Wednesday, December 28, 2011

Cancel That

Judah was supposed to be prepped for surgery as we speak, but we are home instead. Yesterday was a weird day for him. He woke up early, and by 9:00 was falling asleep again in his highchair. He slept for a  couple hours until we woke him up for PT. He didn't handle that too well, so we rescheduled PT. For the next couple of hours he slept fitfully. He was restless, uncomfortable. I kept waiting for him to spike a fever and throw up, but he never did. Early afternoon he finally settled down into a deep sleep...and slept and slept and slept. Not knowing exactly what was going on in that little body, I just wasn't comfortable allowing him to go under anesthesia., so I cancelled the procedure late yesterday afternoon. He perked up at supper time, and actually played and ate. He went to bed around 10 and had a great night. This morning he's Jolly Judah again:) As disappointing as it is to delay this procedure, I know I made the right call. Judah's body needs to recover from whatever plagued it yesterday, and he needs to eat!

Thanks for praying for this day! I'll let you all know what the new date is. Praise Jesus with me that Judah is OK, and that he's not sick! That little boy scares me sometimes.

Monday, December 12, 2011

Boys Town Procedure

Judah and I were headed to Boys Town this morning at 5 AM! I. Am. Tired. BUT everything went smoothly during Judah's surgery & ABR test. The surgeon expected to find nasal, non-bacterial mucous in Judah's ears since he showed no sign of infection. He doesn't know Judah. Little Lion's ears are full of infection and inflammation. Oh, how I love the mysteries of my a-symptomatic son. The dr. cleaned him up and got the new tubes in without a hitch! The ABR results were a surprise. They expected to find moderate hearing loss because of the inflammation in his ears, the thickness of the ear drums due to infection, and the drops that the dr. used when he replaced the tubes; however, the results showed MILD hearing loss. Meaning, once Judah's ears are healthy again in a couple of weeks this should improve. We'll try another hearing test sometime down the road, possibly another ABR; but we expect him to be fine. Without any improvement he would need hearing aids...but we're not going there, because he'll be just fine.

It was really weird being somewhere else for this procedure, but at least there were no hiccups, and we didn't have to be there long. We were home by 10:30 this morning:)

Thanks so much for praying!!! I'm constantly blessed and encouraged and humbled by the sheer volume of prayers that are brought before the Throne on his/our behalf!

P.S. I love Children's.

Saturday, December 10, 2011

Procedure Dates

Just wanted to let you all know when you can be praying for Judah! His tubes/ABR procedure is this coming Monday, the 12th. We'll be at Boys Town, our 1st time away from Children's. The procedure & test will be quick and easy, Lord willing, so we should be back home mid-morning. Judah's eyelid procedure is on the 28th of this month at the Med. Center. 2nd time away from Children's, but another out-patient procedure that should be without complications. I appreciate prayer for Judah and all the details surrounding these dates, as well as the week of recovery following the lid surgery. I'd also appreciate prayer for my heart as I battle anxiety about being away from "home" for these procedures.

Thanks everyone!!!

Tuesday, November 29, 2011

Urology Friday

The Friday that Judah got all his tests done went pretty well. It was an extremely looong day, and it was definitely difficult for Judah; but he did great, considering everything he had to endure. He continues to blow my mind. That he can go through everything he does, and yet bounce back so quickly and still be so laid back and jolly is a mystery to me. Sometimes I wonder if God somehow protects him mentally and emotionally from all of these things. Maybe some people would just say that his "simple mindedness" is just part of his handicaps; but I tend to believe that what we see as simpleminded is really purity, innocence, and an intimacy with God that we can't experience. Hmmm... I could be wrong, but...something like that. Anyway, I took photos throughout the day so you all could appreciate a little better what these days look like for Judah. And me, too, as his mama.

We spent the majority of our time in Radiology, switching rooms as necessary. (We were at Children's from 10:40 to 3:45 that afternoon.) The 1st part of our "journey" was a renal ultrasound. After having so many of these done over the summer when he was so sick, Judah has decided he doesn't like these anymore. He does NOT appreciate being told just how and where to lay down...until they tell him to lie down on his tummy. That one he doesn't mind. So, I was busy distracting and comforting him for the 30 or so minutes this test takes. Then we had about 15 minutes to cuddle before we moved on to the prep. for Nuclear Medicine.

A Child Life Specialist brought Judah a portable dvd player while we waited, and he had fun watching "Baby Einstein". [Props to the CL Specialists at Children's! Their job, simply put, is to educate and comfort. They make sure to answer any questions the child or parent might have, and then they do whatever they can to make sure the child feels safe, comfortable, and happy. They do a great job! AND I LOVE that they treat Judah with dignity and respect, and as if he were like any other 2 yr. old. All disabilities aside.] Judah needed an IV for the Nuclear Med. test, and I after I emphatically stated that Judah is a horrible stick, the nurse took it upon herself to page a nurse anesthetist. She was able to come down and get the IV in one poke! Always a big deal:)

We then moved on to Nuclear Med. I was anxious about this test, because I knew that Judah would have to have a catheter put in and then get strapped to a board (which I have affectionately termed the baby rotisserie) where he would stay for a solid hour. We took the dvd player along with us, and that worked for awhile; but I knew that Judah was already tired from everything that had gone before, so I turned it off mid-test, gave him his GloWorm, and watched him slowly drift off to sleep. Thankfully, the last 26 minutes of that test were very peaceful for him. He got to say good-bye to the IV when this one was over.

Our last stop in Radiology was for a VCU. Judah had to stay on the baby rotisserie for this one, too. They carried him on it from the Nuc. Med. room to this one. He was on that thing for over an hour-and-a-half! Ugh. This test uses a chalky substance to show the severity of his kidney reflux. The chalk goes through his system - it's pretty wild to see this on screen - and you can see it backwash up into his kidneys...all while they prevent him from urinating. I know it's uncomfortable for him, but I'm not sure what's worse: the chalk and inability to pee, or the baby rotisserie rotating him from side to side. Again, ugh. My main job on this day was to distract, distract, distract. This time I used an Elmo phone. Not super effective, but that's what worked best. At the end of this test he said good-bye to the catheter, and then the rotisserie! We were both so happy! For the first time ever, he got to pick a prize from the big toy box in there! He got a new slinky:)

We finally made it up to the urologist's floor for our appointment around 2:15. We ate a little lunch in the waiting room and just relaxed. It was good to see the doctor again. I hadn't touched base with him since Judah's last hospitalization. His report was mostly good...and all at least "to be expected". Judah's kidneys don't look any better (renal ultrasound), but their function has improved since the procedures from over the summer (Nuclear Med.). His reflux/chronic kidney disease prevents any marked improvement or progress, so that's something that we won't see until sometime down the road...way down the road. His reflux shows very minimal improvement (VCU); as in, he went from a grade 5 to an iffy grade 4 1/2. The dr. is still hopeful, however, that he will make it to age 5 or 6 before he needs to have that repair. The best news is that we don't have to repeat any of these tests for a whole year! The ultrasounds and VCU have been at least every 6 months...although Judah did have 4 or 5 ultrasounds this summer.

We made it home by 4:00. When I came up the steps to my backdoor I saw a box. With my name on it. Just waiting for me at the perfect time. Anyone who knows me - reeeaaally knows me - knows that one of my favorite things in life is packages! I eagerly anticipate the arrival of the mail. Each. Day. Because you just never know what the mailman might bring you! Today he brought a package from 2 of the sweetest girls on the planet who have decided to take me under their wings for a little to speak anyway. They filled this box with things that would spoil me, and they blessed my very soul. Yummy bath stuff, 2 soft scarves, & 2 pairs of fuzzy socks. These girls' gifts were obviously divinely appointed:)

Jared came home a little while later with the 3 older kids and the pair of slippers I had picked out at Target. Again, perfect timing.

