Tuesday, August 31, 2010

The diglut. did not go well, and Judah is still aspirating thin & nectar consistency liquids. Bad news. I was wrong, and Judah can still move to a sippy (of sorts) and start taking steps forward. Good news. Judah did great with baby food during the diglut. - a first - and, overall, I'm encouraged. Also good news.

That's the long and short of it. I didn't realize that I was limiting Judah. I thought that he was stuck on a bottle as long as he was aspirating. I'm so glad I was wrong about that! This is where my love for therapist's innovation and creativity come in. Tomorrow he's going to start learning how to drink through a straw! He'll use a honey bear. That's right, the cute little honey bear that sits on your grocer's shelf. Put a little plastic straw in the tip, and you have a great tool to teach a kid like Judah how to drink! No more bottles! We have steps in place now to move forward. It's going to be a long, slow process, and will take more patience than I have today, but we'll get there. And we might even meet our 12 mo. goal!

So, like I said, it didn't go well, and I was disappointed; but Judah's speech therapist at Children's is great and she encouraged me. She's confident that getting him past his "oral aversion" and just giving him time is what he needs to move past the aspiration. We will get there...eventually.

Diglutition & Feeding Evaluation

Fancy words for a test that will determine if Judah is still aspirating, and an evaluation to see how he's doing in the eating department. I'm really nervous about this. I don't know how Judah will do this morning (the diglut. is at 10:00), and so much is riding on this. Most of the oral goals we set for Judah in his IFSP review are based on the assumption that the palate repair would fix the aspiration problem. If he's no longer aspirating then we can go back to normal liquids. Thickening his liquids is what landed us in the NG situation, which turned into a G Button, in the first place. Normal liquids is HUGE! Then we can start moving forward in weaning him off the button, learning to use a sippy cup, getting off formula, and progressing towards our goal of being on a normal diet! This is a 12 mo. goal, but we can't move anywhere if he's still aspirating! Help, Lord!

Thanks for praying. I'll keep you posted...

Monday, August 30, 2010

We made it!

It's been 3 weeks since Judah's palate repair, and I can't believe how quickly the time flew! We've been really busy, which helped, and we had a weird week last week with Ezra being sick and then Eli missing 4 days of school because of the same virus. But all of a sudden we're here, and I took Judah in for his 3 week follow-up! The repair looks good. There's a small gap in the palate, not all that uncommon, which will probably close on its own. I've watched the gap over the last couple of weeks, wondering about it, and it has gotten smaller. It's more like a crack now. The PA said sometimes they have to do "revision surgery", but right away I said I wasn't ready to go down that road...so that was the end of that. Overall the news was good and disappointing. We got to take his restraints off right away, and Judah is lovin' that! He's been going nuts with his hands in his mouth & slobbering on anything else he can get up there. Apparently though, it's customary to keep the "no nippling" rule in place for 6 weeks. Well, that was news to me. So, based on my own research, I have decided to toss that "custom" out the window. CL/CP repair & recovery is pretty controversial, but there's enough information out there that I'm totally confident with my decision to give Judah his pacifier back. And start bottle feeding (or try) again. Funny thing, though... I wrapped up Judah's brand new pacifier in a box, got the video camera, and was all ready to capture this sweet reunion on tape. The child doesn't know what to do with the thing. He hasn't had it - or anything else for that matter - in his mouth for 3 weeks, and he's at a total loss! He plays with it and explores it with his hands, but he doesn't have a clue about what to do with it in his mouth. Tonight he fussed & cried himself to sleep in the sling, fighting the pacifier. Gr.

He's got his swallow study tomorrow morning. I'm even more nervous now. What is he going to do with a bottle?! So much hinges on this study. I'll be sooo disappointed if it goes badly. He's got a feeding eval. right after that. Ugh. I just have no idea what tomorrow morning will look like for him. For months I've begged God that Judah will show no signs of aspirating when we finally get to do the swallow study...but he has to take a bottle...and swallow something...and he won't even take the pacifier.

Oh my sweet boy... Don't you know that if you won't take anything in your mouth, we'll never get rid of that button?

OK, so it's only the 1st day... It's really not what I expected, though, and I'm sad about that.

The Man I Married

Jared is extraordinary. I have always believed him to be out of my league. Seriously. He loves me better, more thoroughly, more creatively, more selflessly than I have ever loved him. Not to mention how hot he is! Red hair! I've always kinda wondered how I actually landed him. I mean, really, how did I get lucky enough to snag Jared Stewart?!

He has written me a letter every week (with only a couple misses) for the last several months. I can't remember when it started, because I didn't know he was going to keep it up. But...I'm thinking it's been at least 4 months. Quite possibly longer. Letters about how much he loves me. What he loves about me. Why he loves me. What he looks forward to in our future. Memories from when we were growing up or first starting out. I'm not kidding. He really does this.

He has made breakfast every Saturday morning - a good breakfast - since we've been married. That's 10 years. And he does all the clean up!

He leaves notes for himself around his office desk asking, "What the heck have you done for your wife today?" & something about how can he serve his family today? Really.

The man woos me. He does little things for me. A lot. He buys me little gifts. He surprises me with my favorite cold coffee drink. He does stuff around the house...without being asked.

