One Year Ago.....

It's been exactly one year since our little Sara had surgery to fix her pinched aorta. She has grown so much since then! And as I said last month after her checkup with the Cardiologist, we are continually grateful that Sara was born in a time when she was able to have surgery and recover from what otherwise would have been a fatal birth defect. Now, one year later, she is a strong, healthy, happy little girl, and we love her more and more every day! Hooray for baby Sara!!

blanket, bunny, and sippy cup

Every time we visit Primary Children's Medical Center, we always walk out with more than we came in with, and I'm not just talking about massive medical bills! People donate items to the hospital all the time, and today Sara received her 4th blanket from PCMC, as well as a big blue bunny that a technician gave her and a sippy cup of apple juice to drink after her visit. Sara had a followup appointment this morning to check the aortic arch repair she had done back in January. They did an EKG, took her blood pressures in all 4 limbs, and did a sedated echocardiogram. The cardiologist said everything looks great! She said any relapse or re-narrowing of the aorta normally occurs within 6 months after surgery, so the fact that Sara's is doing well is a good indicator that she will not have any future problems with it. Yay! There were a few other concerns back in January with one of the valves in her heart that looked slightly abnormal, but the doctor said it appears to be growing with her and is still functioning adequately, so it is not a major concern. The only other issue was a small hole between the right and left ventricles of her heart, but she said that has closed up on its own since our last visit. So everything looks great! As the cardiologist said, "Kudos to Dr. Burch!" (the surgeon who performed the repair) -- Yes, kudos to you Dr. Burch! Thanks again for saving our baby girl. We are continually thankful for today's surgical advancements and the miracles of modern medicine. Our little girl wouldn't be here without them.

Doctor Doctor, Gimme the News

Sara had a followup with her Cardiologist yesterday, but before I tell you what she said, let me first share a small anecdote about the technician who came in to do the EKG. Let me just paint a picture for you with these four phrases:

1. middle-aged (late 50's early 60's ish)


2. painted-on, and somewhat purple, eyebrows


3. fake-bake tan resembling that of Bob Barkers


4. short cut bleach blonde hair with the roots showing

She was a nice lady and all, but there was just something not quite right about her, you know? One fry short of a happy-meal? Got a screw loose? However you wanna spin it. Anyway to do an EKG (electrocardiogram) she puts all these round sticker things all over Sara's chest (about 12 of them) and then hooks up electric cords to those to do the test (totally painless, but looks crazy cause there's all these cords attached to her). When the test is done, all the stickers have to be pulled off, and let me tell you, they are SUPER sticky! Well this lovely technician lady made US pull them off! WHat? Hey lady, that's your job. She just left Sara lying on the table and said, "Alright, pick her up and pull the stickers off. She's all done." So I said something like, "You're gonna make us do it, huh?" And when Sara started crying because it hurt because the darn things are so sticky (like 10 times stickier than a bandaid) she just laughed and said, "That's why I want you to do it." -- that made me so mad! I think I just might be writing a letter of complaint to Primary Children's telling them parents should not have to do the job of the tech, or of anyone for that matter! Can you imagine if the lady who draws blood came in and said, "OK, here's the needle. Let me know when you've filled up all these little tubes." UHG!

Ok, so now for the good news. Sara's cardiologist said everything looks great! Her blood pressures on all 4 limbs are close together which is good, and from listening with a stethoscope the Doctor said everything sounds normal (well, normal for Sara at least. She still has a valve in her heart that is a bit off, but not enough to worry about. It's still functioning ok), and the results of the EKG were good, even if the tech was a dope. :) We don't need another appointment for another 6 months. At that one they'll do a few more tests that they didn't do at this one, like an Echo cardiogram. But for now everything looks great! Yay for Sara and her little heart!

Medicaid, don't let me down!

An itemized bill from Primary Children's came today. It's ten pages, front and back. The total charges are more than the sale price of our one bedroom condo. And keep in mind, this is only the bill from the hospital. The bills from each doctor come separately. Joy oh joy!

No Evidence

Guess who is no longer the proud owner of a nasal feeding tube?? That's right, you guessed it....baby Sara! She had an appointment with her pediatrician yesterday and I told her that Sara has been doing really well on her feeding and we haven't needed to use the tube in two days, so the doctor took it out! She had to use some adhesive remover to get the clear bandage off her face that was holding the tube down. That thing was extra sticky-strong! The pediatrician also removed the hospital ID tag that was stuck to Sara's thigh with the same clear sticker bandage, so now there is no evidence that Sara was ever in the hospital at all!! Well, except for the two-inch scar on the left side of her ribcage....no getting around that one.

Here's some lovely video of before and after. Enjoy!

BEFORE: sleepy smiles!

AFTER: sneeze-meister

just chillin'

Home again, home again, Jiggity-Jig

Sara came home from the hospital today!! Only one week after having surgery! What a strong little girl. We're so happy to finally have her home again. Yippee!! She did have to come home with her feeding tube--she drinks breastmilk through a bottle so we can be sure she's getting as much as the doctors want her to, and then whatever amount she doesn't eat by mouth gets put down the tube which goes directly to her tummy! But she's not hooked up to any monitors and there's no beeping sounds anymore because we're home!! Yay!!!

These photos were taken while still at the hospital.
This one was after we gave her a sponge bath. She's all warm and snuggly in her dry towel!

Just staring at Mama!

A beauty pose. (Just imagine the feeding tube isn't there!)

Just before we left the hospital. I'm waving "goodbye!"

A Good Day

*WARNING* ~ We're just a little too exited about how well Sara is recovering thus far, and we've got lots of photos and videos to prove it!

