Saturday, October 31, 2009
Cath results
Wednesday, October 28, 2009
Change in plans
Thursday, October 15, 2009
Another Big Day Coming - Next Hospital Procedure
My apologies for not posting more pictures and video of late, but I wanted to let everyone know that Peyton is going back to Dell Childrens Hospital on October 29th for a follow-up cardiac catheterization. There's nothing specifically wrong. It's just to make sure that everything is working as it should. Dr. Holt will look for good blood flow to the heart muscle. He'll check for clots devloping around where they pinched off the extra plumbing. And she's got a minor leak in her aortic valve, and he's going to get a better look at that too.
Thankfully the recovery time should just be 6 hours or so which makes this a day procedure. We'll have to keep her flat (and probably restrained and sedated) during that time so that the vein in her leg can heal.
We are grateful for your prayers and encouragements. I'll keep you posted with the outcome.
Karl
Thursday, September 3, 2009
New Chapter: Solid Foods
A note from Rayna...
Hello all!
Well, we have had a week of great strides with Peyton. We thought you might want an update.
Coming back from Mexico Peyton became very chatty. She was always interactive before but now likes to have little conversations. She giggles up a storm too.
This week she decided that she prefers sitting up and will not lay down to play anymore. She sits up in the living room and plays with her toys. She also prefers not to be helped if she can avoid it.
She has been very interested in our food lately. On Monday she was not satisfied with her milk. She ate about every hour and a half. I thought it might be a growth spurt but I was wrong. She is ready for solid foods. We bought a high chair today (it matches her play pen, though not on purpose). She had her first bites of solid food today. She ate about a teaspoonful before she decided she was done. That is really great for a first try. She likes the taste and texture. She is a little impatient with the eating process. Milk is a constant stream, eating food has steps.
Along with the sitting up comes the struggle drinking from a bottle. Peyton has decided she wants to sit completely upright when she eats. This is difficult because she also wants to hold the bottle and can’t hold it high enough. It also poses a problem because when I hold it for her, it blocks her view and she is not happy with that scenario either. So, we are working on the sippie cup. She has done pretty well so far. She has figured out the handles and how to drink from it. However, it is different from the bottle so she will drink a little and then pull it away to investigate the cup. I’m sure she will get it in a couple of days. It is a lot of new experiences all at once.
In addition, Peyton has decided she likes being awake more. In the past she has been awake for about 6 hours a day. This afternoon she was awake for 4 hours in a row. Boy, she is growing up so fast!
I guess that’s all but, I think that is plenty!
We’ll have photos of the wedding and Peyton’s accomplishments soon.
We love you all!
Monday, August 10, 2009
Update from the Cardiologist & Photos
Peyton saw the cardiologist this morning. She weighed in at 13 lbs, 24 1/2 inches long. Everything is fine. Rayna tells me that Peyton didn't care much for the gel used when doing on ultrasound of her heart.
The next major procedure should be in October. At that point, the cardiologist will perform another cathetorization where he'll inject dye into her heart and with the help of fancy cameras, watch where blood flows and where it doesn't. They want to make sure the surgery took, and hopefully that the now inactive pipes are shrinking down.
A couple weeks back, a budding photographer asked to take pictures of Peyton to use in her marketing. There are too many cute ones to post here, so here's a link: http://picasaweb.google.com/wayne.augusta/PeytonSFirstProfessionalPhotoShoot?feat=directlink
Friday, July 24, 2009
Tuesday, July 7, 2009
New Photos
Captions provided by Aunt Liz..or Wissy...or whatever she decides to be called.
"How do I take over the world?" she thought to herself...
"What are YOU looking at?... Get out of my face!"
"I've been caught snuggling!"
"What weird creature is this? If I slobber all over him, will he wake up?"
Monday, June 29, 2009
New blog
I've started a new blog for my journey. If you want to check it out, the address is http://khanschen.blogspot.com. Right now, I've got an intro note up, but I'm writing up something that I'm wrestling with from my small group that should be up tomorrow.
Karl
Friday, June 12, 2009
Day 69 - Videos: Peyton @ Church & Peyton's Dedication & More
Mega blog post today. Let me start with Peyton's first time on stage at church. Enormous thanks to Jamie Hatcher for getting my video problems solved. This video is in 2 parts, so be sure to watch them in order.
Part 1
Part 2
Last night Rayna and I dedicated Peyton in front of friends and family gathered in our backyard. Thanks to Dustin Wiggins' little Mino video camera, we're able to share it with y'all. I've included the text that Rayna and I wrote for the dedication below the video in case some parts of the audio are less than clear.