The man is...extraordinary.

So, last Friday we were supposed to have our weekly "weekend date in". It was Jared's turn. He got a movie I wanted to see and bought the stuff to make my new favorite dessert. And then, for some reason unbeknownst to me, my stomach decided to be stupid. I had discomfort bad enough to keep me curled up in a ball for the whole movie. Blah. Poor Jared. And of course he was so nice and wonderful about the whole thing. On Saturday morning I got out of bed & went to the kitchen to make the coffee...which Jared had gotten all ready for me the night before. All I had to do was pour the water from the coffee pot into the maker & turn it on. Nice. I opened the cupboard to get out a mug & met a post-it note. Throughout the morning I found several more.

In the coffee cupboard: ...thanks for not making me face my coffee addiction alone... :)
On my phone: You're my favorite person to talk to. Ever.
On the bathroom window: You're so cute when you smile in the morning:)
[I'm sooo not, but that's love for ya.]
On the bathroom mirror: You're my best friend. I like you.
In my glasses case: I can't believe how blessed I am to be married to you!
On my blow dryer: "You are so beautiful......to me..." [A song on "our" cd]
In my underwear drawer: [Some things are better left unsaid;)]
On my jewelry box: Here's what I like about you: you.
In my jewelry box: You take good care of me. Thanks.

So, move over Casanova! You've got nothin' on my redhead!

Tuesday, August 24, 2010

6 days & counting...

That's right, I am literally counting the days until we can burn these restraints! Actually, his OT & PT have requested that I NOT burn them so that they can use them on Judah's legs to "encourage" (and when I say "encourage" I mean "force") him to bear weight on his legs. Anyway, we're almost there! And, really, Judah is handling them way better than I am;)

We saw the pediatric surgeon this morning (boy do I like him) and when he looked at Judah's G Button site he said, "Wow, that looks fantastic!". Apparently, Judah's site is healing exceptionally well, & looks great, which is not all that common. Well Praise the Lord! It seems like Judah always has something going on, some complication - something - so any news like that is a big encouragement to me:) The rest of the appointment went well, and overall we got a good report.

I'm also excited, because over the weekend Judah turned that final corner to being back to his normal, unreasonably happy, giggly self! It has been so much fun to see him laughing so easily again, and I love hearing his new sound:)

Yesterday I had the privilege of participating in the regional planning meeting for Judah's IFSP (therapy) program. His teacher asked me to be a parent representative on the regional planning team. We meet just about every month, and I get reimbursed for attending - nice! There are representatives from the school district, Head Start, Health & Human services, the pre-school IEP program, and even our children's librarian. I was a little intimidated and felt totally out of my league. Not to mention the fact that I felt beyond comfortable in this new situation where I knew only 2 people. It went really well, though. The main purpose of this team, in the broadest sense, is to improve and refine their services to help the "special" child & his family, and to help as many as possible. It's a very good thing. They ask for parents to be on the team so that they have real people going through this stuff to offer their perspective and "expertise". They asked me to be on the team because of my "experience with almost every medical field", and the positive relationships I've built with so many different doctors. Not experience or relationships I asked for, but definitely both that God is using for His good. This is another opportunity to rub shoulders with others who don't know Him, but at the same time be a part of affecting change for differently-abled kids & their families. How cool is that?

And here's something new and totally unexpected. The Lord has dropped an opportunity in my lap to be a part of a new business venture of sorts. My good friend and I are going to be making slings for some doulas in town. They'll be buying them from us, and selling them to their clients; and we'll also be trying to sell them to others. It's a great connection, and I really believe that this is from God's hand. I have no idea what this will turn into, but I'm committed to doing whatever I can to glorify God through this, and allow Him to use me and this opportunity for His glory. I'll put more details down later...after our first official "business meeting" on Thursday:) We've gotta come up with a name & website, and figure out some other details as well. I'm excited!

One more thing. I've been seeing more and more lately (I think because, for some reason, God is allowing me to see) how I've grown in the last year...and even just in the last several months. I feel like I've grown by leaps and bounds more recently, though I'm not sure exactly why. It seems like more often than not we (or maybe just I) don't have the privilege of seeing growth, but just keep striving for results that we only wish we could see. Anyway, I just wanted to confess publicly that the changes I see in myself are not my doing, and are in no way because of anything that I have brought about. Any good that I can see in myself is only because of Christ in me, and HIS faithfulness to work in and refine me. I have noticed a shift in my attitude towards certain things, a stronger desire for Him to work in me, an urgency to see His grace & goodness & glory made known to others, and a desire for a deeper love and respect for my husband. There's no way in heck-fire that a single iota of any of these things could come from myself. I recognize that, God, and I place the glory and honor and thanks for these things at Your feet. Thank You for not giving up on me. For not abandoning me. For being faithful to make me more like Your Son. For extending grace and gentle discipline to me as I fail. And then for extending that grace to me so I can get back up and try again. God, You are so amazing! Thank You for giving me a deeper desire for YOU! And thank You for the gift of my family - Jared, Elijah, Ezra, Lydia, Judah - who are a constant reminder to me of Your love and goodness.

Wow, I feel like I just had a little bit of church there! Sweet.

