Hostipital

When Conner was little, he used to call this place the "Hostipital".  He was two years old when we all were thrown into hospital life, and that was over nine years ago.  Nine years of survival mode, with a few breaks in between.  This has become our life, and our ministry, our family's mission.  It's also become the life of our children.  For example, Henry wanted his third bday party to be here in the hospital cafeteria, and so we made that happen for him!  Conner and Henry find peace here because it is familiar, and because people know them here.  They also absolutely LOVE the cafeteria and getting to choose what they have to eat.  


PEACE.  I'm grateful that the boys feel at peace, at home here.  This place very much felt like home for so long, but the longer we are away, the less it feels so familiar, and understandably so.  For those who don't know, Ellie Kate spent most of her life here at OU Children's.  She had long stays and shorts stays.  Ellie Kate absolutely loved it here because everyone here made her feel loved!  She wasn't scared to come here, and neither are the boys.  


Obviously, we've been here to OU for many, many doctor appointments, bloodwork and tests since Ellie died, and each time is hard, although I must say that is has become more easy.  It's easier because we are OUTPATIENT, and I know we are just there to visit.  We've tried our best to avoid hospital admission for Lucy since EK passed away, but it has happened a few times.  Thankfully, she hasn't been in-patient in over a year!  That is a miracle to us, because it never happened that way with Sweet Ellie.  The same smells, sounds, art work, vending machines, and even people - they are all so comforting and yet this time, I have been completely overwhelmed, and not in a good way.  I'm just fighting the overwhelming feelings and anxiety.


Lucy is in the hospital because she is having trouble with her feeds.  She has been screaming each time we try to feed her anything through her gtube, and she isn't able to sustainably eat or drink by mouth.  Her screams of pain over her belly are haunting because it's the same way that EK would cry over her tummy.  Most of Ellie Kate's stays here were because she couldn't handle her feedings.  Either she couldn't keep them down or they hurt her too bad for us to give.  So, like EK, Lucy's been receiving fluids through her port (thank you LORD for her port, so that we don't have to worry about an IV!!).  Yesterday, Lucy started tolerating pedialyte on a very low rate, through her gtube.  That means she gets a little bit of it constantly through her belly.  Last night they were able to bump the rate up a bit and she responded really well!  We plan to introduce formula today and we will not leave until Lucy is able to tolerate what she needs to survive and thrive.  


Lucy's had to have several rounds of pain meds, sometimes heavy meds, because the pain has just been THAT intense.  Watching those tears stream from her eyes - almost every movement and motion exactly like those of her Big Sister . . . I cannot even begin to express what that is like.  Holding her yesterday, I sleepily glanced down and saw Ellie Kate in my arms.  They are THAT identical at times, especially in this setting. It takes my breath away and causes extreme anxiety this stay, which I hate to admit.  Having our entire family up with us last evening was precious, special and it needed to happen, and yet it was so surreal.  We ALL felt it.


PTSD is REAL for parents like us, I have no doubt (and grandparents too, I believe).  Different things can set it off such as the smell of the same soap used in the hospital where you've been, different art work you've seen while there, etc.  Sounds and smells can set you off even outside of the hospital, so BEING here physically, for the SAME things that Ellie struggled with her entire life, has been emotionally overwhelming; mentally overwhelming and exhausting, and physically as well.  I know that might be hard for you to understand or maybe even hard to believe, but it is the absolute truth.  Bottom line:  Ellie Kate passed away because her gut shut down and stopped allowing her to be fed, receive nutrition, process foods, etc.  There were other things that happened shortly after and alongside of that, but gut-issues were the main cause of her last down-turn which quickly led to her death.  Lucy is stable right now, but because of the history . . . well, THAT is why this is so incredibly intense, and I find myself in full-on grief sickness once again.  

All of that being said, I've been doing my best to stay on top of it all, but I know that I haven't returned calls, texts, emails, and FB messages.  I just haven't been able to do it, Ya'll.  Lucy's been screaming so much and up until now, has required complete attention in every way.  We are working extremely closely with the doctors, whom we love, as they are allowing us to choose steps and make decisions along the way.  I LOVE that they are listening to us as we use the knowledge we have received living this life for so long - thinking of ideas, running through what has worked and hasn't worked for Ellie Kate and for Lucy in the past - those things wear you out too, although I wouldn't have it any other way.  I'm grateful that they trust us, and we are blessed to have a great team!  I pray that you have grace and understanding and will see that if we do not respond, it isn't because we don't love you or are not grateful for your outreach!  WE NEED the outreach and encouragement!  I personally thrive off of that in times like these, sort of like a team.  When you are down on your back or are struggling, you look to your team mates to step in and step up, verbally and physically encouraging you along the way, as you make it through the mud, muck and quick-sand.  THANK YOU for CONTINUING to do that with us and for us!  It means more than you could ever know.  


