The Super Bowl must be inspiring to my little champ because he reached another milestone during the game! I had him lying on the couch waiting for new pajamas, and he started kicking his feet more. Lo and behold, next time I looked at him he had found his feet...by himself...and he could reach and grab his toes!! Never thought I'd be celebrating an 8 month old finding his toes, but celebrate I will! Good job, Champ!!

A bit of Good News!

I got a call from our nurse at the CDC yesterday to confirm some follow-up appointments for Judah. She let me know that his urologist looked at his ultrasound results and said that there has been some improvement in Judah's kidney reflux. Because of the severity of his reflux, there's only a 5% chance that he'll outgrow it completely, so any improvement that does happen over the next 4 1/2 yrs. (the repair surgery will be at age 5) means that there's less to repair surgically. Yay!

News Flash: Judah just amazed me! I laid him down on Lydia's bed so I could help her in the bathroom. I had put his pacifier down next to him, although I'm not even sure where. I don't know if he could see it, or if he just felt it, but when I came back to get him he had the pacifier in his mouth and was holding it there with his hand! He also had his pinky in his mouth, too, which was so adorable. This is so big for him! Go Judah!!

Happy 8 Month Birthday, Judah!

Childrens Hospital Developmental Clinic (CDC)

Yesterday was another huge, exhausting day. There at 8 AM, home at 3:15 PM. It was good, though. We saw 8 different kinds of specialists and health care professionals. We didn't get a lot of questions answered, but we are on the right track to resolving some issues that center on feeding & Judah's lung. To recap...

Pediatrician/Nurse Practitioner - We saw the NP. She was very nice & very helpful. We reviewed Judah's history (and when I say that, I mean we went over every page of his own personal history book) and then focused on our main concern: weight. I've had so much pressure from his regular ped. about his weight/growth & eating. The endocrinologist, though, isn't concerned. So Jared & I haven't really been sure what to think. We're not concerned like the ped., but obviously Judah - weighing in at 12 lb. 9 1/2 oz. & 23" long yesterday - is tiny for an 8 mo. old. He's happy, content, & pretty healthy, so "failure to thrive" seems ridiculous to me; but I don't know how to advocate for him and respond to the pediatrician about all this. After talking with the NP extensively about all this, including a feeding log I've kept for Judah & our concerns about his acid reflux, she narrowed it down to her main concern. The spot on his lung, which could actually be aspirated milk. Judah may be a "silent aspirator" - a little kiddo who aspirates what he's eating without any outward show of it, i.e. infection, pneumonia, choking, problems swallowing. The first thing to do is rule that out. So, we now have an appointment next week at another multidisciplinary clinic at Childrens: the Aero-Digestive Clinic. There we'll be seeing a dietitian, a GI specialist, and a Pulmonologist. Judah will also need to undergo a swallow study to determine exactly where every bit of milk is going. Anyway, back to the CDC.

Dietitian - The NP went over everything we talked about with the dietitian, who then came to see us. She was very helpful as well. Based on Judah's size he is getting all the calories he needs. And, based on his length, he is in the 66th percentile for weight. Meaning, he's the perfect size for his complicatedly sick little self, and it has nothing to do with his age!! She also gave us some samples of new formula that would be gentler on his system. Bye bye high calorie, too rich, prescription Neo-Sure! So, with a gentler formula to supplement with, and a higher dosage of Prevacid prescribed by the NP, Judah's acid reflux should be under control again, and spitting will hopefully no longer be uncomfortable for him.

NeuroSurgeon - After reviewing Judah's history, this dr. basically said "Call if anything changes". Love it!

Neurologist - We didn't have to see the clinic's since we just saw another Childrens neurologist on Monday. Her recommendation was to come back in another 6 months and definitely keep our MRI appt. for June. At 1 yr. old, that will give them a much clearer picture of his brain & what parts are most effected by the way it developed inutero then what they got from the MRI after birth. She also said that Judah is very delayed and that's not a good sign. Really? Huh, I hadn't noticed. (Anyone pick up on the sarcasm?)