Friday, August 20, 2010

We've made it through another week. Not quite another 7 days, but a very busy 5 days that included a back-to-school picnic; 3 doctor appointments; an IFSP review; a 1st, 2nd, & 3rd day of school; a student leader dinner; and a visit from Grandma & Grandpa...who don't leave until Monday, thank the Lord! This week has been harder than I thought it would. Judah's recovery has been more complicated than I expected. Pain medication that causes constipation, air from the laproscopic surgery, low muscle tone, & being nonweight-bearing lead to an uncomfortable, unhappy baby...and ultimately to an unpleasant encounter with Mommy's finger in a very sensitive area. Enough said.

On a happier note... Judah had his first belly laugh post op! He sounds so different to me, but what a beautiful sound! So glad he saved those first laughs for me:)



video

Judah also loves this new toy, and I'm so proud of how well he's doing with it! It's been awhile since I posted any videos at all, so I really thought it was absolutely necessary to include this one, too!



video

One more thing. For months I've been working on getting Judah to lift his arms up to me to be picked up. Tonight when he was in his chair I went to him and started the, "Do you want Mommy? Do you wanna come up?" routine. And he did it! He raised those little restrained arms up to me with the biggest grin on his face! Oh, I'm so happy:)

Monday, August 16, 2010

One week down...

...two more to go. This week has gone by quickly. I'm counting on the fact that the next 2 will go by just as quickly, and all of a sudden we'll be removing those restraints for good! Every day I see improvement in Judah, and I thank Jesus! This morning was the first one post-op that he woke up smiling, and he hasn't had any Tylenol today! Thank you so much to each of you who has prayed specifically for his pain. He's a different baby from the one I cried over and with last Monday. He still occasionally makes his little sad "owie" face, and every once in awhile shakes his head, but he is sooo much better! I think what bothers him the most now is when he tries to clear his throat, or he gets a bunch of spit in the back of his mouth that he has to swallow. He fusses or cries out a little bit when either of those 2 things happens, and I'm guessing that it's because the roof of his mouth is still exposed and so tender. Still, considering that he has uncovered bone in his mouth, his healing is pretty remarkable. Praise the Lord!

I've also been saying thanks to the Lord over the last few days, because Judah isn't refluxing. He's vomited a few times, and I had to slow him back down again, because his tummy didn't like it when I tried to shorten his feeding time; however, he's not spitting up or anything. I was so sure that he'd have terrible reflux, especially since the surgeon said reflux was so common & a probability for him. I was anxious about it. But all I can do is shake my head and praise the Lord for another answered prayer! Seriously, this is huuuge to me!

Every time a child goes under anesthesia at Children's they come out of Recovery with one of these sweet, soft, cuddly bears. Judah has his own little colony. He has one from surgery last December, and one for every month since May. Sheesh. I suppose someday in the not too distant future we'll pass them on, but I'm just not quite ready to let any go yet.

Thursday, August 12, 2010

From the First Floor...

...of my house! I'm sitting here in the living room enjoying the sounds of my kids playing, breathing another sigh of relief that we're home! The kids have been so happy to have Judah and me home. Lydia held Judah's hand all the way home from the hospital, and the boys have been trying to see who can make Judah smile the most and laugh first. Daddy got the very first giggles, though, on our way out of the hospital last night!

The hated gauze pack finally came out around 6 P.M. I couldn't believe how loud Judah was when he cried once it was out! He sounds just a little different to me now that he has a palate. Thankfully we had a great nurse last night who did everything she could to get us outta there quickly, and we were on the road by 7!

Judah slept well all night, and didn't need any Tylenol until 4:30 this morning. He's been trying to roll around on the floor today, but those restraints really make it difficult. Boo. We took a walk to the library today and got ooohed and aaahed over by our favorite librarian, and Judah is now taking a nice, looong nap! He's had a pretty good day overall. He threw up his breakfast, so I think I need to take the feeds a little slower for a little longer. His lunch went really well. I already love the G button! What a difference it makes! I love seeing Judah's beautiful face just by itself, and I love that there's no tube hanging from him anywhere!

I got all of his follow-up appointments made this morning, so between those and getting ready for the boys to start school on Wednesday, the next couple weeks are going to be B-U-S-Y!

I'm so thankful for every day that we get through, because it's another day farther out from surgery, and one day closer to recovery...and working to meet our new feeding goals!

Wednesday, August 11, 2010

We're Going Home!!

I only have a minute to say "WE'RE GOING HOME!!!" The pack is GONE, the feeds went WELL, and we're packin' it up! Can I get a Hallelujah?!

More to come from the home front...

From the Fourth Floor VII

I'm getting a little tired of that title. I may have to change things up a bit regardless of where we are for my next post. Anyway...