Right now, I'm in the waiting room while Henry is back for his sedated MRI.  We may or may not receive results from that today, and I'm not letting my mind run to the "What ifs" where that is concerned.  I have enough - I'm not meant to carry that as well.  God's got it worked out for Henry's good and for God's glory.  We hope to also receive the results of his sleep study (done Monday of this week), and again I am choosing to give the results up to the Father as he knows exactly what is going on in Henry's body and brain.  


Would you pray for PEACE?  We need God's supernatural peace, the peace that HE has promised, to flood us.  I mean, I want to feel it SO incredibly thick that fear seems an eternity away!  Also, please pray for Lucy's gut to start working again.  My fear is that this is the beginning of gut-trouble and hospital stays to pattern the life of EK, and I'm choosing to give that all to the Father right this moment.  It's too much to handle or hold on too, especially when He controls it AND wants to take it off my shoulders.  Please pray too for PAIN RELIEF for Lu Lu.  

Other ways to pray: 

• for clear and quick results for Henry's tests and for wisdom for the doctors where he is concerned.  
• Pray too for Conner because although he doesn't express it, I know all of these things must weigh heavy on his heart, even if he doesn't realize it.  
• For me and Mike - that God would protect our hearts and guide and capture our thoughts; that He would continue to heal us and comfort us even though it seems impossible to do that here:).  
• for our parents, as they hurt for us and hurt for our children
• for God's provision 
• for Mike as he continues (and desires) to work hard at his job (which he loves), and that God would allow him to concentrate on that when he needs to.  

Thank you for being there for us, Friends.  Thank you for loving and serving us.  Thank you for understanding, for staying alongside, even when we cannot respond or reach-out.  I will update as I am able.  

From the Hostipital - 

Ryan

The Belle of the Ball

We celebrated two special birthdays this weekend - the birth of Conner and the birth of Lucy!  I'm probably crazy for doing two parties back-to-back, but I had a lot of help (esp with Lucy's).  In no way am I superwoman.  Conner's party was at the Dodge Ball Dugout, where the boys could play and run and throw and sweat to their hearts' desire.  This is the second year we've used this venue because it's just so perfect!  Conner was able to invite a lot of his friends which really made him happy.  I'm so grateful that the Father made everything fall into place on what was a very chaotic and stressful day. 

We had a princess birthday party for Ellie Kate when she was three, so naturally I wanted to do one for Lucy Belle.  And since we are heading to Disney through Make-a-Wish, we have costumes ready for our Halloween events in Orlando.  So why not have a princess dress-up party?! 

 

Thanks to some very thoughtful and generous giving, Lucy wore a Cinderella gown, and she just loved it.  She is still covered in glitter, despite the bath.  And I dressed up as Snow White, thanks to my friend Marcy!  I had a birthday party as a child where Snow White was a guest, so it was fun to do this with Lucy and with the other little girls. 

Every little princess that came was beaming, all dressed up and excited for Lucy's party.  It meant the world to me that they would be there for OUR daughter.  We did special crafts, ate and opened presents - all of the "normal" stuff you do at birthday parties.  The Frozen soundtrack was playing in the background thanks to Julie Haller (who helped me a TON), and I just engulfed myself in the girly-ness of it all.  It was just so sweet and fun and I was able to experience it with my daughter. 

 

The cake was done by Daniel with "Baked" in Moore.  He donated his time, energy and resources to do Lucy's cake through Icing Smiles, a wonderful organization which takes care of the cake so the parents don't have to (financially, logistically, etc).  We were honored that a person we didn't even know, who didn't even know our story, would take the time to do this for Lucy Belle.  Visit that place if you get the chance, ya'll!  Lucy just loved her cake.

 

 

 

Everyone was exhausted after all the excitement but we realized that Lucy had slept through 99% of her party.  That wasn't typical for her, and when we thought about it, she had been sleeping more than usual the last few days.  Worse than that though is that Lucy was screaming non-stop from the time the party ended until the evening, with only a few breaks.  While we knew she wasn't critical by ANY stretch of the imagination, we did want to get her checked out so Mike and I took her to the ER and my Mom came and got the boys for us. 

It was an uneventful ER trip, and we at least had confidence in the resident taking care of us, so that's a step up from our last visit.  Nothing showed up in the immediate tests, but it could in the next few days.  They asked us if we wanted to be admitted (Lucy was still screaming at this point).  We did NOT want that, especially since we can take care of her at home at this point.  She slept hard and long and has really slept most of the day.  When she is awake, she's completely herself, full of energy - those moments just don't last long. 

We think Lucy's crying may be because of gastritis, which she and Ellie Kate have suffered from.  It's obviously not life-threatening, but it certainly is uncomfortable, especially when you can't voice the pain and make it better.  At the NKH Conference, I learned that Sodium Benzoate, one of the expensive experimental meds, can cause constant gastritis.  This makes perfect sense in the case of Lu Lu and EK, but it also makes me sad to think that they have to hurt and suffer in that way.

