduled for Friday morning. The specialist at CHLA gave us the option to wait and see if the beta blocker kicked in, but last night it was bleeding and we really cannot put her thru this pain any longer.

I look forward to this being removed and having my sweet happy baby back. It is so hard to hear that cry, that cry that sounds like no other cry - and the pain on her face is unbearable.

I would love to know that others have turned to surgery and were happy with their decision.
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  #7  
Old 06-02-2011, 01:44 AM
KatieG KatieG is offline
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Best of luck! I had my daughter's H removed at 4.5 months old. It was the best decision and I don't regret it for a moment. She is now 14 months old and you can't even tell she ever had anything in that spot.

Email me if you have any questions! katiegalvin02@yahoo.com
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  #8  
Old 06-02-2011, 01:52 AM
missy missy is offline
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Bless your heart! We'll be thinking of you on Friday and be SURE to come back and let us know how things are.



Missy
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  #9  
Old 06-02-2011, 02:04 AM
abatie abatie is offline
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Best of luck! I can't imagine what you are going through.
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Old 06-02-2011, 03:10 AM
emilygallese emilygallese is offline
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I just read your post and couldn't help but to comment..... You are being so strong for your little pumpkin, she is so very lucky to have you. Best of luck with the upcoming surgery, for sure the right decision.
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