Today has been a good day for Judah. Me too. As the day progresses he gets more active and playful. I've seen several smiles today, too! He still makes his sad "owie" face, but his pain has decreased & is under control, and he doesn't shake his head anymore! This morning we had another visit from our favorite endocrinologist! I can't say enough how blessed and thankful I feel that the dr. we see the most (besides the pediatrician) is one that I genuinely like, have developed such a good rapport with, and I respect & trust so much! Thank You again, Lord! We had a good conversation about a couple different issues this morning. He gave me a huuuge compliment when he asked for my input about Judah's stress dosing! Seriously. WOW. I was encouraged after he left and felt so blessed. Not too long after that a home health nurse delivered Judah's feeding bags and handed me an envelope that she had been asked to deliver. Inside was a voucher from a good friend for the cafeteria here. That may seem like small potatoes to some, but to me practical, thoughtful, heartfelt gifts like that are some of the best! Thank you again, Lindsey & Evie:) I enjoyed lunch thoroughly, especially my chocolate cake:) The rest of today has been pretty uneventful. Lots of waiting. Judah took a 2 1/2 hr. nap this afternoon, and then woke up and pooped like a champ. I know that's kinda gross, but I have learned to celebrate the little, albeit gross, things in life! I've had fun playing with him in my lap and taking him on a walk around the floor in a wagon. True to form, even in his sad, "owie" state, Judah has charmed and delighted the nurses around here, and he got lots of "hellos" and "aaaws" on our walk:) Judah also had his first feed at 12. It was only 50ml, but he handled that great, so we're on to the 100ml feed at 4. I'm praying that the dr. will let me take him home after that if he tolerates it. Because of my experience with Judah, he might let me take him home before his first full feed...but he might not. God will decide & I will trust. The biggest frustration of today is not hearing anything from the plastic surgeon. The nurse couldn't find him, so I finally called his office myself. A nurse got back to me just before 3 and let me know that he's in clinic and surgery in Norfolk today. His partner will be rounding for him after he gets out of surgery at Creighton. Ummm...that would've been nice information to have yesterday. Gr. I respectfully let the nurse know that I was frustrated and thanked her for letting me know. Hopefully the wait won't be much longer.

I thought some pics from today would be fun. That smile is his 3rd post-op:)

Judah's Sweet Ride...

...down to Radiology! I love this hospital and the staff here! They come in with this wagon, fluff it up with pillow, get him all comfy and covered up, and take him for a ride! He was trailing the IV pole. I couldn't get over how cute he looked bumping along down to Radiology. I think we'll take him for another ride this afternoon, now that he's off the monitor:) Napping now...
The ped. surgeon said as long as the x-ray is clear he can start a small feed later. Then a slightly bigger feed. We'll go from there. As long as he tolerates everything o.k. he said he'd feel comfortable letting us go home later this evening. Please, Lord!

Still waiting for Dr. B. to come along with his scissors and snip out this pack...

A "Grace Post" written by Paul Tripp

*One of my dearest friends sent this link to me this morning. This is, by far, the most poignant and powerful "explanation" of GRACE that I have ever had the privilege to read! This is one of those life-impacting, life-changing writings. Thanks so much for sharing this with me, Friend!!


Grace: Right Here, Right NowAugust 11, 2010 By: Paul Tripp Category: Commentary

Do you understand the majesty and practicality of the grace you have been given? If you don't, in subtle and not so subtle ways, you are looking to other things to get you through. You don't need to go out searching for hope and help, because they are already yours in the resources of grace that you have been given as God's child.

Grace is the most transformational word in the Bible. The entire content of the Bible is a narrative of God's grace, a story of undeserved redemption. By the transformational power of his grace, God unilaterally reaches his hands into the muck of this fallen world, through the presence of his Son, and radically transforms his children from what we are (sinners) into what we are becoming by his power (Christ-like). The famous Newton hymn uses the best word possible, maybe the only word big enough, for that grace—amazing.

So grace is a story and grace is a gift. It is God's character and it is your only hope. Grace is a transforming tool and a state of relationship. Grace is a beautiful theology and a wonderful invitation. Grace is a life-long experience and a life-changing calling. Grace will turn your life upside down while giving you a rest you have never known. Grace will require you to face your unworthiness without ever making you feel unloved.

Grace will make you finally acknowledge that you cannot earn God's favor, and it will once and for all remove your fear of not measuring up to his standards. Grace will humble you with the fact that you are much less than you thought you were, even as it assures you that you can be far more than you had ever imagined. You can be sure that grace will put you in your place without ever putting you down.

Grace will enable you to face shocking truths about yourself that you have hesitated to consider, while freeing you from being self-consciously introspective. Grace will confront you with profound weaknesses, and at the same time bless you with new-found strength. Grace will tell you again and again what you aren't, while welcoming you again and again to what you can now be. Grace will make you as uncomfortable as you have ever been, while offering you a more lasting comfort than you have never before known .

Grace will work to drive you to the end of yourself, while it invites you to fresh starts and new beginnings. Grace will dash your ill-founded hopes, but never walk away and leave you hopeless. Grace will decimate your little kingdom of one as it introduces you to a much, much better King. Grace will expose to you the extent of your blindness as it gives you eyes to see what you so desperately need to see. Grace will make you sadder than you have ever been, while it gives you greater cause for celebration than you have ever known.

Grace enters your life in a moment and will occupy you for eternity. You simply cannot live a productive life in this broken-down world unless you have a practical grasp of the grace you have been given.

