On Edge...

I'm watching Niki like a hawk right now. As a matter of fact, I'm holding her as I type this entry.

I suspect that she had a little GI bleed shortly after we came home. She had a bit of blood in her spit up (twice!) and it was not fun. (For me, anyway.) Today was a "no factor day" (NFD) so I know her FVII level is low. Factor VII has a very short half-life and only lasts about 3-4 hours in the body. I'm always on edge when it's a NFD because I feel like she's swimming without a life jacket!

She is definitely not teething so the blood surprised me. (Some babies with hemophilia will bleed once their teeth start to cut.) One can only surmise that she's having a dreaded GI bleed, right? Naturally, we were concerned so we contacted the hematologist on-call. The doctor advised us to give Niki her factor (which we promptly did) and she was cranky ever since. My poor girl JUST fell asleep. Niki is a laid back baby and this is the first time I can honestly classify her crying as inconsolable. This, of course, placed me on "red alert". Unfortunately, this also turned out to be the time that John had to go to work. He helped me calm her down, but I was not feeling very confident about her crying episode. She hardly ever cries. I could've blamed her unusual behavior on "normal baby stuff", but I don't EVER disregard anything anymore. I learned my lesson. Besides, the last time John had to go to work when one of our babies was "acting funny" didn't turn out so well.

That was the night Ethan had his head bleed.

Hopefully, my paranoia is justifiable because I often second guess myself. Niki is fine and I know this. She's finally sleeping and her factor likely stopped the bleed, but I'm still a nervous wreck. I'm a nut, I know. I suppose I just need to get used to the idea of the inevitable. She's gonna bleed! We just won't know when. Even though her hematologist says that Niki's presenting as a "mild" so far, the fact that she's a "severe" like Ethan continues to keep me on edge. She was born without FVII just like Ethan was. However, I do find some comfort in the fact that she's getting her prophy (preventative treatment) dose of factor. I'm not a fan of her Broviac, but it sure is convenient when we need to give her factor! BTW - Get used to the medical jargon folks, it's here to stay! Side note: Hemophiliacs can have symptoms that present as a "true severe" (frequent bleeds) or have symptoms that present as a "mild" (minimal bleeding). Ethan was a true severe, obviously.The only reason why she "presents" as a mild is because she has prophy, but I have no doubt in my mind that she's a true severe like Ethan.

Meanwhile, I just can't wait until she can tell me when she's having a bleed.