Thursday, April 16, 2015

A date! Sort of.

Those of you who know me know I'm a planner and since we haven't been given any set dates for anything, I've been a little nuts. Today, we finally got a slightly more set timeline!

Eden's appointment went as usual: weight, length and other vitals taken, then an echo done and a conversation with the doctor.

Her weight hasn't increased as much as we'd like it to: she's only gained half a pound in the last four weeks. We've been tracking her pretty frequently, anytime I'm in a medical situation, I ask to have her weighed, so she's been weighed about 4 times in the past four weeks and it's never as much as I want it to be.

The reason she isn't gaining as rapidly is because of her heart. Of course. Her heart is working so much harder than a normal 3 month old's that her metabolic rate is higher. She's burning calories almost as fast as she takes them in. I have plenty of milk and we nurse on demand and give her a bottle of formula fortified milk every night. At least she IS gaining, I suspect if she wasn't getting the fortified milk she wouldn't be.

Our plan for fixing this is to increase her fortified bottles to two a day. This is a mixed bag for me.

I've had allergies that turned into a cold that turned into a sinus infection. I took some Claritin last week to help stave off the worst of it and it didn't really help and it made Eden sleepy, so I decided not to take any more. I'm glad I didn't, because today, at the doctor's office, I was told that decongestants that dry up your snot and mucous can also dry up your milk. Yikes! I've definitely noticed a decrease in my supply this past week and chalked it up to being sick and not eating as much. That's part of it, sure, but so is the medicine. I'm on antibiotics now so hopefully I'll get better quickly and my milk will come back in. For my mental comfort and to stay ahead of her, I'll need to pump at least what she drinks every day, if not more. If I can't pump anything else out after today, I've got 14 days' worth milk to fortify for the future. That's pretty nice, but I'd like to be able to keep pumping and nursing her. So fingers crossed that all goes back to normal.

Her height has grown, she's now 22 inches long. She definitely fills out her clothes length wise. She's taking after me, long and thin. Her pulse oxygen levels were good, 92, and her other vital statistics were good, too. The only concern today was her weight.

We talked to Dr. Kane about a few of our concerns: Her weight gain, an ideal weight (as big as we can get within reason...there have been no studies showing a certain percentile does better), her possible adverse reactions to serious pain medications (Mom and I both get super sick on hydrocodone and morphine type pain killers) and a timeline for everything.

Our timeline has always been "when she gets x old" which is not terribly helpful. Today, he finally gave us an estimated date: mid-July. We know this could change and that it's still not super specific, but at least it's something.

Here's our new tentative timeline:

Mid-July we'll go to Dallas for her heart catheter procedure. We'll be there over night, possibly a little longer, because they want to do an echo while we're there so the two sets of results are basically simultaneous. They have surgical team meetings every Wednesday evening and at the one after her procedures, they'll discuss what her results show. They'll decide what they think is the best surgical option for her and look at their calendars to schedule it then. There's always a slim chance they'll think she's doing great and can wait a little, but the fact that she's deteriorating a little already makes me think that won't happen. Dr. Kane didn't say it, but Mom and I both suspect that they'll very likely schedule the surgery for 4-6 weeks after the cath procedure, if not sooner. She'll continue to grow and while things won't change drastically, they will shift a tiny bit just as a result of her growing and if they wait too long, they'd have to do everything all over again.

Depending on what surgery she has will determine when the pulmonary stenosis is repaired. It's something that very well may be repaired at a later date, but today Dr. Kane said it's possible it could be repaired during the surgery, depending on what exactly it looks like and what surgery they do.

So, we're feeling a little better about some things and a little anxious about others. She's been fussy recently and we think it's because my milk hasn't been quite enough in the evenings lately. She's due for her 3 month growth spurt and with my milk being less than usual, that's frustrating all around. So we're going back to our first pumping techniques: pumping after most nursing sessions and pumping when she gets a bottle. So I'm still tethered every few hours. lol

She's still beautiful and content 99% of the time. She smiles at people and loves her brothers and Daddy. She's started pulling back from nursing and looking up at me with a big grin and a little chuckle, then diving back in, her eyes rolling up in her head as she nurses like this is the best stuff she's ever tasted (which, let's be honest, it is).

Thanks to everyone who's donated on our GoFundMe page! We've got her bank account all set up and we're grateful for every dollar people have given us. We know how tight finances can be for some people and that makes it even more amazing to us that people are willing to give us something. If you'd like to donate, as always the link is below. Please don't feel obligated or guilty that you can't. Prayers and well wishes are just as important as money.

Eden's Medical Fund

And now, a picture!

Enjoying the zoo last weekend with Mommy and Elijah

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