Are you living out of this amazing grace? Does it shape the way you respond to your personal struggles, your relationships, and your work? Does your trust in this grace form how you live with your husband or wife? Does it propel the way you parent your children? Does it give you comfort when friends have disappointed you? Does it give you rest when life is unpredictable and hard? Does it make you bold and give you courage in places where you would have once been timid? Does it make the idols that tempt you less attractive and less powerful? Do you wake up and say, "I don't know what I will face today, but this I do know: I have been given amazing grace to face it right here, right now."

May God help you to understand and rest in the grace that you have been given!

From the Fourth Floor VI

Shower. Coffee. Muffin. Lamentations 3:22-24.

"The LORD'S lovingkindnesses indeed never cease, For His compassions never fail. They are new every morning; Great is Your faithfulness. "The LORD is my portion," says my soul, "Therefore I have hope in Him."

I know this verse gets used a lot, but seriously, isn't it obvious why? This short passage is overflowing with life-giving promises, hope, comfort, strength! I looove this passage! And while I don't necessarily have a specific list of all these "new mercies" or "compassions" as the NAS says for this morning, I do have a tangible sense of God's grace being extended to me this morning. I am encouraged this morning and feel refreshed. I have a renewed confidence in God's goodness and love towards us, even if that means that Judah will need to stay an extra day. That's not to say that I won't be disappointed if that happens, but I do feel better equipped to handle that situation today should it arise.

I had 2 pick-me-ups last night just when I needed them. They're totally not in the same league as each other, but they both did my heart good. I was able to get my hands on some chocolate milk - anybody else find chocolate milk to be completely therapeutic?? - and I got a little smile out of Judah last night! Just one, but what a beautiful little smile it was! Judah had a great night, sleeping soundly until just after 5 this morning. I crawled into bed with him at that point, and we both slept until almost 7. Huge answer to prayer! This morning Judah is going down for an abdominal x-ray just to be thorough. His blood work came back normal. He's also getting that awful gauze pack off sometime this morning! Get this, the care partner (like a nursing assistant) just came in to take him off the monitors - yay - and he smiled at her:) So, we've got a good start to the day!

Please pray for my other sweet kiddos today. They're missing Mommy & Judah. They get to play with Miss Mary & her boys at our house this morning while Daddy goes to the office for awhile, so I'm hoping they have a good time and are good! Thanks so much, Mary! You're friendship is such a blessing to us:)

Tuesday, August 10, 2010

From the Fourth Floor V - Gr

The pediatric surgeon came by late this afternoon to check on Judah again. Because he looked good, he ordered a 75ml feed over an hour at 4, and then a 150ml feed over an hour at 8. If all went well then Judah could eat normally tomorrow and we could go home. At 6:20 Judah threw up. Not only is that bad GI news, but I keep thinking about how he has that icky junk all soaked up in his gauze pack. Ew. My poor baby. I don't understand why he tolerated 2 5 oz. feeds last night just fine, but couldn't handle 2 1/2 oz. this afternoon. The surgeon that's on call tonight will stop by in a bit. In the meantime, the resident spoke with him over the phone and, for now, they're holding off on any more feeds until they get a white count. Just to make sure there's not something else going on. The resident speculates that Judah's intestines just aren't quite ready to move food yet. Still, why the 2 feeds last night? Hmmm... Unless those 2 feeds just filled up his intestines and their still trying to move that food through. That's my specualtion. So, I'm back to being a little discouraged. He's had such a good day today compared to yesterday. I miss my family. I don't like eating alone, and I don't like spending money on cafeteria food. And the vending machines don't take $5's. How lame is that? Alright, that's just my bad attitude showing now:/ I want to get Judah home, but am having to accept the fact that that might not be God's plan for Judah and the rest of our family. Well, like I said about today, tomorrow is a new day, and God's faithfulness awaits me there as well as His mercy. And since today's not over yet, I still have grace to finish this one.

I did get a nap in with Judah today. While these over-sized cribs might be adequately comfortable for babies and small children, they were not designed for Mama's and their child-bearing hips! I was tired enough for said hips not to notice until I woke up;)

From the Fourth Floor IV

Well, just in case somebody out there was sitting on the edge of their seat waiting for an update on our champ, here it is;)

I am so encouraged this afternoon! Judah has turned a corner and made some definite progress! He's still staying comfortable on the Tylenol with codeine alone. No more fever. No smiles yet, but he's started rolling back and forth just a little bit in his bed (I can't imagine how old it gets for him to be on his back!) and reaching for the fishy mobile that's on the side of his crib. Music has been a huge part of helping him relax and stay distracted. He woke up when Daddy brought lunch (thank you, thank you Larissa!!!) and reached out for Daddy's beard:) He's sleeping peacefully again. Oh ya, and he had a poopy diaper! Wahoo!! (It really is the little things folks.) I'm sitting beside him in his crib again, enjoying the quiet and the sound of his raspy little breathing. What a treasure he is. The ped. surgeon will be by later this afternoon to take a look at his tummy again. My hope is that he will see enough improvement to order Judah's feeds again (he hasn't eaten since 8 last night) and give me good news about tomorrow.

From the Fourth Floor III

Shower. Coffee. Muffin. I am a new woman. It's amazing to me how therapeutic these small things can be...makes me thankful.

