Wednesday, December 30, 2009

A Break

We're back in Wisconsin for the holidays, and while being "home" again usually doesn't offer much in the way of a break or vacation, it does provide a much needed break from doctor appointments! I did need to call in a couple meds over the weekend, but other than that I have been away from my phone and away from the many medical offices that have become way too familiar and routine! Thank the Lord for a reprieve!! A rest. A chance to pretend at least a little bit that Judah is just like any other 6 1/2 month old...in between the eye patch, scar treatment, therapy play... Well, whatever. We're here and the doctors aren't!

Now for some play time with those other kiddos of mine that keep me laughing...!

Friday, December 18, 2009

Thank You Jesus!!

I am beyond happy to report that the lab work for Adrenal Hypoplasia Alpha 17-Hydroxylase came back NORMAL!!! That's right; Judah does NOT have this rare adrenal disease!! Praise the Lord! I was anticipating that this test would come back positive for the disease, so I can't even begin to describe my relief! I don't want to spell anything out because of the sensitivity of some of the markers of this disease, but if he did have this disease his body would not be able to respond to testosterone. Enough said. The nurse is ordering Judah's first dose of testosterone today, and he'll get that injection early next week! Among the obvious side effects of this hormone replacement are also possible overall growth and weight gain. Oddly enough Judah's growth hormone levels were elevated, but will be re-tested at the beginning of January. Thankfully, growth hormone replacement has been put on hold, and we'll see how Judah responds to his first 2 rounds of testosterone (given 4 weeks apart).

Thank You, thank You, thank You, Lord!!! I was so grieved by the possibility that there could be 3 diseases in that 1 tiny little body. God, I know You would have sustained us and given us the grace and strength to handle this and everything it would have meant for Judah; but I am so thankful that in Your sovereignty You have allowed Judah to live without this sickness.

To God be the Gory!

Thursday, December 17, 2009

Finally a day at home. No place to be but Eli's school at 3:20 to pick him up. No appointments; not even a call to a doctor's office or Walgreen's for a refill. A day like this doesn't happen often enough. The last 2 weeks have been especially hard. We've seen the insides of too many specialists' offices and have gotten to much new information, "possibilities", and "what ifs". It's been hard to deal with. The recap goes something like this:

The plastic surgeon's PA - the only one to give me good news...mostly. Judah's healing well from the surgery, and all his stitches have been removed. We just have to go back one more time to double check the incision on his left hand, because it's healing more slowly.

The endocrinologist - I don't even want to revisit this one. Adrenal Hypoplasia a possibility. Growth hormone injections a big possibility. Testosterone injections a possibility. A dysfunctional hypothalamus. Those are the "highlights".

The lab - Judah just happens to be as tough of a stick for draws as possible. The lab techs are really good, but only once has he had to be stuck just once. This time was no different. Check both arms, trying to find a vein for several minutes, stick one arm twice to try to get a draw, then stick his heel - twice - to get an obnoxious amount of blood for all the tests the endocrinologist needs to run.

Therapy - a definite highlight in the midst of all the doctor stuff. I love the 3 ladies that work with us. They oh and ah over Judah, making a big deal over the slightest bit of improvement! They encourage me in what I'm doing, and teach me new ways to help Judah. Just when I start feeling really discouraged about how far behind Judah is, these ladies come and by their attitudes and acceptance of Judah remind me that he's doing great for him, and that's all that matters. He's not any other baby. He's Judah, and he's doing just what he should be.

The pediatrician - 2 visits in 2 weeks. 11 lb. 2 oz., and 11 lb. 4 oz. nine days later. (I didn't mention to the nurse that he had a wet diaper.) Judah is bordering on "failure to thrive". That sounds so ridiculous to me because he's so happy and content. But he's not really growing. The current plan of action for the next month is to give him as much breast milk and solids as he'll take, and hopefully he'll gain a pound. If not, then the next step is to add a calorie booster of sorts to my milk. I'm praying that by that point he will have started growth hormone replacement therapy and will improve overall in weight and length. Even if we do have to add something to my milk, that's better than jumping right back to the NG tube. Not a possibility I'm a fan of...obviously.

The vision specialist - I forgot. I did get a bit of good news from him. And, actually, I like going to this doctor. He is gentle and kind and a gentleman. He shows a genuine interest in and concern for Judah beyond his vision problems. He's respectful to me and treats Judah with dignity. If I could, I would ask him to be my grandpa. (I miss having one.) Anyway, Judah continues to show some signs of improvement in the vertical movement of his eyes, and in his almost lazy eye. (It's not official that it is.) The patch is helping, so we'll keep up with that, 2 hours a day, for the next 6 weeks until we go back. The muscle weakness in that same eye is the same. The next course of treatment sometime in the not too distant future is an injection of Botox in the muscle to relax it, allowing his eye to freely and easily move to the center. Not sure how long that lasts, or how many injections there might be over time, but this treatment could help in preventing eye muscle surgery in the future.

Ok, so it that's not enough to process, I've been dealing with feelings of guilt lately, too. About almost everything. Not being a good friend to those around me. Not being adequate for Judah, i.e. not giving him the time in therapy that he needs, not being able to breastfeed him (that's a huge one that I refuse to talk about and deal with - still too painful). Not being the wife that Jared needs. The biggest guilt trip I've been on is because of my total failure in taking care of my family the way that I think I should be. Of course Jared has completely let me off the hook; he's been beyond gracious, understanding, and compassionate. My feelings remain, though. I feel like a disaster, a failure, an overwhelmed, not at all put together, disorganized, frazzled, tired, scatter-brained mess! We've had a hard couple of weeks. It's not always like this, and I know next week will be better. We're in a down phase or something. I just wish that knowing that made me feel better. I want to be handling all of this so much better. I want to be so way ahead of where I am. I want to be Super Mom! Although I'm beginning to wonder if she really exists.

On top of all of those feelings, I'm struggling to deal with the realities of Judah's pituitary disease, Panhypopituitarism. It's so...hidden and mysterious and complex and horrible. I don't understand it, and I can't keep up with it. I hate it. I hate that it effects every single aspect of my darling boy's little body. And I can't do a single thing about it. I'm helpless.

So, God hasn't really changed anything for me since the other day when I was feeling so weary of all of this. Who am I kidding? I still feel that way. No miracle healing or drug or good news. However, even though nothing has changed for us, I know that the same is true of Him; and that's comforting. He's the same. He's still all those things that I choose to believe are true. Everything His Word says about Him. He seems silent and far off right now. But I know He hasn't moved. He's still there, pursuing me and loving me...and Judah. He's with us at every appointment. There is peace in knowing these things. Hmmm, I really do miss my grandpa right now. I haven't missed him like this in years. He would've had a lot to say about God's goodness and faithfulness in regard to Judah. And he would have prayed like nobody else. I can only imagine how many times Judah's name (and mine) would have showed up in his prayer journals. Well now I miss Grandma. She's been gone for 20+ years, but I can picture her in my mind so clearly. She would have loooved Judah. All my kids, but there would have been a tenderness reserved for him I think.

Ezra's waiting to play the animal game. He's been more patient than any reasonable 4 1/2 yr old. And the pump awaits. Boo.

Tuesday, December 15, 2009

Weary

That's what I am. Weary.

4 medications in the morning...
1 in the afternoon...
2 at night...

5 doctor appointments or trips to the lab in 4 days last week...
3 doctor appointments plus therapy in 2 days this week...

Pumping...
Bottles...

Questions...
Uncertainties...
Feeling overwhelmed...

Disease...

I'm just tired of it all. I'm tired. God, I'm tired...and I want You to stop this. Just make it stop. It would be nothing for You to heal Judah. Just think it and it's done. Would healing Judah really alter some grand cosmic plan? Wouldn't it be worth it? You see him. You see how sick he is inside. I believe that it hurts You to see him hurt. So, just stop the hurt!

This is me today. Weary.

Tuesday, December 8, 2009

And...

We also saw the pediatrician yesterday for Judah's 6 month wellness check. Overall, it was a good appointment...and we didn't have to go to the lab for anything! Judah finally got caught up on his vaccines, and I was able to talk to the doctor about a few things. I was concerned about the increase in Judah's spitting over the last month; I know that the acid coming up can be more harmful for Judah because of his cleft palate. So, he's now back on Lansoprazole (Prevacid), but I'm more relieved than anything. I know that, for now, that's a good decision for him. My prayer is that as he grows he'll grow right out of this reflux problem. Another thing we discussed was solids. I knew the dr. would be ready for me to start Judah, because of his slooow weight gain. I think Judah is ready, too. I'm just not sure I'm ready. It's a big step, and I started my other kids later. Again, though, I believe that this is a good decision for Judah. I'm so thankful that the Lord has enabled me to provide nourishment for him up to and beyond this point, as well, so that does make it a little bit easier to start him on something else, too. Let me just thank Jesus again for an uneventful check-up!!

And...

I looked up that disease the endocrinologist told me about. I love google. And I hate google. At any rate the disease Judah is being tested for is a type of Adrenal Hyperplasia called 17 Aplha-Hydroxylase. Of course 17 is the rarest form of this disease (as far as I can tell from my reading). It's a defect in the gene for this particular enzyme. It's actually pretty fascinating, but I'd rather it be fascinating for someone else. Thank God for His grace to handle anything...


