Despair

I'm sleep-deprived, sad, and not very hopeful.  There, it's all out there.  So there's the tone of this blog entry.  Sorry, but it is what it is.

About last night's sleep study: After the first one showed that she has central sleep apnea (controlled by the brain), Dr. Gault immediately wanted Emma in another sleep study to figure out what particular CPAP mask and what pressure settings, etc. would be the best.  That was last night, and it was one of the worst nights of our lives.  When Emma chokes, it's heartbreaking, but for her - that's normal.  She even smiles at us sometimes in the middle of it.  But last night, she screamed for the majority of the night.  I can't even tell you how pitiful and gut-wrenching it was.  She had a nasal canula shoved up her nose, with a mask strapped to her face.  The mask was blowing puffs of air in her nose.  She just hated it; she was miserable and pitiful.  Unfortunately, when she DID sleep, she breathed through her mouth, which is the opposite of what we want becasuse the mask only goes over her nose.  We couldn't put the binky in her mouth to force her to breathe through her nose (and she REALLY wanted it because it's comforting to her) because she couldn't close her mouth around it because the bottom of the mask got in the way (run-on sentence, I know).  We cut the binky as much as we possibly could, but it still didn't work.  So then she got congested because she was crying so much.  We could hear the tech puffing the air via the computer to try to establish a rhythm for Emma, but then Emma would just inhale through her mouth on her own rhythm (or lack thereof).  Basically last night was pointless, except to show us that the mask didn't work at all.  The only other alternative (I think) at this point is to put a chin strap on her so that her mouth is forced shut, and then she HAS to breathe through her nose.  And it completely shatters me to think that we're going to have to basically force her mouth shut.  I have no idea what happens next.  I've done my job.  Someone will get in touch with us sometime.  We have a follow-up appointment with Dr. Gault on March 31, but I feel like something will happen before then.

I have pictures, but I just don't have it in me right now to upload and post them. Later.

Emma also had a CT at 10:00 this morning, as if I didn't spend enough time at the hospital last night.  She was a real trooper today; actually, not a trooper - a real delight.  She took a couple long naps, and my mom and I ran errands while she slept in the car for 2 hours.  It really was great to spend some time with my mom and Emma.  If I had sat behind my desk today, I'd probably still be facedown on it.  But I drank approximately one gallon of coffee and stayed busy.  That's how I survived today - my mom, my daughter, and my coffee.

I know God hasn't forsaken us and that He's still here, but sometimes I just wish He felt a little more present.  Like maybe not allowing this relatively "safe" birth defect to snowball into something life-threatening.  All you moms out there with healthy children, please hug them and thank God that they can swallow and breathe.  I'd give anything for that right now.  Be thankful for what you have.  I know that some kids with spina bifida are worse off than Emma.  And I am thankful that she breathes well when she's awake, that she has rolled across the den from me in the last two minutes, and that she has been saying, "Mamamamamamamamamamamama" all day.