More thanks from us this morning:

*Judah had a good night last night. We both got some good stretches of sleep, and he was very comfortable for most of the night.

*His fever was gone all night long, and he was able to go the entire night without any morphine.

*The pediatric surgeon came by at 11:30 last night to check on him and made a couple changes in his g button care that allowed Judah to be more comfortable.

*For a thoughtful, sensitive husband who not only gave me the change from our change cup so I could get coffee & a muffin, but also sent along a little pick-me-up with my best friend last night!

*We're on the East side of Children's & the sun is shining brightly into our room:)

*God reminded me last night that His faithfulness is great, beyond my understanding, and His mercies are new every morning. I was able to go to sleep with that promise in the forefront of my mind for this morning.


Prayers from us:

*Pain management and decreased pain for Judah.

*Judah's stomach is still distended and has too much air in it. Today I'm going to pray out the poop! His feeds have had to be delayed because of the gas in his belly, and that delay could potentially cause his home-going to be delayed.

*Rest for both of us today; but I'm really more concerned about Judah's rest. I want so badly for him to be comfortable and peaceful!

*Judah's gauze pack won't come out until sometime tomorrow morning. So, prayer for comfort in that area, and that he won't have such a hard time with it today, like he did yesterday. And I have a pretty bad attitude about it. I'm frustrated and disappointed. I need to remember that God is ultimately caring for Judah, and that gauze pack is what is best for him right now. I'm mad at him, but I do still really like our plastic surgeon.

*For Jared & the kids while they're at home and we're apart. I love talking to them when they're on their own! It's so fun to hear about what the kids are doing, what Daddy fixed for lunch or supper, what they played during the day, and how Lydia got her hair done! I miss them, though.

This stay is not exactly going according to plan. I'm not sure where I got the idea that it would. I mean, we're talking about Judah here - wonderfully complicated little Judah. --OK, so right here I was going to say, "It's hard not to be discouraged or disappointed", but Dr. D., Judah's endocrinologist that I LOVE came in! What a relief and encouragement to see him! He's familiar and I trust him and I know him and I just like him. He came to check on Judah and make some recommendations for Judah's stress hormone medication. Very important stuff when you're sick & in pain and your body doesn't produce the stress mechanism you need to physically deal with it. Anyway, that was a gift - thank You, Lord. Then, as we were talking, Judah woke up. I went over to him and for the first time he lifted his little elbow-restrained arms up to me. He let me kiss his little hand. I'm sitting on his bed next to him while he lies awake, looking around and up at me. Another gift. This experience, these circumstances, are difficult; but I have just been reminded again that God is intimately involved in the details. He loves us so thoroughly and delights in us, hand-delivering these little "gifts" along the way. He is the One that makes this journey possible and passable. And when we feel like we can't take another step, He picks us up and carries us. He's so personal and so good.

To GOD be the Glory!

Monday, August 9, 2010

From the Fourth Floor II

I just spent the last 3 hours holding my precious boy! That was good medicine for both of us! It was amazing to see the change in him when the nurse placed him in my arms. He settled down immediately and started sleeping peacefully for the first time since recovery. A little while later he was cleared for morphine, so he is actually still sleeping well. I'm praying for a healing sleep. It was such a joy to hold him close for so long! I'm thanking Jesus every minute for this rest that Judah is finally getting! I've cried a lot today, but I feel relief now, and confidence that the worst is behind us. Judah's O2 was up and down, took a couple dips, but since his first feed he's stabilized and is looking good. He's also been running a fever that was 102.9 at it's highest, but that, too, has gone back down to a low grade fever. My prayer is that it will return to normal and stay there! He's such a sweet boy - it's hard to see him so helpless and uncomfortable. I keep looking to the Lord, trusting Him for His good and His care; and He has been faithful to meet me in my hurt for Judah and comfort me. I know He is continually ministering to Judah as well. Praying that tonight will be restful and sleep-filled...

Judah just got his temp checked and he's down to 99!

