diagnosis

Well we found out that Keller has the CMV virus. Although she seems to be doing great, the doctors have scheduled another appointment for us to meet with one of the infectious disease doctors. There could be side effects including vision and hearing loss from this virus so they want to keep a careful eye on her. So in addition to the other appointments we will make another trip to Omaha to meet with another specialist.

We continue to beg for your prayers. Specifically that the Lord would continue to protect Keller's body. In particular, her ears and eyes.

Tomorrow is our appointment with our pediatrician which will include more labs.

Please also keep Erik in your prayers this week as he has officially opened his restaurant, Honest Abe's. You can check them out at http://eatabes.com

dearest family & friends

As we begin to find some normalcy I have been trying to process all that has happened over the past week. I am convinced that without our family and friends love, support, and especially prayers we would not be where we are today.

Four days ago we had a doctor tell us he had no idea what was wrong with out little girl. He said she may have a wide range of things including biliary atresia (which would likely require a liver transplant) or a fatal metabolic disorder.

Both of those have been ruled out and her body has begun to heal. And for that I thank the Lord and all of our for praying for healing.

I begin to question why this had to happen. Keller is fine. No medical intervention was needed whatsoever. So what was the point of it all? Why did my sweet baby have to go through that? God obviously had a message he wanted to send to us. So we try to hear his voice through the experience.

I can not adequately thank people enough. But here's a start.

Ashley. There are no words to express what your support this week meant. I called you hysterical begging for help getting our bags packed. You dropped everything for us. Your presence in the hospital with us...having you there as we fell broken in disbelief. Your words of encouragement. Your relentless compassion. We are blessed. I couldn't have done it without you. And Mark, thanks for supporting Ashley to drop everything to be with us. We know it was a sacrifice for both of you and we could feel your love through that. Evie and Keller are sure blessed to have you two.

Gus & Janie. I don't tell you enough how thankful I am to have you as my in laws. Janie, you were by my side (literally) from the very first day of this craziness. Thank you for how much you love us. Especially your granddaughters. Thank you for taking Evie no questions asked. Thank you for driving to Omaha every night. Thank you for being the unstoppable prayer warriors that you are.

Mom & Dad. Thank you for packing up and leaving right away no questions asked. I appreciate that I can count on you no matter what to come through for us. I know that you will always be there for me and your granddaughters and I'm so glad that I have you to help whenever I need you. Love you to pieces.

Melanie. No explanation needed. I love you.

Alexis, Marcia, Amelia. Thank you for playing words with friends. I needed the distraction and am grateful for it and so thankful for you and such a simple game that helped numb the mind.

Nicole & Andrew. Thanks for loving on Evie while we were gone. Your empathy was beyond comforting. Your text messages lifted us up and were sent when we most needed them.

Gabe & Emily. Thank you for handling the restaurant without Erik. And for not making him feel any pressure for being away. We knew we could count on you to handle it and you did great. Thanks for adamantly praying and showing your support in so many ways.

Jason & Kinsey. Thank you for being there for us. Jason having you at the hospital to help me try to digest all the medical lingo was so comforting. Kinsey, Evie was so stoked to play with you every night. So thankful you were in Lincoln this week to help her during such a confusing time.

All of our family & friends who sent messages, texts, Facebook wall posts, and emails. I can't name everyone individually because this post would be ridiculously long. God used your prayers and words to heal our daughter and calm us during the most horrendous week of our lives. Some of which were so perfectly timed during our lowest lows. I remember waking in the middle of the night crying as I nursed KG. And reading all of your messages. Somehow one of you would always say just what i needed to hear right when i needed to hear it. You helped me to breathe and have hope. Thank you.

Erik. I am so in love with you and so glad you are the father of my children. We are forever changed by this. Thank you for holding me tight as I sobbed. Thank you for ignoring your work responsibilities and giving 150% to your family when we needed you. I know I can always depend on you. We will hold KG and Evie tighter. We will love our loved ones and each other harder. We will be more grace filled toward one another. May we look back on this experience and be reminded of how we desperately had to cling to Jesus. And that He came through for us. I'm so glad I get to do life with you. I only pray that as we dive back into our chaotic lives that we learn to appreciate one another more. And be reminded how precious life is. I love you.