It's always such an encouragement to me when I remember - or am so blatantly reminded - that all the time that I am caring for Judah, trying to see to every detail and meet every need, God is caring for me. He sees to every detail and meets every need...and many desires. I really believe that that care package was designed by God, and it & the slippers came at the exact moments that I needed them. God, You are so good.

Judah ended the day with a nice warm bath, and lots of smiles. Naturally.

Thursday, November 17, 2011

Boys Town 2011 & Lid Surgery

Before I dive into Judah's clinic visit from the 11th, I have a prayer request. Judah has a tummy bug today. My prayer is that he'll be over this by tomorrow morning, because he has a complete urological work up at Children's. We'll be there from 10:40 A.M. until sometime after 3. We'll be in Radiology twice for different tests, Nuclear Medicine, and then with the Urologist. It won't be a fun day for Judah, but it's all necessary to monitor his overall urological health, which also effects his kidneys.  Pray that Judah will wake up feeling 100% tomorrow...otherwise, it will be a long time before this can all be coordinated again.

Judah had a good morning at Boys Town this year. It was also our shortest clinic visit ever! He was scheduled to see 8 specialists, but we only had to see 6:) Overall, he's doing well. The speech therapist was very encouraging about the sounds he's making; however, it's impossible to know what kind of sounds to expect from Judah post-palate repair, because his development is all over the chart. He doesn't have a specific delay, he's at the developmental stage of a 12 month old. He hits marks from infant all the way to 2 1/2. So, rather than work off of expectations, we'll just keep doing what we're doing, always challenging him and trying to push him farther. She also gave us some very practical ways to help Judah learn new sounds and words - things we can do each day. The hard part of the morning came when we saw the plastic surgeon (not the one who does Judah's surgeries, but an associate). Judah's repair is open. As soon as I saw it I started to cry. The information we got from the surgeon and the speech therapist regarding the opening was encouraging, but still. At this point we don't know if the opening goes all the way through to the nasal cavity, or if that cavity is still closed. That makes a big difference in whether or not the opening will need to be repaired at all. I won't know anything for sure until we see our surgeon again. The healing process is still not finished, but I don't expect any miracles. That sounds...hopeless. I'm hopeful that his nasal cavity is closed and he won't need another repair. OR, if it's open, that he won't need another repair until they do the bone graft at age 7 or 8. We'll know more after Thanksgiving.

I would really appreciate prayer for my heart in this. It's so hard to be just 4 short weeks past surgery, and have to say, "OK, Lord, have Your way." I don't want Him to have His way, because right now I don't like it. I believe that His love for Judah is so great - unfathomable - that His plan is perfect, that His way is best. I really do believe that. I'm just having a hard time making the heart connection right now. It's hard to make the conscious choice to come to Him with my hands held open, surrendering my desires and Judah, when I don't feel like it. Buuut...I think a lot of my growth in Christ happens when I respond to Him even when I don't feel like it. Especially when I don't feel like it. *sigh*

We saw the UNMC eye specialist this last Tuesday. I like him. He reminds me of my family practice dr. in WI, because he took the time to explain details and even draw diagrams:) I got a good education from them both! I now understand the congenital condition Judah has in his eye muscles. During his development in utero, he developed mostly scar tissue where muscle should be. That explains why his muscles don't work correctly, and why he's a great candidate for surgery. Actually, if he doesn't get the repair, he could have vision problems in the future. There are risks - there are always risks - but based on the information we have from his ophthalmologist & this surgeon, and both of their recommendations, we're going to do the surgery. He doesn't operate at Children's (I'm anxious about that), so we can't combine it with the tube replacement. Both of these procedures are quick and done on an out-patient basis, so I guess that's good. I'm not crazy about all this. So many times under anesthesia. Last night I was thinking about all the surgeries, minor and major, and realized that we don't have an end in sight. There's always something, just down the road a bit.

When I think back to being pregnant with Judah, I remember asking God to heal him only if that brought Him the most glory. But now I wonder, why? Why did He choose Judah to glorify Him in this way? Why not just bring him Home before he ever had to experience one yucky thing in his life? What is it about a sick child that brings Him so much glory? Doesn't it bring Him at least an equal amount of pain to watch His child suffer? I just don't understand Him in His sovereignty. I'm overwhelmed when I think that He finds me worthy of His refinement, worthy of bringing Him glory; but I struggle when I have to come to grips with the fact that Judah is just a child. He doesn't understand any of the things that I do about God, so Jared and I are his only lifelines. And we're not enough. I don't know if I'm even making sense anymore. These are just things I wrestle with...somewhat regularly.

There is so much freedom in surrender...but it's impossible to surrender without the work of Christ in me. I want to cling to Judah and what I understand to be fair and right. Christ's surrender in me says to rest in His sovereignty. Rest.

So I say...


Sunday, November 13, 2011

He's a Writer

Jared still writes me letters. Weekly. I haven't counted recently, but I don't think I can add 1 more letter to the pile that has grown in my sock drawer. (I'm looking forward to going to Hobby Lobby to find a special something to keep them all in.) A few weeks ago, as I was reading his latest letter, it occurred to me that Jared has really grown in his writing. When he first started writing to me over a year ago, his words didn't do the heart of the letter justice. Writing - expressing emotion, conveying heartfelt appreciation, & beautiful words - didn't come easily to him. I never doubted that he felt all of those things and desired to clearly communicate that to me; he just didn't really know how. But now, having written numerous letters over so many months, he has developed the ability to express beautiful, meaningful, tenderhearted, loving words that continually blow me away. He's learned how to express his thoughts and feelings in a way that speaks to me, the woman I am in my soul. He's become poetic. He's even found writings (he won't tell me where) that seem to have been meant specifically for me. He's a writer.

The best thing I can equate it to is the woman who has married a sports fanatic. She doesn't really care about sports; but she loves her man, so she doesn't make a big deal about the fact that he wants to spend Saturday watching football...or whatever. Because she loves him so much, she decides to watch the games with him. She listens to him when he talks about the latest news in athletics. She even buys herself a t-shirt supporting her husband's favorite team. Before she knows it she has become an avid sports fan, anticipating watching the next game with her husband and keeping up on the news with him. She has become a fan for her husband, because she was already a fan of her husband's.

When I talked to Jared about it he said he didn't intend to become a writer from the beginning. He said he never thought about it like that. I think that's amazingly cool; because he started writing letters just for the love of me, without any thought for himself. His letters have taken on deeper meaning now that I see what he has become, the skills that God has honed in him on my behalf. This relationship that we have in letters really benefits us both. I love that.

Just another reason I believe Jared to be the most extraordinary man on the planet. I am so rich.

Tuesday, November 8, 2011

Judah's First Word!!!

We were at ALDI yesterday, and Judah was holding my notebook in the cart. He dropped it, so I said, "Uh-oh!" And then - oh, music to my ears - he copied me! We said it back and forth to each other several times, and he started giggling, and Lydia and I were clapping, and it was awesome! He can't actually make the "uh-oh" sounds, but he understands the intonation and the context and he grunts it. Totally counts!!! I'm so excited for him...and for us! I can't wait to see what he gets next --- MAMA!

I think he's almost back to his pre-op self. He's sleeping almost normally - thank. You. Jesus. - and he's eating a lot better than he was. He's definitely back to his silly, giggly little self:)

He had PT yesterday and did awesome in his walker! I've had a hard time working with him in there, knowing exactly how to motivate him to move forward and work a little bit. Yesterday we found his game: chasing Lydia from one side of the house to the other. It was hilarious to see him stepping, finding his own little rhythm that swaggers from side to side. Too cute for words! I'll have to get it on video. He made some great strides yesterday, and I think is finally starting to grasp the concept of moving himself forward.

