home again home again...

A friend mentioned that I needed to update the blog, since I hadn't since Kate went back into the hospital.

All is well, Kate came home again last Friday night. It isn't exactly clear what the problem was, but it was likely a virus and unrelated to the surgery. I think she just wanted all the attention again that the nurses give her because she's such a cutie.

So she's home, and healthy. She is suddenly growing like a week, and laughing and giggling all the time. We'll keep the blog occasionally updated with the big news, but otherwise, you can still look for the Daily Kate on facebook.

Much love!

Team Kate

Burnin' for you

Well, evidently Kate was missing all the attention she got from the hospital nurses, so she cooked up a plan to go back.

Last night I cam home from a great first night's class to find Brandi looking pretty exhausted and Kate looking pretty restless. But oh, the night had just begun. A mild fever kept her hot, sweaty, irritable and just generally loud and fussy. All night. Did I say all night? Yep, all night. By 7am, her fever was only going up and it crossed over that threshhold that the nurse had told us when she was discharged. So I called the advice nurse. 30 minutes later, i was checking in with Little Kate at the ER.

Did I mention she was awake all night? Well, y'all also know what that implies...I was too. Just sayin'.

So back to the ER...by 2, she had finished a chest xray, echocardiogram, an array of blood tests, seen 2 pediatricians and her cardiologist. And, nobody could figure anything, except that she was hot. So the admitted her out of an abundance of caution.

I like that they use that abundance of caution. She is blessed to get this kind of care. So now, she pretty much just being watched. Her fever is up and down and up and down and up and down. But the good news is that she did finally rest...but not until about 7 pm. (Which of course means taht now that it is midnight and I am ready to collapse from being tired that she will now be wide awake! But alas! There is a wonderful nurse here tonight to help answer those midnight cries who is a bit more used to the night shift than I am.

She won't go home until the fever subsides. We are hoping that it goes away with the same manner that it came...quickly. I'd sure like to be back home tomorrow.

We'll keep you posted. Much love,
Team Kate

HOOOOOOOOOOOOOOOOOME!!!!!!!!!!!!!!!!!!!!!!!

Little Kate came home today!!!!!

What a celebration! And what a journey! Seriously, looking at her today, you would never know that 9 days ago her heart was rebuilt. That 8 days ago she was miserably uncomfortable. That 7 days ago she was nowhere near smiling...Today, you'd look and see a smiling, giggling, cooing, flirting little squirt who is already back to playing with her big brother and tugging on her favorite labrador for kisses. Grandma Diane is finally getting to snuggle her forever and is completely adoring every moment.

Just fyi, Kate chose today's music. The last week, I've tried to thematically match the tunes to the post. Today, I was hunting for a song of celebration. Song after song got no reaction from Kate. But when I chose "Everybody Dance Now" she started to wiggle and groove, and then she started to completely giggle and couldn't stop. Perfect.

Thank you for all of your thoughts, prayers, notes, emails, comments, likes, and most of all, love.

Kate is an incredibly special little girl who I know will fill this world with pure love. I am glad she has touched your heart.

Much love,

Hallie, Brandi, Rhys, and Kate (and of course, Dodger!)

Feeling stronger every day

Kate got her chest tubes out yesterday, and as you can see she's pretty happy about it. She flipped right onto her tummy and started back to work on learning to crawl. I am amazed at her strength and determination.

I also got to actually hold her for the first time in a week. I thought she might want to cuddle and snuggle, but after about a minute of that, she pulled right up to a sitting position, where she stayed for the next our. She waved and blew kisses to anyone who went by like she was in a parade. What a sweetheart!

She comes home tomorrow barring any surprises today. I have a suspicion that they will send us home with some oxygen for when she sleeps, but we'll see what happens. We are just happy that she's headed home soon.

Much love!

Team Kate

Almost there!!

Today I walked into Kate's room and she SMILED!!!!! What a treat. I have missed that smile so much. It wasn't her biggest smile, but it was definitely there. And then, as if that wasn't treat enough, she giggled a soft giggle and then spent the next hour touching my face and my faux hawk. I believe she is starting to feel better!

