Monday, August 15, 2011

Days 3 & 4

Judah had a great night last night and has been sailing through today. The tube collecting excess fluid from around his kidney came out this afternoon, so I finally have just Judah back! No more IVs, IMs, Foleys, tubes, lines - NOTHING! I love the freedom of just holding and snuggling him without worrying about pulling on something or hurting him. His incision looks great, he's feeling great, it's time to GO HOME! The discharge papers are ready; we're just waiting for the ID doctor to roll around and "sign off". We were supposed to see them in clinic tomorrow, but I asked if they could just come up here so we didn't have to go anywhere tomorrow. Technically, it is my fault that we're still here, but it does save us a trip tomorrow.

Tonight is the back-to-school picnic for CCS. The Boys are so excited to see all their friends, and I can't wait to get outside! I'll either wear Judah or keep him in his stroller to protect his incision; but I know he'll love being outside and around all the fun activity. I'm thankful he's feeling so well so that we can go:) I can't believe school starts on Wednesday! 4th grade and 1st grade. Am I really that old?

My prayer is that this will be the last post from the 4th floor until October 10th. I can't wait for some that summer is over and we dive right into a crazy Campus Life schedule. *sigh* I guess I'll be praying for some unexpected quiet moments with Jared, too in the weeks to come.

Sunday, August 14, 2011

Shoe Therapy

Today was another good day. Jared and I traded for the afternoon, so I was able to do a load of laundry and sweep the floors; but more importantly read stories, take a long walk, play a game, and just be with my older 3. It was a good chance for Jared to spend one-on-one time with Judah, too; taking a walk, going to the play room, and cuddling. [Jared, you are an extraordinary dad. In case I haven't mentioned that lately.] We had dinner together and then got a movie from the front desk and all crowded around the remote control so we could hear it. At one point Eli, Ezra, Lydia, Judah, & I were all on Judah's bed! Good times.

When everyone left I felt deflated. I thought I would be fine, because J
udah is doing great and we're going home tomorrow; but I suddenly felt sad and lonely and weepy. I texted Jared and told him I just wasn't sure I could do another night. Less than 5 minutes later (4 to be exact) I got a text from a girlfriend who had something for us and wanted to come by with another friend, too! God's timing was perfect (like it could be anything else), and I was amazed at how He decided to meet my needs in that moment. I was so, so happy to see them 20 minutes later, and so was Judah:) We had fun talking and laughing, and of course seeing what they brought! A sweet "ROCK STAR" shirt for Judah, and a pair of shoes for me! This girl has now bought me 2 pairs of shoes - shoes that I would never get for myself, that are fun and totally out of my norm - and she has won herself a friend for life! She so knows the way to my heart.

The coolest thing about this situation is the fact that God so obviously communicated love and care to me. He spoke my love languages. (Gifts and time, not necessarily shoes. Although I'll absolutely take them anytime. Oh how I love shoes!) He met me in that moment and provided. He doesn't always work this way. Sometimes He requires me to rely solely on His presence. Sometimes I'm searching His Word for just the right verse or passage. Sometimes it's a card or an email. Sometimes there is silence, and I am forced to go back to what I know to be true about God and cling to Him and His promises. Today it was accessories. Today God spoke to my heart and brought healing to my soul through the thoughtfulness and love of women in my life.

It's not really about the shoes or the necklace. But I think it's so cool to have these tangible things that I really like anyway to remind me that God does care about the details, those lonely moments; and He will meet me where I am somehow.

Day 2

I realize I'm a little behind, but time manages to slip away from me up here on 4th. So, to catch all of you up...

That 1st night after surgery was a very good one for Judah. He continued to sleep, and slept soundly through the night. And he just kept sleeping. Through breakfast. Through lunch. All the way until his brother coughed and woke him up at 2:30 yesterday afternoon! He's never slept like that before, but I think that made all the difference in those first 24 hrs. after surgery. He woke up happy and hungry:) It was great timing, too. I had just finished eating lunch with "Granny" and the kiddos, and we had come back to the room together. He was happy to see everybody there when he woke up. He took an hour nap after they left awhile later. We had a good evening as a family, sharing dinner with "Granny", and then playing a game. Last night Judah slept well again. Overall, it was a very good day for Judah. Surprisingly good! He has never had a recovery this easy and quick, and I am so, so thankful! To God be the Glory!!!