I had a cool moment with Judah the other day. It's something that most people would never even notice, but it struck me as a special moment of normalcy. I kneeled on the floor, and pulled him up onto my legs. I reached forward to put his shoes on...and right there, as he was tucked up against my chest, watching me put on his shoe I realized that this was something so normal. Something I would do with any other little 2 year old. Something so mundane under any other circumstance; but a moment in time that I really appreciated sharing with Judah. I don't know if this really makes sense on paper, but I'm so glad I had that moment of clarity and reflection with him. It was a moment to thank God for Judah and all the normal, mundane things we get to do with him. There was a time when we just didn't know...

I appreciate your prayers for Judah's upcoming procedures.
1. That schedules would coordinate so Judah can have his tubes and lids done at the same time.
2. That he'll stay healthy for the procedures. No ear infections because of the fluid!

Wednesday, November 2, 2011

YIPPEEEEE!!! (Palate Recovery #5)

The plastic surgeon looked at Judah's repair yesterday and feels confident that this one will hold!!! Everything looks good, and in another 3 weeks the repair should still be intact...which means NO MORE PALATE REPAIRS!!! Praise God!!! Once this recovery is over we can pursue another swallow study and see if Judah is still aspirating. I can't believe that he might actually be able to move past all of this! If he doesn't aspirate with a complete palate, that changes everything for him! That means regular liquids, which means drinking fluids on his own, which means moving towards removal of the Button! OK, I'm getting a little ahead of myself here, but an intact repair is just the beginning:)

On Monday, the ped. said the upper respiratory stuff is related to the fluid behind Judah's ear drums. He's on a short course of antibiotics and we can start weaning him off the breathing treatments again. I also found out that Judah might be able to have his eye and tube procedures done at the same time. So, we don't realize the "dream" of just 1 procedure. I'm OK with that, because just 1 anesthesia is better any day...and they're both outpatient, so yay!

Speaking of the eye stuff... I got a copy of the letter that Judah's ophthalmologist sent to the surgeon, so I now have the diagnoses written down! All of the individual eye complications have been put under an umbrella diagnosis called "congenital fibrosis of the extraocular musculature". Meaning: developmental delays of the eye muscles from birth. (I think.) I also found out in this letter that his geneticist thinks he has a type of "holoprosencephalic syndrome with polydactyly hypopituitarism and clefting of the palate". All I understand of that is extra fingers, no pituitary gland and cleft palate. We'll have a chance to talk to her at Judah's annual Boys Town visit with his craniofacial team next week.

Judah is doing a little better each day. 3 nights out of the last 7 he slept until 4:30 before coming into our bed. [So thankful for that nice, big king-sized bed!] Last night he ate his 1st full supper since surgery, too! He still consistently refuses breakfast...but he's never been a big breakfast person anyway. Not sure how that happened! I mean, he is a Stewart after all, and we Stewarts love our breakfasts!

Forgot to mention 2 other reasons to celebrate!

- Judah loves to pray! When Jared says "let's pray" he holds out his hands to be held, and then usually giggles his way through prayer. I wish I felt such delight at the thought and act of prayer!

- He tries to put on his socks! It's so sweet when he holds out his cute little foot and tries to figure out how to get that sock on:)

Sunday, October 30, 2011


Tomorrow is the 3 week mark since Judah's surgery - yay! We've almost made it to the no-restraint portion of his recovery:) While I'm thrilled for his sake that he'll no longer have to deal with them, I have to admit that I appreciate those restraints when we go outside and I can set Judah on the ground to explore without fear of him choking on...everything. As far as I can tell the repair is still intact; however, I'm eager to hear what the surgeon has to say on Tuesday.

Judah is still not sleeping or eating well. His progress at mealtimes has been veeeerrrry slooooow, and a cold has complicated an already interrupted sleep routine.

Speaking of a cold... I decided to take him to see his ped. tomorrow. He's had a cough and some wheezing over the last few days that Duo-Neb and Pulmicort are just not kicking. The magic word in Judah's care is "pro-active", so it's probably already a little past time to go. He also has this weird skin thing going on around his button that drives him mad with itching. I just can't seem to get rid of it, so hopefully Dr. A. will be able to offer some help there, too.

The MRI that he had on the 10th showed fluid behind his ear drums. Last week we saw his ENT who concluded that Judah's tubes need to be replaced. They're both blocked and he failed another hearing test. I almost can't believe he's looking at another anesthesia, but... If I'm going to choose to be thankful it's for these reasons:
-For the 1st time ever he's only having 1 procedure done, so this will be out-patient.
-While they're in there, they'll do an ABR which is a hearing test at the brain level. Any time
a kid continues to be non-verbal, hearing is always a question. This will be informative.
-He hasn't had any ear infections.

I got a call from the eye surgeon's office, and we meet with him on Nov. 10. Yet another procedure, but I'm so thankful that he's getting closer and closer to being able to look around like a normal person;)

Judah got his new KidWalk! The rep. from the equipment company came out with our PT last week to get Judah all set up and ready to rock 'n roll...or wheel 'n walk! It was a little odd to think that this piece of equipment wasn't on loan, but actually belongs to him. There's a permanence and a reality check that comes with that. I am so grateful for this piece, though, and the opportunity it affords him. He needs it!

Lately, I've been battling a lot of discouragement and doubt. It revolves around the sale of our house and is exacerbated by lack of sleep. I'm exhausted. It's hard to be all peppy and positive when I'm so tired. Anyway, on Thursday God showed us that He is still in control, He is still involved in every detail, and He is still "on time". The wait is difficult, but I am so encouraged and humbled by the fact that God revealed Himself to us in such a way last week. Our God is indeed AWESOME!

Monday, October 24, 2011

He's a Climber!

He's climbing up steps (just one) and onto the we have to teach him how to get back down so this Mama can stop having palpitations every time she finds him UP!

Thursday, October 20, 2011

Palate Recovery #4 - On the Mend

Judah is starting to move forward again. The surgeon said his repair looks good so far, but wanted me to talk to his ped. about the eating issue. I decided to talk to his OT first, who was here yesterday. She said that he's learning how to swallow and even breathe again, because his anatomy has changed. We think that's the likely reason for the eating and sleeping stuff. Yesterday I was able to get some breakfast and lunch in him, and today I distracted him with Sesame Street and got some yogurt down! I'm definitely encouraged, and so thankful for his OT's help! Last night was better, too. He wasn't as restless and only fussed once overnight. He was even able to get some deep sleep...which means Mama got some, too:) I'm trying to imagine what it would be like to have to re-learn how to breathe and swallow. I can't envision it being anything but weird and uncomfortable. No wonder he's having a hard time. We go back in 2 weeks and will be done with the restraints!

Judah also saw his Endocrinologist this week. He ordered a bone age (x-rays of arm and leg to measure growth). Just this morning I got the results, and his bones measure a little past the 18 month mark. That means he's less than a year behind in growth, and he's slowly but surely catching up! He's also officially on the growth chart for weight - go, Judah!

We also have some answers regarding Judah's Ptosis (droopy eyelids) and limited eye movement. The 2nd MRI came back showing no pressure or tumor in the brain, no inappropriate fluid. So, I talked to his ophthalmologist about it, and...long story short, he spent time on the phone with Judah's neurologist and geneticist and came to the conclusion that he falls into the category of a congenital muscular development disorder or syndrome. My words, not his which I can't even remember much less pronounce. By the way, let me just take a moment to point out that this ophthalmologist, which I've mentioned many times before because I LOVE him, actually called the geneticist, i.e. went the extra mile to thoroughly advocate for Judah, and the neurologist and got back to me within a week's time. This guy is AWESOME! Anyway, he has recommended that Judah see a surgeon at the Med. Center (University of Nebraska Medical Center) who will do the outpatient procedure that will open Judah's lids. The gears are currently in motion to make this happen. Any other eye issues we'll continue to work on with Dr. L. I'm so thankful that we're finally moving forward here and have an end in sight...which will mean Judah seeing without holding his own eyes open!

Recent moments of Celebration:

Judah pulled himself t0 stand against the Brothers' door and tried to reach the doorknob to open it!

