Day 26

Inflamation going down. Antibiotics working. No other signs of trouble at the moment, so Peyton should be coming home tomorrow if the lab results come in early enough in the day. So one more night of crying-free sleep before we return to the insanity of normal parenthood.

Day 25 - Part 2

Amazing what can happen in the span of a couple hours.

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.

Yes, Peyton will start antibiotics shortly and monitored diligently so as to not miss something.

No, as of now, plans to reopen Peyton's chest to cleanse the wound are off the table.

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

Just when we thought the drama was done, Peyton was just admitted back into Dell Children's Hospital.

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.

Day 23

What time is it? Better yet, what day is it?

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...

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.

Day 20 - PM

Okay, yesterday afternoon...great. Last night, not so much.

Peyton napped on Daddy, napped with Mommy...then didn't sleep all night. Much like the transition from PICU to IMCU was a day full of over-stimulation and subsequent crankiness, so too was the transition home. Rayna did the 4am to 6:30 shift, and I took over and finally got her to sleep. Of course going back to sleep is not really an option when your stomach starts crying for food after the baby stops her crying.

All I want to do is quote Danny Glover..."I'm to old for this..." And yet I'm still on the starting blocks of this race. Bummer. Gonna need more grace.

Wayne and I finished hanging the new crown molding this morning, a project so rudely interrupted by Rayna's labor. Now Rayna can work her magic with caulk and paint and actually make it look good. But the headache of being up and down with a fussy baby throughout the night looms large.

Thankfully, Peyton slept most of the day today and didn't seemed bothered by a nail gun or miter saw.

PS: Rayna dressed her in a shirt today that says "Sleep is for the weak!"

Day 19 - PM

Day 19 - AM

An exciting day today. Rayna and I have to attend a CPR class today, and then we get to take Peyton home. Amazing. Unbelievable. Surreal.

Peyton is gonna go from having some of the highest paid babysitters taking care of her every need and whim to me. Poor kid is in for a shock. :)

I probably won't get a mid-day post in today, but I'm sure y'all will understand why. I'll try to get some photos of the big day posted tonight, but no guarantees.

Day 18 - Afternoon

How does God work?

Try this on for size. Rayna and I had a miserable year in real estate last year. As I recall, our business dropped by well over 50%. Obviously we weren't excited about the downturn. It put a halt on our return mission trip to Africa this year. It killed our hopes of moving closer to friends and church any time soon.

Rayna got pregnant within a month of coming home from Africa last summer. Had it taken any longer, we probably would have delayed trying to have a kiddo because of the financial upheaval we found ourselves in was, shall we say, less than ideal for a new financial burden. But by August, that ship had sailed, and we were going to have a baby.

In September, Rayna had a prompting to try applying for Medicaid and food stamps.

With the market down, I terminated my membership with the Austin Board of REALTORS and started looking at other jobs...to no avail.

By December, we got to a place where I said to Rayna, "I don't know where God is taking us. I don't know if he's gonna provide or if we're gonna head for bankruptcy. Whichever road He chooses, we need to walk with as much fidelity and obedience as we can muster."

We headed up to Rayna's family in Massachusetts for an early Christmas vacation where we got word that Rayna's mom had only a few months to live. God, how are we going to get through this? Our primary bread winner needs to be in Austin and Worcester at the same time?!?

God, I trust that you've got a plan. I don't know what it is or where we're going, but we're gonna do our best in applying wisdom and being there for Rayna's family.

What started with a plan for Rayna to rotate every week and a half between Texas and Massachusetts ended with her a total of two months out of three up north, and I was up there 6 weeks too. Had either of us had 8-to-5 type jobs, it's unlikely that such an extended stay would have been possible.

Having endured the death of Rayna's mom, we returned home to get ready for Peyton's arrival. God had provided several influxes of cash outside of work that kept us financially afloat.

Then the morning of April 5th came around, and the decision was made to transport Rayna to the hospital. God, this is a $15K to $25K expense. I don't know where the money is gonna come from to pay it, but its the right thing to do so I'm gonna trust you.

God, I have a torn up wife and daughter in the NICU. I have zero capacity to focus attention anywhere else.

God, the NICU/PICU could cost $10K to $25K per day?!?

God, my daughter's chest has to be cracked open!?!

God, a pediatric cardiac surgeon's skills cost how much?!?!?!

GOD!?!?!?!?!?

A couple days ago, we received notice from Medicaid that Peyton and Rayna are covered. Why? Because we made too little money last year and because Rayna had applied ahead of time (again, because we made too little). Only God can orchestrate 12 months of famine in order allow us to love on our family and keep us from a lifetime of debt from medical bills.