My God How Great Thou Art.

day 5: home

Home. Sigh. Thank you Jesus. Waking up in our own home was such a relief this morning. I cannot believe how emotionally and physically drained I am. I can't imagine what little miss K is feeling. Poor sweet baby.

We plan to spend the day lounging around and watching the Olympics. Much needed rest for all of us.

So what now? I plan to take it pretty easy and keep Keller home over the next few days. We have an appointment with our pediatrician on Tuesday afternoon. KG will get labs to check her bilirubin levels. Although its already obvious that they are dropping because her skin and eyes are looking so much less yellow.

Assuming that all is good and her levels continue to drop we won't see another doctor until aug 7th. That day she has a follow up appointment with the GI specialist at Children's. By that time we should also have the results from all of the tests and hopefully will have an answer. And I guess if they dont give us answers...as long as she is 100%!!

So thankful to be home. Your continued prayers for healing are appreciated!

day 4: homeward bound

We are going home!!!

Mimi and Papa got here yesterday and were here bright an early this morning to be with us. Thankful that thy were able to come during this crazy time.

At 6am this morning, the nurses came in to draw more blood.  at about 730, one of the resident interns came in to report that ALL of KG's levels had dropped!  yah!  bilirubin, enzymes, iron, etc!  praise the lord!

At 10am the medical team (med students, residents, doctors) all had rounds and updated us on her. And gave us the good news we get to go home!!

We will have follow up labs in Lincoln and come back to Children's for an appointment with the GI team after all I the labs are back. They ran a series of tests and it'll take a while for the results.

Ultimately, they think this virus probably peaked before we came to the hospital and she was actually getting better by the time we arrived. Scary to think how much higher all of the levels could have been last week and we had no clue anything was even wrong. She was yellow but showed no other symptoms. Thank you Jesus for protecting her!

So while we continue to wait...we get to wait at home. Praise be the Lord!

day 3: more tests

we woke up this morning and took KG to have the HIDA scan.  i never knew what nuclear medicine was until today.  they gave KG an IV and then injected some sort of radioactive material into her bloodstream.  insane.

it took about an hour or so for the machine to take the various images of her organs.  she was calm and content just sucking on a paci.  she had a few fussy moments, but overall she did awesome.  the tech told me that her "plumbing" appeared to be in tact.  which gave us huge hope.

we had to go back at about 2:30 this afternoon for another scan to get a few more pictures.  at about 4pm one of the dr's came in to talk to us.  she share some great news with us expressing that KG does NOT have biliary atresia.  PRAISE GOD.  the scan also showed us that her liver is taking and excreting bile the way it is supposed to...but the "plumbing" is just a little slow.

the slowness is likely caused by some sort of viral infection.  the infection is causing the swelling of the liver and spleen.  this also is the reason so many of the enzymes are high, iron is high, etc.  the liver just isn't 100%.

an hour or so later, the GI team came in and shared the same good news.  at this point, we still don't know what virus.  and they want to figure that out.  so the game plan, as of now, is to run a series of tests.  KG will need to have some more blood drawn and they will send it out for more testing.  not sure exactly when/if we will be discharged...but they did mention we don't necessarily have to wait for results here in the hospital because her vitals have been good.  we just need the other numbers to drop down and for her yellow color to GO AWAY.

so again...we wait.  but today, we are refreshed and renewed and reminded of God's perfect provision and love.  we are thankful for our sweet keller grace and God's protection over her.

i have to share one email with all of you that i received from my best friend's dad.  i was so broken and this note from him helped to restore my faith...

Just a note to tell you how sorry I am about the uncertainties with Keller right now. I know that Erik, Evie and Keller mean everything to you; they are your life. 

And now, one of them is having some very real struggles. 

I hope this next sentence doesn't sound preachy or sound like there is even the slightest hint of criticism in it (there is no criticism here). You are a person who is used to being in charge; if there is a problem, you fix it. Now you are in a situation where you cannot fix the problem. For those of us who are problem solvers, this is a difficult place to be.