Judah can pull himself up onto a small loveseat we have in the playroom!

He's learned the sign for "please"!

He loves taking baths now, and can sit up in the tub and play all by himself!

He's started to "bear walk" occasionally! (It's crawling on hands and feet, rather than knees.)

Monday, October 17, 2011

Palate Recovery #3

Judah was doing so well when we brought him home; eating well, sleeping pretty well, acting like himself for the most part. In the last few days he's gone backwards, and I can't figure out what happened. He's fussy whenever he wakes up, he cries sometimes - just cries - which is just not at all like him. He's not sleeping well, and he's not eating at all. We have nutrition that we can give him through his button so he doesn't miss out on calories/nutrients or lose any weight, but him not taking anything is disturbing. He cries in his seat when we try to feed him, and it takes awhile to comfort him. I'm kind of at a loss. And I'm quickly wearing out, getting exhausted. I'd appreciate prayer about all of this. We see the plastic surgeon tomorrow, so at least then I'll know for sure if his repair is healing well and looking like it's supposed to. When I look at the roof of his mouth I see an angry, ugly mess. I'm eager to get to the dr. for some comforting news. I'm also eager to get my boy back; but I remember with the last repair that it just took a long time. We'll get there. In the mean time...pray for rest for Judah, complete healing, and comfort.

Thanks everyone! I haven't forgotten about posting pictures. But laundry takes precedence...I guess.

Thursday, October 13, 2011

Palate Recovery #2

I was so worried about this recovery, almost making myself sick over it. God has been so, so gracious to Judah in this (like He would be anything else, really); and I am very pleasantly surprised and relieved! There is really no comparing these 1st days since surgery with the last time. Judah slept most of Monday, and we made sure we stayed on top of his pain management so that he would have very little chance of getting uncomfortable. He still had moments of discomfort and restlessness, some fussiness, but overall he did wonderfully! Jared and I spent the afternoon together. I sat and snuggled Judah for 5 hours (didn't know it had even been that long until Jared pointed it out), Jared sat with me, and we laughed at The Office. We had dinner with my folks and the kids that night, and then Mom stayed behind for a bit so we could talk when everyone else went home. It ended up to be a much better day than I had anticipated. Judah had a good night, only needing me to lie down with him for a short time twice.

The next morning Jared surprised me by showing up with flowers and coffee at 7. I was still in "bed", so he cuddled with me for awhile. Best hospital morning ever. Judah popped up in bed that morning like he hadn't had major surgery the day before. I was encouraged; but the rest of the day pretty much went downhill from there. It wasn't awful, but Judah was really crabby (no wonder) and I spent the rest of the day just trying to meet his needs. It was busy. Relief came in the form of Lydia, Grandma, & Grandpa with lunch. It was so good to spend time with them and get a little break while Grandma played "This Little Piggy" with Judah and gave him some lovin's. I asked Jared to come up for the afternoon. I don't do that. I know he'll come home if I need him and ask him to; and that's enough for me. Just to know that he will do that for me on a really bad day. This time, though, I just asked him to come. Exhaustion was setting in, and I was starting to run on empty. We spent the afternoon watching "Big Bang Theory" after Judah finally crashed. I'm not sure why the 2nd day was harder for him then the 1st. We kept the pain meds coming. I know the gauze pack in his mouth was a major irritant. I hate that thing. The 2nd night was a good one for him, too. Wednesday morning was good, simply because I knew the gauze pack was coming out and we were going home! Judah was still irritable all morning, but he was happy to see G'ma & G'pa with Lydia again. By this time, I felt bad for him. He hadn't eaten anything since Sunday, liquids only, so I knew he was hungry and just mad at everything. Poor kid. Still, the recovery up to that point had been better for him than the last one with this surgery. Around 2:00 the gauze pack came out, and Judah slowly started acting more like himself. We were on the road, ready to pick the Boys up from school by 2:50.

His recovery here at home is not at all what I prepared myself for! He's almost completely like himself! The restraints don't seem to bother him much, and they sure don't slow him down. The 2 biggest challenges we face now are: eating & hands-away-from-mouth.

Judah wants to feed himself, but he can't. We have to feed him, and he gets very frustrated with that. Meal times haven't been pleasant. He just needs to get over it for now, and then I think he'll be fine. His diet has had to change, too, and that adds to it. The other challenge is making sure his hands don't fly into his mouth in the few minutes or seconds we have his restraints off every couple hours. My biggest fear is that he will damage his repair. That's my prayer request for right now. That God would protect that repair - supernaturally if necessary - and allow total healing in the next 6 weeks or so. That's the time frame we have before we know for sure that this thing isn't going to re-open on its own.

Gotta go get the Boys. I'll post a few pics later.

Monday, October 10, 2011


Judah is in Recovery slowly waking up. He's almost done with this part. The next part will be the hardest. Everything went well, and as far as we know, he's doing OK in Recovery. Please pray in these next 48 hours. They will be the hardest. He'll be in pain, he'll have a gauze pack stitched to the roof of his mouth to protect the new repair, and he'll be all-around uncomfortable. Pray that we'll be able to stay on top of his pain and that he'll be able to get good rest in spite of the uncomfortable gauze pack. (That will effect what position he can sleep in, because it can effect ease of breathing a little bit.) Pray that Jared and I will be able to comfort him. And please pray that I will keep my eyes on Him and the big picture of His plan for Judah. This is just one small part. Judah can only move forward from here.

Surgery #2

The hernia repair went well, although we haven't seen that surgeon yet. Judah is currently down in MRI, and will be wrapping up within the next 30-45 minutes or so. He's still doing well. My sweet boy. I can't wait to snuggle him and smell his little boy smell. Weird the things that stand out to me when I'm missing him in these situations.

So thankful that Jared is sitting beside me, here for the long haul today; and that my big 3 are in good hands. Can't wait to be together for dinner tonight!

Surgery #1

We talked to the plastic surgeon about a half hour ago, and he told us everything went well with the revision. He's happy. The next 3 weeks will be important as we keep Judah in elbow restraints to prevent little fingers from opening the new repair; and the next 6 weeks he'll be on a soft diet. I'm a little bit nervous after talking to the doctor about prognosis. There is no guarantee that this revision will be the last. When dealing with scar tissue, the general rule is that the more there is the more likely the need for more repair will arise. That's a lot of "more". I originally thought that this would be it for him. In reality, scar tissue is unpredictable and it is possible that another revision is in his future. It will be a challenge for me to surrender my anxiety and just stay in the moments of each day, but that's my prayer for my own heart.

Just got another update, and the general surgeon is already on the 2nd hernia. He'll be wrapping up soon, and then Judah will be on his way down to MRI.

As I think about what the rest of the day will look like for Judah, I'm trying to come to the Lord with open hands, surrendering Judah and my Mama grip on him. Surrendering my fear and anxiety. Surrendering my sadness. Judah is His and He is good.

Thanks for your continued prayer. Thanks for being God's arms around us, holding us up. And thanks to those of you who will extend your arms, literally, to hold us up in the days to come.

Sunday, October 9, 2011

Prayer Reminder

Jared and I spent 55 wonderful, restful, fun, relaxing, kid-free hours together this weekend while Grandma & Grandpa held down the fort. This was a 1st for us since Judah's birth, and definitely a 1st for Grandma who was primarily responsible for Judah's care while we were gone! We came home to 4 happy, energetic kiddos and 2 tired grandparents; but a good time was had by all, and Grandma stayed on top of everything. What a relief it was for Jared and I to have a full weekend free of meds, pump, diapers, and "therapy". Thank you, thank you, thank you, Grandma & Gramps!!! Now we shift gears and try to prepare ourselves for tomorrow and the next several days and weeks.

We have finally made it to Judah's palate/bilateral inguinal hernia repair and MRI. Barring the return of a high fever between now and tomorrow morning, we will be on our way to the hospital at 5:15. His surgery is at 7. Please, please, please pray!!!

