Tuesday, August 31, 2010
home again home again...
Friday, August 27, 2010
Burnin' for you
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
Thursday, August 19, 2010
HOOOOOOOOOOOOOOOOOME!!!!!!!!!!!!!!!!!!!!!!!
Little Kate came home today!!!!!
Wednesday, August 18, 2010
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.
Monday, August 16, 2010
Almost there!!
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
Sunday, August 15, 2010
"I will protect her"
Saturday, August 14, 2010
Kate is an icosahedron
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
Thursday, August 12, 2010
Recovery, Day 2
Tuesday, August 10, 2010
Let the recovery begin
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
Monday, August 9, 2010
night before
Tuesday, July 27, 2010
Rash Trumps Heart
Wednesday, July 21, 2010
Heart Surgery
Many of you have been following Kate since before she was born. Others have only just met her. So, first, let me give her history.
At 18 weeks, when she was about the size of a walnut, and her heart was about the size of a small raisin, the doctors told us that she’d be coming into the world with some challenges. This first is that she has Down Syndrome, the second is that she would be born with an AV Canal, essentially a big hole right in the middle of her heart. How they docs could see that was beyond me, but we started getting ready.
At 3 months, Kate had her first surgery. She was too little for a complete repair, but they needed to do something to reduce the pressure on the cardiovascular system to avoid damage to her lungs. They put a band on her pulmonary artery to help reduce the over-circulation of blood, and that has given her time to grow and get strong.
Now, at 9 months old, she goes for her next heart surgery. This one will be far more extensive. They will essentially reconstruct her heart by building the walls of the atria and ventricles, and then splitting her single valve into 2 separate valves. It will take about 7 hours to do all of this. The surgeon that does this is truly an angel walking on earth.
She will be in the hospital for 7-10 days afterwards, and then her full recovery will take about 6 weeks. After that, we hope that her heart will thrive and work like anyone else’s. She’ll grow, and run, and play, and love.
Kate is such an amazing, loving, gentle, funny, and strong little girl. It is impossible not to fall in love with her. I have seen her steal the hearts of strangers with her hypnotic eye contact and a smile that can melt you. She has the most loving little hands and snuggles with anyone who holds her. She is a gift.
To say that it is hard to know that she is having this surgery is the world’s greatest understatement. There are moments when the thought paralyzes me. I can only hope and pray that she is in good hands. But I simply can’t express how scary it is.
We have great support of family and friends. Kate has a great village. Please send her your thoughts, prayers and love.
Much love,
Team Kate
Tuesday, July 20, 2010
Welcome
Welcome to Kate’s Blog! This is where we’ll write updates regarding Kate’s surgery and recovery. Drop by, read, write a message, send her some love, leave a prayer. I believe it all makes a difference. Thanks for being part of her village. She has so much love from all over the world. She is blessed.