From the Fourth Floor

I was not prepared for this part. This has been the hardest 2 hours I've spent with Judah since he's been home from the NICU. We waited for him outside of recovery right by the elevators so that we could all come up to his room together. The instant they opened the doors and we saw his bed, I saw his little feet kicking under the blanket. My heart fluttered and I was so happy to know that he was awake and ok. Then the nurse said he was mad. They wheeled him to us and he looked awful. His face was all puffy, dried blood on his lips. And he was crying and agitated. Only, because of that gauze pack in his mouth (which I believe is of the devil) he can't really cry. And he had been intubated, so his throat is scratchy. He cries with this sad, pathetic squeaky moan. My heart broke in that instant that I saw him and processed all of this. Since then he's spent most of the last 2 hours crying. He keeps kicking his legs, trying to move his arms in the elbow restraints, and shaking his head back and forth. It's just sad and so painful to watch him suffer. As soon as they transferred him to his bed I crawled in and laid down with him. And as soon as the nurses left I finally gave way to my tears. I lay there next to him, holding him, crying for him. I'm getting emotional again. I don't remember ever seeing him this agitated. His nurse talked to the plastic surgeon about giving him morphine for pain, but we have to wait a little longer for the anesthesia to wear off some more. In recovery his sats fell at one point and they were concerned about his airway and breathing. (Plus this gauze pack from Hades complicates things.) The narcotic could cause him to have problems breathing again until the anesthesia is mostly or completely worn off. So we wait. In the meantime they gave him Tylenol with codeine through his nifty new tube, and that seems to have helped somewhat. The funny thing is, the biggest help has been this silly little musical toy that I brought from home. It only plays 3 songs, but it's the one that Lydia has held right in front of his face numerous times, and we've used it in therapy a lot. So, I think that piece of familiarity is the most comforting thing to him right now. That and Mommy caressing his cheek and his chin; kissing him and snuggling. Every few minutes he's restless again, but the music helps. I'm hoping that morphine will be a part of the picture later so that he can get some solid rest. His nurse also said most kids are really happy & do much better once the gauze is gone. My prayer is that the dr. will cut it out (it's stitched in there) somewhere around the 24 hr. mark in that 24-48 hr. time frame that he gave us. *sigh* This is hard. Jared just left to go home. The boys get to go on the annual "back-to-school shopping date" with their Mrs. Hagen this afternoon, and we didn't want to make them wait any longer...since they've been talking about it all summer! But now I'm here with Judah alone. It's a good time to get out my little pink Bible and spend some time with my Rescuer, Judah's Creator. Tonight reinforcements come in the form of my best friend and Chinese take-out:) I know this will be over soon. In a day things will look different and Judah will most likely be improving already. And the 3 weeks will go by quickly - please, Lord! - but this part right now just sucks. This is when I would like to take out my magic wand and trade places with my baby. I would gladly bear any burden, any pain, any suffering in my son's place. Oh wow, what a picture of Christ's love for me. His heart, His passion for me. For Judah. I'm overwhelmed at this moment by the reality of what He did for me at the Cross, and the burden He bears for me when I come to Him with my pain. He will carry us through. He sees Judah right now, and His hand is on him. He holds my tears for my son and He grieves with me. He is compassionate. He is my Comforter. He is Judah's Comforter, Healer. Yes, we'll get through this. One grace-filled moment at a time.

In the Waiting Room...VI - Surprise!

Ok, so ya know how there are good surprises and not so good surprises...? And, as a parent, the not so good surprises are the ones that are...what's the word...unwelcome, unnerving, icky? Well, we just had a great conversation with the pediatric surgeon who informed us that Judah has 2 hernias. Huh. Something we should have known from our urologist. Actually, deep down I think I did know that somewhere, but with every other issue Judah faces I really think I missed that somewhere along the line. Woops. The hernias are because of [this gets personal] his undescended testicles. It's somewhat complicated because of Judah's hormone issues, but long story short, he'll need another surgery to correct the testicle/hernia situation. We'll be seeing our urologist in November, so now we're ready with some very specific questions! Not excited about another surgery...but thankful that it's a minor, relatively common procedure. And so thankful for the wonderful surgeons and specialists that God has gifted us with! (Still love the urologist, love the new pediatric surgeon!)

By the way, the surgeon also gave us some pretty cool pictures of Judah's stomach and the hernias:) Modern technology meets modern medicine makes Mom smile!

In the Waiting Room...III

Judah is in recovery!!! Everything went beautifully! The nurse liaison found out for us that they didn't actually have to remove the breathing tube, just reposition it. *Sigh of relief* Thank You, Jesus. He's in recovery now, and we'll be able to see him within the hour! It's hard to explain, but every time they take him for a procedure, anesthesia, recovery, when I get to be reunited with him it's almost like seeing him for the first time all over again! I just can't wait to see that little miracle boy!

In the Waiting Room...II

The plastic surgeon came and talked to us several minutes ago, letting us know that the palate repair is finished. He said everything went really well! There was a slight "hiccup" - they had to insert a new breathing tube right at the end of the repair because there was a leak in the cuff...whatever that is. The dr. was nervous about that because of having to put that tube down with the brand new repair. Um ya. I told Jared that's why we have so many people praying right now! Dr. said that he should be able to go home on Wednesday - Praise the Lord! The next 48 hrs. Judah will have a gauze pack attached to the new roof of his mouth, icky, but then we can move on with the rest of his recovery when that's removed. Can't wait, can't wait, can't wait to see my boy! Just one more procedure and then we're done!!

The Big Day!