Peyton's Dedication
Karl: Thanks for coming tonight. Rayna and I really appreciate each of you taking time out of your busy schedules to be here with us. The road we walked over the last year was littered with adversity, sadness, fear, grief, and loss. And yet, with each of you alongside us and God’s spirit within us, we were able to take one step, then another, and then another. We felt first-hand the power and blessing of community and living open, authentic lives. Tonight is both a testimony to that power and a celebration of that blessing.
Rayna: Tonight we are dedicating Peyton, which really is misnomer. Peyton will have no memory of the words said here. So really Karl and I are dedicating ourselves and our parenting. We want to make a series of commitments—some general, some very specific—before you, Peyton, and God for how we purpose to raise Peyton. Once said, we will invite you to join us in this journey. So let’s begin…
Karl: Peyton, we gather tonight with our family and our spiritual family to express commitments to you. We are asking God and each of them to stand as witnesses and to serve as the strength and reinforcement of these vows. Our first commitment to you is to raise you in a household that points to our risen Savior. In our activities and conversations, priorities and values, we want you to see, hear, and know the sovereign, holy, love-filled God, the crucified Son, and the transforming and empowering Spirit.
Rayna: We commit to telling the truth. Even when the truth is hard, the words that come out of our mouths will be reliable and genuine. We will not exaggerate or manipulate. We will not recycle lies like the Easter Bunny or Santa Claus or Major going off to live on a farm. We will not omit, and we will say the last five percent.
Karl: We commit to living lives of authenticity and integrity. What you see on the outside will reflect the truth of what’s going on inside us. We will own up to our many faults and imperfections. We will not hide our brokenness. Our motto will not be “Do as I say, not as I do”, but rather “Follow me, as I follow Christ.”
Karl: We commit to doing conflict well. We will not avoid or ignore conflict. We will model humility, truth, and the pursuit of reconciliation in how we fight and argue with each other and with you.
Rayna: We commit to grace. We promise to love you unconditionally, to show you unmerited favor the way God has shown it to us.
Rayna: We commit to purity. We will teach you about the sanctity of your body, mind, heart. We will work with you and for you to guard against temptations, and we will come alongside you and, with God’s strength, restore you when you fall.
Karl: We commit to rest. We will guard against over-commitment and busyness in our schedules…and yours.
Rayna: We commit to deliberate boundaries. We vow to say yes as often as we can, to say no when we must, and not just choose the easiest answer. We will lead and discipline you with clear and attainable expectations. We will let you experience the consequences of your choices.
Karl: We commit to nurturing a heart for the poor. We will expose you to different socio-economic groups, and show you in our actions and in the scriptures God’s heart for the orphan, widow, and alien—the marginalized of society.
Karl: We commit to relationships and community. We will foster and prioritize deep community in our lives. We will encourage you in settings where you can develop deep and lasting friendships. We will demonstrate solving problems in and through relationships.
Karl: We commit to servant leadership. We will not ask you to do what we are not willing to do ourselves. We will not lead by lording over you, but through relationship.
Rayna: We commit to prayer. We will bathe you in prayer, lead you in prayer, and show you what an on-going relationship with God looks like: dependency, thankfulness, intercession, submission, and praise.
Rayna: We commit to modeling and teaching stewardship. Our time, money, talents, and possessions are not ours, so we will show you how we invest them as our Savior would desire.
Karl: We commit to teaching you the entirety of God’s Word.
Karl: We commit to raising you as a Kingdom bringer and training you to live for eternity.
Karl: We commit to investing in our marriage. We will prioritize our marriage in our schedules and over our other responsibilities. We will pass along to you the heritage of a thriving marriage through good times and bad.
Rayna: We commit to pursuing and granting forgiveness, especially when we need them from you.
Karl: We commit to seeking out your strengths and giftedness. And when we find them, we will fuel them with opportunities for you to fully blossom. We will celebrate you and what God does through you.
Karl: I commit to loving Rayna by dying to myself. I will set the standard for husbandry and how men should treat you—a standard by which you will measure any man who wants your hand in marriage or even just a date.
Rayna: I commit to honoring Karl. I will show you by my actions what a Godly wife and mother looks like.
Karl: I commit to not buying a shotgun and burying your prom dates in our backyard.
Rayna: We commit to promoting a healthy body and a healthy body image.
