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Sarah and JP, the twins' mom and dad, have spent countless hours in the NIC-U since their little girls were born. And their fondest wish, at the end of visiting hours every day, has been that their little girls could come home with them.

This morning, Sarah was asked to bring Amelia's car seat/child carrier with her to the hospital. And today she received instruction on how to secure the little ones in their car seats and safely transport them home. Which, for Amelia, will be tomorrow or Friday.

From the beginning, we understood that it would likely be this way. That Amelia would be released to come home while Layla would be kept in the NIC-U for a slightly longer stay.

It's hard to describe how this has weighed on our hearts and on Sarah's. But the rules are clear: once released, Amelia cannot be brought back to the NIC-U and Sarah and JP will have to divide their time, as best they can, between home and the hospital.

(When asked the reason for this policy, the Nurse Practitioner explained that it was for Amelia's safety. That being brought in and out of the hospital would greatly increase her risk of exposure to chilling cold and potentially deadly infection.)

The staff did their best to console Sarah, regarding this prospect, assuring her that Layla would be well cared for and would likely join her sister at home near the end of next week.

Then Sarah related a story which I think may suggest another perspective for all of us.

She made the observation that the NIC-U always seemed to be crowded with parents taking care of their newborns, then asked if I recalled seeing an Isolette that seemed a bit out of the mainstream of unit activity.

That one, she had noticed, never seemed to have anyone but staff around it. The occasional exception was an older woman, whom Sarah and JP took to be the baby's grandmother.

And the baby always seemed to be crying. While her own little ones nursed and slept, this baby was always crying.

Then she overheard a staff member refer to "the morphine baby." And soon after learned that the older woman, that she and JP had sometimes seen with the child, was a hospital volunteer.

Confronted with only the basic facts, we tend to supply the missing details from what we've heard or imagined of lives outside our own. And we do it as a means of coping with what we have before us.

Sometimes that tendency can lead us pretty far afield, so that what we imagine bears only the faintest resemblence to reality.

But in this case, I think that what Sarah has surmised may unfortunately be correct: that this baby was born addicted and that her mother is either in jail or de-tox or back out on the street looking for her next fix.

And that, with the exception of hospital staff and the one volunteer, this child has been left alone in the world to suffer the constant and excruciating pain of her own withdrawal.

In this life, we never really know what our prospects might be, going forward. But some, like Sarah's little twins, will likely be going home within a reasonably short time, to live with families that have loved and cared for them since their lives first began.

For others, that sort of life may be little more than a ragged dream, glimpsed through a pain not of their own making and not within their own small powers to comprehend or heal.

LPK
LiveJournal
2.1.2012

The Twins

Jan. 31st, 2012 03:10 am
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The very best part of a very busy day yesterday was the hour spent in the NIC-U watching the little twins sleep and smile and stir just slightly as they slept on pillows in their mom's lap, both now free of the IVs that kept them tethered to the machinery of a new and still somewhat tenuous life.

And, while each must return to her respective Isolette - what another generation called an incubator - Amelia is also freed from the necessity of those ultraviolet lights used to treat the effects of an immature liver. Which means that, depending on her ability to maintain body temperature on her own, she may soon be free of the Isolette as well.

In the meantime, they are both eating and digesting well and have shown remarkable talent at being very cute. And both mom and dad are attentive to their needs and anxious to have them home.

LPK
LiveJournal
1.31.2012 (a)

First Time

Jan. 27th, 2012 01:21 pm
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Went up to the NIC-U and saw the little twins for the first time last night. And they surely are tiny. And really cute. But really tiny. Along with cute.

And what a busy place up there. Parents at every station, staff all over the place, monitors blinking and beeping. And all these little kids, mostly sleeping, many under the "bililights" like our two little ones.

But, yeah, parents in every corner, taking care of their little kids, even at this early, impossibly fragile, stage.

One thing that amused me a little, on the way in, was that everyone has to reached inside this automated hand cleaner with both hands and stand there while these sprinkler heads go round-and-round with antibiotic cleaning solution.