The God who knit Keller together and gave her to you knew what He was doing then; and, He knows what He is doing now. You may not know what is going on; but He does.
 
You are not entrusting her to the doctor's hands, you are entrusting her to God's hands. His loving hands are holding her. His loving hands are holding all four of you. His grace will sustain you - always remember that.
After all, before she was even born, God gave you the wisdom to place Grace in her name.

this is not the only note i received.  i have to say a huge thank you to all of you.  the text messages of encouragement, the emails of empathy, the facebook posts of support...words can not describe how grateful we have been for all the support we have received.  many of you i haven't talked to in years.  you have helped us to keep breathing and hoping.

day 2: update

today has been a roller coaster of emotions.  we are still left with uncertainty and lots of unknowns.  the ultrasound did not show any anatomical abnormalities (which would include biliary atresia) however, they want to do a HIDA scan tomorrow morning to rule that out for sure.  blood work is leaving a lot of question marks...but we are blessed with a wonderful doctor who clearly knows what he is doing.  the liver specialist here at Children's is nationally known and recognized...so KG is receiving the best medical care possible.  we are thankful for all of the love, support and prayers as we continue to wait and take things one day at a time.

what we don't know...

• what the diagnosis is
• what the long term/short term effects are
• how long we will be here

what we do know...

• keller is still acting like her normal self
• liver enzymes are slightly high
• her liver, gall bladder, etc are still working
• she is pooping normal and healthy looking stools
• bilirubin (both conjugated and unconjugated) levels are high
• she is eating like a champ
• iron and ferritin levels are high
• she is still smiley and content
• her liver and spleen are enlarged...but so is her smile

what you can pray for....

• that the scan would give us answers tomorrow
• that keller continues to eat, sleep, and poop normally
• that the doctors wisdom so that they can continue to narrow down the list of possibilities and find a diagnoses
• that erik and i can get some rest
• that we can feel a sense of hope with so many unanswered questions
• for evie as she is confused and concerned

what we are are certain of...

• no name of any disease, disorder, or illness can stand up to the name of Jesus

day 2: waiting game

KG slept pretty well last night. They didn't wake her for vitals or anything so that helped her. At 6am a member from the GI team came and chatted with us. They ordered more blood work for some more extensive tests and an ultrasound to try to get a better picture.

We just finished up at te ultrasound and will be waiting to hear from the doctor hopefully soon. Keller did great. Only fussed a little even though she's probably pretty hungry (didn't let her eat so they could get a better picture).

Strangely enough, she took a paci and it has soothed her really well this morning.

I'm really impressed with the hospital. The ultrasound tech was great. They warmed the gel...have a cute mobile on the bed...and sweet twinkly lights that look like stars on the ceiling here in the ultrasound room. The little touches that make all children and their parents feel more comfortable in a very uncomfortable situation.

So we wait...

day 1: calm before the storm?

we wait patiently and will likely have a fairly uneventful night.  we will have a consult with a GI specialist tomorrow and will know more about what their game plan is at that point.  we could leave tomorrow (unlikely) or be here for weeks.  we really don't know much...

children's hospital lives up to it's reputation so far.  everyone has been great and really have helped calm some of our nerves.  although things are still unknown, we know keller will receive the very best care.

thanks to the love and support from everyone so far.  much love to all of yo u

daddy & keller

my brother in law (far left) is a third year med student, so he was listening to the doctor as she was examining keller.  thankful to have jason here with us tonight.

little peanut and mommy trying to relax

still a happy girl at the end fo the day...7 needle sticks later.

too many needles

The past few weeks we have been noticing that Keller's little eyes were a tad yellow. We had called her doctor and there was no cause for major concern since she was eating/pooping well and growing. At Keller's 2 month checkup today, our pediatrician noticed that her liver seemed a little large.

Dr. Bleicher sent us to St Elizabeth's to get some blood work and an ultrasound. Watching someone draw blood from your baby makes any parent feel helpless and truly breaks your heart.

