Thursday, March 19, 2015

From the 4th Floor...BIG news!

After a long night with a couple very unpleasant "happenings" for my sweet boy, the big news this morning is that Judah has finally starting things moving along on his own! Just in the nick of time. He had about 10 minutes left before they were going to repeat a procedure they did last night. Close call. He's not completely out of the woods yet, but he should be on his way. The Urology Fellow told us that as soon as he was able to go on his own, we'd be able to go home...but, of course, it's not quite that simple. They're going to make us wait around for a bit...for observation...just to make know. While I appreciate their thoroughness, Judah and I are tired! He keeps asking when he can go home. 

Thank you to each one of you who has sent or brought Judah little surprises. It has made his stay so much easier, and totally helps now as we wait! 

He had an awesome surprise this morning: the Pet Therapy dogs came to see him! Oh my goodness, he was SO excited! I haven't seen him that animated since Monday morning. His face says it all! 
Roxie & Olive to the rescue! Judah thinks that Ollie should come to the hospital too. Of course.

Wednesday, March 18, 2015

From the 4th Floor...Small Setback

Well, we're still here. Doctors have this thing about being able to "void" after surgery/epidural/catheter, and Judah hasn't yet for whatever reason, so we are here for the night. We fully anticipate being able to go home tomorrow morning, barring some unforseen complication or inability to..."void". I'm disappointed - I had gotten used to the idea of saying goodnight to Jared and the kids at home - but I know we'll get there sooner than later. And if there is something else going on that we just don't know about yet, well then, I'd rather be here than at home. 

So, goodnight from 4. 

Psalm 18:1-2
I love you, LORD; you are my strength.
The LORD is my rock,my fortress, and my savior; 
my God is my rock, in whom I find protection.
He is my shield, the power that saves me,
and my place of safety.

From the 4th Floor...Small Victories

I decided to look at the book of Jude. God captivated my heart in the second half of the very first verse. 

"I am writing to you all who have been called by God the Father, who loves you and keeps you safe in the care of Jesus Christ. 2 May God give you more and more mercy, peace, and love." 

God knows my need for feeling safe and secure. Not only does this verse tell me that I am loved and I am safe; but it reminds me that only HE can satisfy. Regardless of what the next week of recovery looks like for Judah, God's Truth stands, and we are safe & secure, cared for by a gentle, intimate God, and His way is the best way. Again, I'm reminded to ask Him to allow into our lives (including Judah's) those things that will draw us into deeper intimacy with Him and make us more like Him! 

Jude 25
"All glory to him who alone is God, our Savior through Jesus Christ our Lord. All glory, majesty, power and authority are his before all time, and in the present, and beyond all time! Amen."

As we speak, Judah is sitting in bed, completely unplugged! The epidural is gone, the monitors are gone, the IV fluids are gone! The next few hours will show us how ready he is to go home. For now, with a belly full of macaroni and cheese, he's ready for a nap;)

From the 4th Floor...Small Miracles

It's been truly amazing to watch Judah's initial recovery from this surgery. We came into this with a "hope for the best, prepare for the worst" kind of mentality. I think over the years I've developed somewhat of a pessimistic attitude as I come into situations like this...mostly so that I don't experience disappointment or frustration like I have during past hospital stays. But then, when Judah seems to come through with flying colors, I wonder if, in my heart, I've shortchanged God and really just lacked faith. I don't know. I guess I just don't know how to be or what to think or how to prepare sometimes. Anyway, like I said, this super kid has done extraordinarily well! As of this morning, his urology and anesthesiology teams couldn't be more pleased with his progress! They think he's ready to transition from the epidural to an oral medication for pain management. Long story short, at 11:00 he's receiving an oral dose of the new med, and 30 min. later they plan on pulling the epidural. Then we watch him for another 3 1/2 hours. This med has some potential side effects, so we need to see how he handles that. There are alternatives in place should he have any problems. If he tolerates the new med well, and his pain is under control, then the catheter and the drainage tube can come out. If all of that goes well - which is what they expect - he could actually go home later today! My mind is still reeling at the possibility. This is so outside the realm of possibilities that we were given!

