Re-Intubated ...

Yup. And now, no feeds, treatment for PDA, and she will remain on the ventilator until she has grown some - which she will not do much of because she is off the feeds! Lord, please let me off this particular ride, because I don't like it.

Articles of interest:
Apnea of Prematurity: http://www.texaschildrenspediatrics.org/healthlibrary/pa_apnea_hhg.aspx

Patent Ductus Arteriosus: http://www.healthsystem.virginia.edu/uvahealth/peds_cardiac/pda.cfm

Glimpses of Hope ... and The Brighter Side of the Hospital ...

The hat intended for my daughter's head ...





















And one of the murals in the ground floor eating area.

















Another mural ...

SiPAP ...

Emma was extubated yesterday. She was put on SiPAP (http://www.viasyshealthcare.com/prod_serv/downloads/197_SiPAP_Brochure.pdf). She was "naked" (minus tubes and tape) for a minute or two while they performed the transition, and we finally got to see her face. She is beautiful. She is also feisty. She grabbed hold of the side strap on her little helmet (see the picture) and was pulling at it. The nurses keep placing sandbags on her limbs to keep her from tangling herself in her lines, and she keeps getting those long limbs out and grabbing at everything. It's that spunk that has brought her along this far.

Words and Terms I Wish I Didn't Know ...

1. Necrotizing Enterocolitis

2. Replogel Tube

3. Broviac Catheter

4. Desaturation

5. Vaso - something-or-other

6. Low Birth Weight

7. Patent Ductus Arteriosus

8. Septicemia

9. Brachycardia

10. Pre-viability

11,12,13 ...

(Spaces left for the ones yet to come - this is only the end of week 5.)

I re-read The Giver. It was on the shelf, and spoke to me. Not only is it chilling in regards to my particular situation with Emma, but it speaks volumes about the world in general, given the current path we are on - when laziness, greed, and want rule the world, we all will suffer in an attempt to reign in the rule-breakers.

Why did I want to read such a depressing novel? Well, a social worker actually said to me, "Oooh, you have private insurance? That's too bad." She sort of whispered it, like it was a dirty secret just between us. When did working hard to provide for one's family, and having insurance benefits to cover situations like this - situations you pray will never arise, but, if and when they do, at the very least, you can thank God that you have insurance - when did that become a negative? When exactly did the world change, when did the rules change? When did expectations of being provided for by some government agency come to be the norm? I don't really want my child to be singled out by her "Low-Birth Weight" Social Security Card. I don't want this unfortunate time in our lives to be our scarlet letter, or our banner ... or anything other than an "unfortunate time in our lives" that we will, hopefully, overcome, and move beyond. When I start looking for the government to handle this situation for me, I may very well have the government deciding to "handle" the situation for me - hence, The Giver.

Guilt ...

I was cleaning up a bit today, and came across the bottle bag I was using to take the minuscule droplets of milk I have been producing to the hospital. At the bottom of the bag, I found a syringe that must have been stuck - held in place by the label proclaiming, "The milk droplets contained herein belong to one 'Emma'". (The label does not really state that, but ...) I had an incredibly irrational thought that if only she had received the "droplets contained herein", then Emma would never have gotten ill and would still be doing well at the hospital in which she was born. This kind of thinking hits me now and again - yet another of the plethora of emotions, useless and otherwise ineffective, to help in any manner whatsoever.

What do you do when your baby is two hours away and you get a phone call at 11:30 pm, notifying you that her IV has failed and they are taking her into surgery - now, tonight - to try to place a central line? Please, someone, tell me ... what do you do? You can't just hop in the car and drive into the city at night, alone ... leaving the other children with their unconscious father ... knowing they might wake during the night and find you are not there. So I sit, and wait ... and try to put a thought or two together, praying for the phone to ring, telling me she is fine, resting in her isolette, stable once again ...