Wednesday, August 29, 2007

You did it BABY!!!

The end of an era! I can't believe we are done. Can I just say that again? (Of course, it's my blog) I CAN'T BELIEVE WE ARE DONE! My precious Owen Elijah has been a trooper (as displayed below).

So, for those of you other unstable weepy ones out there, I bet you'll understand when I say, it was a complete emotional release when I realized we are done "with Chicago trips". I was kinda sad all while being ecstatically (new word?) happy and feeling so blessed that we made it through more trips to Chicago than I can count on all my fingers without too many hang ups or issues-certainly no added expenses like speeding tickets for example (a few scares maybe, but no tickets).

I am waiting for the before and after photos from Crainal Tech, but I know he looks FABULOUS DARLING! Just fabulous! We have proof...we have a "head sicle". Yep, it's a wooden mold of Owen's head on a stick prior to beginning treatment. A little wacko, but it's a parting gift for our three grand purchase, and yes, we also get to keep his stinky band as a memento of our efforts.

Well, I guess that's all for now. What will I do without my part-time job of weekly chauffeuring trips? I'm sure I'll find something;-)

Another parting gift, a high class certificate of his accomplishment-his first of many diplomas!!!
Ahhhh, Owey and daddy are so cute!
He's still smiling...but it's early!

The tears started as the heavy cast weighs Owen down and pushes out his emotions;-) It's binkie time!
Am I cute or WHAT??? Plaster dust and all.
Bath time for the Owester!

You did it BABY! We love you Owen!

Tuesday, August 28, 2007

Mixed Emotions....

...but so stinkin' cute!!!

Just some fun Owey pictures tonight after a bath before putting his band back on;-) So sweet!

What's wrong with Owen?

I've received this question frequently lately so I thought I would post on the subject just to make a more clear update, but wordy, no less.

Of course, as Owen's mom and biggest cheerleader, I say "There's nothing wrong" with Owen. But, I will post medically as much as possible and only interject my opinions here and there.

As a recap, Owen was diagnosed in utero around 24 weeks with growth problems, that as my pregnancy progressed, Specialists diagnosed him via ultrasound with a likely fatal/lethal skeletal dysplasia (meaning not compatible with life)-and actually at one point went as far as to say that they were 99% sure that he would have dwarfism.

Once born, Owen was small (2 pounds 13 ounces and only 14 inches long) at 32 weeks gestation. He should've been over 4 pounds at this gestation. He was diagnosed at birth with SEVERE IUGR (intrauterine growth restriction) but with head sparing, which meant essentially, his head got all the 'good stuff' and his body was the result, a baby with a bigger head and smallish body. Sounds freakish, huh? Well, newborn babies are a bit alien-like anyway, but he was precious.

Since being released from the NICU as a "grower" he has seen countless Specialists and had countless tests. What we know is that it doesn't appear he has a skeletal dysplasia at all. As he has grown, he has not "caught up" nor "stretched out". His endocrine type tests for hormone stuff were pretty normal.

He had a test called a "skeletal survey" which is a full body x-ray that was looked at by at least 2 geneticists so far. They see no signs of a skeletal dysplasia (as above) but one MD did say Owen's spine showed subtle signs or possible signs of a "metabolic disorder".

So now what? What metabolic disorder? Answers here, frankly, stink.

More waiting. No clue "what" metabolic disorder-there are thousands and I have no way to even look up anything. I tried searching "spine" and "metabolic disorder" and nothing came up. I asked the genetic counselor and was told she didn't know. So we are waiting for results of MORE TESTS. I also have been waiting on "the big dogs" from Cedars Sinai in CA to see Owen's x-rays and report what they believe is "wrong", but get this....the x-rays were NEVER sent!

So very, very frustrating. When I was told this "error" was made, I was also told, they were just going to "wait" to send them now until the metabolic panel results come back-uh, no. Not what "we're" going to do. SO, I pushed for the x-rays to be sent anyway (a possible 6 month wait for results, been waiting 4 months already-now another 6 months possible, thanks!).

So , what's wrong with Owen? He's small. That's about all I actually know. He has some mild developmental delays which are typically seen with preemies anyway. We don't know if there is anything "wrong" at this point.

Owen is Owen. He's as cute as can be and about the size of a 3 1/2 month old for 50% weight according to the CDC growth charts, and a 3 month old for length for the 50% percentile (CDC growth charts). His head circumference is about the size of a 5 month old, again in the 50% percentile with CDC growth charts. All these stats are from his 9 month measurements, but he is almost 10 months old now.