My understanding of Shadrach's, Meshach's, and Abednego's time in the Nebuchadnezzar's furnace is growing with greater appreciation for the power of meeting God in the raging fire. I was listening to John Ortberg teach the other day, and he begged the question as to whether or not American Christianity too often prays to avoid the flames, the hard circumstances, the pain, and subsequently sacrifices the opportunity meet Him in a greater way in the thick of it all.

Father, you have been with us through this whole ordeal. I will never fully comprehend the full scope of your plans, but I pray that you will etch this experience in my memory and that I will respond to you with greater trust and obedience when the next storm comes.

Day 18 - AM 2

Cardiologist just told Rayna that Peyton will be released as soon as we complete our 11am CPR course tomorrow. Thank you, God!

Day 18 - AM

Another great night of games with the small group (though I'm ready to get back into Deuteronomy with them, so next week, guys, be ready). Lyndsi, if you win another game of Apples to Apples, I'm gonna... :)

The breastfeeding is improving. The dairy queen is returning to full force. Now if Peyton can get her stamina up, we'll be in good shape.

A couple photos from yesterday... My dad's first time holding Peyton, and the hospital's cafeteria being taken over by our small group.

Day 17 - AM

Peyton is off the oxygen. I repeat: Peyton is off the oxygen. And she took 60 ml by bottle this morning. Woohoo!

One of the surgeons checked in with us this morning and said Peyton was looking good and would likely go home tomorrow or Thursday barring any surprises.

Rayna's milk is picking back up. It frustrates her to have the physical process of milk production so easily and quickly disrupted by emotions. When Dr. Fox came in to update us this morning, Rayna was secluded in our room's private bathroom for pumping. Agitated over not being able to hear Fox's report, she saw her milk stop immediately.

Here's a photo of Peyton having her PICC line removed this morning...

Day 16 - PM

Here's what we know. Peyton's lungs are still battling with fluid. The doctor upped the diuretic and wants Peyton off the oxygen before sending her home.

As for feeding Peyton, well, Rayna's milk production dropped off drastically over the last two days. Thankfully, we were able to work out a plan with the medical team to stop trying with the bottle and return to breast feeding. Hopefully that will get my dairy queen back in full production.

So now the timeline for getting Peyton home looks like it could be the middle or end of this week.

Here are some photos from today...

Day 16 - Noon

If you were wondering or thought you missed an update, have no fear. Nothing was posted yesterday. I had a lousy day most of yesterday with a headache like nothing I've experienced in as far back as I can recall. So rather than risk loosing control of my tongue (or in this case my finger tips), I opted for a nap, a nice 3-hour nap. Combine that with an Advil-PM enhanced night of sleep, and I'm doing much better today.

Peyton's doing alright. I mean everything short of heart failure seems fine to me. She's doing some bottle feeding, about 10 to 15 ml per feeding; however the doc wants her eating 80 ml, so we're pushing 60 to 70 ml through the NG tube.

We're getting conflicting reports on when she can come home. Could be today, tomorrow, or next week...all depends on who you ask.

Day 14 - Afternoon

I thought I'd start off with a picture of Peyton's new digs. They upgraded her to a crib from a specimen tray.

Yesterday was a tough day. Lots of Peyton crying. Lots of sitting on the sideline unable to console my daughter. I debated whether or not to post about this, but here I am writing, here goes.

I kept fluctuating between feeling incompetent as a dad and irritated by the inexplicable cries of my daughter. Rationally, I know its too early in the game to judge the final outcome of me as a father. Yet every time I found myself irritated, it felt like another another failing grade on an exam.

By the time I got home, I had shrivelled emotionally to the point where Rayna could see it physically. My fuse was so short I felt like a ticking time bomb all night. I don't recall exploding, thankfully, but it carried over to this morning with my dog acting as though he'd forgotten all his training over the last year. I was short with Rayna and Wayne too (more so than my usual non-morning-person self). I'm sorry, you two.

God, speak truth into these emotions. Give me peace and understanding with Peyton. Grow me in patience and allow me to experience grace and express it better. Allow my sleep to refresh my perspective.

Day 13 - Noon

More good news: Peyton is being downgraded to the Intermediate Care Unit (IMCU) from the Intensive Care Unit. So, we'll have a new wing of the hospital to explore later this afternoon. The catheter is out. The femoral line is out. They're keeping her on some IV nutrition because taking a bottle seems to be a challenge. The occupational therapist is coming soon to help.

A couple photos to share... 1st, Peyton surrounded a company of stuffed animals given to keep her company--a warthog, an elephant, a husky, and a turtle.


2nd, granddad Wayne holding Peyton for the first time in a while.

Day 12-afternoon

Karl is holding Peyton for the first time in 9 days.

Day 12 - Noon

So I was thinking of all the encouragements Peyton, Rayna, and I have gotten, and since a picture is worth a thousand words, I thought I'd show you a picture of the wall right next to where Rayna and I sit in the hospital room.