OT & PT - These were fun. We got some good encouragement about where Judah's at & what we're doing at home. Got some new ideas for exercises. They both recommended that PT become a part of his normal therapy soon.

Genetics - We always love seeing our geneticist! She's fun and honest and loves Judah and makes us laugh and she's tenacious and determined and doesn't give up! No news about the syndrome, though. She ordered a very sophisticated, not often done blood test when Judah had his surgery in December. She had high hopes for this one because Judah was such a good candidate for it. It came back normal. She has now determined that Judah's syndrome was caused by 1 - ONE - gene. There are 20,000 genes in every cell in the human body. Ya, good luck finding the little rebel! More than ever I believe that it will be God alone that makes this syndrome known. And since He pretty much works on a "need to know" basis, we just might never know. We talked about new things that have developed with him. And new finds, like a bifid 5th right rib. Never showed up on the skeletal survey, but the recent chest xrays showed that Judah's 5th rib on the right side actually splits off into 2. It's not broken, it was just fashioned that way. It's another part of Judah's uniqueness. We'll be seeing this specialist again in July when we go back to the Boys Town craniofacial clinic.

Urologist - This was another quick visit, but a good one. We really like this dr. He's gentle, kind, soft-spoken, and his excellent reputation and testimony precedes him. He examined Judah, reminded us that he needed an ultrasound of Judah's kidneys, bladder, and..."other" that day, and then said "See you in 3 months". (At 2:00 I took Judah to Radiology for that ultrasound. He has one every 3 months so the urologist and nephrologist can see what's happening in that area, and determine how he's developing and what kind of treatment he might require and when.)

Social Worker - This very nice lady just needed to make sure that we were handling everything ok, had everything we needed for Judah in the way of help and support, and answer any questions we might have. She didn't seem to be too worried about us though. Apparently our testimony precedes us as well. She said she had been told that we have a "spiritual background" and it sure does help to have a "Higher Power to call on in times like this". Well if that's not an open door I don't know what is! I told her that it's God grace that carries me through each day, and that His grace is perfect for whatever each day holds. That was a pretty short meeting, too, but a positive one.

So now we wait for the next clinic, and hopefully get some answers about Judah's feeding and lung questions. Didn't know we had questions like this until 2 days ago, but I'm thankful that we have a plan and a fast-approaching appt. The NP told us it was amazing that we got into that Aero-Digestive clinic so quickly. Ya, I think God is amazing, and He's the One that paves the way for His little lion.

Thanks for praying for us. Today I need strength & energy. I'm exhausted. BUT GOD... His strength is made perfect in my weakness, He lifts me up and enables me to soar, and His arms are the perfect place to find rest.

One more thing... Praise and Glory to the One who provided best friends and an Aunt & Uncle rolled into one who love our family and happily parade their "rent-a-kids" in downtown Omaha while we are with Judah!

Weren't we just here...?

Exactly 2 weeks after being admitted to Childrens for a virus, Judah was admitted for pneumonia. Tuesday was so wierd. Let me start from the beginning...