But the sign didn't say, and I wasn't smart enough to figure out on my own, that you should first take off your jacket.

So as I walked away, a little damper than I should have been, I said to my wife, "Look, I got my jacket washed too."

She just shook her head and continued walking because she, at least, knew what we were there for...

LPK
LiveJournal
1.27.2012
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Got a late text from Sarah which I didn't open until this morning. She said the hospital had called to inform her that the girls had been moved from level D of the NIC-U to level G. A-C are intensive care, with A being the most critical.

All infants are admitted at level A and then evaluated for most appropriate placement. And the twins were moved from A to D on their first day in the NIC-U, levels D-G being "progressive care."

Their move to G, last night, means they are at the least critical level in progressive care and, of course, the new mom, and everyone else, is now saying, "When will they be coming home?"

Which is a great thing to be saying and thinking after the anxious months before, and the hours just after, their arrival...

LPK
LiveJournal
1.26.2012 (a) 

Transition

Jan. 25th, 2012 07:02 am
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Today we start the routine that will hopefully be little more than the next step in getting Sarah's twin girls home. As I said in a previous post, Sarah was released from the hospital yesterday but had to leave her little ones in the NIC-U. I haven't heard how that has affected her, but I know it can't have been easy.

Because there's a period of hours during which nursing staff gets report and does rounds, followed by doctors' rounds, the unit is closed to ALL visitors including parents. So I'll be driving her up to the hill, as it's known around here, around 10:30 AM and she'll spend the rest of the day and part of the evening. And she'll be joined by the kids' dad after he gets done with work.

After visiting hours, they'll both come home and prepare themselves for another day of the same. I suppose in some ways it's actually a good transition for them. Sarah will have at least a few days to rest and recover from the surgery before she has to assume the full burden and responsibility of their care at home. So hopefully that part of it will be beneficial to her.

And even though I know that she won't necessarily feel that way about it, I hope that at another level she understands and adjusts and uses it for whatever good may be made of it...

LPK
LiveJournal
1.25.2012 (a)

Today

Jan. 24th, 2012 09:58 am
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Just learned that Sarah will be coming home today - without the twins. I know that will be hard on her, as will traveling back and forth for feeding and child-parent bonding. I've told her to set up a schedule that will work best for her and we'll help with the travel.

I think my notion of what Sarah might be like as a parent began to take shape when she was in the second grade and her teacher told us, with tears in her eyes, that when asked what they wanted to be when they grew up, Sarah was the only one in her class who responded, "I want to be a mommy."

Nothing I've seen, through this long and challenging pregnancy, has changed my view that she'll be one of those who is dedicated, heart and soul, to her kids. So, yeah, we'll be doing our best to help her to be just that.

My wife, who tries to visit each night before her shift on another unit at the hospital, says that Layla, who is now being allowed to nurse at the same intervals as her more robust twin, is a voracious little feeder. And that there's just something about her that suggests that, of the two, she's gonna be the little instigator.

To that I could only reply, "Takes one to know one." Because, as a kid, my wife was legendary for dragging her older siblings into all sorts of misadventures in the old eastside neighborhood where they grew up. For Layla, it may well be that her very survival has been due to her ability to thrive as the feisty little underdog.

And, as we all know, that can be an asset later on in life as well...

LPK
LiveJournal
1.24.2012 (b)

Yesterday

Jan. 24th, 2012 06:41 am
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Part of my own recovery has been catching up on things left undone while I was struggling just to do what no one else could or would do, so I'm a day behind with the twins.

Yesterday the report was simply that they had been placed under ultraviolet light, a therapy which is sometimes necessary for newborns, including full-term, normal birth-weight babies. The purpose of this therapy is to help break down a yellow pigment in the skin, called bilirubin, which is normally removed from red blood cells by the mature liver.

In full-term infants, this process takes about two weeks. I'll have to do a little research on the prognosis for preemies like our little ones. When I find out, I'll post an update here.