And...

Judah had his lip stitches removed today!!! Ever since he had them removed he's been smiling and giggling like his old self. Makes me wonder just what they felt like for him. Next week we'll go in to have the stitches in his hands removed. Oh, I wish you could hear this! He's laughing at Ezra right now!! He's such a jolly little guy!

Monday, December 7, 2009

Return to Medical School

I have always known that Judah is special. Obviously. However, I think that when a specialist says multiple times that your baby is "special", "different", & "interesting", even to him (the specialist) that means that your baby is rrreeeaaalllyyy special. Like, on the fast track to being a medical marvel even. Well, that's what we got from the endocrinologist this morning. I took Judah in for his every-3-months follow-up and got some new information. In one sense, it's kinda like, "Ya, my baby really is fascinating & special", but in the other sense it's "Oh, my baby is actually sicker than I thought". That's where the return to "medical school" comes in. I find myself knowing information that I never wanted to know...again. Overall, Judah is still doing fine. Day-to-day he's healthy; his happy, content, laid back, beautiful, charming, darling little self. But his insides are so mixed up and complicated and...sick. I'll try to keep this relatively simple. I'm still having a hard time wrapping my mind around this new information, so we'll see how I do at explaining it. 1st is Judah's growth...or lack thereof. He's 11 lb. 2 oz. & only 21 1/2 in. long. tiny. He will most likely begin getting growth hormone injections within the next 3 months. The 2nd issue is a little more sensitive in nature. There's an extremely rare adrenal disease (his endocrinologist has actually never seen a case) that effects growth, etc. in the "personal area". He believes that Judah might have this disease. It revolves around some 17 enzyme something that his body might not be producing. I don't know much else about it, because I don't know if he has it. When I know for sure, I'll ask. At any rate, he's getting some special blood work done on Wed. morning to test for this disease. If he doesn't have this disease he'll be starting testosterone injections within the next 3 months. If he does...I'm not sure what happens next. The 3rd issue deals with another part of his brain. Judah has had 2 infections - ear and lower urinary tract. Each time he was totally non-symptomatic and it was a surprise that they were there. I've had floating around in my mind the thought that that's kind of odd. Infection with no fever, nothing? We talked about that today. Long story short, the dr. believes that Judah's hypothalamus isn't working. This part of the brain is actually above the pituitary and sends signals to it; the pituitary in turn sends signals to other parts of the body dot dot dot. The hypothalamus also basically tells your body to produce a fever to fight off infection/bacteria. Judah's body is not producing fevers. Practically speaking this means that whenever a doctor finds an infection and puts him on antibiotics I also have to up his steroid dose to help his body deal with the stress of being sick. (Normally a fever would clue me in to this and I would know to "stress dose" him; however, he's not getting a fever!) Long term, though, I have no idea what something like this means. And I'm ok with that for now. All of this other information is more than enough!


Everything else is going well. His recovery from surgery is going pretty smoothly. He's fussy and uncomfortable sometimes, but other than that there haven't been any problems. I can't believe we go in to get the stitches removed tomorrow!!


Thanks to everyone who has prayed or prays on a regular basis for this Little Lion...HIS Little Lion. God reminded me this morning that there's nothing wrong with Judah. He is exactly the little person that God made him to be. Created in His own image, designed to fit perfectly into our family. There is pain in this life, but God doesn't make mistakes. And a perfect eternity awaits!

Wednesday, December 2, 2009

From the Waiting Room 5

I am writing this from my living room. It's so good to be home! It's been a pretty incredible ride, and God's faithfulness has been evident throughout. Less than 24 hours after Judah came out of recovery we were taking him home! Not a single complication! Over night Judah did very well. He slept soundly and woke once to eat. There were several interruptions overnight, nurses doing vitals, a dose of pain medication, but he pretty much sailed right through! He's had a little more swelling around his stitches, a little bruising, but overall he's looking better. I'm excited to see him slowly heal over the next several days and weeks. His appetite is coming back little by little...in between looong naps. He's still pretty tired. But he's home and he's doing great!


It's funny how each of my other kiddos have handled the last 30 hours or so. Praise the Lord for grandparents!! They saved my day by taking care of the kids while Jared & I were gone all day yesterday. And they were busy! Grandma & Lydia cleaned house (happy day), Gramps & Ezra played several games and put a puzzle together, lunch at McDonald's (of course), play time at 2 different play grounds (definitely a grandparent thing), craft time with Grandma, supper, and the evening & bedtime with Daddy. Ezra got a little sad when I said good night to him on the phone. Eli was already half asleep. And I'm pretty sure Lydia was more concerned about hearing a story than saying goodnight to Mommy! The fun (and funny) happened when we came home!


Eli: Eli actually got to come to the hospital with Daddy to come get us. [The surgeon rounded on Judah at 6:30 this morning, so we were all ready to go by 7:45!!] So, Jared & Eli picked us up "on the way" to school. Eli's whole face lit up as soon as he walked into Judah's room. He smiled ear to ear and came right over to me & Judah (who was in the sling). To his credit, Eli did give me a hug before he very gently & quietly oohed and aahed over his baby brother:) He was so proud to be a part of getting Judah out of the hospital. And he loooved that he got to sit by him in the backseat of Dad's car! The best part: when I took Judah out of the sling by the car, I let Eli get a good look at him before I put him in his car seat, and Judah gave him his first post-op smile! I found out later that yesterday Eli came home from school with a picture of Judah that his teacher (I think) had printed off the computer. He got to show his class the picture and they all prayed for Judah right away that morning. Now he's excited to take a picture of Judah so he can show his class what he looks like after his surgery! [By the way, anyone looking for the best Christian school around, I know where it it!!]


Ezra: My Little Man came to see us as soon as we walked in the door, but it was just for a quick "hello", and then he went back to whatever it was he was doing. However, later on he came to see me. He told me he had missed me. A few minutes later he wanted to do a puzzle with me. I needed to sit down at the table & pump, but told him I would love to do a puzzle with him there at the table. Grandpa offered to do it with him, because he had so much fun doing one with him yesterday. But Ezra looked at me and said, very sweetly and matter-of-factly, "I want to do a puzzle with you because I need to have some attention with you. I didn't see you all day! I need some attention with you!" I love that he was able to articulate that need so well. And it was just so darn cute!


Lydia: This little mommy completely disregarded her mommy! I walked in with Judah and she came running. "Where's Judah?" I picked her up to give her some lovins and tell her I missed her. All I got was "I missed Judah too!" She said "I love Judah so much" about 4 times over the next minute. I know she missed me, but she sure has a funny way of showing it;) She's been very careful & gentle with him, and has been very eager to help with any little thing!


We're all glad to be home together again. We're having a pretty quiet day. Judah's sleeping a lot. I've done a puzzle, played a game, cuddled. It's been nice. I can't wait for my bed tonight!!

Tuesday, December 1, 2009

From the Waiting Room 4

Cuddling in the CARES unit


All ready for surgery


Technically, I'm not in the hospital waiting room anymore. However, I am in God's waiting room, so to speak. Waiting to see how God will work and move in Judah's body over the next several weeks. Waiting for Judah's complete healing from these procedures. Waiting to see how God will continue to work and move in me...
That said... My beautiful little boy is sleeping soundly...still!
Going back to "Recovery"...
We got the call in the waiting room that he was ready to be moved upstairs to his room. A volunteer took us to a set of back elevators to meet him and go up together. As we were walking towards the elevators 2 nurses wheeled a little bed towards them, coming from a side hallway. I knew it was him when I saw his fuzzy hair sticking up from the bed:) And then seeing his face...his precious, sweet, adorable little face! I just can't get over that little face! Before today I couldn't understand how he could be as cute after surgery as he was before. I believed that he would be, but I just didn't know how that would be possible. The love that God instills in a mother's heart must be an overwhelmingly powerful thing, because the instant I saw him I was in love all over again. He was sleeping, but opened his eyes a little, responding to our voices, and then went back to sleep. Since then he's just been sleeping. However, even in sleep, he continues to charm the nurses here. They think he's so sweet and adorable, so laid back and easygoing. The best little patient. Well, obviously!

In his room with his new friend



Just Judah

I don't know what this recovery process will look like for Judah. I know it will be painful for him, and so for me, too; but I'm leaning on the Everlasting Arms to walk us through this stretch of road on Judah's journey, as He has each step of the way.

GOD. IS. GOOD.

From the Waiting Room 3

Just got our update from Dr. C. (Not K. - oops!) Anyway, overall everything went well. Our little lion is full of surprises. His Eustachian tube doesn't work, because of the cleft in his soft palate, so his new tubes will function as a Eustachian. Hopefully no more fluid in his ears, and the ability to hear us clearly!! He also has a tiny, tiny ear canal in his left ear. The tube that he used in that ear will last for maybe 6-12 months. Prayer request: that it will last until it's time to correct Judah's palate so he can have new tubes and the repair in one shot (around Judah's 1st birthday). Also, it appeared that Judah may be at the very beginning of an ear infection in that ear. He cultured it and that will come back Thursday. We'll have a follow-up with Dr. C. in a couple weeks.