1. Judah's pain management
2. Lots of sleep, in spite of pain and discomfort
3. Smooth healing & recovery over the next 3 weeks in elbow restraints
4. My heart

Thanks so much for praying for Judah and standing with us. We are better together!!!

Wednesday, September 28, 2011


This has been a weird week. It's been emotionally unsettling and draining and confusing and sad and just...weird. A lot of this surrounds Trevor's accident. I think God is using his accident in my life to bring clarity and a refined sense of purpose. Maybe more. I know He's using Trevor's circumstances to touch numerous lives in myriad ways, like only God can. I'm just speaking for me here. And if I ever come across as selfish in the next several minutes, forgive me. That is certainly not my heart. Although, my flesh is often a very real and obnoxiously loud interruption in my heart's intentions. Anyway...

The turning point for me was Sunday. Jake decided to change up the service a bit for Trevor. I was eager to be a part of that, and was so thankful that God brought Judah and I home so we could be there. But the emotions started before we even got to church! I had a moment - just a moment - where I was...I don't even know what to call it. I was ashamed to even say it out loud. I'm not sure why I did. But I told Jared how awesome it is that the A's have so much support right now; that everyone is coming together to hold them up and walk through this with them. But it's temporary. This won't last forever. Our challenges and ups-n-downs with Judah will. I feel awful even writing that down. But that's where I was for that moment in time. And Jared let me feel that...grief, frustration, whatever it was for that moment, and then we moved on. [Part of my motivation for writing things like this down is thinking about the off chance that sometime someone will read that, and they'll need to know they're not alone when they think that, or they need to have permission to feel that way, or to at least be honest about how they're feeling. So, that's that. Moving on...] The morning at church was amazing. Best service I have been to since...I don't know when. Well, it's at least up there with Eli's baptism service:) It was an emotional and moving service that was in honor of Trevor; but it was so God-honoring and Christ-centered that Trevor became a beautiful vessel of God's grace and glory, rather than the point of the service. The truth statement was "My life is not about me". The crux of the message was: Surrender. I have understood for a long time that we are made to bring glory to God. Our purpose in life is to glorify Him and build His Kingdom. Over the last 2 1/2 years I have struggled to grasp the truth that this life and what happens in it is not really about me, or us, but about and for and because of Him. But that's really kind of an end. His glory is a goal. It's something we strive for and desire - living a life that brings Him glory. It's something we want others to see - His glory. But the beginning is surrender. Surrender. Laying down. Giving up. Face-planting before God. Now I see. I really see this. When I think back to the last 2 1/2 years of writing, I see an undercurrent that I never before noticed. And I understand now what God was speaking to my heart in the hospital. It's the message of surrender. God has been walking with me, holding my hand; but with every step I believe He's been teaching me how to surrender. He's been pursuing my heart. It's like every other lesson He's taught me is a just a sub-point under the heading "Surrender". I see now that even my most recent encounter with Him revolves around this. Choosing to rejoice, to pray, to thank - each one requires surrender. I have to lay self down to focus solely on Him. I have to give up what I want or think is best to truly thank Him and rejoice. I will be looking at things much differently from now on. I'm so, so thankful for His work in my heart! But not gonna lie. I'm a little apprehensive about what a lifestyle of consciously choosing to surrender requires. And, frankly, it sounds exhausting.

The last few days have also been difficult because of the weight I feel for Trevor and his parents. The things they're texting, or writing on CaringBridge (; what they're experiencing right now resonates deeply with me. I no longer have the luxury of merely feeling sympathy; full blown empathy has taken residence in my heart. I'm extremely thankful that God has given me a heart of compassion borne from our own experiences with Judah; but it's heavy. My heart is very heavy.

I guess that's it. I'm just in this weird place right now; right in the middle of this process, this work that God is doing. What a fabulous and awkward place to be. I feel like I'm just on the brink of seeing greatness in many ways. Not just in my own heart, but in the lives of Trevor and his family, in our Campus Life kids, in our Millard West community...and the hearts of my own kiddos. Speaking of which...

It has been so fun for me to see Lydia notice God more and more since she got her Jesus heart:) She is talking to her babies about Jesus A LOT! The other morning as we were cuddling in bed, she randomly said, "But there's no queen in Heaven." So, we had a little talk about how we get to be princes and princesses because we're children of the King. "And even Daddy is a children." My favorite is her new awareness of whose she is. She still loves her "Princess Lydia" stories that revolve around Princess Lydia, King Daddy, & Queen Mommy. She used to tell Daddy that he was her best King Daddy. Now she says, "Well...Jesus is my King Daddy..." Melts my heart.

Monday, September 26, 2011

Big Boy Stuff

Judah has been transitioning at meal time. He has decided that he wants to eat different textures, eat more snacks, and do it himself! Meals have gotten a little messier around here, but it's so worth it!!!

Saturday, September 24, 2011

Throw it Out There

Judah is doing so well, that I decided to ask ID if there was any possibility we could go home tonight. I just wanted to throw it out there, knowing full well they could say no. I had my "arguments" all ready, and ID agreed with me! So... We're going home tonight!!! First time I've ever given one of his doctors a hug:)

We'll be back here in less than 3 weeks for Judah's next surgery. I appreciate everyone continuing to pray for him and the rest of our family as October 10 and recovery approaches. Praise Jesus that my folks will be here for this one!

Friday, September 23, 2011

Jesus Heart

Get ready to do a happy dance...

On September 16 I welcomed a new little sister into "the Family" - my own Little Merry Sunshine, Lydia. Coolest thing I have ever been a part of! It went something like this:

Wednesday morning the Boys had a chapel speaker that used a black rubber rat to illustrate our hearts before Jesus. He emphasized our need for what he called a "Jesus heart". Fast forward to Thursday night devotions. Jared usually does devos, but Lydia asked for me; so the 3 kids and I packed onto the playroom love seat and settled in. We read about Jesus in the Garden of Gethsemane, and how He was going to take our sin upon Himself. I decided to reiterate what the Boys had heard in chapel the day before. I talked about Jesus getting a black rat heart so that He could give us His Jesus heart. We started talking about how our hearts are black with sin until Jesus comes to live in there. Lydia started asking questions, and I could see her just starting to connect the dots. The light was coming on! She asked with round eyes and concern in her voice if she had a black heart. I asked her if she had ever asked Jesus to come live in her heart. She sadly said no. I can still see the look on her face as understanding dawned in her heart. She was genuinely upset. I had to tell her then that she had a black heart, because of her sin. She wanted to ask Jesus for a Jesus heart right then, and was going to go to her room; but I asked her if she wanted to pray with me. I took her hand, and she said, "God, will You please come live inside me and give me a Jesus heart?" Then she looked up at me with a light in her eyes and joy written all over her precious little face! I will never forget that face! I told her that when we ask God to do that HE DOES! She started jumping all around the room laughing, and ran to tell Daddy...who was in the shower. That was kinda funny. She was so excited he couldn't even understand her! I have loved hearing her tell people since then. She has the sweetest tone when she says that she has a new Jesus heart. I am thrilled that the Boys got to be a part of this, too. They have both professed faith, but I didn't get to be a part of their life-changing moments. How awesome of God to allow us all to share in Lydia's.


I'm pretty sure Judah's been anesthetized 13 times. We have a small village of bears. What a champ. Anyway, he's having another good day. The procedure this morning went quickly and smoothly, and Judah was back in my arms shortly after 8:00. I'm excited, because this was the first time he wasn't intubated! And he handled it like a pro. He bounced back quickly once he got some food in his belly, and he's finally taking a nice nap:) Lydia is with us again. We took Judah for a walk outside, and then explored some. We're having some down time now, watching WALL-E. I'm hoping to sneak in a little nap. Last night Judah's IV alarmed several times, because it was kinking. Praise Jesus that he was able to keep it until his morning antibiotics and then into the OR where he got a new one...WHILE HE WAS SLEEPING! We are all done with pokes this time around! All that to say, that after not much sleep and having to be up at 6:30, I'm sleeeeepyyy...

