Hold the Baby. Love the Baby.

Eliana’s been extubated for two days now (no more breathing tube in her throat) and is crying like an old pro. Aside from two days of hearing baby cries, Mom’s had two days of holding baby, something we haven’t been able to do since the dialysis started.

Yay! That really helps make us feel like a normal family.

Have we mentioned that this child has a large personality? She doesn’t like to be disturbed, which as you can imagine, happens a lot in the hospital. Her nurse today had to give her a shot and insert the NG (nasogastric) tube for feeding, both of which were after the excitement of rounds and exams from several doctors this morning. Suffice it to say she didn’t enjoy having the NG tube inserted. In fact, she put up such a huge fuss she completely missed the joke about having a little baby moustache. One of the nurses said it was like wrestling an alligator. An alligator with a moustache, that is.

Things are status quo with the cardiologists and moving along well with dialysis–she just needs to heal up around the catheter’s entrance and exit incisions.  There’s no specific timeline for being released, but we’ve started our homework by chosing a home nursing agency and we are looking forward to the next steps on the road home.

On Vacation

It’s been a little over a week since Eliana started on dialysis.  Things were going so well after the first few days that the doctors decided to plunge ahead with her care, so they took her off the ventilator and started easing her back into bottle feeding.  But all that change at once was a bit too much for her, and she regressed just enough to let the doctors know that she needed to go at it more slowly.

So in a manner of speaking, she got a bit of a vacation.  They put her back on the ventilator for a bit, stopped the bottle feedings (she’s still getting nutrition through an IV line, just no milk), and even stopped dialysis for a couple of days just to let her rest.  Since Thursday they’ve been weaning down her ventilator settings and reintroducing dialysis, and things seem to be going much better.  So here’s to a week of slow, steady progress.

One Small Step…

Eliana’s dialysis tube was placed two nights ago, so by now she’s been dialyzing for 48 hours or so.  In that time she’s lost around 250 milliliters of excess fluid – right around eight ounces, or one cup, or about a half a pound.

Wahoo!

Consider that the first small soggy step for Eliana – and giant leap for all of us – on this journey.

Cleaning Day!

So…about that thing where nothing goes according to plan…

Eliana will be undergoing peritoneal dialysis, not the typical hemodialysis most people are familiar with.  Instead of cleaning her blood directly, she’ll have a special fluid moved through her abdomen that pulls  into blood impurities out through the blood vessels in the abdominal lining, called the peritoneum.  Ewww…yuck, right?  But a gentler and safer method – especially for infants.

First step is that you need easy access to the belly – which means a second full-time tube (the first, called a BROVIAC catheter was put in about a week ago so she could get regular blood draws and IV infusions without having to poke a different vein each time. Hardly even rated a mention with everything else going on.)

Surgery for the dialysis catheter was initially scheduled for Monday, but was eventually moved up to this evening (Saturday) because Eliana was getting progressively worse as the day went on.  So as of 10 pm tonight she not only has her dialysis tube in place, but she’s gone through the start of her first cleaning cycle.  I believe she’ll be in the spin cycle by midnight, then line dried until morning (laundry humor, anyone?).

It will probably be a week or so until she’s somewhat under control and looking closer to “normal” – whatever that means – but so far so good.  We could use a break already yet, so hopefully things can calm down for at least a few days.  Is that so much to ask?

Happy Monthday!

It was one month ago that Eliana Tova graced us with her presence, and it has been one heck of a month.  Let’s just say that nothing – and we mean NOTHING has gone even close to the way we’d envisioned it.  Nothing. Nada. Zero. Zip.

If you’ve been trying to keep up-to-date it’s been obvious that there haven’t been any updates for the past couple of weeks.  It’s been a hard two weeks, and to give you fair warning, this update isn’t the best we could hope for.

Eliana’s kidneys had been a little on the fritz since the beginning, but the nephrologists (that’s ‘kidney doctors’ to the rest of you) felt that it was probably because of the stress of her early birth and surgery, and that they should improve over time.  They haven’t.  In fact, over the past 7-10 days they’ve headed downhill to the point where they’ve almost completely stopped functioning.

