Monday, May 27, 2013

Tamsie Update / Recent iPhone Pics


Well Friday Mom and I took Tamsie to see the pediatric urologist for her check-up. (This gives some background about her condition in case you have no idea what I'm talking about!) First she had her ultrasound, which was totally miserable, since she cried the entire time and there was nothing I could do to calm her down. Evie was even trying to shush her very sweetly, but poor old Tamsie was just hysterical. The whole time I was reminding myself that it was for her good, that we are thankful for good doctors and tests -- but it was very hard to see her so upset. Then we met with her doctor, who confirmed that surgery is inevitable, short of a miracle... which we are, of course, praying for!

So Tamsie is going for more tests in early September, and when we meet with the doctor to review those test results, that is when we will set a surgery date and learn more about what surgery will entail. For now, here's what I know:

- It's fixable.
- Our doctor is very experienced in this type of surgery. She said this kind of thing is actually the bread and butter of her practice. In fact, she schedules surgeries for this condition every Monday (so that the kids can be out of the hospital the following weekend), and every Monday throughout the summer is pretty much already booked up with these surgeries. The day of our appointment with her, she had just discharged a kid from the hospital who had been treated for Tamsie's same condition.
- Surgery will be at LeBonheur, which is a truly wonderful children's hospital. We're very blessed to have LeBonheur here in Memphis.
- Having it early in Tamsie's life will ensure that she doesn't remember it, and that she won't know to dread it ahead of time. Having surgery at such a young age, she should also bounce back more quickly than she would if we waited.
- We live in an era when these issues can be corrected. (I know I already said it's fixable, but I'm including this as a separate bullet point, because this is such a pro.)
- Evangelyn, to the great surprise of the doctors, has a completely healthy urinary system with no traces of any of these problems -- so thankfully we're not talking surgery for two kids.

- It's surgery.
- It's major surgery.
- I'm scared of complications. After all, I tend to be the queen of complications based on my past surgical history, and that's not the kind of queen anyone wants to be!
- It's my kid we're talking about.
- This could be the first of two or three surgeries, depending on how this one goes. I mean, we're hoping this surgery doesn't have to happen in the first place (although the doctor has told us that's a long shot), but that if it does, that this first surgery clears up every problem area entirely so that no additional surgeries are needed.
- AARRRRGHHHHHH it's my precious kid, and I would gladly let them do surgery on me instead if only that were an option. And if you know me, you know how intense a thing that is for me to say.

All of this hit me pretty hard while we were in the doctor's office, and my mind flashed back to Tamsie's NICU days. My heart just felt like it was suffocating all over again, remembering how tiny and fragile and helpless she (and Evie) had looked, and how I never wanted to see either of them like that again... and now it's looking like surgery is looming ahead for T. I started tearing up right there, and the doctor was so sweet and compassionate with me! She told me she's a mom too, and she wants me to know she's got this. And I know God's got this too.

But I just don't want my sweet baby girl to have to go through surgery, you know?

I just remember those early days when she was in the NICU and I was still in the hospital. I remember those teams of doctors coming in and delivering news about all the random odd things my heart and kidneys and who-knows-what-else were doing, and then I'd get updates about the odd things going on with the girls. And the whole thing was odd, and my memories are blurry, but every time something would come up, I'd just ask, "Will this go away?" "Will she grow out of it?"

Usually the answer was "yes." The bradys (if that's spelled right, I have no idea! I'm no medical person, clearly!), the weird respiratory issues, the jaundice... all of that was supposed to go away. And little by little, it did. My kidney issues went away -- I can't remember if that was a surprise or not. One time they thought I had a hole in my heart. "That will go away though, right?" I asked... and the answer wasn't what I wanted to hear. I was also told my heart had enlarged. "Yeah, but it will go back to normal, right?" .... and once again, the answer wasn't what I wanted to hear. Then I received word that the hole in the heart was a hoax or a blip on the screen or something -- nothing to be concerned with, and that my heart actually was going back to normal all the way. It is all such a blur, but these are the things I remember through the haze I was in.

I also remember something with Tamsie's left kidney being dilated, which they spotted in my final ultrasound before the girls were born. "That will go away, right?" I asked instinctively. "We don't know, but we think so" was the answer I usually got, and they conducted a few more tests and lined up more for her to have once she was released from the hospital. "Is this a preemie thing, a TTTS thing, or a Tamsie thing?" I asked one of our NICU nurses. I didn't know if this was just a normal thing or not. "It's a Tamsie thing," she said. Then our doctor in Louisville told us she'd probably grow out of that too. Now it is becoming increasingly obvious to the doctor that she's not going to grow out of it without some surgical intervention.

And so I know it's a tremendous blessing that all of those other horrible-sounding things went away. Praise the Lord all we're left with is this, and praise the Lord this is not some crazy mystery to the doctor and that it's treatable.

And now I'm ready for this to go away too. I'm ready for my girl to not have to keep having these tests, and I'm ready not to have to think about surgery!

Speaking of not thinking about surgery, here are some recent iPhone pics:
Last weekend we took the girls to the mall and let them pick out a toy at the Disney Store. This was T's choice, and E selected Kermit the frog. So incredibly random!


At the doctor's office, the nurse gave the girls some stickers to play with. They entertained themselves by slapping them on their bellies (as Tamsie is exhibiting above), peeling them off and then handing them to their Amma to put back on their bellies.
"Please, Amma?"

They also entertained themselves by making as much contact with potentially dirty surfaces as possible.  Needless to say, I didn't find it nearly as much fun as they did -- but what can you do?

I started out by wiping them down every time they'd touch the floor, but then they made a game of saying color names while running around and touching tiles that would occasionally go with the right color name... and at that point I just had to suspend my inner germaphobe. They did get a bath that night, of course -- and so far, we've stayed well! :)

Dropping stickers... this is why Mom will be sure to bring more toys next time!

Saturday we took the girls to the zoo, where we met up with Carissa and Cliff! If you look closely in this picture, you'll see a leopard sound asleep on a pole.

The three amigos!

In former days I would have labeled this picture "The Twins," but now I'm pretty sure T and E would take offense to that!
We met up with my parents for dinner that night at Molly's, where E proceeded to request salsa. When Chris reluctantly let her try some, she devoured it and asked for more! more! more! Sometimes she'd eat chips with salsa, and sometimes she'd eat salsa by itself! Girl does not take after her mama here!

E the Adventurous Eater also requested and gladly took down as many lemon slices as we'd let her have. Sometimes she'd stop and make a sour face, and then she'd lean back in for more! Perhaps she likes them since they're yellow?
I hope y'all have a happy Memorial Day! :) Thanks in advance for keeping Tamsie's health issues in your prayers!

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