The first time we've been able to hold her in almost two weeks!




That's her feeding tube in her nose. Soon she'll be able to feed normally. She was working her binky pretty hard tonight! She's so happy to finally have that breathing tube out of her mouth and throat!!

What a great birthday gift for Daddy!

videos

WHAT?!!

Sara's nurse from the hospital called about a half-hour ago to tell us they've removed her breathing tube and a few other tubes and have moved her to "the floor" -- she's not in the ICU anymore!! What?! That was fast! .... She still has a lot of recovering to do, but apparently it's nothing she needs to be in the intensive care unit to accomplish. I have such mixed feeling about them moving her so quickly....they wouldn't move her unless she was doing really well (YAY! -- I guess Sara decided to take me up on my suggestion for a birthday gift to her daddy! {see previous post}) but being on the floor means she will no longer have a bedside nurse looking after her 24/7. That scares me a little. I'm so used to knowing there's always somebody there taking care of her! BUT being in her own room means we can spend more time with her and even sleep there if we want, and Rob's niece and nephew can probably visit now (nobody under age 14 is allowed in the ICU's, at least that's the rule right now during RSV season). Rob was at work when I got the phone call, so I called him and he's on his way home so we can go see our little girl. Hurry Robby, HURRY!!

(photos and video to follow)

Surgery's Done!!

We're sitting in the surgery waiting room, and just finished talking with Sara's surgeon who came to tell us the surgery is over and everything went as planned. They ended up going in through the left side of the ribcage instead of the front which is good because they didn't have to put her on bypass that way. They were still able to remove the pinch and repair a portion of the arch, and everything went well! Now we're just waiting until we can go back to see her. Then it's on to recovery. We look forward to taking her home soon!

Thanks Dr. King!

Looks like they will be doing the surgery on Monday afterall! We spoke with the head of surgery today and he said Sara is scheduled for Monday morning at 7:30. HOORAY!!

For those of you who can't quite picture what this little defect is, here's a great photo to help explain it.

http://www.americanheart.org/images/ImagePicker/13002-inter-full.jpg

THE PLAN

...well, sort of.

The doctors and surgeons had their big weekly meeting this morning, and here's what they decided after discussing Sara's case:

* They will finish the full course of antibiotics (7 days, which started Sunday night) and do surgery early next week.

* BUT because Monday is a holiday (can't do surgery on Martin Luther King Jr. day I guess...) it most likely won't be scheduled until Tuesday or Wednesday of next week. So another week of waiting.

* They WON'T be extubating her (removing the breathing tube) while we wait for surgery because one of the drugs she is on which is necessary to keep her stable has the side effect of apnea, or pauses in breathing. SO, she needs the tube, even though she seems to be breathing on her own for the most part. A good sign that hopefully once she is off this particular drug, after surgery she will be able to breathe on her own pretty quickly.

* The surgeons will be going in through the front, cutting the sternum to open the ribcage in order to perform the surgery.

* They will be removing the part of the aorta that is pinched, and also repairing another section (the transverse arch) that is narrowed.

* Recovery should be anywhere from 1-2 weeks. She will be able to come home once the incision is healed, and when she can breathe and eat on her own.

I think that pretty much covers it. If anybody has any questions about anything, please post a comment and I'll answer the best I can!

Do we need a lesson in patience or something??

So it looks like the surgery won't be tomorrow morning after all. They keep pushing it back on us. Apparently they are concerned about what appears could be an infection in her intestines. Her blood work and other tests come back negative for infection, but the x-ray is somewhat suspicious, so they are putting her on antibiotics to clear up any possible infection. They will recheck the x-ray on Tuesday and if everything is all clear, they'll proceed with the surgery Tuesday or Wednesday. If not, they'll continue antibiotics for a full 7 days and do the surgery after that. More waiting!! We hate the waiting.

On a somewhat happier note, Sara had her eyes open the last few times we've been in to visit her. It was nice to see her with her eyes open, although I wonder what she's thinking! She's probably so confused and wonders what's going on!! What do babies think about anyway?

We'll post more updates as they become available. For now it's just more waiting! Thanks again for all your prayers. Keep them coming!

UPDATE:

Rob and I just got home from visiting Sara in the hospital and she is doing very well. She is very stable and we are just waiting for the surgery. At first they told us it would be tomorrow morning, but then we got a call saying it won't be until Monday! Not sure why. Maybe they just want to wait until her little heart is as stable as possible. Also, the doctors said they can probably do the surgery through the side of her ribcage instead of going through the sternum which is great. For now it's just a waiting game, but Sara seems to be holding up pretty well and the Doctors seem optimistic that the surgery will go well and she will have a full recovery and enjoy a normal childhood.

Thanks everyone for your thoughts and prayers. That's really all we can do for her right now! We appreciate everyone's love and concern.

We need your prayers

We need your help in praying for our little girl. We took Sara to the emergency room yesterday because she wouldn't eat and was very lethargic. It turns out she has a problem with her heart that is going to require surgery to fix. It's actually a pinch in the Aorta, which is the main artery that comes off the heart to deliver blood to the body. The pinch in the artery was causing her little heart to pump extra hard to try to delivery blood to her lower body. Luckily her upper body including her brain were receiving enough blood, so there is no damage there. She is in the ICU at Primary Children's Hospital, and is doing better now that she's had medical attention. She'll have the surgery as soon as she's stable enough and as soon as they can schedule a surgeon. As you can imagine, it's been a rough experience to find all of this out about our little girl! Please keep her in your prayers.