Judah came out of surgery with a Foley and Vacu-Drain. It's a test tube-like tube that a small catheter drains extra fluid surrounding the kidney into. This morning they pulled his Foley - Praise God! - and will now watch the Vacu-Drain more closely. His output there has been minimal. Like 1/60 of an ounce (or .5cc). If there's a significant increase in drainage (20-30cc) then they'll know that urine is leaking through the repair and the healing process will take longer. In that case he'd come home with a Foley in. Obviously my prayer is that this recovery will continue to go smoothly and we can go home without anything but Judah! So far, so good. We're right on schedule to leave tomorrow, hopefully sooner than later.

Judah's palate revision has been scheduled. That will be a huge day. The revision, a hernia repair, removal of the stent urology put in, and an MRI while he's still out. [The MRI is for his droopy lids. They want to get a close look at his microscopic optic nerves so they can determine whether or not there's a problem that needs to be addressed before they order a surgical repair for the lids.] The date is October 10, and I appreciate you all starting to pray about it now. 2 big requests: 1. That he comes out of surgery/recovery OK so we can use Morphine to control the pain right away. Things spiral out of control quickly if the pain gets ahead of you. 2. That the 1st 48 hrs. will be easier this 2nd time around. OK, one more. 3. That he will be in the hospital for no more than 3 days. I would appreciate prayer for my heart, too. Wow, I guess that's really 4 then. Anyway, I still battle frustration, fear, and anger over this situation, and I need God's grace and presence to get me through this.

This morning Jared and the kids came before church bearing muffins, coffee, and mail! It's become somewhat of a Sunday morning tradition this summer. The mail was the best part this time. I got a package from my cousin with a necklace in it. I love accessories anyway, but this one is super special. I love the style, the look, the beautiful thought behind it; but most of all the necklace itself and the significance it carries! It's a round pendant with a white pearl, and hand stamped on the pendant is, "God is good." Plain as day. What an incredible reminder for me; but also a great testimony to those around me! Nurses and doctors that come and go won't be able to help noticing what is clearly written on this cool pendant! And to be able to wear something like that in the midst of what happens here, and what brings us here is something I'm so excited about! So, Cuz, THANK YOU! I LOVE it so, so much!!! I'm wearing it right now:)

Finally, Judah hit a major milestone last week on the 8th. He's pulling himself up to stand!!! I get so excited every time I see him do it. It's such a huge accomplishment! I love being able to check off those milestones on his list:) He just keeps hitting them!

He's talking on the phone here:)

Friday, August 12, 2011

Day 1

Day 1 is coming to a close, and I'm so glad. Judah has slept since surgery. There was about an hour of restlessness and discomfort in the midst of sleep, but they gave him something for pain and he calmed down quickly. He's sleeping deeply now, and I'm so thankful for every minute he doesn't have to be awake and aware right now. I have no idea what tomorrow will bring for him, but I'm praying that a good, solid night of rest will do wonders. And a visit from his favorite brothers and sister will help, too, no doubt. We get to see them and our Omaha Granny for lunch:)

Speaking of which...

We have had to rely on friends and "family" so much more lately. These last few weeks have been so hard and weird; I don't know what would have happened had it not been for all the people God put beside, behind, and all around us. This surgery and stay comes with a first. Jared is out of town overnight for the annual Campus Life Student Leader Retreat. The timing of all this really sucks, and there was no way around it. It was hard knowing that Jared needed to be here, but he needed to be there, too...and we had to find some way to make both happen. Enter "Auntie" and "Granny". Jared was here with me until surgery was done. The kids spent the day at our best friends' house - Lydia getting all made up and playing with their 12 year old daughter, going to the park, McDonald's for lunch, the boys playing with Japanese toys I can't even pronounce (sorry, Owen) - and are now tucked in snugly at home with "Granny", the wonderful lady we lived with when we moved out here. I miss my family in WI so much it hurts sometimes; but the family we have here can never be replaced either! Thank You Lord! On top of all that the principle of the Boys' school lined up meals for us through the weekend. I'm not sure I can adequately describe what meals for my family does for my heart, but it's a very good thing. And apparently the lasagna they had tonight was the best EVER! I asked for leftovers for lunch tomorrow:) I miss Jared. But I'm beginning to see that this can be a good thing. This is an opportunity to see the Body of Christ moving, working, and ministering the way she is intended to. How can people bless if they're not given the opportunity to bless? How can we meet each others' needs unless we know what they are? Unless we know there are actually needs to be met? I am so often guilty of putting on the front of having it all together, not needing any help. So often the opposite is true. It's humbling to be in this position, but also cool to see God use others to meet our needs. I know, too, that those who get to bless also feel extremely blessed to be able to do so.