Our doctor called us an hour or so later to give us the results. Although the ultrasound didn't show any obstructions or abnormalities (other than swelling of the liver and spleen), the blood work was cause concern. The liver enzyme count was abnormal and bilirubin levels were slightly elevated.

So rather safe than sorry, she has sent us up to Children's Hospital in Omaha to see a specialist. It could be as simple as a viral infection or as complicated as disease called biliary atresia. We are obviously praying it is just a viral infection.

We completely trust the judgment of our pediatrician. She is fantastic. Please pray that the doctors at Children's can quickly diagnose this and that healing would begin immediately.

We will update here on our blog when we know more. We appreciate your prayers.

two months old

Keller Grace. The past two months have flown by. You are perfect in every way!!

• keller is now 10 lbs even and 22.5 inches long. somewhere between the 10-25th percentile.
• she started smiling at 4 weeks old and it gets bigger and sweeter every time she grins!
• keller loves watching the giraffe mobile in her crib. she gets wide eyed and smiles when it starts and usually fusses when it stops.
• she is sleeping two 3-5 hour stretches at night and usually wakes up twice to eat.
• she HATES tummy time
• she usually eats every 3-4 hours and is awake for longer periods after a feeding
• keller still loves her swing and loves being swaddled.
• she just outgrew newborn diapers and clothes. but size 1 is just a tad roomy.
• she's still anti-paci but I still try...ha.
• keller has spent some time at the pool with us...covered in a wet blankie to keep cool.
• her nicknames are sweets, k.g., and miss k.

The best friend

I'm super blessed to be able to do life with this girl. Melanie and I have lived in different cities a majority of our friendship, yet we have always remained close throughout all the years. Through boyfriends, breakups, a wedding, kids, new jobs, new cities...there is nobody I trust more than her. And she is one of Evie's favorite people too!

We had a blast this weekend with her visiting. Bachelorette finale...pool time...it was great to spend some uninterrupted girl time with one another this weekend. Aunt Mel made the trip to Lincoln to hang with Evie and me...and to meet miss Keller for the first time. It was a great weekend.

8 weeks

Mom's worst nightmare

it was bound to happen sooner or later.  we had our first major fall.  and it all happened in the blink of an eye.

after a wonderful saturday morning, we headed to the gup truck for some lunch and to see daddy.  evie was devouring her hummus and veggies after we left there and headed to target.  after i parked the car, i grabbed keller's car seat and put it in the cart.  we headed around to evie's side and i unbuckled evie.  just like we have done 100 times, i held out my hand for her to grab.

i turned to look at keller for one second, and in that time, devastation struck.  when i looked back, evie was on the pavement face first...with her little feet pretty much still in the jeep.  my poor sweet baby.  luckily she didn't lose any teeth, but her lip was pretty swollen and bloody.

here's a picture taken about 20 minutes after the fall (still holding the same celery stick she fell with)

she traded in her celery stick for popsicle.  she even got to eat it in mommy's bed.

after her popsicle, i let her take her nap in my bed as well.  i woke her up every 45 minutes to make sure we didn't have a concussion.  lucky for us...she woke up everytime...

the next day...much better than we thought her little face would look.

almost brand new!  and still smiling three days later.

if you ask evie how she got her ouchies...she will tell you "evie fell down in target."

4th of July!

We had a ton of fun on 4th of July! On the third we had some friends come out for a bbq and played yard games. 

Once it got dark my friends Grant amd Ryan put on a firework show!  I wish I would have gotten some pictures but none of them really turned out.  It was so awesome to be able to enjoy the fireworks at our house and not have to deal with the crowds in town.

good friends steph and tiffany

evie had a blast playing with findley!  they even had matching swimsuits!  so cute!

outta our way!!

On the fourth we went over to my brother-in-law and his wife's house. The cousins had a great time doing fireworks with their uncles. Some of the fireworks even got a little loud but they were troopers and had a blast!

captures their personalities pretty perfectly.

opening firecrackers with daddy

sister.in.law ashley

Evie's first sparkler!