Karl: I commit to not bringing out your baby pictures in front of your dates. On second hand, I’m not gonna make that promise because by your wedding those pictures are coming out!
Karl: I commit to training you on Excel and PowerPoint.
Rayna: I commit to teaching you how to act like a lady and still have fun.
Rayna: I commit to stretching your tastes and skills in the kitchen.
Karl: I commit to introducing you to your sweet-tooth.
Rayna: I commit to training you in the art of bargain hunting.
Rayna: I commit to training you in the art of shoe shopping.
Rayna: We commit to equipping you with the necessary life skills before we kick you to the curb.
Karl: Like how to change a flat tire and how to change your oil.
Rayna: How to vote.
Karl: How to make basic home repairs and improvements.
Rayna: How to buy a car and a house.
Karl: How to do your taxes by becoming well acquainted with your CPA.
Rayna: How to balance your checkbook.
Karl: And certainly how to squash bugs.
Karl: Lastly, I commit to teaching you how to root for the Cowboys and the Longhorns, and to impart an understanding of the game of football.
Karl: Okay, that’s our bit. Those are our commitments to Peyton. Now it’s your to turn. We are going to ask you four questions. After each, if you agree, please respond “I do”.
Karl: Do you commit to modeling Jesus to Peyton, showing her sacrificial love, grace and truth, submission and servanthood?
Rayna: Do you commit to loving Peyton, even if that means through discipline?
Rayna: Do you commit to holding us accountable to these vows we make here today, and compassionately calling us out when we drift and lose sight of them?
Karl: Do you commit to honor us as parents, upholding our values when you interact with Peyton?
Karl: We’d like to wrap up this evening by inviting whoever feels led to pray for us, for Peyton, and for this spiritual family. Remember sound gets lost outdoors, so please speak up. Don, when you feel the time is right, would you please close?
Of course, we've got to have some photos too, compliments of Jamie Hatcher and Lyndsi Parker...
Lastly, Rayna and I are both now on Facebook, so look us up!
Wednesday, June 3, 2009
Day 60
Brooke Ellsworth: Baby-Sitter Extraordinaire. Holding Peyton after feeding her while soothing Sabrina after reading 4+ books to her.
A deceptively small look for Peyton, all coiled up.
Peyton thinking "Can you put the camera away already?!?!?"
Monday, June 1, 2009
Tuesday, May 26, 2009
Open House
Karl
Monday, May 25, 2009
Day 51
A request was made for more photos, so here goes...
Snuggling with mommy
Late night TV watching with Daddy...
Big yawn!
Big smile!
Playing with Dad.
Super Baby!
Her first play date, and Addison tries to give her a black eye!
Strange sleeping position
A preferred sleeping venue...and yes, that was a long night.
This week I should have a link to Peyton's first appearance on stage at church, so I'll post it as soon as I have it.
Thursday, May 21, 2009
Day 47
Saturday, May 16, 2009
Day 42
NO MORE ANTIBIOTICS!
Six weeks post-birth, and the only medication Peyton's on now is baby asprin. Next step: sleeping through the night again. We got lucky a couple nights ago, but the last two have been brutal.
Monday, May 11, 2009
Day 37
Rayna and I are running a zone defense against Peyton's eat-sleep-poop schedule. I'm on call midnight to 4am, and Rayna covers 4am to 8am. That way only one of us gets up at each summons and each of us gets a continuous block of sleep every night.
We are both missing our social lives, but the contact precautions expire on Friday. I can't wait. We've got some serious cabin fever here.
The cardiac surgeon said today that all looked well and that we didn't even need another follow up appointment with him. The instructions were simple: call if the exterior healing doesn't progress. Easy enough.
The nurses at the surgeon's office cooed over Peyton, too, and that's always music to this parent's ears.
The baby acne is retreating, which while superficial, is good to see as well.
Wednesday, May 6, 2009
Day 32
Hey folks,
I know it's been a couple days, but Peyton's taking a nap, so I thought I could catch y'all up. Since Saturday, Peyton's visited her pediatrician and her cardiologist. Unfortunately, Peyton will be on contact precautions (doctor-speak for quarantined) through May 15. That means no having small group over here and no taking her to church until then too. The measure is to protect her form anymore strange germs and to protect everyone else from her drug-resistant staff germ she's carrying.
Talk about a cramp on our style! We've missed a luncheon for families sponsoring children in Zambia through World Vision, a small group gathering, and just going to church--all things we value highly. I tell you: this hermit living is for someone else.