OK, I'm stepping down from my box. I'm tired and want to get some sleep before Judah might be awake or uncomfortable. More tomorrow...


Judah is finally in recovery! In about 30 minutes we'll be able to see him and take him upstairs:) The surgery went well, including the change in plans; however, there is added risk with the new operation, and the stay might be a little longer. We just have to see how he does. Can't wait to get my hands on him and cuddle! He's so vulnerable when he comes out of anesthesia.

Thanks for praying. DON'T STOP!

Pyeloplasty Update

Judah is still in surgery, but things are going well. There was a change in plans, however. I won't go into detail here (partly because I don't fully understand it myself), but the infections that Judah had caused a complication with the ureter, so the bottom of Judah's kidney ruptured. Don't worry! Apparently, this changes the operation, but it's a good change - "a better operation" said the surgeon - for Judah. He can now reattach the ureter directly to the kidney. The liaison nurse just stopped by again and said they had to put in a stint (we were hoping to avoid that), and they're xray-ing to make sure placement is good. Then they'll start to close him up. Sounds like he's on the home stretch. It's weird to think that something that's not supposed to happen in surgery, but happens anyway, could actually be a good thing. But that's where I thank the Lord for being in control and wholly sovereign! He sees every detail of Judah's make-up and knows what is best for him.

Please pray for his recovery. He'll be on strooong pain meds through the night; but I'm still concerned that he'll have a rough night. Still hoping to go home on Sunday, but I don't know how this new operation might effect that.

Jud-ini Returns...Again and Again

This has been a looong week, and I've had my doubts as to whether or not we'd actually make it to today. Judah and I have been in the ER every 24 hrs. since Sunday. It's been an emotional week as I've wrestled with God over why and why not. It's been draining emotionally, spiritually, physically, and maritally. I am so ready for this to be over. Way over. But there are no guarantees that we'll go back to our normal pre-infection days. That's where I've been struggling to remember that God takes me one day, one step at a time. And I've struggled to pursue praise throughout this week as well.

Philippians 4:4-9
Rejoice in the Lord always; again I will say rejoice! Let your gentle spirit be known to all men. The Lord is near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus. Finally, bretheren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatecer is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things. The things you have learned and received and heard and seen in me, practice these things, and the God of peace will be with you.
[Copied from the notecard Jared gave to me to keep close.]

Sunday night Jared and I became convinced that something was wrong with Judah's central line. We had no idea what it was, but something was just not right. I took him to the ER, and sure enough, the central line that would last for a year had become displaced and was in his neck. They had to pull it and sent him home with an IV. I knew that wasn't going to work, because Judah has fragile veins and doesn't keep IVs for long; but that was the only option at the time. I climbed into bed at 2:15 Monday morning. Monday night at 9:30 I took Judah back to the ER, because his IV had infiltrated ("gone bad"). We came home after 11 with a new IV. Tuesday morning I called the nurse in the Infcetious Disease office and asked if we had a contingenecy plan for the next time the IV infiltrated. Nada. She gave me her pager number so I could call her directly - just in case - though she was hopeful that the IV would hold til Fri. Tuesday evening I called her to let her know I had had to pull it. She was genuinely sad about that, which helped. After talking to the dr., she called me back with 3 options, in order of the doc's preference.
1. Restart another IV so he could stay on his current antibiotic.
2. Go in for a daily shot in each leg of Rocefin (an antibiotic used for pyelonephritis, and one Judah has had before).
3. Use oral antibiotics.
The goal was to get to surgery healthy. The choice was mine. What a horribly difficult decision! When I weighed all the facts, the consequences of each decision, the risks, and each possible outcome (while a part of my brain is begging God for wisdom) I came to the conclusion that the injections were the best thing in this situation. Making a decision that would cause Judah physical pain made me sick to my stomach. And that first night of injections in the ER made me second guess myself. The nurse called me on Wednesday morning and told me she had thought about us all night. She said she was so proud of me for making that decision, and that's what she would have done also. That affirmation was exactly waht I needed (thank you, Lord)! So, we were in the ER for shots the last 3 evenings, and now we're finally here.