Kidneys don’t get a lot of press, but they’re critical to your health in many ways.  By stripping waste products from blood they help regulate the balance of many important chemicals in your body.  To be blunt, if your kidneys don’t work, neither do you.

So what does this mean?  The only way to move forward at this point is to start Eliana on a course of daily (in-home, eventually) peritoneal dialysis that will replace her kidney function.  If everything goes well the longer-term goal would be a kidney transplant, which probably wouldn’t occur until she’s around 24-30 months old.  But it won’t be easy.  In fact, based on the doctors’ advice and some input from a family that’s been through it, the next few years will be very, very, very, very difficult.

Many of you have been asking how you can help.  We do greatly appreciate the support, even if some of us (..Hank…) aren’t great about taking help sometimes (ever).  But with things unsettled and still changing day by day it’s been a challenge to figure out how to take advantage of the offers.  Since we don’t know what each day will bring it’s hard to know what to ask for or even where we’ll be at any given time.

For those who have asked about making a meal, driving us somewhere, mowing the lawn, etc., don’t go away.  Once Eliana comes home we’ll have 2 years of angst and struggle, so all that stuff will be needed.  We know where to find you and at some point you’ll get a list.  But while you’re waiting for that phone call, email or tap on the shoulder, please consider the some of the following ways you can help make a difference:

• Give blood.  There’s always a need for blood and blood products, and it’s a quick way to provide help to the thousands of people who need blood each day.

• Consider checking the organ donation box on your driver’s license.  Many kidney transplants are done from live donors, but there’s still a waiting list of people who need kidneys and other organs to live.

• Help the Ronald McDonald House.  http://rmhc-centralpa.org/web/
  These folks are awesome.  You may know of the actual Ronald McDonald House, which provides a live-in “home away from home” for families with children in Hershey Medical Center (and other hospitals, of course). Less known is that they provide tremendous resources to any families with a child in the children’s hospital, including food & drinks, lockers, rest areas, computer access and children’s activities.  We’re fortunate to live nearby and not need to stay at the house, but couldn’t have made it through this first month without their hospital resources. Aside from financial donations they can use all sorts of other items (soap, games, snacks, etc.) so there are plenty of opportunities to help.

• Consider donating to the Penn State Hershey Medical Center Children’s Hospital. http://www.pennstatehershey.org/web/childrens/home
  As a proud graduate of the University of Pittsburgh it’s hard for me to admit this, but at least this part of  Penn State doesn’t suck (you’ll understand this better if you went to Pitt).  We can’t say enough about the awesome care provided by their doctors, nurses, support staff, and everyone else we’ve come across (though to be honest, we’ve heard some complaints about the staff at Starbucks).  Every little bit helps.

So…we’re going to move forward and see what happens.  She’ll have a small surgery next week to insert a catheter, and should start her first dialysis session by Tuesday or Wednesday. There’s no guarantee of success – in fact, the odds may be against us – but we’ve made our peace with that.  All we can hope for is that we give it our best shot and do what we can.  It’s sad, depressing news, we know, but we’re moving ahead with as much hope as one can muster.   Hopefully there will be some positive news to share later in the week.  We thank all of you for your continued prayers and words of support.

A Room with a View

Eliana was moved to the Continuing Care Unit at 11 pm last night and now has her own room, just like she will at home (well, after she’s done horning in on mom and dad’s bedroom). She’s got a nice view of the parking lot and also some trees beyond that, but best of all, it’s quieter and more roomy. One of the nurses said it’s like staying at the Ritz. Not sure I’d go that far, but we’re all peachy keen. She’s still in the isolette, but hopefully her temp will continue to normalize and she’ll be in the open air soon.

The Continuing Care Unit is for infants whose medical needs have stabilized to a point where they don’t need quite the same level of care as the NICU.  So things are better, if not completely fixed. The doctors continue to tweak her blood pressure medication and monitor and adjust her electrolyte levels, all things related to her impaired kidney function. Most likely, she’ll continue to see the nephrologist and cardiologist upon her release from the hospital and an orthopedic specialist for her foot that may have nerve damage.

In other news, Eliana received her first mail today, thanks to the Social Security Administration. So cool to see her name looking official on something other than hospital records and insurance claims.