We're still on track to leave Sunday. Judah is still fever-free, holding down everything, happy:)

I'm super disappointed about losing another weekend with my family and having to cancel the camping plans we had made. But...I know God is at work in my heart, and my sob fest with Him
yesterday was...productive. This isn't easy, this whole choosing to rejoice and give thanks. The praying part comes more easily to me, but the rest will be a work in progress. For a long time I fear.

Comforting himself w/ Grandma's voice from his "Grandma book"

Best part of any procedure

He "stole" the Charge Nurse's phone & didn't appreciate having to give it back. He actually called "Miss" Joy at the front desk!

5 min. later Joy brought him his own. Little charmer...

Walkin' on sunshine

Thursday, September 22, 2011

New News

The results are in. There is an oral drug that will kill this bug! YAY! This comes with a slight change of plans however. Surgery is tomorrow at 7 (thankyou, Lord, for the early time!!!), and then ID wants to keep him here for observation on IV meds until Sunday. Boo. I understand the reasoning behind this decision, but I miss church. I've missed so much. This is the part where I allow God to move in my heart to choose joy, prayer, and thankfulness while I give Him my disappointment. This is not easy.

Thanks for praying everyone. Judah is doing really well!

*swear word*

This one will be ugly. Sometimes these posts are for everyone, to keep you informed about Judah and what's going on. Sometimes...honestly, they're for me. A way to process what's happening. A way to work through grief, frustration, anger, fear, or whatever else is battling for prominence in my heart. This is one of those. I fear that if I don't write down these angry feelings I'm dealing, I won't be able to process and work through this. I don't mind you reading it. Maybe God will do something here. Actually, that's what I'm counting on. Just wanted you to know what this was up front.

I'm angry. I'm really just plain mad. When I think about all the things that I could be or want to be mad at, I can't help but trace it back to God, because He's the One in control. Which means that I'm really just mad at God. As I say that, I'm reminded of verses that say something to the effect of "I'M GOD! Who are you?". I know. You are God; I am not. But You created me to feel deeply. To be passionate. And You called me to a life that You were going to fill with these emotions! My emotional make-up mirrors Yours! Not perfectly, obviously, but You are deeply emotional and overwhelmingly passionate. So, I need to feel! I don't want to be angry with You! That's why I'm here. I'm expecting You to show up. I can't live with this anger. I can't be who You want me to be when I feel frustrated with You. This isn't just about me. This involves my husband, my children, those within my sphere of influence, and those without. That's a lot of people. And I don't want to be that wife or mom or friend or stranger or whomever that totally ruins Your image and Name because of how I behave or what I say. Or how I say it. Blech!

So here's what I don't get. Why can't our plans just happen? We have made so many good plans for our family - small things, big things, in the middle things - and every one has fallen through since the end of June. Our anniversary. A trip to WI. Lunch dates. Labor Day weekend plans. Camping. Time with friends. Even littler things, but there's always something. It's mostly been hospital stays that have intruded. A couple times it's been another kiddo that comes down with something. But, seriously, it's always something. My kids have had to give up so much this summer. They've been thrust into uncomfortable, unpredictable situations; they've lost out on fun; they've given up Mom and normal routine and family stuff; they've lost security. I can hear bitterness. I don't want to be bitter. That's why I knew I had to get here. The Word has been hugely encouraging to me throughout the summer; but somehow, it just hasn't been enough to deal with this. Unless I'm doing something wrong. I feel like I'm not even thinking super clearly. If I try to get to the root of the problem, I know it's something in my heart. Selfishness? Pride? Bitterness? I can't nail it down. God, You see my heart. You know what it is.

I desire to be like Paul. I want to be so singularly focused on God's glory and His Kingdom that my circumstances - whatever they may be - aren't devastating. That everything isn't such a big deal. I don't want to survive, just getting through the day, waiting for the next ball to drop. Feeling anxious about when the next hospitalization is going to be. Not being able to look forward to plans we have in the near future, because I don't really believe they're going to happen. I want to see Judah suffer, see my kids hurt, make sacrifices, yet be so consumed with Christ that it doesn't hurt so much. That I'm more concerned about Kingdom-building than I am with these other things. But I just don't know if that's possible. Maybe He consumes us with Himself, changes our attitudes and perspectives, gives us an overwhelming desire for His glory and His Kingdom...but still lets it hurt the same. Because that keeps us running to Him and longing for Heaven. Life is so unfair. Maybe I've been looking too much at what this life supposedly has to offer, and have taken my eyes off the Prize. God, I don't know how to get over this summer. And the things we are still having to give up. I can't do it. I'm broken. I need You to do it...but You're just not coming to the rescue fast enough.

I want my children to see joyful living. I want them to see victory, living above the circumstances, joy that defies pain. I want them to see life that goes beyond just surviving. A life that is lived in complete dependency on a Sovereign, Compassionate Father, finding contentment and completeness in Him alone, regardless of what He does or allows. Because of what He does or allows! How do I show this to my kids when I fail so completely? When they see the tears and hear the questions? I want an attitude of dependency and joy and trust that is genuine and transparent. I want to be authentic, allowing those around me to see my struggles; but I also want them to see joy in the midst of that, and victory on the other side. I come into contact with dozens of medical staff and students here at Children's on a daily basis. I feel a weight of responsibility to be an accurate representation of who Christ is. I can fake my attitudes and gloss over my emotions; but then I'm doing an injustice to God's grace and rescue in my life. I just don't know how to balance authenticity with caution or respect for where others are in their lives. I don't even know if that makes sense. It does in my head. And, thankfully, I have the Holy Spirit to translate. God, You get it.

Would You give me something? A verse? A word? A passage? Something to take away from here? I need to know that You're going to get me out of here. That You're going to heal my heart and move me past this summer and beginning of fall without the anger and bitterness. That You're going to enable me to let. it. go.

Are You kidding me? I just opened my Bible to look around a little bit, and the Book opened to Thess. 5:16-18. I don't usually buy into that whole I-just-opened-my-Bible-and-God-told-me-what-to-do-right-there mentality, but...are You serious? "Rejoice always; pray without ceasing; in everything give thanks; for this is God's will for you in Christ Jesus."

Fine. If that's how it's going to be, then let's unpack this a little bit. I see a choice here. I have to choose to rejoice, pray, and give thanks. It doesn't just come naturally. Especially in the midst of trials. But why rejoice first? It makes more sense to pray first, asking for help to rejoice. Because choosing to rejoice first allows me to approach You with a humble, willing, teachable heart? Because a heart that rejoices doesn't have room for bitterness? Because our outward appearance and behavior is a reflection of what's in our hearts, and that's what the world sees? Hmmm... Pray. And not just those one or two word "Lord, help" kinds of prayers. An attitude of prayer. A constant awareness that our hearts are in the very presence of the Throne of Grace. A lifestyle of dependence that defines our thoughts and attitudes. Right? Praying without ceasing would require total transparency with our Creator, recognizing who we are and Who He is. But it also requires self-sacrifice and a heart for others. Surely this kind of prayer life is others-centered. Hmmm... Give thanks. IN everything. #3 conscious choice. I know from experience that being thankful, even when I don't feel like it, changes my perspective, my attitude, how I relate to others. A thankful heart is powerful. Pursuing genuine thanksgiving will lead to humility and a transformed heart. And this kind of lifestyle will speak volumes to the world! This is God's will for me. This is what He wants for me. At the center of it is this: He wants my heart. I thought He had it, but I realize now that I have been holding onto things outside of my control, allowing seeds of bitterness to grow and choke my heart. I have been squeezing the life out of my own heart. I need to relinquish that illusion of control, and give Him my whole heart. Every part of it. OK, so... Here.