Now we just finished up with Judah's surgical nurse. She said he's in recovery and doing well so far. 30-45 minutes and he'll be in my arms. I can't wait! Seriously, I'm dying here. I have butterflies. I'm just so excited to see him! What a relief to know that it's over and he's done well. Thank You, Jesus!!!

Dr. B. let us know during his update that as long as Judah is handling clear liquids well he should be able to go home tomorrow. He'll come see Judah in the morning. Clear liquids for about 24 hours and then back to Mommy's special Judah-only brew:)

I'm very thankful for this amazing hospital and the staff to match. They are really incredible, and again I thank Jesus for putting us here in the heart of Omaha. And of course I thank Him for Judah...always.

Let the countdown to that first wonderful face-to-face begin!!

From the Waiting Room 2

As we sit here it's weird and sort of unsettling to think that Judah looks different. He'll never be the same. When we met with the surgeon before surgery he was very reassuring. I know he's right: I will re-bond with Judah and think he's so beautiful all over again. I will fall in love with each little face...however many there may be. But really, this is odd.

At 8:30 Dr. B. (the plastic surgeon) came out and gave us a great report...with a twist. He said his part with Judah's lip & fingers went very well, and his lip turned out beautifully. But the doctor who was going to do his tubes didn't show. A miscommunication between the different offices regarding scheduling, etc. Bummer. Things like this happen. I believe that God is in control, and that there is a reason. However, I am not looking forward to having to put Judah through all of this again just for a 2 minute procedure. Gr. BUT GOD...

God is funny. Not always funny ha-ha...but just funny. No sooner had Dr. B. left, than Judah's surgical nurse came to touch base with us again. She said just as they were going to be turning off everything to take Judah to recovery the other surgeon called and said he was on his way! Talk about being "in the nick of time". Still not sure where the miscommunication came in, but regardless of his schedule today, Dr. K. is on his way to put the tubes in Judah's ears. And the timing of his call was such that they could just keep Judah sleeping, waiting for him to get here. Thank You, Lord. You're amazing.

I can't wait to see Judah.....

From the Waiting Room 1

I'm sitting in the waiting room. The sun is coming up. It's still pretty quiet around here. We've had our first update from the surgical nurse - all good. Cinnamon Oatmeal and bagel from the "pantry" in the CARES (surgical) unit. Now I have time to think. This is all kind of surreal...and weird.....

All day yesterday I just wanted to stare at Judah. See every face he makes, or made, hold his hands. I was trying to prepare myself to let go, and yet I couldn't imagine actually doing it. As the day wore on I felt slowly but increasingly more desperate to remember every tiny feature, every face he could possibly make. It was only by the grace of God that I got a good night's sleep. I also praise the Lord that Judah woke up at the perfect time to eat his "last meal" before surgery. Another evidence to me that God truly is into details.

This morning I hated to wake him up. He was sleeping so peacefully. Oh, that little face. I had to give him a bath, making sure that his hands were especially clean. Then cuddles and kisses, and a time of prayer with Daddy, too, before it was time to buckle him in his car seat. As silly as this might sound, I've had this "this is the last time..." mentality for the last 12 hours. The last time I'll see that face, or that smile, or kiss those fingers.

We got here and all checked in. Judah slept through the first half of our wait in the CARES unit, and then woke up smiling, charming his nurse. I'm so thankful for the time we had with him awake. We took some video, some pictures; just enjoyed his smiles and sweet face to the fullest. A little after 6 he started getting hungry and fussy. I put him in the sling, and after several minutes he was sleeping again. I'm thankful for those last several minutes with him in the sling. Holding him close, kissing him, smelling him, whispering to him. Finally, they came to take him. Thank You, Jesus, for giving Judah that deep sleep. I put him on the bed asleep, covered him with a warm blanket, and kissed him one last time. Then they wheeled him away, still sleeping. Oblivion is a beautiful thing sometimes.

Now we wait to see that new beautiful face.....

Tuesday, November 24, 2009

Life with Four

A little birdie told me I was behind on updates. Well, since I'm so fond of said birdie (and since she just happens to be right), I decided I'd better start catching up!

Thankfully, we've been in a kind of "no news is good news" phase these last few weeks. We're all remaining pretty healthy; just the "required" Fall cold. Judah continues to make progress in his therapy. We're enjoying his smiles and sweet nature immensely, and gearing ourselves up emotionally and mentally for his surgery. The other 3 kids are doing great all around. Well, Lydia does have that required cold right now. The saddest part about that for her? She can't hug, hold, or kiss Judah. She is, however, allowed to kiss his toes. He's got the best loved "li'l tosies" known to man:) Jared's officially in the busy season for YFC, which won't end until March. Boo. Thank the Lord there are 3 holidays & 3 birthdays to look forward to in the midst of this time! God continues to teach me. Life with 4 kids offers an infinite supply of spiritual life lessons...and just plain old lessons! Here are just a few things I've learned from my life with 4...

*There's never - and I mean NEVER - a dull moment! Of course that makes sense when they're awake. But even when they're sleeping, there's always something to be done. My job security as a stay-at-home mom is sound. (Speaking of job security... I tease Jared about my "job security" as his wife. I know he'll never leave me, because there's no way he could ever afford child support! His response: "Seriously!")

*If you get behind on laundry, it's all over. Good luck finding your way out from under the mounds of clothes that seem to multiply exponentially. These mounds are also experts had hiding things; including, but not limited to, shoes, belts, toys, and even small children.

*When every child is whining and/or crying at the same time, DON'T PANIC! Life as you know it will not come to an end simply because the 4 & 7 year olds have to wait a bit...regardless of how many times they insist that this is the worst day they've ever had or that it's not fair. Most successful remedy for this occurrence: offer a healthy snack and a game. And "time in" in the sling works like a charm for the baby, but is also equally effective for the tired, crabby 2 1/2 year old.
NOTE: as a rule, yelling "STOP YELLING" at your yelling children doesn't work.

*Accept any help offered, and even learn to ask for it. Pride has no place in the life of a mother who spends her days wiping noses and butts, and other various household surfaces.

*Accept early the fact that your house will never look the same again, and get over it. Some clutter can be considered an art form, the refrigerator becomes a beautiful art gallery, and art on the walls and table top can't stand up to the Magic Eraser, so don't stress out.

*Stay away from WAL-MART. It eats mothers with young children alive.

*Enjoy the moments you get with each individual child. They're too few and far between.

*These are the longest days and the shortest years of your life. It's tough, but I believe that I'll never look back and wish I didn't have so many kids. I'll look back and be humbled by the evidences of God's undeserved grace and goodness in my life, manifested by these 4 little monkeys.

*God's grace really is sufficient for me. His mercies really are new every morning. He really is present with me as I go through the day, washing, wiping, and sometimes weeping. And He really has called me to the most fulfilling, rewarding, challenging, and beautiful "job" possible: that of being Mom to Elijah, Ezra, Lydia, & Judah. (Even though I'm already going gray!)

Friday, November 13, 2009

Eli's Journal Entry

Eli keeps a journal at school. I didn't know this until his principal emailed me yesterday to tell me that he had been in her office to read her one of his entries. She told me she kept a copy of the entry on her desk, and she loved it. When I picked him up from school his teacher told me that she had put a copy of one of his journal entries in his folder so that we could see it. The same entry the principal had raved about. I couldn't wait to get home and read it! After doing so, I knew I had to save it for Judah!

"My Baby Brother"

My baby brother is very cute! He is four months old. He has a little old man face. He has very chuby arms & legs. He is our little lion of Judah. Because Jesus was the Lion of Judah. I can make Judah laugh! I make him laugh when he is in his bouncy seat. When he is in his bouncy seat me and my brother walk or jump over him and his bouncy seat. He just cracks up! We got it on video. And my mom and dad just crack up. It is so cute. I wish you were there. It was so funny.
The End.

Need I say more...?

Wednesday, November 11, 2009

Therapy, Teeth, & Tee-Hee-Hees

Judah had another great therapy session today! He continues to improve and get stronger. He's holding his head up more and more, reaching for things, bringing his hands to his mouth, and becoming more active overall. The main things we'll work on for the next few weeks are strengthening his tummy muscles, encouraging more leg movement, and rolling over! We hadn't seen his OT in almost a month (we had his teacher last time), so it was really fun for me to hear her oh and ah over the progress he's made. I love it, because the 2 women that work with him appreciate the little accomplishments like they're big ones...which they are for Judah.

And in other news... Judah is cutting his first tooth! This might sound odd, but in the midst of everything that makes Judah so "special" I forget that he's going to do normal things like teethe! I couldn't believe it when I saw that little mound in his mouth. I found it the day before it started cutting. He didn't fuss like he was teething or anything! All of a sudden there was just a tooth there! He really is the world's most laid back champ of a baby:)

Today I got a great laugh. A good friend stopped by for a bit and gave me a card. I have never been given a card that was so appropriate or so stinkin' funny! Seriously, this is the best card I have ever been given. And any other mom who has ever pumped would say the same. The front of the card has a drawing of a mommish-looking woman on the front, and she says "Whoever said 'there's no use crying over spilled milk' obviously NEVER pumped six ounces, then accidentally dumped it." Oh my word, I'm laughing now! Of course, I freak out over spilling 6 ml, much less 6 oz., but still.

