Ya’ Gotta Have Heart

The cardiologists have been very happy with her progress thus far.  The heart seems to be functioning pretty much the way they hoped it would after surgery, and things are smoothing out.  Portions of the heart muscle are still too large and out of whack because of the extra work it was doing in utero, so she’s now on medication to slow her heartbeat a bit and let the muscle relax.  It should also have a side benefit of lowering blood pressure and getting rid of some of that extra fluid, so we’ve got our fingers crossed.  So you might say she’s got heart, but a little too much of it.

Perhaps the best news – knock on wood as you read this please – is that the cardiologist said the heart function is good enough that they’d consider sending her home…if she were full term and had figured out the whole eating thing by now.  So we’ve started talking to the nurses about what steps have to happen before she could be released.  It will still be awhile, no doubt, but today we’re starting to see a tiny little light at the end of that tunnel.

It’s Tubular, Dude

Ever since the surgery, Eliana has had some issues with fluid retention and kidney function.  The doctors – at least so far – think that it’s a side effect of the trauma from surgery and not some other sort of damage.  But it’s something they’re watching very closely as they try to cut down on her fluid retention.

Up until now, she’s been fed nutrients through the ‘central line’ in her umbilical cord and has been given very small amounts of breastmilk through a tube that goes through her nose to her belly (called an NG tube).  To help out we’re trying not to tell too many jokes. You know – so she doesn’t shoot the milk right back out her nose. (insert rim shot here)

But she’s been increasing the milk feedings for the past couple of days and last night they removed the central line so she’ll only be getting the milk (though maybe with some fortified formula mixed in as necessary).  So today, Eliana kept at it and began trying to breastfeed.  Needs work, but she’ll get there. Between Amy and the bottles that will be provided by the nurses, she’ll have plenty of practice over the next few weeks.

Baby Burrito

Baby burrito #1. A surprise awaited us at NICU, when Mom and Dad were able to hold Eliana for the VERY FIRST TIME, even though she still had a central line in her umbilical cord. We had to be very careful because lots of cords and wires snaked this way and that.

Happy first week of being alive, Eliana!

 

!

Talk to us

It’s been almost a week, and all the medical stuff is practically normal to us now.  Every day there’s the tubes, the wires, the ventilator machine, the IVs and all that – but it’s pretty much the only way we’ve seen her so we’re used to it.  And when you think about it, this is all she’s ever known in her short life so it’s completely and utterly “normal” to her – whatever that word means in this context.

One of the creepiest aspects of this setup is that with a ventilator tube in she’s incapable of making sounds (the tube goes through the vocal cords).  So while she’s being poked and prodded here’s this tiny little kid, red-faced and flailing, mouth wide open and tongue flailing – but not a peep.  She literally doesn’t have a voice, and that’s not cool.

But last night her breathing and blood oxygen had improved to the point that they were able to take out the ventilator, so today we got to hear her cry for the first time.  Yippee!  And boy does she have a set of lungs.  I’m sure it will get old after a bit (especially at 3 am), but for now it’s the best sound we can imagine.

Surgery Day

Surgery day!

Eliana had stabilized well over the first two days, so by Thursday she was ready for her valvuloplasty.  Doctors went up to her heart through a vein in her leg and used a balloon to break open the valve that was causing problems.  Surgery went well, though the leg vein clotted up a bit (not an unexpected complication) so her leg is a little swollen and purple.  OK…a lot swollen (like a grape popsicle), but it should get better over time.

Surprise!

Yesterday Amy was admitted to the hospital for “observation” based on some testing results.  The initial results were certainly not what we expected, but it’s a good thing she was already in the hospital for testing because…

After further testing was unfavorable, doctors decided to do an emergency C-section.  How emergency?  Hank and Shira were already in the car on the way to the hospital for a morning visit when a nurse called to say they’d taken Amy into the OR and wouldn’t be able to wait for the delivery.

Eliana Tova Lerner was born at 11:27 am; 4 lbs. 2 oz.; 17.5 inches.  She was about 33.5 weeks – around 6 weeks before her due date.  At birth she was immediately admitted to the Neonatal Intensive Care Unit (NICU) at Hershey Medical Center.

Earlier in the pregnancy, Eliana had been diagnosed with pulmonary valve stenosis – a narrowing of the valve leading from the heart to the lungs.    Long story short, the valve that lets blood go from the heart to the lungs to collect oxygen was almost completely clogged shut.  Not a good thing.  So aside from the early birth, she had a wee bit of a heart problem to deal with.

Amy got to see her in the delivery room briefly after birth, looking surprisingly like baby Shira, although about a pound and 10 ounces lighter. Eliana was stabilized within a few hours, and Hank and Shira actually got to see her later that afternoon. Crazy, right?

The first few pictures we took were of her in her ‘isolette,’ (Martian baby pod complete with heaters, sensors and all sorts of cool stuff), but with a ventilator tube, IVs and all sorts of wires hooked up to her, we decided to protect her vanity and not snap too many closeups.  Maybe we’ll post those for her Bat Mitzvah.