Lord, You have my heart. All of it. I surrender. You are better than...anything and everything. I'm sorry for holding so tightly to my own wants and what I think is best. I'm sorry for holding onto my anger. I choose You over my anger. I choose Your best over what I think is best. I choose Your will for my children over mine. I choose Your Life over a pleasant life. I choose Your plan for Judah over what I want for him. I choose to trust You. I choose to praise and thank You. And I choose to rejoice. HELP! It will only be You in me. God, I'm so glad that You're good, and that Your definition of "good" is so much more than I can comprehend. I'm so glad You see the big picture. And yet You choose to sit with me and hold my hand.

God, You showed up. You never disappoint.

Wednesday, September 21, 2011

A New Bug

It's official. Judah is growing a new-to-him bug in his urine culture. Ew. The good news is that it's a pretty common one this time, and is usually sensitive to the antibiotics he's already on. Sensitivities will be in tomorrow. I also heard from the Urology office today. They put him on the schedule for Friday afternoon to have the stent removed. This should prevent further least, that's the hope. He was on track to be released Friday, so that means probably Saturday at the earliest now. I'm hoping to actually talk to the urologist later today.

Judah had a good night, and has been without fever since yesterday! He's doing so much better today than he was yesterday - thank the Lord!

I have Lydia here for the afternoon! We're currently sitting in the hallway just outside of Judah's
door. At 2 this afternoon there was a game of Hospital BINGO that broadcast on the TV, and Lydia won! They're bringing the prize cart around soon, and she wants to see them coming...hence our current location:) She's so funny. She's become my personal advocate. When the family comes to visit Judah in the hospital she makes sure that Jared changes his diapers; and when we come home, for the 1st couple days --

[Insert day-long interruptions here. It is now Thursday morning. Sheesh!]

As I was saying... Lydia insists that Daddy take care of the diapers and the feeding and whatever else she thinks he should be doing since I've been at the hospital with Judah doing it all. It's really adorable and I love it! She didn't have to wait in the hall forever. Eventually the prize cart did come and she picked a package of tattoos - candy and sweets. Silly girl. We had a good afternoon together.

Judah lost his IV in the afternoon, so he's on #2. I'm praying this one stays in place for as long as he needs it. I'm eager to get the sensitivities back so we know how to plan in the meds department. If it's something that's sensitive to an oral med., great! If not, we're looking at another PICC line attempt and IV meds at home for a week or so.

Family night wasn't exactly what we were going for last night. We had planned on dinner and a movie together, but late in the afternoon we found out that one of our students - a kid we've become pretty attached to - got in a serious car accident. His name is Trevor and I would ask that you pray for him as well. His injuries are extensive, and he has a long road of recovery ahead of him. He was already a great kid, so I wonder who God will mold him to be throughout these next several months. Jared was able to see him last night, spending time in prayer with his parents. I wish my time with the kids had gone a little more smoothly, and I missed Jared. It was a weird, emotional evening.

Today should be a quiet one for us. Nothing but labs on the schedule. Hopefully some results from the ultrasound and a viral panel they ran to check for anything upper respiratory. The IV drip will get turned off this morning, so no more tower! We're heading outside:) And we'll actually have visitors today! A girlfriend this morning, and 4 more this evening. Can't wait!

Judah is doing better and better, feeling more like himself; but that makes the stays harder. He gets bored and I get bored and there's not much to do around here all the time. I get crabby the longer we have to stay here, and I just want to be home. Pray for my heart. And my attitude. I realized that over time I have developed a good reputation here, and I don't want to blow that in a moment of selfishness or frustration or...whatever. My heart wants Kingdom-building to happen here, but sometimes my emotions, etc. get in the way of that.

A Family Night Funny:
We were telling the kids that Trevor was going to be brought to Children's, but they were full, so he was taken somewhere else. Ezra asked, "Does Trevor usually go to Children's?" I said, "Well...normal people don't usually go to hospitals!" I just had to laugh...and got another good laugh outta that when I told Mom. My kids are definitely growing up with different perspectives and assumptions from other kids!

Tuesday, September 20, 2011

Welcome "Home"

The 4th floor has become somewhat of a second home to Judah and me over these last few weeks. While it totally sucks that we're back here, it is always nice to here that the Charge Nurse said "Yay Judah!" when she saw that he was coming; or to see the familiar face of a Care Partner waiting for you in your room; or to be able to have conversations and actual relationship with the Hospitalist because of positive history here.

Judah was doing fine, but this morning woke up with a temp of 103.5. We were at the pediatrician's office before 10, and admitted at Children's around 11:30. The afternoon is kind of a blur. His fever had gone down with Tylenol earlier in the day, but crept up quickly after noon. He became lethargic, sleeping through everything: straight cath., IV, blood draws. I was sad that he was obviously so sick with a fever, but thankful that he didn't really know what was going on. Finally his bloodwork came back, and the docs had a scare when they saw that his blood sugar had almost bottomed out at 31. They got glucose from the crash cart, gave him another stress dose of his steroids, and waited. He responded quickly. At the same time, his blood pressure was dropping a little. There was some concern that he might end up downstairs in the PICU, but he pulled through. He's not completely out of the woods yet, but so far so good.

The blood and urine cultures aren't back yet, but we know it's bacterial, and the suspicion is that we're dealing with another kidney infection. He has another renal ultrasound tomorrow, and he's started on 2 IV antibiotics. We'll be here through the week...possibly into next week. It just depends on how he does and what happens.

Emotionally...I'm doing OK. Right now. I was close to tears a couple times today, but when I look back on the day I see how faithful the Lord was to gently carry me through. This is silly, but I almost cried on the way to the hospital when I realized that I was going to miss lunch. Enter Jared. He met Lydia, Judah, and me at check-in carrying 2 McDonald's bags. One with a burger and fries, the other with a caramel frappe. He thoroughly impressed all the ladies behind the desks! And his tenderness and thoughtfulness spoke to my heart.

I also had the opportunity to tell the Hospitalist that one of my core beliefs about God is that He is always good, He only does good, and somehow this is part of His perfect plan for Judah. Even though I don't understand it. Sharing that was such a cool moment for me, because my words usually fail me. Or they come out all wrong and awkward. This moment was so the Lord. It was a very cool conversation. It was real, and I appreciated the fact that the dr. talked to me on a personal level, sharing his own frustration on Judah's behalf.

Spiritually, I'm stretching. God has been using His Word, girlfriends, and circumstances to remind me over and over that my life, this life and what happens in it - everything - is for His glory. I've been thinking about Paul lately. I can't understand how he so thoroughly grasped this truth! His attitude throughout his various trials and sufferings always pointed to Christ, and he was humbled to be able to suffer for Him! I'm not walking nearly the same road, and yet I don't come close to mirroring this attitude. It's definitely difficult to watch your child suffer - I so want it to be me instead - but there still has to be a way to get to the place of humbly accepting every trial that comes, thanking Him, seeking His glory, and not allowing it to devastate you every time. I just don't know how to get there. I believe that God guides our steps and ordains our days according to His plans and purposes, and for His glory. I just don't know how to reconcile that with my very human, very strong emotions.

Ya, so...we're here again, and I don't know if I can do this again. But I'm keeping Psalm 103:1-5, 13-14 and Jeremiah 31:3 at the forefront of my mind. I'm cuddling with Judah A LOT. I'm trying to let go of my pride as we ask friends for help...again; and trying to somehow maintain a praise-filled, thankful attitude.

Just got off the phone with my mom. We had some awesome church! I'm so thankful for that woman and how God has chosen to knit our hearts together. She is such a huge encouragement to me, and I'm so proud of the woman that she is and is becoming!

This post feels very discombobulated, but I guess that's just how I'm kinda feeling. I have all kinds of thoughts flying around in my brain, along with new medical information, and another loss of good plans for me and my family. I should probably go to bed. Lab will be here by 6:30 tomorrow morning, and 6:30 is just around the corner.

