It's Final.

Well I finally had my oral surgery yesterday(wisdom teeth + 1) and let me tell you it was hell. I remember the doctor saying "youre going to start feeling really funny.." and I was out. Next thing im walking to a room and started crying. Yeah I felt pretty silly. I couldnt talk but tried to tell Ryon it was the beeping of the machines that was making me cry...not the pain(yet), because I was pretty numb. Before the surgery when they were hooking leads up to me, putting in the IV and checking my BP and pulse...I got pretty upset but held it in. The doctor also said "well youre beeping.." and I was said "whats that supposed to mean?"..."youre alive". I guess thats a good thing...

So yesterday pretty much sucked...and today its not much better. I have pain meds but they dont seem to completely make it go away...I suppose I need to give it time. I think ive heard that enough this year to last a lifetime!!

On another note:  We FINALLY got Bella's autopsy!! What a relief. We have been waiting for this letter for some time now. I have mixed feelings about it.


22day old female born at full term from an outside hospital. Uneventful gestation and delivery with apgar scores of 8 and 9. About 15 hours after birth she was in respiratory distress. An echo showed normal heart with severe pulmonary hypertension. She was flown to uva and placed on ecmo for 3 days. She did not improve during her hospital stay despite maximal support. On 1/11/10 she had decreased oxygen saturations and lower bp despite increasing vasoactive medication. We as parents decided to redirect her care. At 1am on 1/12/10 the endotracheal tube was removed...and the autopsy says "the patient expired at 1:40am".

Ryon read the report aloud and all I kept hearing was "normal....normal....normal...." which of course made me cry. She was PERFECT except for this liiiitttle thing called ACD that has no cure. Well ok its not little...its huge when youre talking about your child's life.

ACD babies usually have other abnormalities. This is what the report said:

"Alveolar capillary dysplasia can be associated with other major structural abnormalities involving the cardiovascular, gastrointestinal, genitourinary, or musculoskeletal systems. In this particular case, no other abnormalities were present."

The report was 6 pages about how perfect she was...except for respiratory(acd/mpv).

Every case Ive read about, there seemed to be something else. So we were expecting the same...

I suppose this is good. Everything was done as it should have been. She didnt have any other problems and we didnt hurt her in the process(no brain bleeds from ecmo or digestive/colon problems because of the viagra etc). I guess whats still upsetting is she ONLY had this 1 issue...and it couldn't be fixed.

Hoping to hear from Dr. Sen soon so we can be a part of the study...to help find a cause & a cure.

1 comment:

  1. Hello! That was pretty tough. Glad you've surpassed them all. A friend also told me about his surgery. It was a bit painful, though. But now, he felt far way better than before. Anyway, you guys stay happy and inspired for your little angel. =]