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March 17th, 2013, 02:58 PM
CrochetingMama CrochetingMama is offline
2XlinkedPHkids
Join Date: Jul 2012
Posts: 820
Okay so I'm going to warn again...some of these pictures can be disturbing. They are of Lily during the roughest time in her life. You have been warned. Don't look further down if you are easily bothered.

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I was recently reading Cora's story. She's a 5 day old that died while her mom was BFing her because of an undetected CHD. I've read it regularly and I cry every time. After I read it, I started looking at my blog (that I've half abandoned), but that I talk about the first few months of Lily's life in. Then I saw the pictures. And I remembered.

It used to bother me so badly to even look at these pictures. I took them because they were important, but God, I could barely look at them. They hurt. Even now, they hurt to see. But, I was doing a cover photo for facebook talking about the importance of pulse oximetry screening and I had captioned it "Pulse Ox - Because I'd rather see this (pointing at a surgery photo) than this (pointing at a gravestone)"

I know many of you have said you will get your babies tested, and I'm so thankful for that. I'm also aware that we have lurkers from other DDCs and people who might have shrugged off my pokes for pulse ox testing. So...

Maybe this will make an impact.

[IMG] LilyCICU[/IMG]
Lily After Surgery [/url]
Lily with Harry

The first one is Lily in the CICU (Cardiac Intensive Care Unit) prior to surgery. It is the last photo I have of her without the OHS (open heart surgery) scar on her chest. She was on life support and they had tied her arms to her legs to keep her from flailing and pulling her tube out. She was 3.5 months old.

The second one is a few hours after her OHS. Once I'd pulled myself together. This photo doesn't do justice to how....gray and lifeless she looked. They had her on a paralytic so she basically didn't even twitch. The first look at her after surgery nearly brought me to my knees. I held it together long enough to get out of the room before I lost it. (Of note: In the second picture, Look at her feet and you will see it. THAT is the 'pulse ox' I've talked so much about.)

The third one is where we actually weren't too far off from being discharged. Some friends (March Mommies) had sent Lily some flowers and Harry (the stuffed animal she's pictured with).

How true it is... I'd rather see those pictures any day than visiting Lily at a grave. That was the roughest time in her life, in my life, and I'd do it again in a second if the alternative was visiting her grave.

I'll do it with George, too, if I have to. But, God, I hope I don't have to. I'm filled with anxiety lately over this. I'll go through it again if need be...but I feel like twice will break me.
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