We've got the gas-producing foods out of Dairy Queen's system (a.k.a. Rayna) and introduced Peyton to mylacon (or something along those lines), but the antibiotics Peyton's taking are giving her diarrhea. So she's regularly got an upset stomach, especially at night it seems.
Peyton's also on some pro-biotic to replace the good bacteria in her GI tract that being killed off by the antibiotic. I'm not sure what good those are doing other than thoroughly stink up her diapers.
By the way, all you cloth diaper fans, I gotta say there's no way we'd go through diarrhea with the cloth diapers. We change her every hour or two during the day. That necessitates a robust supply of diapers, and there's no way we be able to clean so many every day. We'll go cloth once her innards settle down.
The cardiologist dialed down Peyton's prescription for the diuretic to avoid potential dehydration with diarrhea and all.
Another murmur was detected at the cardiologist's office; however, with this one the plan is to watch and see how her heart develops over the next 6 to 12 months, and then determine what if anything should be done. He wasn't overly concerned, and the rule of thumb is: if the doctor ain't anxious, then we ain't gonna be anxious either.
Now, I have videos to share that I think are extremely cool; however, I suspect that many reading this will not share my appreciation. The images are of Peyton's heart during the actual procedure. They're not gory like in a movie, and you don't see Peyton's face. Nonetheless they are still parts of the human body that people don't normally see and as such may make some folks uncomfortable. So rather than attach them in this post, I've put them on YouTube so that those who want to see them can, and those who don't won't have to. The links are at the end of this post.
The remainder of this post is commentary to help folks better understand what they are looking at in the videos, so if you think you'll be grossed out, then I'd say stop reading here.
Okay for those courageous souls, here's some general info you need to make sense of it all:
1) To orient yourself as you look at each video, know that to the left of the image (off the screen) is Peyton's head. To the right, her feet.
2) Peyton's skin looks fake. Reason being two-fold. First, the cleansing agent used before the surgery has a dark tone to it. Second, the doctors place a tinted film of sorts across the skin before cutting her open. I forget the medical explanation of the film.
3) The fistula they closed is the large throbbing tube running down the middle (left to right) of her heart. In the first video, the cardiac surgeon is getting set up and establishing baselines. In the second, he is experimenting with temporary clamps at different points on the fistula. In the third, he is running the thread to close of the pipe.
It's amazing how large this extra pipe was compared to the rest of her heart.
http://www.youtube.com/watch?v=MrVmTWlHl8w
Saturday, May 2, 2009
Day 28
I'm getting used to my new job: the heated mattress. It brings me great joy for Peyton to find comfort and rest in the arms of her dad. Now if only his arms were up to the task as often as she'd like.
After our first night without crying (what an enormous blessing!), we had a little scare today. A low-grade fever and vomiting warranted a call to the cardiologist. He said to watch closely. If her fever climbs over 100.5, then get him back on the phone. So we wait and watch.
FYI: ear thermometers are not accurate when it comes to newborns. Another lesson we missed in the instruction books.
Of late, I've had a number of conversations with folks about the future of this blog. While my original intent in writing was to communicate more efficiently the goings on with Peyton in order that friends and family could pray more specifically for her as well as for Rayna and me. What actually happened turned out way more cool.
First, our friends and family shared the blog with their friends, churches, and prayer circles. I can't give an actual number of people praying, but Rayna and I heard from people around the US and the globe expressing prayers. For that I am eternally grateful, and I look forward to the day in heaven where we'll finally see just how many were praying and thank each of you in person. For now, THANK YOU, THANK YOU, THANK YOU!
Second, I found an outlet to take all these blitzing thoughts and raging emotions out of my head and process them aloud so to speak. To take a step back from the storm, see what God was about, and realign my perspective to His...invaluable to persevering.
Lastly, several folks have shared that God has used my reflections, sharing, and the comments of so many to encourage and challenge them. Totally unintentional, but way cool that God would use this turmoil to reshape how people relate to and understand God as well as life and parenting.
So what should this blog be about moving forward? My thinking right now is that this particular blog should stay focused on Peyton's medical journey. That's why so many have email subscriptions and others check back here quite regularly. I'll continue to post pictures and updates from time to time about Peyton and her follow-up appointments so that you can see the fruit of your prayers. But, I think this is likely that last extended post barring another catastrophe.