Looking at the picture now, it's not as clear as I'd hoped. There's 21 get well cards that folks have sent to us through the link on the righthand side of this blog.

Just one more sign of God's grace and presence.

Day 12 - AM

The nurse, Lisa, removed the arterial line and stopped the trickle feed. The respiratory technician took the last breathing machine away, and Rayna got to hold Peyton for the first time in 9 days! And with some help from a lactation consultion, Peyton started direct breast feeding again. Talk about major steps forward to feeling like parents of healthy child!The whole feeding thing got off to a rough start. Lots of tubes to manuver, some air in Peyton's tummy. I wish we could communicate telepathicly with her to encourage her, to calm her, and to understand if she's in pain.

Heavenly Father,

Thank you for your grace. The day may come, probably when she's a teenager, when I question your call on this one, but you are the sovereign one. Those troubles will serve the same purpose as these, to show your handiwork in her life, in mine, in Rayna's, and in our friends and family.

Nevertheless, I want to give thanks...thanks for letting me hear her hoarse cries and her strange squeaks when she sleeps...for seeing her blue eyes open and respond to my voice...for the healing and repair of my daughter...for the multitudes of prayers and notes of encouragement from our friends and family.

May your glory be seen in her life, my life, and Rayna's,

Amen

Day 11 - Early Afternoon

They took her C-PAP (the machine maintaining air pressure in her lungs) off!

Day 11 - AM

Just a quick note that the doctors pulled her chest tubes that were suctioning out blood from the surgery.

Day 10 - Late Night

Community is when your small group meets in a hospital cafeteria so that you can stay near your kiddo. That's what our group did this evening to keep us company. Thanks guys! Lyndsi beat us again at Apples to Apples. I question the wisdom of challenging her again, but it's a great way to laugh and get to know folks better.One funny story that I had to pass on came a little after 8pm this evening. Rayna had just sat down to join us, and a page came over the intercom summoning folks to 231. Well, that's Peyton's room number. We jumped and ran to her room, moving recklessly fast through the maze of chairs in the cafeteria. Rayna says I left a couple of downed chairs in my wake.

We ran full speed to the PICU, arriving only to see our nurse sitting calmly outside the room. She looked at us quizzically and asked if everything was okay. We assessed Peyton's room to find no doctors, no nurses, no extra machines. What was the fuss all about?

Turns out there's a tube system running throughout the hospital like one a bank uses in its drive-throughs. The intercom message beckoned for someone or another to come to communication station 231 where these tubes meet. What a relief!

We laughed and then returned to our small group. We found them in the waiting room outside the PICU. Evidently they had followed us a couple steps behind, stoping at the doors to the PICU, watching through the little windows in the doors. Needless to say, they were quite perplexed to see Rayna and I walking casually back to them laughing along the way. Once we explained our misunderstanding, everyone got a good chuckle and calmed down as the adrenaline wore off. One more example of our friends covering our backs and carrying our burdens.

Day 10 - PM

Two steps forward, one step back.

While she's still breathing on her own, Peyton needs a little help. Her lungs are contracting too much, making it too hard to re-expand them. Subsequently, the doctors put her on a machine akin to ones used with people who have sleep apnea. It makes sure that there's a certain amount of air pressure in the lungs, keeping the lungs from contracting so far. It's not doing the breathing for her, just helping a little. They also have her on a little oxygen.
Peyton and I finished John today. I'm thinking she's ready for Romans, Leviticus, or Revelation.

In all seriousness, I don't know what we'll read next, but my hope is that by reading the scriptures to her, she'll be more familiar with them as she grows up, that they'll be a natural part of her reading diet, and honestly, that she associates the word of God with words of her earthly father. That may sound off or manipulative, but that's not my intent. Rather that the same love, wisdom, righteousness, forgiveness, truth, and grace found in scripture would also come from my mouth. It will certianly hold me to a higher standard to live out what we read together.

Before I wrap this up, I wanted to say thanks to folks bringing food. We got a real treat tonight. Thanks Drew!

Day 10 - Noon

SHE'S EXTUBATED!!!!

God is sooo good!

Pictures from Catheterization

This picture was taken during Peyton's catheterization. The dark tube on the right with the measurements is Peyton's fistual. Below is a video of her heart pumping the injected dye. The dark tube on the right of the video is her fistula. The large tube coming out the top is her aorta.

Day 9 - Post-surgery

What an awesome day...unimaginably exhausting, but awesome nonetheless.

The medical team took Peyton back a little after noon and started the surgical component by 1pm. Everything went faster than expected, though a large part of that was the support of so many friends and family here as well as the multitude watching, waiting, and praying. Such a blessing to have Barbara, Dustin, Lyndsi, Sarah F., Sarah C., Rachel, Carl, Eddie, Lou Ann, Don, Will, Jamie, David, Marilyn, Julie, Terry, Steve, Amy H., Kathleen, Ben, Mary, Cathy, Kathy, Amy S., Linda, Vicki, Stephanie, Grant, Wayne, Cheryl, & Jewel Lee all sitting with us. Then to see all the posts on the blog and the facebook notes...well, words of emmense gratitude escape me.

