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!"

Happy Due Date!

It's weird to think that today is the day Sara was supposed to be born. She's already 26 days old! That's 26 less days that I had to be pregnant (yay!) and 26 more days we get to enjoy her sweet little face.

And now, for those of you who can't get enough video...
Primary Children's Medical Center presents...

SLEEPING BABY!

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)

HAPPY BIRTHDAY ROB!!

I love you, and hope you have a great day in spite of the current trial we're in the midst of. Sara's gift to you is a fast and full recovery, and my gift to you is all my love. I feel it more today than ever. I am grateful that we have been able to grow closer together as a couple during this trying time. I know we'll be stronger as a family because of it, and Sara's life will be blessed by the strength we've gained through this experience. I love you! Thank you for the wonderful comfort and support you are to me. You're an amazing father and husband. HAPPY BIRTHDAY!

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!

Thumb Sucker

This video was taken moments after Sara was born.

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!

time for a change

Just trying out a new design. Whatchathink?

Update about Sara coming tomorrow. The doctors are having a big conference to discuss her case (and all the other heart cases) tomorrow morning, so we'll know more then.

In the meantime, enjoy the new look!

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.

Cuddles

I love holding my newborn on my shoulder, my arm supporting her with her little legs tucked up under her, her head resting on my chest, my cheek resting on her head, my hand on her back feeling it rise and fall with each breath, listening to her tiny baby noises. I could just stay like this all day.

2 Months Later

I know these are late in coming, but they just showed up on my friend's website this week. She's a photographer who is also a nurse who is also one busy lady!! And she had other photos to work on (like her sister's wedding photos!) before she could get to Halloween (lesser importance). But here they are! Much better photos of this year's (now last year's!) Halloween costumes than these were.

To view more of her amazing photography work, visit her website by clicking here.

HAPPY NEW YEAR!

If not properly swaddled, this is how we will find Sara in her sleep. We call her frog legs! This was her first day home from the hospital (notice the tag still on her leg!)

YAWN!!