Judah woke up with raspy, heavy breathing and a cough. I wanted him to get a breathing treatment at the pediatrician's, so I called in. Of course I feared that another trip to the hospital was possible, but with Judah I have to be proactive. I was extremely disappointed & discouraged that this was happening on Lydia's birthday, but I knew that God was in control & had this day all mapped out for us. The ped. listened to Judah, did an RSV test, & checked his oxygen. He was at 89% - not too good. They quickly gave him a breathing/oxygen treatment, and ordered a chest xray. After his treatment his O2 was back to 100. By the time we got back from the chest xray his O2 was at 96. By the time the ped. came back with the xray results it was at 93. (This all happened within an hour.) The ped. said the tech saw pneumonia in his right lung. Since his O2 was holding over 90 at that point though, we could drive ourselves over to Childrens rather than taking an ambulance. (My, my wouldn't that have been exciting.) He needed to be closely observed over the next 24 hrs. at least. That's the 1st time I've cried on the pediatrician. I couldn't believe it! Seriously, Judah had been fine the day before. All I wanted was a breathing treatment! And on Lydia's birthday?! I felt some serious disappointment towards the Lord for a few minutes...until He graciously reminded me that He was in control, this was His good for today, His grace would carry me, His hand was on Judah, He loved us. Ok, Lord. We went to Childrens. Judah's O2 was 100%. He was smiling & cooing at the nurses. His breathing sounded better. (Like when you have a cold, and the worst part is in the morning, but then throughout the day you slowly clear up.) We went downstairs for another chest xray. Here's where the story starts getting happier. Judah has a "spot" on the upper lobe of his right lung. I believe it's been there since the NICU, but that hasn't been officially confirmed. However, when the drs. reviewed his xrays, they realized that his lung looks the same as it did in January. But if you've never seen his lung on xray before, like the tech at the ped's office, you could mistake it for pneumonia. So, long story short, Judah has a cold. A cold! We came home that evening with a nebulizer, prescriptions for ear drops and breathing medication (Albuterol), & a few more questions to ask the drs. at the Childrens Developmental Clinic that we could still go to on Wednesday. It was just a wierd day. But, thanks to some very dear friends, Jared & I, and a sleeping Judah got to enjoy dinner at Chili's while our other 3 played & and had pizza.

Happy Birthday, Lydia! I'm so glad I didn't have to miss the whole thing! And, thankfully, at 3, Lydia is still pretty forgiving about crazy days like this that happen to fall on her day.

And praise and glory to the One who did see me through that day, who brought us home within just a few hours of admit, and who continues to watch over & care for Judah intimately.

Quick Update

I can't believe it's been so long since I sat down here. I miss this "therapy" when I can't make it happen often enough. Although, it's a good sign when there's not much to write on a regualr basis. No news is good news, right?

Since Judah's discharge we've been to the pediatrician twice. He was finally put on another antibiotic for a lingering sinus-like infection. Though I wasn't at all excited about another round, and the side effects it would have on my sweet boy's little bottom, I was relieved that it helped Judah bounce back and get over all the "head cold" kind of stuff more quickly. And let the record show that Judah is now 12 lb. 1/4 oz!! Since he's not growing in length at all, he's just getting rounder:) Size 3-6, here we come...I hope!

We've had 2 therapy sessions recently, and both went well. It was the 2nd that I'm most excited about, though. Because of the strength that Judah has gained in his trunk and his progress with head control, she showed me a couple new ways we can play with him. Towards the end, I held out a little plastic doll. Judah immediately reached out, grabbed it, and brought it directly to his mouth! He repeated that about 3 times - definitely another milestone reached! Just yesterday when I had him on the bed to change his diaper he brought his knees up to his chest & kicked all by himself for the first time! Another milestone down - GO JUDAH!! Since he can now bring his knees up high enough, he rolls onto his side from his back often. We're on the road to rolling over:) These things are very exciting for us, and show that Judah is progressing; however, I wondered if there would come a point when we would have to be concerned about where he's at developmentally in relation to his age. Almost 8 months & still not rolling over, etc. I talked to his OT about it. I looove what she said! Without hesitation she said "No!" Basically, it doesn't matter where Judah is at. There is a developmental program for him at every age, and they will meet him and work with him where he's at, no matter what stage it might be. There's no calendar, no time frame, or limit. Just Judah and what he's capable of...and caring, helpful men & women committed to helping him reach his fullest potentail.

This week is another big one for us. Today, an appointment with the neurologist. Tomorrow, the plastic surgeon. And Wednesday, a visit to the Childrens' Hospital Developmental Clinic from 8-12ish. At the time Judah was born this clinic had a 6 mo. waiting list, and there are certain requirements a child has to meet to be involved. So, when he was discharged from the NICU they put him on the list, assuming that he would qualify. 6+ months later here we are, eagerly anticipating this Wed. morning. Judah will be seen by several specialists, including his urologist, nephrologist, and genetics specialist. We're also eager to meet with the GI specialists. We have lots of questions for each of these specialists, and we're praying for some answers.