After asking questions, talking through different scenarios, seeking out trusted advice, and praying together, we've decided to pursue these steps that will hopefully get him home today. I would be lying if I said I was 1000% confident that this is the right thing to do and that I have zero concerns about it. I'm scared. I'm scared that he'll be in a lot of pain. I'm scared to take him home with this major abdominal incision that's still so new. (I'm sure you mamas out there that have had cesarians can relate.) I'm scared of getting behind the pain, and then having to play catch up while he's the one that suffers. I'm concerned about the potential side effects of a new med. And how effective the alternatives might be, or what side effects they might carry. Obviously I'm not done having conversations with God about my own trust issues here. Intellectually I absolutely believe that He is at work, He is Judah's Healer, He is completely trustworthy and completely ENOUGH for Judah, and He is in control. But anytime we face an unknown with Judah my Mama Bear goes into hyperdrive and I have a hard time getting what I know in my head to completely saturate my heart. You'd think after 6 years I would be a little better at this. Well, maybe I am. But I'm certainly not as far along in this part of my faith journey as I would like to be. Makes me glad that God doesn't let me stay the same.

So, as I pursue God and His Truth this morning, I will also be thanking Him for all of your prayers for Judah's continued healing and wisdom for us. Seriously, I am SO THANKFUL that we don't walk this road alone! Our support system is ridiculous! I often "brag" about our church family and the incredibly unique community we experience with them, as well as the amazingly supportive community of people I've found through my new job...not to mention our YFC community. We're surrounded! 

Haha! Jared just said he can't wait to see what I'm writing. This was supposed to be a quick update! Tell that to my fingers;) It feels so good to be writing again.

Judah finally got his visit from Trevor AND Ariel - bonus! Needless to say, he is one happy camper.

Tuesday, March 17, 2015

From the 4th Floor III

It's hard to believe that our 1st full day up here is almost over already! It's been a restful day for Judah, but also a busy one! He started his day with lovins from Daddy, his siblings and grandparents; and we enjoyed visits from  Muk, and Mrs. Nebel! I love watching other people love my kids. It's a gift that I don't ever want to take for granted. 

He's been comfortable throughout the day, but we had a glimpse of what the pain could look like when he coughed a couple times this afternoon. He instantly grimaced and cried out, holding his tummy. It was sad to see him hurt, and again made me thankful that he's here being so well cared for. His team here doesn't want him hurting either, and I so appreciate that. 

Things are looking good for him so far. No signs of fever, good output, decreasing drainage, and increasing thirst and appetite. This morning Dr. D. said if he continued to progress well throughout the day today, he could possibly have a couple tubes removed tomorrow. I would love to be able to take Judah for a walk around the floor tomorrow, or even to the playroom, so getting rid of some extra baggage would be wonderful. 

Judah has been such a good sport today. He's tired, but he's had a great attitude. It's fun for me to listen to him interact with his visitors and the nurses that are in and out. He's been talking a LOT about school. He keeps saying he hopes he doesn't miss school, or he hopes he can go back to school. He's been talking to the nurses about Miss Baines, his friend C., and Math. And if I had a nickel for every time he has mentioned Trevor (my Trevor that I love, he says) coming to visit him I would be a very rich woman. Seriously! Trevor is a kid that came up through Campus Life and is now Jared's intern. He's become a part of our family over the years and all our kids adore him. But Judah has latched on to Trevor in his own "mini-groupie" kind of way. I wish I could be here tomorrow morning to see Judah's face when Trevor walks into the room. 

Tonight we had a special family supper with Granny, all together in Judah's room, and are watching a family movie. Judah is winding down again, asking for snuggles and getting sleepy. Soon I'll take the big 3 home and leave my baby here with Dad. I'm happy to go home with my other kiddos, but my heart and mind will be divided until we're home together again. 

Ruth 2:12 says, "May the LORD, the God of Israel, under whose wings you have come to take refuge, reward you fully for what you have done." In context, this verse really has nothing to do with our situation; however, I absolutley love the imagery of taking refuge under the wings of Jehovah. I always talk about my nest, referring to the physical & emotional warmth, security, and comfort I find there. But this is a picture of the intimacy and tender care of our Provider. The security and comfort I find in Him is perfect and unfailing. He is my Foundation, my Rock, my Hope. So I can leave my baby here...because He is also those things for well as the Healer and Sustainer of Judah's life. 

He was so SO happy to see his brothers this morning!

When he was finally hungry he just about ate his body weight in graham crackers!

Of course his sister couldn't wait to smother- I mean, love on her baby.

The lunch of champions! The stuff you only get to eat all together when you're in the hospital. 

Checking out some new goodies!

He colored for about 5 minutes, and then crashed. He had fun while it lasted!