Judah is currently in surgery. It's going to be a longer procedure because of the complications Judah's taking into surgery, and because of the effects of being less than 2 weeks out from infection. I'm not feeling anxious at the monent; but even at the 11th time under anesthesia since the NICU, this isn't any easier. It's still so hard to let him go. I can't even pretend to be in control when he's in the OR.

Thanks so much for praying us through this. I don't understand why God does or allows what He does; but I feel like I have no choice but to trust Him. He is the only One who has proven Himslef to be completley trustworthy; and Judah is His. I want to hold him tight, but he's not really mine to keep. God, that's hard. I'm so glad You're holding him when I can't.

"Funny" Jud-ini story:
On the way home from the ER yesterday Judah was in his carseat. The nephrostomy bag was tucked into the back of his shorts, and he was sitting on it. I pulled into the driveway, came around to get Judah...and saw that something wasn't quite right. Then it hit me. The bag was in front of him, and the blue cap that's not supposed to screw off was, in fact, off. Instantly I thought "CHOKING HAZARD"! Then I found it...and what happened sunk in. The child had somehow gotten a hold of his bag, chewed the blue cap totally off, and emptied half his bag onto himself and his seat. Oh. My. Thankfully, Daddy was able to save the day and reshape the chewed cap and tip so they could fit back together and the bag could then be closed. Seriously. Oh. My.

Hoping to be home on Sunday...

Thursday, August 4, 2011


I am supposed to be at a Campus Life event right now. Instead I am sitting here with Judah, waiting for the Home Health Nurse to come. A day early. Which brings me to my title. Judah - sweet, adorable, innocent Little Lion - has become just as skilled in the art of escape and trickery as any "Terrible Two". In the last 2 weeks he has managed to screw the cap off of an empty water bottle he was chewing on (CHOKING HAZARD!), pull out an IV, wiggle his way out of an obnoxiously secured-with-tape catheter, and, well, you all know about him opening the "empty valve" on his urine bag...with his mouth. Most recently, as in an hour ago, he managed to pull on his central line, loosening the dressing all the way up to the insertion site. Oh. My. Word. Suddenly the site that has access to his blood stream is open to the world! And all its germs! I quickly got the emergency kit out, covered the site with sterile gauze, taped it, and called the nurse.

Which brings me to present. Waiting for the nurse to come change his dressing and draw pre-op labs while she's here instead of coming back tomorrow; while said "Terrible Two" chews my disposable tupperware into oblivion.


I love that boy.

Tuesday, August 2, 2011



I am so, so happy! Can't wait to get home! The next 10 days until surgery will be challenging because of Judah's "extras", but I am so up for the task as long as it means we're HOME!

Prayer for the next 10 days:
That he would stay well!
That I will be able to give him his antibiotics 3x a day without any problems with his central line.
That there will be no problems with his nephrostomy tube.
Along those lines, (and this is so gross) Judah actually chewed the end of his bag open, causing the drainage that was there to spill. I told him I didn't know if I could ever kiss him on the lips again. And then of course I did. Anyway, if even 1 person would pray that he will stay away from his bag and we would have no more spills, I would really appreciate it!
That his surgery on the 12th will go smoothly, and that it would accomplish exactly what it's intended for.

Thanks again everyone! Can't do this without you!

Praise & Percutaneous Nephrostomy Tubes

[I really just like saying that, because it makes me sound smart. And, frankly, I fear that if I quit, I'll forget it all together!]

Revelation 15:3b-4
"Great and marvelous are Your works, O Lord God, the Almighty; Righteous and true are Your ways, King of the nations! Who will not fear, O Lord, and glorify Your name? For You alone are holy; For ALL THE NATIONS WILL COME AND WORSHIP BEFORE YOU, FOR YOUR RIGHTEOUS ACTS HAVE BEEN REVEALED."

Psalm 63:3
Because Your lovingkindness is better than life, My lips will praise You.

Psalm 150:1-6
Praise the LORD! Praise God in His sanctuary; Praise Him in His mighty expanse. Praise Him for His mighty deeds; Praise Him according to His excellent greatness. Praise Him... Praise Him... Praise Him... Praise Him... Praise Him... Praise Him... Let everything that has breath praise the LORD. Praise the LORD!