The chest tubes will come out tomorrow, and with that she will get to lose the oxygen tube/mask in her nose. She is going to be SO happy about that. The best part about tomorrow will be getting to finally hold her.

And then....she's comin' home!! Probably Wednesday, if not then Thursday. How about that?? It seems to take forever, and then at the end, the time just flies. I am glad we are in the flying stage now.

Thanks for all the thoughts and prayers. She's got a whole lot of love, this little one.

Much love,
Team Kate

"I will protect her"

Today as Brandi and I were leaving for the hospital, Rhys said to B, "Mama, I want you to tell Kate something for me. tell her I love her, and I will protect her." Now if that isn't enough to just melt your heart! It is amazing how much love a 4-year-old can feel for his baby sister. He really misses her, and can't wait until he gets to visit, and even more, he can't wait until she comes home.

The good news today was that Kate was doing well enough to move her out of the PICU and into the regular pediatric wing. She still has her own room, which is more comfortable for us visiting, and still has a nurse assigned to only 1 other patient. She also still has the 3 chest tubes in and an oxygen mask with two little tubes that shoot pure oxygen into her nose. She really dislikes all of these!! She can remove the oxygen mask in a fraction of a second, all you have to do is look away for a moment! The chest tubes don't just annoy her, they actually hurt. We are hoping that all the drainage comes to an end so that she can get those taken out. In the meantime...morphine!!

She had a pretty good day. We are still waiting for that smile, but she certainly showed some good ol' Kate spunk. She kept trying to roll onto her tummy like she was going to just crawl away. she played with her feet and kicked, and for a while when I was cuddling her, she put her arm up on my shoulder and gave a little hug. Maybe, just maybe, we've turned that elusive corner.

Thanks again for all the positive thoughts! We enjoyed seeing some good bubble photos, especially from cousin Josephine. (When I showed Kate the picture on my blackberry, she tried to take it from me. I think she wanted to text her cool Seattle cousin!!)

Much love!

Team Kate

Kate is an icosahedron

An icosahedron is a 20-sided figure. I say Kate is an icosahedron because every time I feel like we have turned the corner, there is another corner. It's fevers, and potassium levels, and extra fluids, and general discomfort, and contact rashes, and and and. And it's all part of recovery. She's doing just fine, it's just that recovery is hard.

Here is a list of other things that are hard:
Hearing her cry and not being able to just pick her up and hold her.
Not being able to make the hurt just go away with a kiss and a bandaid.
Leaving her each night at the hospital.
Leaving her sweet brother each day to go back to the hospital.
Waiting.

I know it's all just time now. She gets a little better each day, even with all the challenges. And in 2 months, she'll likely be right back to her old self working on crawling and getting into all kinds of mischief. But for right now, tonight, this is hard.

So as not to leave anyone on a downer note, she played with bubbles today. She was crying and uncomfortable, but had already had all her medicine for the pain. So the nurse brought in some bubbles, and for the next 30 minutes, as I blew them, you could just see total satisfaction in her eyes. She watched, and tracked, and savored them. And she stopped crying. So, as a little tribute to Kate, go blow some bubbles today and bring some joy into the world. And if you do, take a picture and send it to me. we'll print it out and put it up on her crib so she can see all the fun.

Much love,
Team Kate

In her own words

This is Kate, last night, describing in her own words how things are going.

Recovery, Day 2

So it's been 2 days since the surgery, although it feels more like 2 weeks!

It's my understanding that recovery for any infant heart surgery is a challenge. It makes sense, they reconstructed her heart!!!! Suzanne, my dear friend who is a perfusionist, told me that this surgery is actually far more complex than an entire heart transplant. So of course, getting over it isn't easy.

But, in light of that, Kate is still doing pretty well. Sure, she is not always comfortable. She cries and wiggles, sometimes thrashes, she tries to pull every single tube and iv out, she sleeps a lot, and sometimes can't sleep at all. But, she is eating, and sometimes she wakes up and looks around, and she holds my hand and pats whoever stands near. We'll know when she's finally truly feeling better though when she smiles her beautiful little smile.