Tuesday, November 10, 2009

Fall Fun!

We had a family date out at a pumpkin farm



We had a lot of fun carving pumpkins for "Family Night"



We all got dressed up for a "Halloween party" we had with another family



The Brothers were too cute


Little Pirate Judah



Happy 5 month Birthday




Saturday, November 7, 2009

Big Day for this Little Guy

Judah made history on Thursday! He had a weight check/health & physical at the pediatrician's in the morning. For the first time ever his doctor's appointment was just that: strictly a doctor's appointment!! We were outta there in 45 min! No labs, urine samples, or extra anything! Thank You, Jesus!! I was so excited that we were able to be in and out and everything went as expected:) My little champ is now a whopping 10 lb. 9 oz. He's still gaining just what he needs to to stay on track. Bless his ped's pro-breastfeeding heart! He has allowed me to give Judah breast milk exclusively without even hinting at supplementing, even though Judah's gain is technically "borderline". His physical went well, too. He's been officially cleared of his UTI, and since he's now over 10 lb. he's been cleared for surgery. Speaking of which...

Judah's surgery date is Dec. 1. I'm thankful that it's a little farther down the road, and in between the holidays. (I have more time to try to memorize his smile and he'll be just a little bit bigger.) His surgery was a little trickier to schedule, because this little "high profile" champ requires 3 surgeons to be there! Each procedure has its own surgeon so... It'll be a big day for him, and us.

My biggest prayer for Judah in this is that his stay in the hospital will be just the customary 24 hrs. I'm praying that his other illnesses will (miraculously) not effect his recovery or ability to bounce back from the procedures. I'm praying for an easy 3 week recovery process for him. I'm praying that Jared and I will be a testimony to the staff we come into contact with at the hospital during his stay.

Thanks for praying with us.

GOD. IS. GOOD.

Wednesday, November 4, 2009

Pirate Judah

Judah did great with the eye specialist yesterday...of course! I'm very happy to report that, overall, he has improved in his eye movement and responses. Very encouraging! The only thing that stayed the same from 3 months ago is the weakness in his left eye. The dr. said he's at a critical stage for development now, and is at risk for developing lazy eye. Apparently, because of that weakness, his brain will ignore that eye. Wild. [The human body never ceases to amaze me. Especially Judah's!] For the next month Judah needs to wear an eye patch every day for 2 hours to strengthen his left eye. Then he'll go in for another follow-up. Of course the very first thing Ezra said when he saw Judah with that little patch on was, "Pirate Judah!". I can always count on my kids to see the cute or bright side of things:)

Monday, November 2, 2009

It's November. Wow. I can't believe it's already November. I can't believe that Judah will be 5 months old this week. I can't believe how time has flown these last couple of months. This month is a big one for us, for Judah. He has a follow-up with the eye specialist tomorrow morning. And then sometime within the next 2-3 weeks he'll have his first surgery, repairing his lip, removing his extra pinkies, and placing tubes in his ears. He needs to be cleared for surgery by his pediatrician first, and I'm still waiting for the results of his follow-up urine sample to make sure the UTI is totally cleared up, but after those things are taken care of the surgeon will be ready to rock 'n roll, so to speak. Because of Judah's other illnesses this is a much bigger deal, and could require a longer stay in the hospital. This surgery also comes with a 3 week recovery process. I'm really struggling with this. Intellectually I know that this is the right and necessary thing to do for him. But my heart is breaking. My beautiful boy! I am so in love with that little face. That wide grin. Those little raspberries he's always blowing. Those tiny fingers. He was made in the image of God, designed by God, and is covered with the fingerprints of God. It's so hard to wrap my mind around the fact that God created him so beautifully, but then we have to "fix" it. I so wish time would slow way down so that I could enjoy him this way longer. No, I wish we could just skip this step altogether. Besides battling the sadness of having to say good-bye to that smile, and changing my baby forever, I'm also battling anxiety over the unknown of how Judah will handle everything. It's scary. We've had almost 4 full months out of the hospital, but I'm really not ready to go back. What will I do when I see him on the ventilator again? Can I handle that again? Can I see him "wired" all over again? Tubes, beeps, a sterile hospital room... This is going to be so hard. I need to start collecting verses to take with me when I stay with him. The truths of God's Word, of who God is, of Christ in me doesn't change. I know this. GOD. IS. GOOD. He is already there in that day when Judah goes through this surgery. Thank You, Lord, for the peace that that knowledge brings. You love Judah more than I can even begin to fathom. Far more than I could ever love him. You made him, he is Yours. I have the privilege of knowing him and loving him, but he really belongs to You. I can trust You with him, because You can care for him far beyond any of my capabilities. You are in control. Judah is in Your hands. The surgeon is in Your hands. Thank You.

Tuesday, October 20, 2009

Judah's Belly Laugh

I couldn't resist uploading this video! The Boys were just being silly. Who knew it would inspire Judah's very first all out belly laugh?! His laugh was so contagious he had Jared and me going, too! I just had to share this:)



GOD. IS. GOOD.

Saturday, October 17, 2009

Tickle Me Judah

Two days ago I discovered that Judah is a Stewart through and through. He's ticklish!! This is the 3rd time we've been able to make him laugh. I got this video just last night. Oh my goodness he's just too sweet!!

Latest Therapy Session

On Wed. Judah had therapy. We've been focusing primarily on developing head control. After talking to his therapist for several minutes about how he was doing, she sat him on her lap. To my amazement and delight, Judah sat there holding his head up! I've been so careful with him, not wanting to inadvertently hurt him, that I didn't realize how far he had come or how much strength he had developed! He's still wobbly, and will drop his head forward sometimes, but he can lift it back up and look around a little! And he looks so adorable!! I'm so proud of my little guy! So, this vidoe is just to show off...

Close Call

Thursday, the 8th, was a big day for Judah and me, nearly ending in Judah's first hospitalization since the NICU. What started out as just a routine 4 mo. wellness check that morning, ended up as two 3 hour "stints" at the Children's lab and ER. It all kinda started on Monday when Judah had his follow-up with the kidney specialist. The culture from his urine sample (a Bag UA, they call it, because they got it by sticking a little urine bag to him...pleasant image, isn't it) came back "suspicious". Anyway, by the time Thurs. rolled around, I needed to talk to the pediatrician about his elevated glucose (from Mon.) and his culture. The dr. didn't know any specifics about the culture, but because his glucose was high we had to postpone vaccinations (again) and go to the lab to get more blood work. Then I had to wait at the lab with my 3 youngest children for the results from the blood work, because if his glucose was still too high we'd have to go upstairs to see his Endocrinologist to have him look at Judah and change his Hydro cortisone dosage. Sheesh. Finally the results came back: Normal! Time to go home:) My whole morning was blown; but the kids were great, and McDonald's was right on the way home! That evening, right in the middle of fixing dinner, I got another call from the ped. Apparently, that morning Judah's potassium had come back high - too high. (I didn't realize that any time any of Judah's blood work comes back abnormal, especially with his electrolytes, they have to re-check and re-check until it's normal.) So, I needed to get him to Childrens right away for another round of blood work to make sure it hadn't gotten any higher. It was a 6.5, and 7+ means he needs to be admitted so they can monitor his levels and his heart. (Didn't know that too much potassium can adversely affect your heart.) They also wanted a cath. UA on him to double check his urine for a lower UTI. So, back to Childrens I went with him. I had to take him to the ER for the catheter because the nurses upstairs aren't available for that after 5 (on an outpatient basis). The lab came down to us; how nice of them:) Judah was a champ, as usual. I wonder how many times in my life I'm going to have to hold his hand and watch while a nurse inserts a catheter. This visit was another 3 hours by the time the call came back from the ped. that his levels were back to normal and we could go home. Yay! It was a long, tiring, somewhat frustrating day, but I praised the Lord all the way home that we were actually going home! On Sat. Judah's culture came back with 2 different bacteria - infection. So, even with a prophylactic dose of antibiotics, Judah will still get an occasional minor UTI infection. At least it's not in his kidneys. And, I'm praising Jesus that the infection is minor enough that he had no symptoms! I truly believe that God's hand is on Judah, and He is protecting him.

When all is said and done, I just had no idea that the combination of these 2 diseases - Hypopituitarism & Chronic Kidney Disease - would be so complicated and so involved! A tiny little gland in the middle of your brain, the pituitary, directly or indirectly effects pretty much every other part of your body. And obviously your kidneys are pretty darn important, too. I just didn't know. BUT GOD... God knew. God knows. He knows the inner workings of Judah's body intimately and perfectly. He designed Judah. And just the other day, as I was looking at Judah, God hit me with this truth afresh: God created Judah for His pleasure, His glory. He sees Judah in a way that I can't. He sees him whole and well, the way that Judah one day will be. And he sees beauty in Judah right now. Judah is beautiful. It's a weird dichotomy that I now live with on a daily basis: I pray for healing, and mourn the fact that Judah has a difficult, challenging life ahead of him...but I wouldn't change him for the world. He's my precious, darling boy.