Praising God this morning for:
*a great night for Judah
*a nurse that we've had several times, who really likes Judah (but, really, who doesn't?), requested to have him today:) We like her a lot, too!
*the coffee shop had my favorite kind of muffin
*Judah is back! Happy, silly, flirty, energetic!
*all the wonderful verses that some of you have shared with me!!!

You know you've spent too much time here when...
...Judah starts picking up nurses' habits, i.e. rubbing his hands together ("washing his hands") like the nurses do every time they enter or leave his room.
...the nurses joke that you could work here, because you know "too much".
...your daughter knows her way around the floor, can help herself to the ice/water machine, knows the playroom rules by heart, and loves to skip her way along the ribbon that runs around the floor.
...Judah has his favorite nurses.
...the coffee shop lady knows your drink and muffin of choice.
...the nurses leave you alone in your room to provide care for your son, because they know you can do it better than they can.
I think I'm getting over the "sad" of being able to make jokes like this, and moving towards having more of a thankful heart. This is what Judah's life looks like. It just is. And while this is not something I would have ever chosen in a million years, I'm thankful for all the silly little things I joke about. They make a difference.

I'm also praising God for:
*A great procedure yesterday! The nephrostomy tube was placed without a hitch, and the surgeon was able to drain a lot from the kidney during that time. They were expecting straight puss, but thankfully his discharge has just been cloudy with some "debris". And he's been draining really well since then. I can't believe how much that kidney was holding - no wonder he's been so sick - but it seems that now we're on the right track, and finally on the road to recovery. Between the drain and the IV meds, he should remain well enough for the surgery on the 12th. I continue to pray that the Lord will allow him to move past this after surgery, and be infection-free again...for a looong time! It's a little daunting to add the care of his new tube to the IV meds (not sure what changes Infectious Disease is going to make to those yet), but it's for a short time, and I know God will take me just one step at a time.
*An evening with my kiddos! Jared and I traded last night so I could take the kids to the National Night Out. I'm so, so glad I did that! I needed the break and we all needed the time together. We came back to the hospital around 9 to show Daddy all the kids' treasures and have some family good night cuddles.

Judah had an echo this morning. He has a slight murmur - sometimes the docs here it, sometimes they don't - and because of all the high fevers he's had recently they wanted to follow up and make sure he's still fine.

ID is waiting for the cultures to come back from the urine the surgeon sent to lab yesterday. The results of the cultures will determine how they medicate him from now until the 12th. Once we're at 48 hrs. (tomorrow) they'll have a 97% result from the cultures, and will be able to make that decision. Then we can go home! Pretty sure that will happen tomorrow. He's doing so well - no fevers for 48 hrs., great drainage, back to himself - they just can't keep him here for much longer:)

I've noticed that it's much easier to have an attitude of praise in the morning. When the previous day with all it contained is in the past, the night is over, the sun is shining, and the day is fresh I can more easily go to the Lord and be thankful. It's at day's end, when I'm battling fatigue and discouragement, that I have a harder time holding on. Those are the times that I look back on and see clearly that God's grace is sufficient, and He is an ever present help in distress. That's when I'm encouraged to continue leaning on His everlasting arms. This is really hard. BUT GOD...

Monday, August 1, 2011

Pursuing Praise II

Exodus 15:2-3, 11
"The LORD is my strength and song, And He has become my salvation; This is my God, and I will praise Him; My father's God, and I will extol Him. The LORD is a warrior; The LORD is His name. Who is like You among the gods, O LORD? Who is like You, majestic in holiness, Awesome in praises, working wonders?"

1 Chronicles 16:8-12
Oh give thanks to the LORD, call upon His name; Make known His deeds among the peoples. Sing to Him, sing praises to Him; Speak of all His wonders. Glory in His holy name; Let the heart of those who seek the LORD be glad. Seek the LORD and His strength; Seek His face continually. Remember His wonderful deeds which He has done, His marvels and the judgments from His mouth.

Hebrews 13:15
Through Him then, let us continually offer up a sacrifice of praise to God, that is, the fruit of lips that give thanks to His name.

Praising the Lord for His goodness and faithfulness today. Trusting Him for Judah's health ans safety. Believing that He is good all the time.