It just occurred to me that I still haven't blogged about Judah's 1st birthday party - for shame! I'm actually embarrassed by my over sight. Well, moving on...
Judah's birthday was on Friday, June 4th, so we decided to celebrate all weekend! We felt so loved when my brother, sister-in-law, and their 4 kids came all the way here to celebrate with us. Grandma & Grandpa Bluhm were here, too. We had some great family time throughout the weekend, and made lasting memories. On Friday we had a little family party with presents and cookies. It was so fun to see Judah in Grandpa's lap, surrounded by siblings & cousins who were all too eager to help him open his gifts:) It warmed my heart to see Eli, Ezra, & Lydia give Judah the gifts that they had specifically picked out for him.
The next morning we were all up and raring to go! We had rented a bounce house for the party, so one of my favorite parts of the morning was watching my kids, nieces, & nephew as they stood on the edge of the sidewalk watching and waiting as the guys set up the house. They were beyond excited! I'm pretty sure the 6 older kids were in that house for the majority of the 4 hours that we had it! A few of Jared's students came over before the open house to help set up. I put them in charge of balloons:) They made a huge "J" on our ceiling, and it made my day! Our best friends were there early with food and moral support, Grandma & Grandpa picked up the cakes, and then all of a sudden we had our first guests! It's hard to put into words what that day meant to us. We had somewhere between 50-75 people celebrate with us! Family, friends, neighbors, Eli's principal (who actually came on Friday b/c she wasn't available Saturday), all the YFC staff, YFC board members, parents of students, a NICU nurse, & our Dr. B. who took care of us when I was pregnant with Judah. (WOW, I can't believe you actually came!!! ) I'm still overwhelmed by the love and support that was demonstrated to us that day! I'm still surprised that so many people took the time to come! We can't thank everyone enough, nor can we adequately express our appreciation for the gifts that Judah received, as well as all the donations we received for the AAA crisis pregnancy center. [The day I got to take all 4 kids down there to drop off those donations was a very special, meaningful day for me; a privilege.] Anyway, we just had SO MUCH FUN! It was such a gift to be able to talk to so many people; to see so many who genuinely love Judah hold him and love on him! Of course he was the perfect little birthday boy. Smiling, sitting contentedly on any one's lap, even taking a little snooze in the arms of a student's little sister mid-way through the party:) Too precious! We had fun watching him as he eyed his little lion cake. Then when he tentatively reached out and stuck his first finger in it...then his whole hand...to the mouth...in the ears and hair! I'm so thankful for the opportunity we had to celebrate this way. Every part of it I attribute to God's goodness; His faithfulness in bringing us to that day; His love demonstrated to us through so many people; His provision, grace, and mercy. Wow, He really does LOVE us. He LOVES Judah.

So, Happy Birthday Darling, Darling Boy!!! I love you so much! I am humbled that God chose me to be your mom. I am honored and privileged to be that woman in your life. I am so rich because I have Daddy, Elijah, Ezra, Lydia, & YOU! And just so you know, in case you ever doubt, I'll tell you again: you are a perfect reflection of the goodness of God, lovingly made in His image, beautifully designed to bring Him glory, precious in His sight, covered with His fingerprints, a gift in the truest sense of the word. Special. Just like your older brothers and sister. No different from anyone in any way that matters. Gifted. I can't wait to see you continue to grow, learn, explore, love, live every day that God has ordained for you.

In the Waiting Room...

Last time we were in this waiting room I was struggling to let go. I was anxious because it was Judah's first surgery, and I had just had to say good-bye to that face I fell in love with. I was filled with conflicting emotions. This time sitting in the waiting room... I'm still nervous about what the next few weeks will look like for Judah, but I'm so thankful that we're finally taking this step! And, obviously, Judah wasn't the least bit concerned this morning! That sweet boy cuddled with us, charmed the various medical staff that came and saw him, and then was ready for a nice morning nap. Thank You, Lord!

The ENT just spoke with us and his part went well. An answer to prayer: he was able to place a different kind of tube in Judah's ears that will last 12-18 months! Judah's ears are so tiny, tiny that we weren't sure that would happen. Thanks again, Lord!

Sunday, August 8, 2010

I decided I need to momentarily come out of my melancholy funk so that I can fully appreciate what's going to be happening tomorrow. In spite of the anxiety I feel, I am so excited that this is the last day that I have to look at my darling boy's beautiful face with that stupid tube up his nose! Tomorrow is another turning point, another mile marker on this journey. We start over with all things oral and a new set of circumstances. A G Tube and a whole palate. After he goes through 3 weeks of recovery our prayer is that Judah will no longer aspirate, and we can start giving him thin liquids in a bottle again. And, oh joy, move to a sippy cup!! Dare I say...solid food even? Tomorrow is a new beginning for Judah in this area. We're extremely hopeful and optimistic! And I can't say how thrilled I am to get my little boy's face back:) [And just for the record, I'm equally thrilled that I will no longer have to put that tube up his nose and down his throat.]

On my mind...

My mind has been weighed down by so many things lately. I keep trying to just leave it with the Lord. Apply all the truths that He keeps bringing to mind. Remind myself of Who God is, how He loves, protects, provides, rescues. There is financial strain, and big question marks that we can't seem to find our way through. We are helpless and totally dependent on His rescue...but I don't know if His rescue will be pleasant or painful. Judah is still vomiting somewhat regularly. No reason. No apparent cause. It's been better since we started the new drug, but now that he's getting the g button I'm anxious about the likelihood that the reflux will worsen. Surgery is tomorrow. 7 A.M. I'm eager to get this behind us and move forward. I'm so happy that Judah will be able to progress. But I'm sad that the pain is coming for him, and that the recovery will be a difficult one. I'm sad that he has to experience this. I'm thankful that he'll never remember it. I miss my mom today. A lot. I just feel...heavy. For my birthday Jared filled an index card box full of index cards with notes and Bible verses written on them. This is what I read today:

Jeremiah 32:17
Ah Lord God! Behold, You have made the heavens and the earth by Your great power and by Your outstretched arm! Nothing is too difficult for You.