Too many tests

Its been a rough week-a long visit with the cardiologist on Tuesday and an EEG this morning. Two echocardiagrams, an EKG and a chest x-ray were performed on Tuesday. Dr. P thought she saw a second hole, which would have meant that Hattie has had a much more significant heart defect than we thought. She actually told me that this would mean open heart surgery by the end of the summer. Thankfully, there is no second hole. Hattie still has a large atrial septal defect, which will need to be repaired, but we hope that won't happen until she's 2 or 3. In March Dr. P mentioned that she was optimistic that the hole will close on its own. She no longer believes that to be the case, but its amazing what the words "emergency open heart" will do for your perspective.

And then today. Ugh. Hattie had to be sleep deprived for this test, which meant bath time at 11pm and waking her from a deep sleep very very early this morning. Anyone who has spent months celebrating every successful attempt to help an infant fall asleep will understand how much I did not enjoy interrupting that slumber.

We went to the hospital and I really was not prepared for anything to be painful. This is a non-invasive test. It turned out to be the most miserable procedure we've had done so far. I don't know if it was actually painful or if the problem was Hattie's exhaustion. The tech had to mark her head with what looked like a colored pencil. I know this was painful because the woman(who had a very gentle demeanor) had to rub the stupid thing into my daughter's scalp for the marks to show up. I cannot wait to get the hospital survey, for once I will fill out the damn thing. Then she rubs an abrasive cream on each spot, dips the electrode in some goop that looks like the wax I shoved in my mouth when I had some kind of dental spacers as a kid. She sticks the goopy electrode on Hattie's head, covers it with a patch, puts industrial strength glue on the patch, and blows compressed air over the top. Repeat 25 times. Hattie is not a fan. In fact, she cried every time the woman touched her, even screamed a few times. My baby does not scream. She fusses, communicates, moans. She does not scream. This was worse than immunizations, even double leg immunizations.

Whoops, I got a little worked up there. Most days I don't think of us as a special needs family, but today I did. Babies shouldn't have to experience stress like that. I did what I could to minimize it-insisted on breaks, nursed throughout, held her the whole time-but it still sucked. And I know that there are babies who experience much worse, medically and otherwise. But it still sucked.