LPK
LiveJournal
1.24.2012 (a)
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As of last night, I'm told, the twins are nursing once a day and have been maintaining normal blood sugar levels.

However, that's with the supplemental IV, so one of the benchmarks to be achieved before their release will be their ability to maintain normal blood glucose without the IV. Another will be their ability to maintain normal body temp without the incubator.

Still, so far, everything looks good. You go, little grrls!

LPK
LiveJournal
1.22.2012

Progress

Jan. 21st, 2012 07:28 pm
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The NIC-U where my granddaughters spent their first day after delivery has seven levels of care, designated A-G, with level A being the most critical. They started the day Friday at level A but by today had progressed to level D. Earlier in the day, there had been a drop in their blood glucose levels, but that was handled through an adjustment in their IV solution.

Today, they are going to try to feed them by mouth as the next step in their progress toward going home. At delivery, Amelia was 4 lbs. 5 ozs. and Layla was 3 lbs. 7 ozs. I know that weight is not the only factor in determining viability and all other indicators have apparently been good, so we'll see. Mom and dad seem to be doing fine as well.

Still haven't been up to see them due to the lingering effects of this flu or whatever that I've had but my wife has gotten some awfully cute pictures on her digital camara. Will try to post some of those as soon as I figure out how.

LPK
LiveJournal
1.21.2012
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Been really sick overnight last night and today. Missed the delivery of my granddaughters, Amelia June and Layla Camella, who were pronounced "perfect" by their Aunt Rebecca before being whisked off to the NIC-U which is thankfully in the same hospital.

They're very tiny, of course, the plan having been from the start to deliver by C-section at 38 weeks which is two weeks short of full term. The actual delivery date was then determined by another indicator, the most recent growth sonogram which showed that Layla had stopped growing while her sister had added another pound during the final week, their 36th.

Little Jay thought it was unfair that Amelia had to be delivered at the same time as her sister since she seemed to be just fine right where she was. He was consoled somewhat by being told that the tiny twins would be kept together in the NIC-U.

Anyway, that's my big news for the day. I had been preparing a sort of lead-in, a couple of days ago, when LiveJournal trashed about half a page of copy and I had neither the time nor the energy to re-do it.

Now I've gotta pick Little J up at school - I've gotta, there's no one else - and also see if I can convince someone to take him to soccer practice tonight and his 7 AM soccer game tomorrow. Good luck to me on that...

LPK
LiveJournal
1.20.2012

Twins II

Jan. 13th, 2012 07:52 pm
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My youngest daughter was admitted to the hospital last night because two out of three strips on her twice-weekly sonogram indicated restricted blood flow to "Baby B" and because there were indications that a particular vein to the same baby's liver was beginning to close, something that's not supposed to happen until after birth.

The reappearance of the blood flow problem was disappointing, given that the condition had recently improved enough for the weekly sonograms to be reduced from three to two. But it's the emergence of the second condition, the vein closure, which seems to be the more imminent threat to fetal well-being.

Also, following her admission, she began having contractions and dilating. And this evening she was told to skip her dinner, an indication that a decision to perform the planned C-section may be imminent.

Her mom works tonight, in the same hospital, so she was planning to see her for a few minutes before starting her shift. She said that Sarah was tired, feeling a lot of anxiety, and hadn't felt like eating her lunch.

When she called me yesterday, to tell me about her sonogram and planned admission, we talked about what a good thing it was that her two little ones had had the benefit of these extra weeks, since the blood-flow problem had been discovered, to grow and develop.

At that point, "Baby A" was less than 2 lbs. and "Baby B" was barely more than 1 lb. Now, "Baby A" is almost 4 lbs. and "Baby B" is well over 3 lbs.

The hospital where our daughter is being cared for has the regional Neo-natal Intensive Care Unit or NIC-U. Although we take some comfort in its availability, we had hoped that our two little granddaughters would not have to begin their lives there.

Now, our hope is simply that life may be sustained, for our daughter and her two little ones...

LPK
LiveJournal
1.13.2012 (a)

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