Hope Restored ...

Friday was a big meeting with the doctors and therapists caring for Emma. I prepared as if going to trial, ready to defend my daughter's worth, prove her capacity for healing, plead for another chance ... However, it was unnecessary. The dire prognosis bestowed upon her just a few days' prior was apparently unfounded. An apology was issued by the surgeon who shares a much more optimistic outlook of Emma's future. The prognosis was given by a doctor who really was unfamiliar with Emma - and only knew "NEC 4x" to be indicative of failure to feed. It was then shared by two other doctors who jumped on the bandwagon, so to speak, and in doing so crushed the spirit, hope, and faith of this mother. Thankfully, I recovered on all accounts. The team we met with was optimistic that, despite this set-back, Emma will eventually recover and be on her way to full-feeds once again. The surgeon believes there is probably an isolated area of tissue that is diseased and will need to be removed. However, finding that area is not a simple task. He wants to explore her intestines, via a laparoscopic procedure. This is the lesser of two evils presented to us, as the other option involves removing her intestines, laying them out, and investigating. Either way, the reality is, the damage could be within the intestinal wall, and therefore hidden from view. So, as of this moment, surgery, while a very real and probably completely necessary option, is not definite. What is definite is that Emma is alert, her belly is (radiographically) improved, and she has once again weathered a bout of NEC without requiring any respiratory support. I have many more gray hairs, but ... when she lays against me, in the little niche between my chin and my shoulder, and I marvel at how the fit is like a puzzle coming together, it is all worth it - the driving, the worrying, the pain of the unknown. She will join us, she will take her place among our family, she will be here everyday, and I will no longer need to ask a nurse, "How was Emma's day?". Because her day will be with me, and with the other children ... and I will know how it was ... because it will be here, in our home.

Out of the Mouth of Another One of My Babes ...

My children help keep me sane. My sweet little eight year old's note to me today: "Mommy, I love you with all my hate!" (We will continue to focus on spelling.)

I Missed It...

I took a ride up the mountain road today and was suddenly struck by the fact that it is fall. The later part of fall, past the point of the glorious autumnal bursts of colors, colors so beautiful when pitted against the cool blue of the sky it can make you ache inside, an ache of desire to preserve the scene forever. But I missed it this year, just failing to ever look up as I repeatedly traversed that mountain road, fetching the kids following yet another sojourn to Philly. I missed it, as I feverishly ran an errand, impatient to return home, a bit fearful at the possibility of missing a phone call from the hospital. I missed it because life has preoccupied me with ... other concerns. The point is, somehow I missed yet another season, as this particular season of my life has consumed my time, my attention. I remember last fall. How I yelled to the kids to put down their various electronic devices and look, just look!!! , how beautiful nature can be. I remember taking pictures, taking walks, enjoying the briskness of the air, the cool breezes, the beauty of the mountains adorned with so many vibrant colors. I remember feeling so blessed, to be able to share autumn with my children, to have children who can appreciate autumn ... and a walk ... and their mother. Fall is my favorite season. And this year, I missed it.

What if It's the Treatment That is Causing the Sickness ...

I have, on more than one occasion, questioned why I bother with this blog. What started out as a means of chronicling our homeschool journey has evolved into a catharsis of my soul during this trial of faith and strength. But, this week, as the initial ... dumbness slowly ebbed from my mind, and the direness of the situation with Emma took hold, the thought that, somewhere in my mutterings, I may have chronicled something ... some missing piece of the puzzle that might just hold the key to what was happening, what was ... wrong. Because it just does not make sense - Emma thrives for a bit, then hits the proverbial wall. So I read and re-read ... slept a bit and read again. And sure enough, I have documented the trend of Emma to fail each time they supplement her formula with a fortifier. I have copious amounts of notes to bring with me to the hospital tomorrow, in the hopes that the doctors - the revolving-door doctors who may just see "Nec - 4 times" on her chart - might listen to the ramblings of just the mom. It has to be the fortifier. It is there in the chronology. And if it is, then the disease does not exist in my child's intestines, but is being caused by an outside agent, an agent that is not necessary, not vital to her survival. And that, my friends, is much better than the alternative.

When It Is Just Not Meant To Be ...