Monday, March 16, 2015

From the 4th Floor I

We're up on the 4th floor, our old stomping grounds of sorts, watching Judah rest peacefully. His surgery went beautifully! I don't ever remember getting such a positive report! The dr. is extremely pleased with every aspect of the surgery, and was pleasantly surprised to be able to avoid a couple more complex aspects of the surgery. He was prepared for the worst, but the worst wasn't there! The people here know their way around pain management, so between Tylenol, an epidural and Morphine, Judah is feeling good and getting some much needed rest. The epidural comes out in a couple days, so the Tylenol will become our new best friend. My prayer is that the transition from epidural to Tylenol will be a smooth one for him. 

Today has been a good day, as weird or wrong as that might sound. Knowing that countless people are praying for your baby and you, reading emails and text messages, seeing pictures on instagram, being visited by a friend already - it's a unique experience to be at the center of all that. God is so good all the time. Being on this crazy journey is a constant reminder of that. 

Plus, I love hanging out with that red hot ginger, so I'll take as much of that as I can get, wherever I can get it. Seriously. He's hot. And he carries my stuff. And he brings me hot chocolate. And he says nice things to me. 

Anyway, thanks again to each and every one of you who has taken time to pray, or text, or message, or email, or call. And thanks to all of those I don't even know! It humbles me every time to know that people I've never even met take the time to pray for Judah and our family. 

I'll keep you all posted!

From the 4th Floor II

I've decided that it's not a bad thing to be remembered, recognized, or known within the childrens' medical field. For the longest time I've really wrestled with that. Who in the world actually wants to have that kind of "status" in a hospital or clinic or doctor's office?? For years I have looked at that as a negative, burdensome thing. Or I've made sarcastic jokes about it. Or rolled my eyes...and sighed. I don't want to do that anymore. I can't change the life that God has called us to, but I can, by God's grace, change the way I respond to it. And I can more fully embrace it. I can have a good attitude about it. I can be an encouragement to others that I come into contact with. I can use my own years of experience to come alongside someone who's new at this and help to carry their burden in whatever small way I can. I can choose to be thankful. Actually, I'm pretty sure I wrote a very similar post to this one 2 or 3 years ago. I've just lost sight of it. Lack of intentionality will get me every time.

I'm thankful that I feel comfortable when I walk through the doors of Childrens. It's not new and scary anymore. There isn't really anything unknown here. It's nice to know your way around such a huge facility. Where the sun shines during certain parts of the day. Where the best place to park is. Where the play rooms are, the cool ball track, the video games, the library, the endless supplies of stickers. 

I'm thankful to be on a first name basis with Diane in the lab. She's been drawing from Judah since birth. And when blood draws are a normal part of your life, it's good to "know someone". 

I'm thankful for Diane, who sits behind the information desk. It's always nice to see a friendly, familiar face right off the bat. And it's nice to know that she knows us, too.

I'm thankful that I know what to expect from the cafeteria. I know how much to expect to spend on a meal, I know what kinds of snacks will be good to have on hand that I can't get there, and I know how good - or not good - the food will be.

I'm thankful that I've been asked the same questions so many times, that I don't have to think about my answers too much anymore. Instead of the interaction being super clinical, it's become more conversational. And that is a much easier and more pleasant experience.

I'm thankful for all the familiar faces everywhere. Nothing is as unnerving or anxiety-producing as it might otherwise be when you're surrounded with names and faces that you recognize. 

I'm thankful for the Chinese restaurant across the street, and the nurses that let us in on their secret. That place has amazing food! For cheap.

I'm thankful for the mutual respect shared between us and nurses that has come from years of shared experience here. We know they do a great job as nurses. They know we do a great job as Judah's parents. We trust them. They trust us. We work well together.

I'm thankful for the thoughtfulness of nurses and care partners here. The white board in Judah's room says, "Welcome back Judah!" Enough said.

And these are just the tangible things that I'm thankful for! This doesn't even begin to touch the things that God has done in our hearts and lives! The people Jared & I are, the people our 4 kids are and are becoming because of our unique experiences with Judah. The ways God has used Judah to shape our hearts and lives and connect us more deeply to other peoples' pain. I can't begin to describe how thankful I am for all of these things, and for all the people that God has reached through Judah's life! And He's not done yet! But that's another post for another day.

For now, as I look at my beautiful, sleepy son, I'm just thankful. 

From the Waiting Room I

The last 2 years have been pretty quiet for Judah. No major surgeries, no major illnesses. Aside from health maintenance and minor procedures, it's been a time of huge growth and development for him. Jared & I have enjoyed every victory, no matter how small: every new discovery, every goal met, every new accomplishment...every new word or funny thing he said...every new dance move...every time he's tried to imitate his older brothers, however unsuccessfully...every moment spent in pretend play with his sister...every new day in Kindergarten...every snuggle with Ollie...we're thankful for every day that we get to experience life through his eyes, energy, enthusiasm, and love for the little things. He is one incredible kid, and we are so thankful for these last 2 years God has given him to just rest. 

