The Grinch Stole My Christmas ... and is trying to ruin my New Year

A doctor who just doesn't understand that Emma is not critically ill, but has chronic conditions imposed an awful sentence on us on Christmas Eve - Christmas in the hospital. It was a devastating blow, considering the other hospital did its best to ensure my family would be together this holiday season. This was the first year I have spent away from my little ones. It was hard on all of us. Emma was fine, according to the hospital staff, but the pediatrician's office closed early for the day, and we were caught between checking out AMA, or behaving like good patients and enduring an interminable night and day in a room with a crib that looked remarkably like a cage, unable to leave said room because the RSV virus was lurking right next door. Very wise decision, if you ask me, to put an at-risk infant in a room just one door away from the very virus that threatens to put her back in the hospital.

My goal for the New Year is to find a doctor who truly "gets" micro-preemies. I appreciate the effort this doctor is putting in to trying to understand Emma and what she needs, but I would have appreciated it more if, upon our intake, he had admitted his lack of experience with these babies, and referred us elsewhere. That would have served all of us better.

7 months, Plus One Week ...

Emma has been home for a full week. We have yet to find our groove - she has not completely settled into a schedule, and she is still fragile in my eyes. I cannot comfortably allow her to eat as she pleases, or sleep as she wants. The ugly spectre of NEC is still looming over us, as a relapse is always a possibility. We cannot leave the house because it is too great a risk for her diseased lungs. She remains terribly jaundiced, though, in time, the damage the TPN did to her liver should resolve itself. I remain hyper vigilant about the number and consistency of stools she produces each day, as any change could indicate intestinal woes of a serious nature. Her sleep is light and, at times, troubled. I, myself, feel a bit woozy with fatigue. But, I believe I speak for my children as well as for myself when I say, we would not have it any other way. We were well aware of the conditions we would have to live under if Emma made it through her trials. The children knew about the freedoms we would have to sacrifice as we enter "lock-down" mode. And they are doing well. There have not been any complaints - perhaps a grumble or two as we are in close quarters with one another day after day. Emma makes it all worthwhile with her beautiful smile in response to our interactions with her. She is as feisty as ever, screaming with displeasure when her feeds are delayed the slightest bit. She is a wonder, I am in awe of her presence, and I am ... blessed.

At Home With Emma ...

The Academic Portion of the Day ...

Followed by Lunch ...

Can Really Tire a Babe ...

Shhhh ....

We don't want to wake ...

Emma!!!

She's home!!! Exactly seven months later, she is finally home. No machines, no medications - just Emma. Tonight she sleeps in her own cradle, in her own home, surrounded by her own family. We are truly blessed.

Living the Not-So-Deliberate Life ...

I have found it difficult to be deliberate lately. I feel I am in limbo, between two worlds - the one in which I am here, at home, waiting for the baby to join us, and the one in which we begin to live our lives together, with Emma finally home. That world looms in the not-too-distant future, possibly as early as the end of next week, if Emma continues to gain weight and not have any intestinal problems. It is so close, the end of this tumultuous period. It is so close, and yet, so, so far away ... So much can go wrong. If she vomits, if she begins to have too many bowel movements, if ... if .... if ... So much over which I have no control. I must plan for her home-coming and yet, I must remain cautious, on guard against defeat ... once again. I want to be optimistic. I really do. I can see myself being optimistic ... I just can't feel it. Four times yesterday I told my children to get ready to go shopping - four times I told them we were leaving to get things for the baby. Four times I told them, "Maybe we'll go another day". Finally, with the fifth announcement, I managed to convince myself that I really did have to get certain things ready for her probable, possible, eventual home-coming. We did go - I do have all the receipts. How is that for optimism?

Mile-marker 200, Straight Ahead ...

I was at the hospital for rounds. The resident read from Emma's chart: "Day of life, 196 ...". They asked me if I had any questions. Only one came to mind: Does she get a gold watch when she reaches 200?

The Queen's Arrival ...

I journeyed to Philly today. Upon my arrival at the hospital, I was greeted by a sign that read, "Parking lot is full. Sorry for the inconvenience." Hmm. What to do? I had just driven 85 miles to be turned about by a sign, 'Sorry for the inconvenience"? Uh, no. I felt extremely belligerent at that moment. I wanted to ... I don't know what I wanted to do, but definitely I wanted to blame someone, have someone fix it, have someone ... Who is this "someone" I wanted to hold responsible? The someone who was going to make the hospital less hectic today, on the day of my arrival. For does not that someone know that I, Emma's mom, visit on Wednesday? Was not someone notified? And, by the way, could that same someone arrange to have my daughter better so she can be home for the holidays? Because this is truly a huge inconvenience and I want it stopped ... like now ... okay ... someone? Anyone? Bueller? Bueller?