I'm so thankful that on a day-to-day basis Judah is healthy. He's not constantly battling for his life. He's not sick. He's happy and content. I thank God every day for him.

Monday, October 12, 2009

Judah's First Snow Day

It's just so wrong on so many levels that we woke up to 3 in. of snow on October 10; and it kept on coming. However, it was fun to take Judah outside for his first snow day! He looked too cute all bundled up! The other 3 had a blast sledding and snowball-fighting with Daddy & "Mr." Nate:) They were all outside for a good hour, while "Miss" Erin & Abby, Judah & I hunkered down inside for good conversation and little baby nap time. What started as a morning of shock and awe and even disappointment over the early snow, turned out to be a very fun snow day!!

Good Grief

As is so often the case, a new post to my blog is just the beginning of processing a truth, or truths, that God is trying to show me. My post on grief was no different. Since I wrote it, God has been impressing on my heart that I wasn't finished...or He wasn't finished. What I wrote is very true. But I missed another truth about grief. An important one. Grief is good. Had Adam and Eve never sinned, grief never would have been a part of our lives, our world. But they did sin; and that thrust the whole earth into a long season of groaning and grief. Creation itself has been effected by sin and grief, and what we see is a mere representation of what awaits us in Heaven and on the New Earth. [So cool considering the fact that I have seen some breathtaking beauty on this earth.] Anyway, I'm beginning to understand more and more that grieving and lamenting is a very important part of a believer's life. I believe it's one of the most effective methods God uses or allows to get our attention, to draw us closer to Himself, and to increase and intensify our desire to be Home with Him. We're supposed to live with an eternal perspective, and hurting in this life definitely serves to make me more acutely aware of that. Grief is a powerful tool that God can and does utilize to deepen intimacy with us; and then bring us to the point where we can more effectively encourage and minister to others because of the grief we've experienced and He's brought us through....eventually. The timing of that will be different for each person, in each situation. So, I've made the conscious decision to continue to embrace the grief that I experience over Judah. As well as any other grief God allows into my life, because I know that as I embrace it, and run to God with it, He will accomplish His good work in me. I will grieve, mourn, and lament as only a believer can, because I know what this world was meant to be, groans for and longs to be, and what this world will someday be. And who I will someday be!

Gifts

James talks about every good gift coming from above, from the Father. Matthew and Luke say that if an earthly father loves to give their children gifts, how much more so their Heavenly Father loves giving them gifts. (My translation!) Of course, these guys weren't exactly talking about vans and play sets, but I believe that the principle applies, and that God absolutely loves to bless us! We are His children and He delights in us. His definition of "good" is often very different from ours, but we can trust Him completely to give us His good. Last month God provided a 2003 Honda Odyssey for us. A dream van for the Stewarts! Never thought we'd ever actually have an Odyssey, but God knew our hearts and made that happen for us. (Thanks to Dad...and many, many hours of "putzing"!!) Every time I hear that Honda engine start up, or look at the low miles, or push the button to open the automatic doors, or enjoy any number of other little luxuries I thank God again for this good gift. The other gift God gave us last month was a beautiful "new" play set! A dream come true for our older 3 kiddos, and a gift that presents wonderful possibilities and potential for Judah later on! God enabled us to buy it used from a friend's neighbor, utilizing a financial gift from some other dear friends that we never saw coming! I love to see how God works; how He chooses to move His money and resources around to bless us and others! God is good all the time, and all the time God is good. Regardless of the circumstances, what the day looks like, the questions, this truth will never change. I'm so thankful that God chooses to bless us in ways we never anticipate, and at just the perfect times!

Thursday, October 8, 2009

For the Joy of Judah

I have been enjoying Judah more and more. He is truly such a delight and a joy to be around! He is very content and rarely fusses. People at the lab or various doctor's offices are always commenting on what a little champ, sweet boy, or adorable baby he is...while they're poking and prodding him, and he's laying there without a sound of protest! Seriously, he's amazing! God either gifted him with an extraordinarily sweet disposition, or a very high pain tolerance...or maybe a combination of both:) I have had so much fun with him lately. He smiles so easily and has the cutest, most endearing smile of any baby!! God has allowed me to thoroughly enjoy just Judah; I have been able to look past what he's not doing - holding his head up, focusing, reaching out for me - to see the beauty of who he is just as he is! God has enabled me to accept more and more each day the fact that Judah is on his own timetable. I don't consider him to be "delayed". He is right on time according to the timetable that God has created for him. Our little lion. I love his squishy, squishy cheeks, and his eyebrows that go up and down to convey all kinds of emotion! He is so easy to kiss and squeeze and love all over. He invites it just by being his little sweet self. I just can't seem to keep my hands or lips to myself! His brothers and sister have that same "problem"! I love his tiny, tiny feet. They are growing up faster than they are growing out! And his chubby hands and fingers - all 12. Judah is just so very special.









We were at the doctor's office for his 4 mo. wellness check this morning. An appointment that was scheduled for 8:45 and ended at Childrens at the lab at 11:50. I will never again take for granted a simple check-up! Everything is fine, but it was a looong morning. Good news is he's now 9 lb. 13 3/4 oz. (before his breakfast) & 21 in. long. He's growing and thriving on just the milk that I'm pumping; an accomplishment I am very proud of! And I'll just continue to thank God that we get to enjoy this "newborn" phase awhile longer:)

Tuesday, October 6, 2009

Evie

Evie is a beautiful, special, tiny little girl that needs much prayer right now. Her mom Lindsey and I have forged a special friendship through the commonality of pain and grief over our little ones; as well as rejoicing in them. We found each other through our blogs, but we have the privilege of going to the same church and seeing each other there! John and Lindsey have an incredible story and a testimony to match. Their little Evie is just over 2 weeks old, was born with a form of skeletal displaysia, and was just rushed to Childrens for some severe complications and symptoms. She is currently in the PICU (Pediatric ICU). I would encourage each of you to look at Lindsey's blog, www.eviejayne.blogspot.com. Lindsey has been a tremendous source of encouragement to me many times as she has trusted the Lord on their journey with Evie. She is a beautiful woman of faith and grace, and you would be blessed to follow their story and see how God has worked and moved in their lives. You would also be equally blessed to know Evie, if even just a little bit. So, please pray!

"...so that there may be no division in the body, but that the members may have the same care for one another. And if one of member suffers, all the members suffer with it; if one member is honored, all the members rejoice with it." 1 Crointhians 12:25-26

Monday, October 5, 2009

Kidney Follw-up

A little over a month ago I requested most of Judah's medical records from Childrens so I could have that stuff on file. I wanted his EKGs, EEGs, MRIs, lab results, and other reports from doctors & specialists that saw him so I could have a more complete medical history. I also thought it might come in handy to keep up with this stuff as we go along, since we see so many different specialists. Not sure this was one of my better ideas. First off, the records they sent me - just the ones I asked for, not even everything - was 135 pages long. Second, I just don't think I can keep up with everything. There are too many appts. and labs. If a doctor wants something, they can ask another doctor for it. There. I'll try to keep track of the bigger things. Anyway, as I was reading the report from the nephrologist, I discovered a very unpleasant surprise. It shouldn't have been a surprise. The very first line of the report said that the doctor discussed this with me...I just have no recollection of this conversation or diagnosis. Judah has chronic kidney disease. A little more complicated than the "fixable" kidney issues he has as well. So, he'll be followed up on a regular basis to make sure that his kidneys are functioning well enough to keep up with his growing body, and to make sure that they're actually growing. Thankfully, unless he ends up with an infection, we don't have to see this dr. for another year now; and the urologist will also follow up in February. So, this new information has added another dimension to what Judah faces in the future, both near and distant. Right now, thank You Jesus, Judah's kidneys look o.k. On ultrasound there was actually some improvement since she saw him in the NICU. They are underdeveloped, they don't function at 100%, and they are deformed, but they're working right now:) He had a high white cell count in his urine, which is a sign of infection. Since he's not symptomatic, she said it could be just a minor lower tract infection. My prayer is that it's nothing. I know God can wipe out a matter of a few extra cells. No problem. So that's one of my prayers right now. As long as Judah is infection-free we don't have to think about a repair surgery until he's 5. (That would be for the reflux, not the disease.) Anyway, the other concern she had was the low glucose level in his blood. Not sure where this is coming from, because his hormone replacement should be taking care of those levels as well. She said this could be an indicator for a metabolic problem...not even gonna go there right now. She's sending her report to the pediatrician who we see on Thursday. I may have to start checking his glucose levels on a regular basis for awhile. We'll see what Dr. A. says. So, today brought good and not so good news. BUT GOD... God knit Judah together and knows him intimately. He knows every "weakness" that Judah's body has, and He is able to either bring healing or sustain Judah (and us) through anything he faces. And of course there will be a day when He brings perfect healing for Judah's body. What a day that will be! For now I rest in the truth that God is in control and has ordained every single day of Judah's life, whatever that may look like with his significant diagnoses. Every day is a gift, because Judah is a gift. Speaking of which...some little one is hungry...