Today we start another chapter. Over the last few days, as I've anticipated this surgery, I have found myself slipping back into "Dr. Mom" mode. It's kind of weird. I mean, in every appt., every minor procedure, every medical thing there is an element of Dr. Mom present. But when something this big hits I definitely find myself looking at the situation - asking questions, gathering information - from that perspective in an effort to protect my heart and my mind. 5 hours in surgery. A complex surgery. One that the dr. can't fully explain what he's going to be doing, because he has to get in there first to see just what things look like. I've sent Judah down that hallway to the OR over 20 times. I fight tears every. single. time. 

I said we start a new chapter today. We do. Judah will finally be able to start moving forward towards healthier urinary and renal function. These repairs will prevent his kidney disease from worsening for a time. This surgery is a very good thing! Within the next 3 months we should be able to get rid of a medication; and we're anticipating that within the next year or so he'll finally be ready to toilet train. All good things. A fresh start in this part of his body. 

And is hard to let go and trust. I have to remind myself so often that Judah isn't really mine. He - every one of my kids - is a gift from God Himself that I have chosen to give back to Him, trusting Him to have His good and perfect way with them, whatever that might mean. I remind myself that Judah is not in the hands of the surgeon, the anesthesiologist, or the nurses. He is in the hands of the Healer. Always. I tell Judah a lot that Jesus is always holding him, especially when Mommy or Daddy can't. It's a truth I need to hear, too. 

Funny, I wrote that and received a text just a few seconds later that included these words:
"Jesus loves little Judah with a tenderness and passion that cannot be equaled. Jesus is there in the operating room with Judah...taking care of [him] in the amazing and beautiful manner only Jesus can achieve." I never cease to be amazed and humbled by God's infintely tender care for me and for us. In the hardest and scariest moments of Judah's (and my) life He has proven Himself wholly trustworthy, unconditionally faithful, and ridiculously gentle. His lovingkindness never fails.

Just got an update from the liasion. Everything is going as planned up to this point. Thanks so much for praying and supporting us in so many different ways! 

Wednesday, September 3, 2014

He's a Rock Star

Well, he's finally tired! Judah has been through 2 1/2 weeks of all day kindergarten, and it's finally catching up to him. I thought for sure he'd be falling asleep at the dinner table, or on the way home from school, or crashing at 7. But no. These last 2 mornings, however, I've been getting him dressed while he's sleeping! And, for the first time, he was not ready for school. I had to walk him in and leave him crying in his classroom doorway. Not fun. Bless his amazing teacher and para:) Apart from this morning, he has seemed to love every minute of school! He made a special hat one day and wore it into the evening at home.

He has filled the side of our fridge with pictures and notes from his teachers.

He is obsessed with his teacher's hair. "It's so long! Her hair is brown!" He LOVES his PE teacher. His whole little face lights up when he talks about Mr. Hesik! Every single day he walks out of the building, runs to me with a big smile on his face, gives me a big hug and says... "Can we go home now?" Ha! He loves school, but he's ready to come home and snuggle.

Everyday I hear various kids saying hi or bye to him, by name. His teacher said that his first week went really well! There are challenges that we knew there would be and were ready for; but there are also things we thought would be a challenge and they haven't been! She said he's happy and energetic about everything and he loves to participate. Yup, no surprise there. His services have been going well, and he seems to enjoy the time he gets with each one of his providers. It's been so fun to "watch" him experience all of these new things through the eyes of Lydia & Ezra who see him at school. AND, he's even telling me things about school and is able to answer some of my questions! This is a HUGE change from preschool! He's grown a lot over the summer. Oh, and if I could just brag about one more little thing. He totally read 27 sight words one day at school last week. This kid is amazing.

We finally moved from the 5 point harness to the big boy seat belt! It was a big day for everyone;)

Friday, August 15, 2014

2 Days Down...and Aced!

Judah is loving kindergarten so far, and has had 2 very good days! His teacher, special ed. teachers, & school counselor have all told me that he's done really well, he's so sweet, & he already has quite a fan club. Not surprising at all considering who we're talking about. That little boy has always been a charmer! He seems to have grown right before my eyes in the last 48 hours. I love listening to all the things he has to say about school and watching him get so excited!

Thanks so much for praying for him - for us - and for all the encouraging notes! It's powerful knowing that we are NOT alone.

Walking to the van with Dad after school

Judah's "I'm excited about school!" face