I was thinking today about the surgeon. I have always thought that I have a job where I make a difference in people's lives. And, I do, kind of. But this guy...boy does he make a difference. Heck, I teach math, he repairs hearts. What an amazing gift. I saw him yesterday and found myself just flailing for words. What do you even say that could express how grateful we are for what he does? And then, there are the nurses. These gals are so great, so caring, and so completely fantastic at what they do. I can't even being to express my gratitude to all these heros.

And lastly tonight, I just want to say thanks to everyone who has taken the time to send little Kate a message, no matter how big or small. Whether an email or a phone call, or even just a "like" on a status update. You have no idea how that love helps. So a quick shout out to the Egger kids who like dancing to the playlist, and little Ryan Burke who listens to the Rainbow song with his mom...hug your moms tonight. Big.

Keep thinking of little Kate, and I will keep updating.

Much love,

Team Kate

A full day of recovery in pictures

Let the recovery begin

Boy 8 hours can be a long time!!

This morning at 7, Brandi and I gave Kate her kisses as the team wheeled her away for the OR. Kate was all smiles and rode away lying on the tummy with her arms stretched out like a SuperHero.

And then we waited. It felt like forever. They don't give you updates so you just kind of wait and hope and wonder. Cat came by in the afternoon to keep me entertained, and (this will put it all in perspective) I was too stressed out to even play Blokus. But eventually, we saw them wheel Little Kate by on her way to the PICU. And then we waited some more. It was about another hour and a half before they got her all situated. Finally, at around 3:45, we got to come in and see our little champ.

Uncle John describes it best when he temporarily named her "Kate of Borg". She has tubes and wires coming out of arms, feet and mouth, and does look pretty reminiscent of John-Luke Picard as Loqutus. Kate of Borg. Nice one! It's good to get to relax a bit and find some humor in it all.

She is resting now with the help of some good fentanyl. The team of doctors and nurses are planning to try to extubate her yet tonight. She looks good, not too swollen with good color.

They tell me that the surgery went well. The repair of the walls went well, as did the splitting and reconstruction of the valves. Evidently, the two valves are not showing any leaking so far, so the team is pretty pleased.

And the rest of the family is hanging in there. Rhys is happily spending special time with his Grammy. Brandi is holding it all together at home and I'm staying with Kate for now. I think after we get through the next few days our stress levels will all come down a bit.

Thanks for all the support and love. I've done a pretty good job of holding my emotions together, but tonight when I saw all of the people who simply "liked" Kate's update on my facebook status, I finally dropped a few tears. It sounds a bit hokey, I know, but it was just very warming. It's so nice to know that this beautiful little girl has such a world of love and support. Thanks for that.

Much love,
Team Kate

night before

We checked Little Kate into the hospital this morning for her surgery tomorrow morning. It's a tough night for me.

So here's what is happening tomorrow. Her surgery is the first of the day, so they'll take her down around 6:30. The surgery will take about 7 hours. In that time, they will basically rebuild the walls of her heart and split her single valve into 2 separate valves. They will try to use some of the outer sac of the heart to rebuild some of the walls, but probably will end up using goretex for this. The two valves are made from the one valve that is currently there. After they are certain that everything is working, they will wire and stitch her back together. All of this happens at UCSF, she is in good hands.

Kate was doing just fine today, she spent most of the day giggling and blowing kisses at the doctors and nurses. She's in good spirits and is strong. I stayed with her until she fell asleep and then came home to sleep myself. Brandi and I will head back to the hospital before sunrise, and Rhys will spend the day with his Grandma.

It was hard coming home tonight. It wouldn't have been any easier though to stay. Tomorrow is a hopeful day, and I know that the point of it is all positive. It's still scary, even though I know it is best for her. It is so hard sending such a tiny baby in to something so big. We just have hope and faith.

So please send your best thoughts and prayers to Kate tomorrow. We'll keep you updated.

Much love,

Team Kate