Here's the thing . . . we all need to be well because, in just a few short days, we will be leaving for Lucy's Make-a-Wish trip!  A once-in-a-lifetime, incredible, breath-taking trip that has been provided for us. It's a one-time deal, folks so we need to be well enough to enjoy it!  I'm being so protective of this trip because I know how much Ellie's MAW meant to her and to our family, and how absolutely magical it was. 

Here's how to pray:

• Pray for Lucy to be healed and for her to feel well before and during our trip
• Pray for Henry to be healed and for him to feel well before and during our trip
• Pray for Conner to feel well before and during the trip
• Pray for Mike to feel well before and during the trip
• Pray for me to be healed and to feel well before and during our trip
• Pray that things go smoothly this week and that they all easily and seamlessly fall into place

Mike and I so want this to be an unbelievable experience for our children.  We are so very humbled and grateful for this opportunity; I truly just can't say it enough! And thank you for continually keeping up with us, praying for us and supporting us in every possible way. 

A Woman of Faith - My Friend Jenni

Many of you have heard me talk about my friend, Jenni Kufahl.  I've known Jenni since I was a freshman in high school, when we cheered together under the direction of her mom, Deani - our Cheer Coach.  I thought Jenni was so cool and so beautiful, and she still is! 

Life has gotten a bit busy for us both as she married a coach and has seven gorgeous children.  I've been busy too with our NKH Journey and all that has come along with it.  Jenni organized meals when Ellie Kate was first on hospice that first year, and it meant so much to me.  Then we reconnected when Lucy was born, and she came and visited us in the NICU, bringing notes of encouragement and love from the students in her husband's class at Christian Heritage Academy.  We stayed in touch on-and-off, and then Jenni was shockingly diagnosed with cancer about two years ago.  Cancer.  My friend who is a wife, a mother to seven children, was diagnosed with a rare form of cancer that seemed to come out of nowhere.  And her fight began. 

During her fight, Jenni has continued to encourage me.  You may remember me posting about how Jenni came up to the hospital that last day Ellie was inpatient, the day she came home from hospice.  Jenni brought me a Dr Pepper that morning (one of my favs), and prayed with me and over Ellie Kate that day.  She took a picture of EK and I together - one of the last ones I have.  She also visited us the day before Ellie Kate passed away, bringing a sweet gift along with her.  I was also with Jenni when Conner broke his arm, and because of her connections, we were able to take Conner straight to the Orthopedic doctor and straight into surgery.  This girl is a blessing, ya'll. 

Recently, Jenni spoke at the chapel service at Christian Heritage, and I wanted to share that video with you.  Watch it, listen to it; let the words sink in.  Let the Lord and His Spirit permeate your spirit through His Word that is spoken during this testimony of faith . . .

Jenni's Testimony

I'm asking you to pray for this friend, this Woman of Faith.  Jenni is in the hospital now, undergoing more chemo as her cancer has spread yet again.  She's fighting hard, and trusting the Lord and His Will for her life.  We know, without a doubt, that God WILL be glorified no matter how He chooses to heal Jenni.  He is FOR Jenni, and is FOR her family.  His heart is pouring out over her suffering, and yet He has allowed it for His glory and for her good.  That's what God does with tragedy and with trials in the lives of Believers.  He allows bad things to happen so that He alone can be glorified in ways we could never imagine - big, mighty, amazing ways!  Like Heath making a half-court shot at a Thunder game - and thus the Gospel was shared on ESPN, CNN, local news, and more! 


Trials are blessings because God is with us in an intimate way during them.  They are blessings because He uses them to mold us and make us more like Him.  They are blessings because it causes those around us to cling more to Jesus, and what could be more precious than that? 


Please Join Us in Praying . . .

• Pray for Healing for Jenni's body, here on earth
• Pray for ease of pain and that Jenni will feel comfortable and at peace
• Pray for Heath, Jenni's husband, as he leads his family and cares for Jenni
• Pray for Jenni's parents and her brothers and sister, as they care for Jenni and for each other during this time
• Pray for all seven of Jenni's precious children.  Pray that God would surround them with immense peace.  Pray that they will feel loved and secure during this trial.  Pray for God to meet them where they are.

Jenni and Heath - God has and is working through you in a mighty way!  We are so very proud of the way you have handled this adversity.  God is truly well-pleased with each of you and with your family.  You are blessed.  You are loved.  We are pleading to the Lord on your behalf!  May you feel His rich presence surrounding you.  May you hear Him sing His words over you.  May the Spirit of God fall on your shoulders, filling your home, your hospital room, your car - every place that you may be.  You have created a great and rich, godly heritage for your family and for the world to see.  Thank you for using your fight to bring glory to Jesus. 

Ryan