Wresting down a weight class??

Miss Ellie is trying to follow in Daddy's wrestling footsteps, it appears.  And she must think that she needs to cut weight to wrestle down a weight class, I guess.

Yes - this is my pathetic attempt to make light of an icky spot we're in.  I fail - sorry for my lame humor!  Anyhow, at Ellie's cardiology appointment on Wednesday, she weighed in at 6 pounds 6.7 ounces.  She weighed 6 pounds 8.4 ounces at birth exactly 4 weeks ago.  She is now in the 25% for height, but less than 2% for weight.  This is on the "typical" baby chart, though... keep that in mind.  We'll see how she compares on the chart for babies with Down syndrome soon.  Bummer.  Big bummer.

How can this happen you ask, after putting on weight well at first?  Well, I don't know that I have all the answers, but I know that part of the initial weight gain was water retention (due to Ellie's heart condition) which she shed once we was put on medication last week.  The other factor at play here is that Ellie's heart is working super hard to do its job... which burns up tons and tons of calories.  So she is eating well, but all of those calories are burning up to support her heart and lungs instead of getting dumped into her fat stores and muscles and such.  Remember that our goal is to get her bigger and stronger before she'll need surgery, so weight gain is a bigger deal that I guess I realized.

Getting ready to go to her cardiology appointment - I thought she looked like she's finally filling out her newborn sized clothes - maybe I just shrunk them a bit.

Ellie got another echo done - this time with Teresa (who was the wonderful lady who did my prenatal echos).  In the echo, we could see that Ellie's right atria looks bigger than it did before... still something that will be fixed during surgery... but it looked odd to me.  I'm no expert at all, though... I have no idea if it affects any functionality or not.  I would guess not because all of her blood mixes in her heart anyhow.  Teresa was trying hard to find something with the Doppler and out of curiosity, I said, "What are you looking for now?".  I don't know if she likes all my questions, but it was too quiet for me - ha!  She told me that she was listening to the blood flow in both of Ellie's SVC's.  Uhhh... what??  She said, "you knew that she had 2 SVC's didn't you?"  I just looked at her blankly.  She said... "oh, sorry - it's not a big deal, really".  After dusting off my Anatomy & Physiology database in my head (which hasn't been used really since college), I said, "are you talking about vena cavas?  Ellie has 2 superior vena cavas?"  Yep - this is true.  It's not a big deal... just interesting to me.  The vena cavas are veins that dump non-oxygenated blood from the body into the right atrium.  You have an inferior one (that moves blood that is below your heart) and a superior one (that moves blood coming in above your heart - this is the one that the jugular dumps into).  Well - Ellie has 2 up top.  I said, "well, I guess that'll make her very efficient at returning non-oxygenated blood, then, huh?"   Teresa laughed and said, "guess so".

Ellie getting an echo

After the echo, we weighed and measured Ellie (which bummed me out), then waited to see Dr. Luby.  Dr. Luby checked her out and asked me more questions.  I told her that Ellie was no longer sweating during feedings, but that she was retracting more than she was a week ago.  Dr. Luby was now concerned that Ellie wasn't just slacking a little on gaining weight... she was now losing weight.  We had two options for treatment.  She said option 1 was to supplement 2 or 3 feedings a day by adding dry formula to pumped milk.  This would double the calorie content of Ellie's meals.  She said, "while this IS an option, it's not a good option".  She stressed that once we're on a slippery slope of losing weight, we can get into trouble quickly and the goal is to get on solid ground so that we can hold off on surgery.  The second option, which Dr. Luby knew I wouldn't like, was to admit Ellie through the weekend so that she could be constantly monitored and we could find the most effective method to get Ellie to gain.  Since we don't want to backpedal before we even really get moving, we went with the suggested route and made arrangements to admit Ellie today (Thursday).

Before we left, I asked Dr. Luby if there was anything else that I could do about Ellie's congestion (other than using saline and the bulb sucker).  She said, "she's not really congested, that's just another symptom of heart failure (along with what they see on the echo, her retractions, and the weight loss).  Ugh!  And with her weight loss, she's being admitted for "failure to thrive".  Can they find any scarier terms to describe an infant?  The admitting doc said, "so, she has Down syndrome, congestive heart failure and failure to thrive... anything else?"  Uhh... no, that's enough!  Dr. Luby did come in to visit and said that medically, they call it congestive heart failure, but assured us that Ellie's heart isn't really failing - it's still pumping well.  She said that it's more like pulmonary overcirculation - the end result is congestive heart failure, yes... but Ellie will have surgery to avoid that end result.  That was reassuring!  She, again, described Ellie's condition as wet, heavy lungs.  Remember that her heart is pumping as one chamber instead of 4 chambers, so a lot more blood gets pushed into her lungs with each heartbeat than would normally go there.  That makes sense, right?

We still started adding formula to her milk 3 times a day, but we'll stay at Dayton Children's for a few days so that the doctors can formulate a plan for us that works well for Ellie.  So, we're sitting here doing as much as we can to monitor her intake and output... which is pretty boring.  We have to weigh all of her diapers, time her feedings and mark how long she nurses or how much we're adding to her pumped bottles and how long those take her to consume.  Tomorrow they'll be weighing her before and after each feeding to see how much she's taking on.  Nothing too intense at all.  No poking or prodding.  If we're not able to get her to gain, they'll consider a feeding tube... but that's one of the last things they'll try if other options don't work first.  The only downside really, is that Ellie is sleeping in a cage.  For real... a cage.  Brandon and I are both able to sleep in her room with her, which is fabulous.  I may feel differently after sleeping on this couch/bed thing - kidding.

Ellie bug sleeping in her cage.  I guess here it kinda looks like a crib.  I really want to put a sign on it that says, "do not feed the animals", but I have a feeling they aren't going to like my humor (especially when we're here to focus on her feedings).  Ehhh... minor details!