Monday, September 28, 2009

Judah

Just look at this darling boy! He's so happy and content. He gives away his beautiful smiles so easily, to anybody! He delights his brothers and sister, and provides all kinds of entertainment for them. (Granted, my kids are pretty easy to please, so Judah doesn't have to do too much to make them happy!) He's such a joy. It's hard to believe that he's been home for almost 3 months already, and is going to be 4 months old next week! Now that it's officially Fall, I can say that we did indeed make it through the summer. This was the hardest, longest summer EVER, but God carried us through...AGAIN! His grace and faithfulness were there for us in perfect measure each new day. Enough to see us through, and keep us clinging to Him for the next day's measure. He is so good. I realized that we have experienced a miracle. 2 huge answers to prayer! Our pediatrician told us that by October Judah would be hospitalized at least twice. Well, October begins in 3 short days, and my little lion is healthy and hospital-free! He also told us that, most likely, by 2-3 months of age Judah would develop the diuretic condition where his kidneys would output constantly, and he'd be on new medication including 1 liter of water a day. Judah will be 4 months old on Sunday, and his kidneys have not developed this condition yet. Praise the Lord!! I'm so thankful to God that He has allowed us these healthy months with Judah, without any hospitalizations or any other serious illnesses or conditions coming up. I realize that this is a gift. I just wish that would have occurred to me earlier. Sometimes I'm a little slow... Today I'm celebrating Judah - his smile, his health, and the fact that God gave him to me. I'm so blessed.


Thank You, Lord, for giving me joy.....

Friday, September 25, 2009

Grief

I've learned a lot about grief over the last 3 1/2 months. It's horrible. It's raw. It has stages. It's a process. You might move beyond a stage, but that doesn't mean you won't revisit that same stage at a later time. You have to work through grief. It's sneaky. Just when you think you're on top of it, it rears it's ugly head unexpectedly. Grief can kick your butt. It can leave you feeling lost and alone; and it can make you second guess yourself, stripping you of any self-confidence you might have. (Am I normal? Is it ok to grieve like this? Should I still be grieving?) But, it can also cause something really beautiful, healing, and life-changing to happen. It can drive you to your knees and thrust you into a desperate pursuit of Christ and a deeper intimacy with Him. A crying out, pleading, all-I-want-is-You kind of pursuit. This doesn't happen all the time. Some days the grief wins the battle. But even on those days I believe that God is at work, deep down in the hidden places of my soul, winning the war.

I grieve.

I mourn.

I lament.

I remember when our doctor thought that Judah might have Trisomy 18, and we were facing the possibility of losing him. At that point, I didn't care what kinds of disabilities or special needs he might have, as long as I could bring him home. I just wanted Judah. The day we found out that his chromosomes were normal, I felt like I could fly. Like a literal huge weight had been lifted off my shoulders. That day I wasn't grieving...it wasn't even a tiny blip on the radar. And I don't think I could have even guessed how hard the grief would hit me later. But here I am, with my beautiful, charming, darling boy, grieving. I don't grieve over Judah, or because of Judah. He's such a priceless gift! Such a treasure! I grieve over what I have lost, and what Judah has lost and will have to face. I lost the dream of a normal delivery and a healthy baby that could be with me. I lost the dream of a breastfeeding relationship. I'm still working on that one, but it will never be what it was with my other 3. Judah has lost a normal childhood, and I have lost the dream of that for him. I hate that he is facing a life with pain and disease and hospitalizations and surgeries and medications and doctors and other possible handicaps that we're not sure of yet. It's a fine line of grieving; mourning the circumstances surrounding this little person, not mourning the person.
The grief hits me at times that seem so wrong. My brother & sister-in-law are having a baby. A little girl. I rejoice with them, and I'm so excited! Another niece for me, another girl cousin for Lydia. I pray for her and love her already. They had their 20 week ultrasound yesterday. What a privilege for them to be able to see her, and also to be able to share the news that she's healthy! But in the midst of all of this happy news, I grieve all over again. I relive our 20 week ultrasound with Judah. The rest of my pregnancy. His birth and that time of separation. It hits me, and it's fresh all over again. It makes this time that should be nothing but joyous, bittersweet. I wonder, then, if parts of life will always be bittersweet. Will I always be contending with this grief; always experiencing sorrow in the midst of my joy? How frustrating is that? I don't want that. So, the question becomes, how do I find joy, real joy, that is alive and fresh and independent of my circumstances? Intellectually I know that my joy can't come from my circumstances or surroundings. I know that it comes from Christ. That's what I want. I want joy, not grief. Ecclesiastes says there is a time for dancing, too. Someday, I hope that God will help me to set aside my grief and experience true joy, dancing! Without even a hint of bittersweet. This side of Heaven.

Tuesday, September 22, 2009

Plastics Consult - YAY

I'm such a silly girl. I often get myself all worked up over something, only to see God go before me, paving the way for His will and glory...

Judah's consult went well. I'm extremely confident in his surgeon's skills and expertise. He's also just a very nice man:) The consult went quickly, and all of a sudden we were to the "do you have any questions" part. I stumbled over my words a little, because I just wasn't ready for that so suddenly. Jared looked at me and repeated the question. Now that I think about it, it's kind of comical! Anyway, all I had to ask was if he had researched breastfeeding after a cleft repair. In a nutshell, he told me that it's ultimately my decision, and then laid out the reasons that he doesn't recommend it. That was it. No case-presenting or respectful arguing...nothing! And boy was I relieved! Now, we go from there. Continuing to pray. Taking what he said into consideration, doing some more research. More praying. And in the end do what we both believe to be God's best for Judah. We had one other answer to prayer come about during the meeting. We had been hoping to put off Judah's surgery until at least November. It just so happens that pre-approval from the insurance company takes 6-8 weeks, and the surgery gets scheduled and takes place shortly after that. That puts us in November:) Thank You, Jesus! And thanks to each of you who prayed!!

Monday, September 21, 2009

Plastics Consult - PRAY

Today at 3 we have a consult with the plastic surgeon that will be doing Judah's cleft surgeries. I'm way nervous, because I will be presenting my case for why Judah should be allowed to nurse (even if just for comfort) after surgery. My prayer is that he will understand where I'm coming from, really hear what I'm saying, and agree to let me do this for Judah. I'm also praying that I would be confident in my "arguments", but respectful and gracious as well. I hate confrontation of any kind, so this is a big deal for me. But I know in my heart this is the best thing for Judah. I'm willing to advocate for him in spite of my anxiety and lack of confidence - Lord help! Thanks for praying.....

Sunday, September 20, 2009

My Top 100

"In everything give thanks." 1 Thessalonians 5:18

In random order...
I'm Thankful For...

1. Jesus
2. Salvation
3. Grace
4. Love
5. Heaven
6. Jared
7. Elijah
8. Ezra
9. Lydia
10. Judah
11. Family
12. the Body of Christ
13. Music
14. Evie
15. Sunshine
16. Summer
17. Pink
18. Goodwill Mugs
19. New Shoes
20. Purses
21. Nail Polish
22. Kisses
23. God's Word
24. New Pajamas
25. Coffee
26. Strawberries
27. Chocolate
28. Baby Sounds
29. My Children's Hugs
30. Friends
31. Date Night
32. Gym Membership
33. New Tribes Bible Institute
34. Corporate Worship
35. Snow
36. Autumn Leaves
37. Colored Underwear
38. New Van
39. New Play Set
40. Bubble Bath
41. Flowers
42. Modern Medical Technology
43. Dr. B.
44. Family Visits
45. Letters & Packages
46. Trials
47. the Ability to Write
48. Family Reunions
49. Red Hair
50. God's Faithfulness
51. My House
52. Ministry
53. Friends' Visits
54. My "Life-on-Life" Mentor
55. Laughter
56. Tears
57. Clearance
58. Rummage Sales
59. Books
60. Christmas
61. Easter
62. Thanksgiving
63. "Happy" Socks
64. This Blog
65. Dependence
66. Sundays
67. Family Night
68. Emotions
69. Restaurants
70. Hotels
71. Grandparents
72. a Heritage of Faith
73. Freedom
74. Stars
75. Camping
76. Toasted Marshmallows
77. Fireplaces
78. Mercy
79. Compassion
80. My Bed
81. Hot Showers
82. Life with My "Abraham"
83. Presents
84. My Birthday
85. Cornerstone Christian School
86. Hammocks
87. Family Vacations
88. Candles
89. Hope in Christ
90. Miracles
91. Forgiveness
92. Medicine
93. Breastmilk
94. Photographs
95. Computers
96. Video Cameras
97. Older, Wiser Women
98. Electric Blankets
99. Fuzzy Slippers
100. God's Perfect Plan

Friday, September 18, 2009

Focus!

