So ...

...considering all the fluid build-up in the baby, I asked the nurse what I thought to be a logical question: "How is her heart?" White noise, silence on the other end of the phone, embarrassment on my part - "Oh, my, I must have asked a dumb question!" Self-deprecation begins, my face is getting flushed, my mind races as I check my inventory of stored knowledge re: Human Anatomy and Physiology 101, the inner sanctums of the heart ...

It was not a dumb question. The nurse could have acknowledged that she just did not realize the trajectory my thoughts were taking from Point A to Point infinity ... But I was the one apologizing, offering up my lack of sleep as the source of my "confusion" and "babble". In reality, there was no confusion, nor was there any babble. (At least, not until the nurse's silence led me to believe my question was somehow "stupid".)

Once again, she is simply not "my baby" right now - at least, not as much as she is theirs. Its been seven weeks, with at least as many to come. So I must play the part of the ignoramus, keep my mouth shut, head down low, until this time passes and we are out of the forest-of-good -and-a-heck-of-a-lot-of-evil.

Wait For It ...

Emma needs another central line - the previous Broviac became infected. She has recovered from the infection enough to undergo a repeat surgery. Yesterday, the surgeons and the anesthesiologist called for consent. As they read the standard consent form to me, I heard myself repeatedly saying, "Yes, I understand", but, in my head, I only heard the final risk factor - it played itself over and over, and I just waited for them to utter it, to actually speak it, to make it clear, with no uncertainty ... just get to it already!!! With each item on their standard form checked off, I thought it would be the next one ... but, no, there was more. Allergic reactions (death), infection (death), respiratory issues (death), blah (death), blah (death), blah (death) ... The teacher from Charlie Brown or Snoopy or whatever the proper way to refer to that particular ... Peanuts, that's it! The teacher from the Peanuts cartoon made herself more clear to me than the three doctors and three nurses I had to give consent to on the phone yesterday. So I have come up with my own "Standard Consent Form" - I may very well print it out in large bold letters and pin it on her isolette:

"Yes" - I give consent for you to, once again, cut into my daughter's tiny body, putting her at risk of all the above. Because, if you do not do what you need to do, then she may well suffer from all of the above - and ... (wait for it) ... even death.

The irony of this conundrum is not lost on me.

One of the most difficult parts of our current plight (other than seeing my little girl hooked up to FOUR antibiotics, with an IV in one hand, a foot, and her neck, her tiny body swollen from its inability to flush her system properly) is the need to be in constant contact with so many people. As a home-schooler, I have enjoyed the luxury of being extremely ... picky, shall we say, when choosing with whom to share our time.

Now, that may sound like a snobbish statement, but, if you are naturally an introvert, and the art of the casual conversation eludes you, you may understand what a glorious and wonderful gift it is to not have to talk just for the sake of talking. (And, lest you think this odd, I am currently reading Surprised by Joy, by C.S. Lewis and have discovered he shared my penchant for solitude, and the absence of too much in the way of social interactions. So, I am in good company.)

My children enjoy the company of other children during outdoor play, and are wonderful companions to one another. They also participate in activities such as dance, to meet those all-important requirements so often spoke of in hushed tones - "proper socialization". I wonder of any person who has actually uttered that phrase as a counter-argument for home-schooling has ever - ever -carefully dissected what it is they are actually saying. "Do you allow your children to meet regularly with other children, in the absence of adults, so that they may learn the ways of the child, during the fleeting period of life known as childhood, the rules of which, oftentimes, must be properly counteracted by the proper and exacting disciplinary actions of the adult, for adulthood, a period of life that extends, in years, during a normal lifespan, far beyond those of childhood?"

A nurse in the hospital recently queried after my "socialization" measures when it was "discovered" that we home-school. I reverently replied with my standard, "They play with other children on a regular basis, and participate in extra-curricular activities". And after I opened my mouth, I was angry at myself for even allowing her to question me. What business it is of hers? My children are, from my point of view, being properly socialized in the company of adults. After all, that is the company they will keep for the majority of their lives. I could ask, who is raising your children, while you work 40-plus hours a week? But I respect both the desire and the need for mothers to work, having been in that place myself, so I would not actually utter those words just to defend myself.