As for having a place to process what God is doing in and around me, well, I'm still looking for a solution. Rayna's advocated that I continue to write somewhere somehow. One option may be another blog to digest life, parenting, relationships, and the journey God has me on. Pray for discernment and insight in determining direction.
A side note: while composing this post, Rayna paused feeding Peyton for a burp session. When she finished, she asked Peyton if she wanted her daddy. Looking at me, Peyton responded by flinging her arms wide out as if to say, "Pick me up, Daddy!"
Friday, May 1, 2009
Day 27 - Part 2
Day 27
We also found out part of the reason Peyton isn't sleeping through the night. The night nurses love having Peyton here, so because the night workload is diminished, they often carry her out to the nurse's station and take turns holding her. So our spoiled daughter get the royal treatment and spends her nights in the comfort of people's arms instead of her crib.
Now they say that Peyton may come home tomorrow, but we're not holding our breath.
Thursday, April 30, 2009
Day 26
Wednesday, April 29, 2009
Day 25 - Part 2
After the surgeon met with the cardiologist and the attending, here's what we know:
Yes, the white blood cell count is high and indicative of an infection.
Yes, x-rays have been taken, lumbar punctured, blood cultured, and urine sampled. So far the urine looks clean. The x-rays look clean too except for a broken collarbone complements of Rayna and delivery. (You'd think somebody would have noticed that sooner.) The other tests will take a little longer.
Yes, the wound sites look a little irritated/infected. The cardiologist and the surgeon agreed that chest tube exit wound looks like they would have expected and are not concerned. The incision on her sternum may have a minor infection perhaps caused by Peyton prematurely pulling off the bandaging.
Yes, Peyton has a history of spiking white blood cell counts, so while not normal, it could be that Peyton has an overactive immune system, over zealous in responding to a minor infection.
No, instead of an extended stay again at the 4-star Dell Children's Hotel, err, Hospital, Peyton could be released as early as tomorrow.
Thanks for the prayers!
PS: No, the medical team does not believe this to be swine flu.
Day 25
Last night, Peyton showed unusual discomfort when being held horizontal, then vomited. Rayna called the on-call nurse and got an appointment for first thing this morning with a pediatrician.
At the Ped Office this morning, Peyton had a 100.1 fever, which was a one-way ticket back to Dell. Arriving at Dell, the doctors found two infections: one where they cracked open Peyton's chest, the other where one of the chest tubes was inserted. Before starting antibiotics, the doctors are running some cultures so that they don't have to blast her with too many drugs.
Saving the biggest concern for last, the admitting doctor is consulting with the surgeon to determine if Peyton needs to be reopened (read as another open chest procedure) to totally eradicate the infection.
Again, coveting prayers.
Monday, April 27, 2009
Day 23
Rayna and I have been up and down as Peyton sleeps in 2 to 4 hour increments during the day, but when night comes, there's no telling. We suspect that she may have some excess gas from the food Rayna's been eating lately--foods that we've just discovered have a connection to gas. We'll see what the pediatrician has to say tomorrow.
Not exactly deep thoughts this evening, but sleep deprivation will do that...
Saturday, April 25, 2009
Day 21
A day of firsts... Peyton's first time to spring a leak on mommy while having her diaper changed...Peyton's first time to spit up all over daddy...Daddy's first time to find poop on his hand after a diaper change...
Ah, the new-found joys of parenthood. Just think, in 18 years I'll be on the hook for what, maybe $1,000,000 for college tuition? Or in 25 years--make that 45--a wedding for another small fortune. Such joy.
My Dad handed over hundreds of photos he's taken thoughout this journey, so here are some sights from along the way.
Let me introduce my webmaster, ghost-writer/publisher, and Apples-to-Apples nemesis (a.k.a. Lyndsi Parker)
David Pemberton, Will Blackman, & Don Ellsworth
Marilyn Ingram & Lou Ann Dick
Eddie Dick, Jamie Hatcher, & Rachel Ham
Grant & Stephanie Perkins
Julie Thomas & Rachel Ham
Lyndsi Parker, Sarah French, & Dustin Wiggins
My IT Department (Donnie & that Parker lady)
Carl & Barbara Conley
Terry Taylor
My sister, Kathleen, who is sooo excited to have someone new to play with!
My folks bought this cake as a surprise for Peyton...unfortunately she never got to see it.
My mom, Amy Hanschen
A decorating team surprised us when we got home with Peyton. I'm not sure who was all involved, but I think Barbara Conley did the decorating.
Meet Will Thomas, owner of one of the most adorable smiles on the planet.
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