God continues to meet our daily needs. Emotional, physical, spiritual, financial. He's so gracious and generous. So good. So merciful. So faithful. We are truly privileged to know Him and serve Him. I can't help but be so thankful to Him when I look at my darling boy's little face. That God would design and expertly knit Judah together for His glory and our enjoyment is beyond my comprehension. He is such a gift, just as our other 3 are! I'm a tired Mama, but it's the tired that comes from being happily busy caring for my beautiful family. To put it mildly, I am blessed.

A New Year

After wishing Jared a happy new year at midnight on the 1st, I said, "I don't know if I can do another one". I've been a little ashamed of myself for doubting. 2009 was without a doubt the hardest year ever, filled with nightmarish circumstances; and yet, I can see God's hand on and in our lives. His faithfulness, mercy, goodness, and provision. 2010 promises to be filled with the same kind of hard, but why do I doubt God's faithfulness, mercy, goodness, and provision? Why this anxiety and uncertainty...dread even? In the midst of the most challenging trials I've ever faced, I had the privilege of seeing God in ways I never would have otherwise. That doesn't excite me for this year though. Normally I'm eager to start a new year; thrilled at all the possibility and adventure that accompanies a life of following God...especially when you're married to a modern-day Abraham! But this year...

I guess I feel slightly better now that we've survived Judah's first virus. Yes it landed him in the hospital, but it wasn't as bad as my mind made it up to be every time I feared & imaginedthe possibility. The experience was...doable. God orchestrated every detail, gave me wisdom when I needed it, provided great care for Judah, and brought us home sooner than I expected. It's comforting to know that we can go through a hospitalization and everything turned out o.k. Still... This is just where I am right now. Not looking forward to a new year. Wait, before I go on, I need to just stop for a minute and think of 5 things that I can look forward to in 2010. An exercise in positive thinking...or something.

1. My 10 year wedding anniversary with the man of my dreams
2. Judah's 1st birthday
3. A real family vacation
4. Ezra starting kindergarten
5. Christmas

O.k. Well. Those are definitely things I'm excited about. But they really don't change how I feel right now. I have believed for a long time that when God seems silent and/or distant (which He pretty much does) that is when He is bringing about the most change in me, or drawing me closer to Himself in a big way. I can't recognize the change at the time, but I can see it from a distance, when I'm looking back on the time when God seemed so quiet. I'll choose to believe that that's happening now. And I'll cling to my position. I'm actually seated in the heavenlies looking down. Victory is already mine, and God's plans and purposes for me & my darling boy are good and perfect.

That's hard to remember in the midst of one of the hardest things I've had to deal with in the last few months. I've been avoiding this writing. I wasn't ready to process this yet...but it's time. I have been pumping around the clock for 7 months, 1 week, and 3 days. We had to buy another small freezer to store all my milk in for later use. I was committed to pumping for a year, knowing that when I quit I would have a good supply ready to use for Judah. Breastfeeding is extremely important to me. It's been very difficult - painful even - to accept the fact that I can't breastfeed Judah. I just couldn't make that happen for us, and I miss that relationship with him on a daily basis. However, I found comfort in the fact that God was still enabling me to provide for Judah in this way. About 4-6 weeks ago Judah started needing more than I could pump in a day, so we started going to the freezer. After using up what I had frozen most recently, we got to the frozen milk from September. It was thawing sour, and Judah wouldn't take it. Of course not. Without going into all the details, my milk has too much of a certain kind of enzyme in it that causes it to sour after freezing. I never knew this. I'm suddenly standing at the kitchen sink sobbing, pouring sour milk down the drain while Judah is crying, hungry. Jared ran out to buy formula, a first for us. I've had to throw out all of my frozen milk. It makes me sick to think of all the hours and sacrifice that represents, literally thrown away. And it's not just my sacrifice, but Jared's and all 4 of my kids' as well. So now... Now I'm trying to accept this and get past it. I question God about this often - daily - but have yet to get an answer. I have experienced a huge variety of emotions, all negative. I hate formula. I hate being in this position. And there's not a single thing I can do about it. I'm trying to increase my supply, hoping to get Judah off the formula, but I realize that this is completely outside of my control. I feel totally helpless. Part of me just wants to quit pumping now. I hate it and I'm tired. I feel defeated. A bigger part of me, though, is fiercely determined to stick with it until Judah's 1st birthday, giving him whatever I possibly can. *sigh* My faith and experience with Christ requires me to believe that even in this is His good. Or maybe that's Chirst in me pointing me to Himself. There's not one iota of good that I can see in this.
In Isaiah it says:
"My thoughts are not your thoughts
Neither are your ways my ways
For as the heavens are higher than the earth
So are my ways higher than your ways
And my thoughts higher than your thoughts."
I don't really know what to do with that right now...except just believe it.