Back to the need to be in the company of others ... It is difficult. It makes me feel ... exposed, vulnerable, dependent. And, unfortunately, this will probably be how it will be for a long time - many doctors' office visits, therapy sessions, etc. Our family dynamic has changed in so many ways. Do I need to re-invent myself, take some class to learn how to yuck-it-up? I want my baby home, but it will not be the same as when the others came home. Not.in.any.way.shape.or form.

Lacking in Deliberateness ...

There is wax in my 8 year-old's ear - I am pretty sure it was there a few days ago. I have yet to clean it out. I did manage to clean the fridge, and even mopped the floors. My blog was hit by some "Photobucket" garbage yesterday, and I managed to clean that up. We are doing school. We eat - not well, but we eat. The laundry situation is not critical. But it is all so disjointed. There is no deliberateness - it is simply an attempt to hold on, while willing time to pass quickly, to get us past this critical period in Emma's life to a point where she can really join the family. I know she is already one of us, but, if I were to be honest, there are periods during the day when I "forget" - I forget to think about her. It comes back in a rush -her existence, her being so far away, the fact that it has been five days since I have been able to go to her. What kind of parent "forgets" that they have a child in the NICU? What kind of parent allows their 8 yo to walk around with noticeable wax in her ear? What kind of parent holds her breath with each phone call to the hospital, wanting the update yet dreading any more bad news? What kind of parent prays it will be safe again - soon - yet, secretly, in those darker moments, wonders if it will ever feel safe again? I really need to go find some Q-tips.

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 ...

The baby is now two hours away - two hours to get there, three hours sitting with her, two hours back. I hate where she is - it is loud, and busy, and crowded, and impersonal. But they claim to be one of the best NICUs, and I have to believe that she is in the best place for her needs right now. But I can hate it ... and I do ... with every fiber of my being ... Hate is a terrible thing. It saps you of energy that can be more useful if directed toward a positive goal. But I have no goal, because it is all out of my control. Her needs are not needs I can meet, and if I allow myself to dwell upon that, I will become filled with a sense of despair - almost as productive an emotion as hate.

On Necrotizing Enterocolitis, Med-Evac Helicopters, and the Power of Prayer ...

When we walked into the NICU yesterday afternoon, my eyes stopped immediately on the monitor that read Emma's oxygen level - 52%! I knew something was terribly wrong. When I saw the nurse's face, my fears were confirmed. She said, "Emma is not having a good day". They suspect it is Necrotizing Enterocolitis. Here is a link to help understand this disease - http://kidshealth.org/parent/medical/digestive/nec.html#



They discontinued her feeds, put an IV in, started her on TPN and fats again, and were going to start an insulin drip, but then her glucose levels fell to within normal range again. She was put on antibiotics, and just was not as responsive as she had been. She did not want to be touched. She would not hold my finger.



When the doctor came in to discuss her condition, he said St. Christopher's Hospital for Children in Philadelphia was better equipped to provide care for Emma should she develop the more severe form of this condition, and require surgery. So provisions to have her air-lifted to Philadelphia were made. A team from the other hospital flew in and took over her care. They placed my baby in what looked like a soft-sided picnic cooler, with hoses and tubes and monitors - they were polite, and professional, and kind. But they were taking my baby even further away from me. We watched the entire time, through the helicopter lifting off from the roof-top. The neonatologist who was on the flight called as soon as they landed in Philadelphia, and told us that Emma did well with the flight. She is stable. As of now, there is no sign of perforation in her bowels. There is, however, a perforation in my heart.



Through all of this, I was amazed at the number of people who told us, "I will pray for you". Even the burly security guard, who allowed us access to the rooftop to watch the helicopter take off, said, "At times like this, I believe in the power of prayer". It has been comforting and humbling to glimpse a side of humanity I have not seen outside of Church on Sunday mornings. People who believe in more than just themselves, who believe in a power greater than themselves - people who BELIEVE - are taking care of my baby. I can not ask for more than that.