Wednesday was good for me. It's been a really hard, long week. I've had a lot on my mind and rolling around in my head. I've not known where to go with all this that I've been dealing with...or how to deal with it. I think that talking to Jared (or blowing up at Jared as the case may be) will help. I think that eating chocolate will help. I think that reading a book or watching t.v. or taking a nap will help (ya, good luck with that one). I think that desperate cries for help will...help. But it seems like the healing really begins when I sit down to write, and God draws my focus back to Him. That's what happened on Wednesday. After a day from hell on Monday (yes, I really said that) and a day that was only a little better on Tuesday, I finally made the time to write on Wednesday. Since then God has brought 5 things back into focus for me. 1. There are a lot of moms who have special kids and husbands, who may not be in full-time ministry, but their jobs or businesses keep them away from home just as much or more. I am not alone. 2. I have a lot of family, through blood and/or Christ, who are diligently praying for me and loving me. They are personally invested in my life, Jared's life, Judah's life, and this journey we are all on together. I am not alone. 3. Regardless of my circumstances, there are others who are experiencing pain and grief that far exceed mine. Yes, my experience is very real and painful and unique to me; and I need to face this pain and experience it to the fullest. But grief is not unique to me. There is a whole world of pain outside my own little world of pain, and stepping outside into that world, focusing on others and encouraging them, is also a necessary part of this journey. I am not alone. 4. I really do have a phenomenal husband. He has a love and passion for me and our children that is second only to his love and passion for Christ. He has a love and passion for students that draws them to himself and points them to Christ. He desires to know God more. He desires to effectively love and minister to me and our kids. He is a leader through servant hood. This pain and frustration is his just as much as it is mine. I love him. I am not alone. 5. Regardless of what my condition looks like, my position in Christ is firm and unshakable. Regardless of how ugly my condition is, when God looks at me He sees His beautiful Son and His finished work on the Cross. My position in Christ means that God delights in me and loves to bless me. I am His child. He delights in and blesses me as His child the way I do in my children...only on a scale of much, much greater magnitude!! Regardless of how I fail in my condition, He meets me where I am at and gives me HIS good. [In just a week's time God gave my kids a HUGE wooden play set, and provided a van for our family.] I am definitely not alone!

It's been a looong, hard week; but at the end of it, I have to say that it has been quite productive, and God has been at work in me. He is good. His grace is sufficient.

Wednesday, September 16, 2009

Time to vent

I've been holding this in for awhile, but now it's just time to let it out and have a good vent session! This whole big family, special needs, ministry wife/family thing is much harder than I ever dreamed it would be! This summer I was so thankful that Jared was in the position he was, because he had plenty of vacation time, very flexible hours, and the ability to work from home or hospital. He was available. He was there. Things have changed to the extent that I really don't know if I can do this. I have struggled - really struggled - with this for the past month. I don't know what the answer is...or if there even is one. O.k. Christ is the Answer. Ya, I know that intellectually, but I don't know where that "pat" answer fits into this. I'm so frustrated and angry with, and torn by this whole situation with our "new normal" and being a "ministry family". And it really just sucks. Jared and I have fought and have struggled. We've been pulled in different directions. We've been exhausted by the stress and pressure that so many new demands and responsibilities have brought. As a way to motivate us (well, me) he said that if we survive this year he'll do everything he can to make a real family vacation happen for us next summer. The whole 2 week extravaganza! Yes, it's been fun, a real bright spot in some dark days, to think and dream about what that vacation would look like. [My favorite scenario takes place in CO:)] Honestly, though, I see 1 of 2 things happening. 1. We really don't survive this year. Or 2. We "survive", but no longer want to take a vacation together. I know that there are women - moms, wives - who have had big families, special needs, and a husband in full-time ministry and have more than survived. They've thrived! They're happy and content and in love with their husbands and have nurtured and raised obedient, well-adjusted kids. I know they've got to be out there. I just don't know who they are. And I'm really not sure I can ever be one of them. It pains me to admit all of this, because it brings me face-to-face with my failings, short-comings, and insecurities. But there it is. I don't think I can do this. It's hard enough to deal with all the kid stuff; but to add a husband and dad in full-time ministry on top of that goes beyond my capabilities. I wouldn't change my kids. I would never change who Judah is. I wouldn't change the man that Jared is. However, I would change some of our circumstances. I would change what life looks like right now. I would change the mom and wife that I am more often than not. I want more time in the day. I want to have fun and relax. I want to be fun and relaxed. I want to be rescued. I want my husband, my best friend, to be home. I want him to have fun and relax, to be fun and relaxed. I want our family to be strong, committed to each other no matter what, always on each others' sides, loving and supportive of one another, and able to fully enjoy each other and have a great time together. And right at this moment I want a pleasant life. Right now I want to be rescued more than I want intimacy with Christ. That's an ugly truth. And it's steeped in my condition. I need a good dose of positional truth. It will come. I know God will minister to me. I know He loves me. I know He wants me. Ugly and all.

The kiddos call.....

The Lion

I found something so cool yesterday that just re-confirmed that God really did name Judah! I've always believed that He gave us this name for Judah Matthew. His name is a reminder and a statement of faith that God will indeed be praised - no matter what - and that he is a gift of God - no matter what!! It's part of our and his testimony to others. His name was no accident! Since he's been born we've talked so much about the Lion of Judah. Our older kids know about Him, and I tell Judah that his Lion, his Protector, his Warrior is with him each time he's in the lab, or undergoing some other uncomfortable or unpleasant "procedure". One of these days he's going to have his own little lion to take with him as a visual reminder, too:) Anyway, what I didn't know until yesterday was what God said about Judah in Genesis 49:8ff. Jacob is blessing his sons, and Judah is 4th in line. He starts by saying that his brothers will praise him and that he will be a victorious leader. Then, depending on the Bible version (I'll go with NIV here), Jacob calls him a "lion's cub" in v. 9a and then in 9b compares him with a mature lion. He goes on to call Judah a ruler, and then gets into some future stuff... Jesus came from the line of Judah. So, my little lion really is. I'm excited to do some more studying on the subject of lions, why the comparison with lions, why is Jesus called the Lion of Judah, etc. I just thought it was so cool, though, to read this little section about Judah in Scripture, and think about my little Judah. He may appear to be the "underdog", but he's really a little lion...and He's got the Lion with him always...and He just also happens to be the Great Physician. I think Judah's got the advantage:)

Another Sunday - Take 2

My brain function being considerably diminished as of late caused me to forget to journal about a very important part of our Sunday worship at "home": the fellowship afterwards! How could I forget to write about the wonderful, very personal connections we made with some of our family there?! Especially since I came away feeling more encouraged than I had in a long time!! It was sooo encouraging to talk face-to-face and hear from some special women that they are indeed still praying for me; that they love me; that they are encouraged by me, of all things! It's amazing to hear that our story, Judah's journey, is being used to encourage others in their faith. And that serves to further encourage me and spur me on! So, I really just wanted to get this down here, so I remember how God and this family blessed me so personally. And how I felt refreshed and rejuvenated after just a short time with them.

Saturday, September 12, 2009

Time for a new ride...

It's official. We need a new van. We've been joking for over a year now that our van has cancer. This thing has been supernaturally protected for 5 years! We've put 110,000 miles on it, and have had no major problems. Just normal wear and tear. No more! Jared has taken it in for the last time...I think. The belt falls off. When he took it in to get it fixed again (thanks to the guys at Walker who haven't even charged us the last 2 times they've put it back on - donuts to be delivered to you on Monday morning!) they said it was time to get a new van...today. What does this have to do with Judah...or this journey God is leading us on? Kind of everything. Can't take very good care of Judah if I can't get him to his appointments. Scary, yes. BUT GOD... I'm not even worried about it. (Well, anymore. In all honesty, I was a little discouraged last night. God worked pretty fast in me this time around!) God knew this day was coming; and I believe He has already set into place a means of providing a new van for us. I'm not exactly sure how it will all work out. I am totally sure, though, that the van we end up with will be a direct and perfect provision from the Lord! We have no way of making this happen for ourselves. It will be God guiding us to the right van, and providing the funds needed to buy it. It's another opportunity for us to trust Him and practice total dependence on Him! He knows our needs even better than we do. And I am confident that He delights in meeting those needs for His children! So, what could be another stressor or reason to be discouraged or frustrated, is turning out to be a pretty cool situation to be in. Another chance to see God work in ways that are totally beyond us! And just so no one is confused, let me just say again (because it's been awhile), that this whole attitude and perspective is NOT me! This is Christ in me; giving me confidence and assurance, and encouraging me. He continues to draw me to Himself. Another lesson in total dependence is a great way to do it!

Doctor & Therapy

Judah had another weight check on Wednesday of this week. I was very excited (jumping up and down at the doctor's office, actually) to see Judah tip the scale at 9 lbs. 1/4 oz!! I knew that if he was getting what he should be he would be about 9 lbs. Well, he's no over achiever, but he definitely got there! I also talked to the dr. about Judah's Prevacid - the medication he's been on for acid reflex. I've never liked the fact that they put him on it in the NICU, and was never fully able to understand why. As a matter of fact, the dr. that ordered it didn't really want to either, but it was a kind of "general consensus" among the other neonatologists in the NICU. Anyway, I was willing to trust the drs. at the time; and with everything else we were dealing with it didn't seem like a major thing. Since then it's just been at the back of my mind, but still not a big deal. Well, his prescription required doctor's approval to be refilled again, so I thought now was the perfect time to discuss it. Judah's pediatrician was "on my side". Judah's growing well and shows no sign of problems with reflux. He's more at risk for complications from stomach acid coming up because of his cleft palate, but at this point the dr. thought it was a good idea to wean him off the med. So, in 2 weeks he'll be down to just 3 drugs - no more Prevacid! Yippee!!! By that time we'll be back in for a well baby check and can discuss how he's doing off the Prevacid. I'm so happy about this.