Closing up the vessel that should have closed on its own took about half an hour. No problems there. Next was this monstrosity of a fistula (the extra pipe short-circuiting the blood flow). The surgeon said the fistula looked like a finger resting on the outside of the heart, running straight down the divide between the right and left sides of the heart. This presentaton gave him easy access to lasso the fistual and tie it off. So, there was no need to put the heart on bypass--a process that increases risk, surgery time, and recovery time.

Overall, no bumps in the road, and now we focus on recovery! Praise God!

The top photo is before surgery. The lower two, after.

Day 9 - noon

And so it begins. Walking with Peyton's medical team to the surgical center was tough. Giving Peyton a kiss, leaving her, and walking back, arm in arm with Rayna was even harder.

Day 9 - AM

God,

I need you. My wife needs you. My daughter needs you. You love Peyton more than I could ever fathom, so I entrust her to your hands. You have known her since before you knit her together in Rayna. She is your creation crafted in your image. You know and love her more intimately than I ever will.

Father, this breaks my heart. To see my daughter in such distress. To see waves of sadness crashing upon my wife. I pray that one day you would redeem all this, the pain and sorrow, the scars, the tears. Use them for your good, your glory, and your kingdom. Don't let me squander this opportunity for your work and your workmanship to be seen.

Guide the hands and lead the thoughts of Dr. Dewan. Give the nursing team and technicians a raised alertness. Send your Spirit to fill the operating room with peace and love for Peyton.

I ask, Lord, that you would heal Petyon, but if you choose to take Rayna and I down a different road, may you be glorified all the more. I choose to cling to you, and I know you are the good shepherd, providing shelter and rest in the storm. You know where you are going and the journey you want to lead me on, so please give me the courage to continue taking one step at a time.

Strengthen me so that I am not swayed by fear or anxiety. Comfort me through your Spirit and the community you have surrounding me. Draw near in my grief and sadness. Brace me for when I see her after surgery with stitches and an abundance of tubes sticking out her.

Yesterday, we celebrated that you conquered death, that you are alive, and that you will return. Thank you for being the everlasting God, the God who tabernacles among and now in his people, the Soverign King over all and yet right here with me. I am so grateful to have an immovable, eternal Rock because I can't do this on my own. I desperately need you.

In the name of the one before whom all creation will bow, the beloved and risen Son,

Amen.

Day 8 - PM (Time of Surgery)

The time is set. The place is set. It's time for the Rumble in the Operating Room.

Tomorrow at high noon, Peyton will undergo open heart surgery with Dr. Dewan here at the Dell Children's Hospital. The procedure could last anywhere from 2 to 4+ hours depending on the complexity. The operation will start by tying off one vessel that should have closed naturally after birth. Then they'll look for this extra pipe. If we're lucky, it will be on the ouside of her heart and easy to access. If not, they'll have to put her on bypass and go at it through the heart itself.

If we learned anything from the catheterization, it's that community makes a huge difference in the waiting room. If you've got time and want to hang out with us, that'd be awesome! We'll be in the PICU family waiting room (2nd Floor Central, just outside the PICU) shortly after noon.

I'll update more when I know more tomorrow.

Day 8 - Afternoon

All is quiet this afternoon, much like the calm before a storm. Rayna is sleeping. Peyton is sedated. Even my dad is yawning off.

We are on restricted interaction with Peyton this afternoon. The docs want an uneventful day, so touching is minimal. Sounds are muted at best. Thankfully the monitors are not disturbing the peace with their symphony of tormenting beeps and chirps.

The surgeon comes at 6pm. I hope I've got the mental stamina to engage well, ask good questions, and decipher whatever medical jargon we encounter.

I've been singing a song in my head over and over, and Rayna and Lynsdi encouraged me to share about it. The song, linked above, is Never Let Go, by Matt Redman. Ever since Sharon's death (Rayna's mom) in February, I've been haunted by Psalm 23:

The LORD is my shepherd, I shall not be in want.

He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul.

He guides me in paths of righteousness for his name's sake.

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

You prepare a table before me in the presence of my enemies.

You anoint my head with oil; my cup overflows.

Surely goodness and love will follow me all the days of
my life, and I will dwell in the house of the LORD forever.

I hear the song, and it captures so eloquently many of the themes in Psalm 23...the protection and comfort in the hands of the Almighty...the freedom to live a life of peace in the shadow of the sovereign...the grace to walk in His ways. I find myself singing this often, occasionally at the top of my lungs and sometimes in tears, as both praise to the Creator and a reminder to me, the created.

Day 8 - AM

Some sights from this morning...