And that's the beginning of this New Year.

Good News!!

I'm bringing him home today!! Yippee!! Judah has improved and is improving:) He's eating normally again, he's no longer wheezing in his chest, his labored breathing is alomost non-existent, and the doctor trusts me enough to let me care for him at home! (I have to say, I appreciate so much that the doctor that's here showed me a special respect and attention as a mom with a special needs kiddo. I feel built up and more confident.) Judah's chest x-ray showed normal irritation caused by a virus. His blood work and chemistries are normal - a huge praise considering all of his metabolic issues! The dr. still thinks RSV is a strong possibility. The test came back negative, but the culture that comes back in a few days might be positive. At any rate, it's just a nasty virus that needs a few days to run its course...without any extra medication thankyou very much! Judah needed a little extra help to get over the hump, but I'm praising the Lord and giving Him the glory for enabling Judah's body to fight this off. I have always feared his first sickness a little, wondering what it would look like for him and how he would handle it. I knew that God would give us the grace we needed when that happened, and I knew He would carry us...and I was right:)

So excited to get home!!

The Morning After

Praise the Lord for a good night! Judah slept a solid 8 hours last night, allowing his body to get much needed rest & his mommy to do the same! Unfortunately, we had a rough start this morning with rounds, meds, 2 rounds of lab work, and another breathing treatment, but Judah is resting now...content and happy:) I still don't really have any details as to what is going on inside that adorable, chubby little body. The doctor will be coming by any minute to round on him and hopefully give me some answers. I don't know what the chest x-rays showed or if they've determined whether or not this is viral or bacterial. As a precautionary measure he's been placed in isolation. Meaning the flu (H1N1) hasn't been ruled out...so whenever I leave his room - which is almost never - it is strongly suggested that I wear a mask. Jared balked at this a little last night when he came to have dinner with me. I told him it wasn't so bad, and we'd just look like hospital staff! The masks don't do much for kissing, though. Boo. Anyway, I'm still holding out hope that we'll be able to go home today. It depends on how he continues to respond to the breathing treatments (nebulizer), and if he's able to continue eating well. They turned off his iv this morning - YAY - so that's a definite step in the right direction. As I'm writing this a respiratory therapist is in here checking on Judah. She's having a hard time staying focused, though, because Judah keeps smiling and giggling at her. What a joy to see my darling boy interact with the staff and make them smile! He is such a charming little flirt! Little ladies man, surrounded by nurses and student nurses this morning, just eating up all the attention:)

More details later...

Thanks for the continued prayer...

GOD.IS.GOOD.

Unexpected Visit

I'm in the hospital with Judah. A visit to the pediatrician for wheezing, cough/congestion, and loss of appetite turned into an admission at Childrens for a possible infection or virus of some kind. As of now RSV has been ruled out and his blood work came back normal. The results of the chest x-rays will come tomorrow, and hopefully a diagnosis. Don't know yet if this is viral or bacterial. Judah is improving and quickly getting back to his darling little self, charming the nurses with his smiles and coos! 3 nebulizer treatments have helped some and iv fluids have perked him up. I'm hoping to be able to bring him home tomorrow, but that's up in the air right now.

More details tomorrow...

Thanks for praying...

GOD. IS. GOOD.