Later that day we had therapy. His OT and teacher are always optimistic and pleased with how he's doing; but I'm starting to get a little discouraged. Maybe a little frustrated. Judah is 3 months old now, but still very much a newborn. And while he's made some progress, it seems to me to be very slow. I thought I had dealt with any expectations I had for him and thrown them out... I guess I didn't really. I want to see him tracking me and watching my movements. He does a little, but... I want to see him holding up his head. I want to see him reaching for things and playing. I get discouraged when I have to tell the therapist that there hasn't been any or much change in an area. Must be time to reevaluate my expectations...and then throw them out again. I'll have to learn the balance between having healthy expectations for him and not expecting too much and then being disappointed. No, discouraged is a better word. I will never be disappointed in or with my little lion.


And on that note, let me finish this post by saying that that little lion is so smiley and happy and content. He's such a joy! A little bundle of precious wrapped in majorly adorable! God has been so good to us in blessing us with Judah. I know I have a lot to learn, a long way to go in "mastering" the art of mommy-ing this special little kiddo, but I continue to believe beyond a shadow of a doubt that God's plan for us and for Judah is perfect. [And that includes His plan for Judah's development and growth.] He made no mistake when He made Judah. Judah is a perfect little image-bearer, beautifully reflecting God's glory by simply being.

Wednesday, September 9, 2009

HE'S LAUGHING!!!

Yesterday afternoon I was holding Judah on the love seat and the Boys were playing nearby when Lydia started calling me from the bathroom. I put Judah on the floor and ran to go help her; of course the Boys instantly got on the floor with Judah. A minute later I thought I heard them blowing raspberries on his tummy. Before I could go see what they were doing to their baby brother, Eli came running into the bathroom, telling me I had to come see! They were indeed blowing raspberries on that tiny tummy - and he was LAUGHING!!! I'm not sure I've ever heard anything sweeter than Judah's tiny little laugh! I just couldn't believe it! It's amazing that I wasn't crying all over the place... I was just so excited!

TO GOD BE THE GLORY!!!




Mini-Vacation

This summer has been long and difficult. There have been some bright spots, but when I think back over the summer what stands out to me the most is all the hard and sad and new. Not to mention the fact that Jared's end-of-summer & back-to-school schedule was fuller and more demanding than last summer's. We hadn't been planning on a trip back to Wisconsin before Christmas; but all of our friends here were going on vacations all summer and "getting away", and we realized that we really needed that, too. We decided to spend a few too short days with our family over Labor Day. I'm so glad we did! The drive out was a challenging one - pumping several times in the van and washing out parts in a truck stop bathroom (ew); extra potty stops for the somewhat newly potty-trained princess who decided that she absolutely would NOT go potty in a dirty bathroom (an inconvenient surprise, but one that made Mommy happy all the same); trying to get our portable dvd player to work, then watching our 3 older kids all trying to see 1 monitor because the other one is broken; giving Judah meds in his car seat - but the time spent with family, blood and otherwise, was well worth it! It did this Mommy's heart good to hear aunts and uncles, and such dear friends ooh and aah over her darling little boy! And just as good was seeing the other 3 get loved on and have so much fun playing with their cousins. It was a time to reconnect with just a few of the people we love the most. It was encouraging, uplifting, fun, restful - in a "new normal" sense of the word - and yummy:) We had the opportunity to have a family date at Oscars. Way special, because nobody does frozen custard like Oscars. Nobody. I had the privilege of spending a few hours with my sister-in-heart. We were so blessed by a visit from our most favorite Madison-ites! Of course we loved the time we had with our siblings and our way-too-adorable-for-words nieces and nephews! I also had the chance to go out with Mom, my hero. A "date" with Mom doesn't always happen; actually, it rarely does, so I feel even more blessed to have had the chance to go shopping together for even just a little while. And when I say shopping, I mean finding great deals on brand name clothes at GoodWill:) I feel like I got a whole new wardrobe! Well, not really, but close. Overall it was a great weekend, and at the end of it I was able to honestly say that it was refreshing and served it's purpose of making us feel like we "got away". And since I know that there are a lot of people who will read this, I have to close by giving "props" to Mom. God blesses me and my family continually through my mom. This weekend felt like a vacation because of the time and effort my mom put into it. Meals, clean-up, time with the kids -acts of service that I do not take for granted, but am so thankful for. And thanks to Dad, too, for his enthusiastic performance of a hungry restaurant patron, and for making a little boy's day by passing down some history in the form of the "little car trophy". I love you guys.

Sunday, September 6, 2009

Another Sunday

Aaaaahhh... That's a very contented sigh. It's Sunday again, and today we had the privilege of worshipping at our "home church". I love this Body. It's a small-ish, cozy, inviting, warm group of believers that meets in an environment to match. I was so looking forward to worshipping with this family this morning, and I wasn't disappointed. The only bummer was the absence of our pastor and his wife. We live 500 miles away now, but they still shepherd us. That's a love and commitment to Christ and His body that goes far beyond their local fellowship. As it should be. We're all family. And each time we come back for a visit, even though it's been months, we are welcomed back as family. That's only a part of the "healing" that took place for me this morning. We had the privilege of sharing with everyone a quick update about what God's been doing in our lives. I count it a privilege because I love telling others about what God has done for me and in me. He's done an impossible work in me - He's changed me, and continues to do so - but God is in the business of the impossible. I love telling others about His goodness and faithfulness; about the gift that He's given us in Judah. I love talking about Him. I'm still trying to figure out why others want to listen to me, but I'm glad to talk to whomever will! It was a good time of worship through music. Simple and heartfelt. I loved the words that we sang and the Scripture chosen to compliment them. Then there was the message. I was reminded again that regardless of the messenger, the message and Truth of Scripture is incredibly powerful! I don't know why I was struck with that truth, because I enjoyed this particular "messenger", but it was a cool reminder. God's Word is phenomenal, and "bigger" than anyone sharing it. The message was about everything we receive from God at the moment of salvation. Positional Truth. I could sit under teaching like that every day of the week! My heart felt full after that message. It was a tremendously wonderful reminder after everything I've experienced this summer. Many times I have lost sight of the thoroughness of God's salvation extended to me. It's all there! Everything! I am so perfectly equipped I don't even know what to do with it all! Appropriation. I wish I knew how to do it better.
It was a great morning. Thanks, Family.

Monday, August 31, 2009

Vision Update

I finally heard from Dr. L. That was a hard wait. He had some very good news, though, so he redeemed himself:) Judah's brain stem and chiasma looked NORMAL!! Meaning he is not visually impaired and his muscle weakness will most likely be temporary and be resolved in time with growth and therapy. The only question mark left is related to the occipital part of his brain. His white matter here is thin, which means he's at risk to have brain-related vision loss later on in life...however, he has had kids with this same problem, and they're fine! He's very optimistic that Judah will be, too. The lack of focusing and tracking are developmental delays, so we will faithfully "work" with Judah doing therapy stuff each day (really, it's just structured play - I love it) and he will hit these milestones on his timetable.


On another happy note, Judah is smiling more and more! Every day! Thank the Lord for each miracle smile:)

Sunday, August 30, 2009

I blew it. I purposely ignored a great opportunity that God handed to me on a silver platter. Gr. I had Judah at Childrens on Friday for labs again. [On a side note, the girls at the ACCESS center where we check in now recognize us, and this last time one actually used the term "frequent flyer miles" in reference to our walk down the hall to the lab. Not sure how I feel about that yet.] Anyway, when we were in the room for his draw the tech...nurse...blood-drawer...what is their title anyway?...asked if Judah had any siblings with Biblically-based names. After I told him about Elijah, Ezra, and Lydia, he asked if my tattoo was in Hebrew. I told him no, but we liked the script because it looked like Hebrew. Here's the part where Bethany was a complete evangelistic failure. You would think that I would actually tell him what my tattoo said! Hellooo! I'm so mad at myself. And I knew it, too, when we were there. But no. So, I sort of tried "making up for it" in a sense by telling him that we talk a lot about the Lion of Judah. (I'm thinking in the back of my mind that maybe this guy knows Jesus, or at least about Him.) But, again, I blew it. Did I ever say WHO the Lion of Judah IS?!?! I'm ashamed of myself and embarrassed to even admit this. Even if that guy already knows Jesus, this could have turned into an opportunity to encourage him or challenge him spiritually...or even make a cool connection with another believer. I'm such a tremendous dork. I feel even worse because one of the points of my tattoo is to tell people and have a chance to share with others the beauty of "BUT GOD". *sssiiiggghhh* I'm so thankful for God's grace and forgiveness. I'm so thankful that He'll give me lots more opportunities to talk about Him. And I'm so thankful for the promise that He will never forsake or deny me. He's amazing. He is so amazing. I pray that next time I won't be able to keep my mouth shut about Him.