Please pray for:

Judah's health, and wisdom for the docs as they treat him.
My heart, and wisdom for me as I advocate and ask questions.
Jared as he holds down the fort.
The kids as they adjust to another bump in the road. Lydia is struggling the most, wanting to cling to Mommy, but settling for clinging to Daddy. And Daddy has to get some work done!


Saturday, September 17, 2011

Prayer Request II

I am relieved to tell you that for right now Judah is just going back on the anti-fungal medication. I'll re-evaluate with Infectious Disease on Monday, but this will get us through the weekend. At this point, the thing that could complicate this situation is the stent in Judah's kidney. Stents and yeast do not get along. If the yeast continues to a problem, the stent may need to be removed earlier than October 10.

Keep praying for these details, and for wisdom for Jared & I and all the doctors & specialists involved. THANK YOU!!!

Prayer Request

Judah had a post-treatment urine sample/culture done on Thursday. I got a call from his nurse this morning who told me that there is still yeast in his urine. Yeast infections are pretty common. What I didn't fully realize until this week is that yeast in the bladder and urinary tract are extremely uncommon. The fact that he still has yeast in the urine is say the least. I am very anxious right now about what this means. My mind is struggling to focus on Christ rather than the worst case scenario. Judah is a-symptomatic, showing no signs of any infection! That's not really that unusual for him, though. My first prayer is obviously for complete healing and treatment at home. My second prayer is for my heart. My third, that I will be a strong advocate for Judah whatever the treatment plan may be.

Thanks for praying. I'll keep you posted...hopefully from the living room.

Friday, September 9, 2011

Since the 5th Floor...

I apologize for getting this out so many days after discharge. I can't believe how crazy life gets sometimes, and how quickly time gets away from me...

Judah has been doing OK since being released on Monday, but not awesome. He's still not 100%, but I think that's because he's still battling congestion and a somewhat scratchy throat. I decided to take him to his pulmonologist today - before the weekend hits - to make sure there's nothing more serious going on. I'm expecting to hear something about an upper airway infection, or upper respiratory virus; nothing serious.

As far as the fungal infection... The yeast that Judah grew is in an uncommon one. Shocking. They sent him home on an oral drug different from the one they were planning on. He seems to be handling it fine; but we have 2 follow-ups early next week to make sure everything's OK for real. They'll know what the yeast is sensitive to by then, and will make any drug changes they find necessary. The one he's on appears to be doing the trick, so hopefully no changes.

I'll keep everyone posted. Probably...

Sunday, September 4, 2011

August 28, 2011

This is a Sunday that will always be special to me. We publicly dedicated Judah to the Lord with our family, Omaha family, and church family all present (minus "Granny" whom we dearly missed) and Jared baptized Eli! It was one of the coolest church services ever! Our church (Finding Life Church, meets at an old school, so we had our baptism service at some one's home in Elkhorn. I loved, loved, loved the feeling of community as we all sat around the pool listening to several adults and children tell us how God drew them to Himself.

We got to start the service with Judah's dedication, sharing with everyone why we named him Judah, and then reading 4 passages of Scripture that are meaningful to us for Judah.

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 of His mouth.

Psalm 13:5-6
But I have trusted in Your lovingkindness; My heart shall rejoice in Your salvation. I will sing to the LORD, Because He has dealt bountifully with me.

Psalm 62:8
Trust in Him at all times, O people; Pour out your heart before Him; God is a refuge for us.

My other kids' dedications were very special and meaningful; but there was a depth to Judah's that superseded any other dedication I've been to. I had no problem giving my other kids back
to the Lord, committing to let them go whenever He called them home. But when I had to affirm
that in Judah's ceremony... I paused and couldn't say yes right away. We've actually been there with Judah already, more than once. That statement is very real to me, because I have already had to let him go several times. It was...powerful to know what I was saying when I said "Yes, God can have him back at any moment that He chooses." That sounds weird, but there it is. I guess this time around I'm just more aware of what God is asking of me. To let go and trust Him. Anyway...

It was the coolest baptism I've ever been to, too! Not only did I get to watch my oldest son publicly affirm that he loves and follows Jesus; but I got to watch his dad stand next to him, speak words of encouragement to him, and then baptize him! One of the best moments EVER!
On top of it all my parents and my brother and his family were there to share this with us; as well as are best friends and our favorite neighbor! God has really assembled an amazing group of people - family - that surround us here in Omaha.

I can't wait to get these pictures in our family summer book! There have been a lot of things that have happened this summer that I don't really want to remember; but this day is one that I will cherish, and will come back to many times through our book.

Psalm 31:3
For You are my rock and my fortress; For Your name's sake You will lead me and guide me.

While reading that Psalm this morning, I was struck by the statement in that verse. God doesn't do what He does in my life for my sake, but for His. I have the privilege of being the recipient of much because of what He does and allows; but it's really for His sake, His glory. And that others might know Him. I needed that this morning, because yesterday I was angry with Him, questioning Him. I nailed the whole "Why me" mentality...and a wide range of other emotions.

Backing up a little...

Judah had been a little "off" for a few days. Nothing I was concerned about until he got a low grade fever on Thursday. We were in the ER Thursday evening, at the pediatrician's Friday morning, and finally admitted Saturday morning. Judah has some kind of fungal infection. When he was admitted they were talking 5-7 days and an anti-fungal medication that would make him really sick. Instead, Infectious Disease decided to use the drug with a lesser potency and are talking a couple days. Judah is doing well, even having improved since yesterday. He was never very sick - praise Jesus - but he's definitely doing better since starting the IV medication. Knowing his body's "aversion" to IVs, the ID doctor has a plan for when he loses this IV, and he'll be able to start oral drugs. So, what I thought was going to be a long, horrible week is turning out
to be...not. I'm so beyond thankful. I really struggled yesterday. Discouragement, anger, frustration, defeat, sadness, all vying for the upper hand in my heart that was desperately trying to hear and feel Truth.

This stay has been different. There were no open rooms on the 4th floor. I seriously almost lost it on the elevator when the admit person hit "5". Seriously. In that moment I did not think I could emotionally handle that change. Somehow God held me together and I managed to get off on 5th floor in one dry-eyed piece. They didn't have a room ready for us yet, so we had to wait in the treatment room...for 5 hours. So not my idea of a good time. This time the IV only took 2 pokes. They called in a couple PICU nurses for the 2nd one. Judah knows. He's on edge when
we're here, and anytime they make him lie down now he freaks out. He's angry and scared and hurting, and it's extremely difficult to watch. I feel so helpless to comfort him in those times. He's jolly and flirty and darling in between times, but he knows...

I would appreciate prayer for a few specific things:

- That Judah will be well and discharged by Tuesday.
- That he will remain healthy between now and October 10, the day of his next scheduled super-surgery.
-That he will recover completely and quickly from that surgery, and that he can stay far away from here for a long, long, time!

As an aside...

I have to mention that this post is the very first one on my new computer!!! We have been having some problems with our other computer, and Jared finally decided that the best thing was to buy a brand new one. He surprised me with it this morning! It's a sleek little laptop and I love it! And I love that computers are not nearly as expensive as they were the last time we bought a brand new one in December of '01. I'm so, so, so thankful!!! I can't wait to surprise Grandma & Grandpa with a call on Skype later today now that we have a webcam...assuming they don't see this first. Well, just in case... SURPRISE!!!

We got orders to leave the floor and went outside right away this morning.

Dr. D. just left the room. He's been by to see Judah twice this weekend. I appreciate and respect and admire that doctor more and more. Our professional relationship has gotten better and better, but we've also added a personal side to it that continues to develop. It's built on mutual respect and admiration, but also some humor and lightheartedness. I told him that sometimes being in the hospital with Judah is almost vacation-esque because of all the quiet and the time I have to think and read and write. On his way out he told me when I get published to let him know. That made me laugh. I told him he might not want to know because he's in it! That made him laugh, and he said he's sure it's all good things. Ha! I assured him that it is all good:)

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.