Emma ... Emma .... Emma is sick ... again. There is a surreal quality to those words, one I just cannot seem to wrap my brain around. How? How is it possible that, for a fourth time, the baby who was so close to coming home is, once again, lying naked on a warming bed, being fed only TPN, and undergoing X-rays and other diagnostic tests round the clock? The prognosis at this point is poor, involving many months of rest for her intestines, one more chance at feeding with the most basic of formulas, and the possibility of a small bowel and liver transplant somewhere around the age of 1 1/2. The doctor speaks of "growing" her, getting her stronger and bigger on the TPN, while resting her bowels, and hoping they regenerate in the months - months - to come.

It is funny - the doctor speaks of "growing'' her and here I was hoping to "raise" her.

The Other Side of the Glass ...

I have just returned from a visit to the hospital. It was during this visit that I realized ... we are on the other side of the glass. It has been 4 1/2 months since I first yearned to be on "the other side", the glass barrier that separates the critically ill babies from the ones progressing towards discharge. 4 1/2 months and a different hospital ... 4 1/2 months of three critical illnesses, countless tests and x-rays and IVs and procedures ... 4 1/2 months of poor prognoses, of "there is still a chance", of lost sleep and sleep that, when it did come, was deeply disturbed - and deeply disturbing ... periods of idleness and others of manic activity, of lost hope and hope clung to in desperation ... of faith ... faith shaken and faith regained. Today, Emma is at full-feeds once again. Tonight, I will hold my breath as we revisit this juncture where she has been twice before - the place where her intestines seem to be taxed to their limit, the place where she has come to only to fail. And I will pray that this time - oh, please, this time - she will not fail. She is off oxygen, there are no IVs penetrating that tiny body save the Broviac catheter that the doctors dare not pull just yet ... There is nothing to keep her from being home by the month's end ... if only she does not fail this time.

They performed an ultrasound on Emma today to ascertain the extent of damage suffered by her liver due to the TPN. I stood near her bedside, trying to busy myself with folding her clothes and tidying her little corner of the ward. But, my eye was drawn to the glass, and what lay on the other side. So many ill babies, so many machines preserving the tiny lives that dwell in the glass enclosures, so few visitors, so many nurses. So many noises - noises punctuated by louder, angrier noises that mean something is amiss, something needs to be attended to right now, someone has a need that, if not met, will mean life no more. My time there is over, and I am so grateful. But the memories ... Oh, the memories are fresh, raw in their intensity. The day they whisked her away in a helicopter, a day I sunk to a low I have never felt before - and hope never to feel again. The eight-day bedside vigil when air was pulsed into her lungs ...lungs so fragile, so damaged the doctors can only describe their healing as "miraculous". The swollen, red body of a baby who existed, but whom I had never really "met", to whom I could only offer comfort through the touch of my finger on her hand ... a hand so small ... a baby so small ... so very, very small, a wedding ring could encircle her tiny wrist ... The train of doctors who have treated her, the faces of the many nurses, faces I know, but names I cannot recall, delicate touches and calming voices more readily come to mind ... a level of expertise and dedication I am eternally grateful for. The one nurse who, seven months pregnant herself, had the presence of mind to discreetly provide me with privacy by bringing a curtain to the bedside as the reality of Emma's condition hit me full force ... (To her, I am forever grateful .) Too much to remember, too much to forget, the paradoxes pervade my brain, resulting in a jumble of emotions, a frenzy of activity at times, juxtaposed against an overwhelming feeling of "I cannot go on". Our lives here will go on - come what may. But life will never be the same. But, in that difference, God willing, we will have Emma ... here where she belongs.

Pandora, the Sloth, and Bach ...

My second son is ... well, to put it succinctly, he is lay zee!!! Lazy as can be. Lazy as a dog on a hot day. Lazy as ... his nickname is the sloth. Get the picture? He is also very bright - learning comes very easy to him, requiring little effort. In other words, he gets a lot out of doing very little. This academic year, I decided to challenge him a bit more, and he has met those challenges. But it irks me, while doing our studies, when I feel he is not very attentive to the subject at hand. So, it is with no small suprise on my part that, today, while I was correcting his math, he remarked on the music playing on Pandora (a free music station that streams over the internet, allowing you to customize your choices): "Ah, a Bach cantata, I believe." I quickly checked for myself, throw off by his words, his perception, his abilty to utilize the Fine Arts lessons we have been focusing on as a group. Sure enough, he was right. It was a Bach cantata. Unbelieveable.