He's doing the stuff he should be doing mostly. He is very social and VERY HAPPY and SMILEY!!! He laughs, interacts, etc. We have a physical therapist and occupational therapist come to our home to help him with things like sitting, crawling, working with his hands, eating, etc. It's just once per week for each discipline. It's like concentrated playtime for an hour.

I am seeking a 2nd, uh, er-3rd opinion at the end of September with another geneticist in Indy, well, at least unless, his metabolic tests come back conclusive in the meantime.

Personally, I am so VERY, VERY, VERY thankful for him JUST HOW HE IS. I wouldn't change a thing. God planned this whole "chapter"-and isn't He an incredible Author? Owen has touched so many people whether it be through the incredible journey, his beaming smile, etc.

So, to answer the question: What's wrong with Owen? Not one thing. He's perfect. He's our gift from God. Whatever challenges or difficulties we'll face, we'll try to never treat him like he has things "wrong". Lots of people face challenges far worse than being small. I pray (of course) they never find "anything" wrong. Owen's just small-and maybe he'll always be this way. We love him and find his "smallness" to be a "small" part of what makes him special and unique. Someday, when he reads this blog, I hope he thinks to himself, "wow, my family loves me so much and think I'm the coolest kid ever!"

Thursday, August 23, 2007

Good news!

These will be Owen's last ever professional pictures in his band! These were his 9 month photos! So, we'll travel up to Chicago next week for our exit appt and then Owen can wear his band for 2 addt'l weeks if we want and HE'S DONE!!!! Yeah!

I am definitely praising the Lord for this welcome news! Owen's head is looking great and we are very pleased with the results and glad we had this opportunity. If you have any creative ideas of how I can do his 10 or 11 month photos (we get them done monthly so creativity is of the essence) I would love some fresh ideas. Take care!

Tuesday, August 21, 2007

2 first days (& a lil Owey too:-)

Breakfast for Jacob on his 1st day of preschool on Tuesday August 21st, 2007...his choice for breakfast-Cocoa will we use the special celebrate plate? Oh, don't fear-mom will make due, without even a sweat on the brow-we'll have a classy bowl on plate style breakfast. TJ prayed for him and his brother's food to be blessed and threw in a really cute "thank you that it's Jacob's 1st day of school and my6th;-)" So cute...

Jacob went around saying "It's my 1st day of pwe-school Owers!" It was also super cute. Oh and say cheese!

A Jacob request to have his photo shot with Owey.
Uh, enough mom.

Placing his backpack on his hook of choice, or should I say, HOOKS of choice (he used 2 hooks so the bag would hang perfectly straight, uh-I think he may've got some of my OCD genes).
Jacob with his 1st ever teacher, Mrs. Thomas with his new blue school box.
Searching for his's the one on the lower right;-) Cute hands on hips, huh?
Jacob's classroom is the kitty cat classroom so here he is with his kitty cat name tag.
The hot air balloon board, which includes his balloon (upper left corner) and all the others his classmates and the pre-k4 class made on their "ramp-up" day. He has 13 classmates. Only 4 stay all day. School gets out a 11:30...I'm guessing it will be fast 3 hours for Owey and me and frequent "Oh my gosh, it's already 11:30 we're late" type of days. Plans to be on time today and surprise him with a trip to Chick-Fil-A.

TJ's 1st day of second grade- Tuesday August 14th, 2007 Breakfast of choice, FRESH Blueberry Pancakes, on the special Celebrate Plate, of course.
Oh, my weepy heart, soooo handsome!
Did I mention my almost 8 yr old, now second grader is the only one in his class with no loose (or subsequent missing) teeth.... weird.
Such happy brothers!
A TJ requested pix as he is ready to lave me and assume a place on the bleachers and await the mini-pep session to begin.

What would a post be without pics of the Owers? Here he is with a recent new habit-"binkie or bottle, uh, I'll take both".
"I really thought I could help mom by vacuuming, I got a bit tied up though".

At TJ's 1st day pep session. No teeth, but lots of drool and fingers in mouth.
Working on stabilization and sitting. Doing quite well...and so cute while doing it;-)
By the way, I held back the tears this am with dropping Jacob by. He started to blow me a kiss good bye, but ran over and gave me a full hug! Ah, a great mommy moment. It's just me and the "O" now-only 2 hours left after finishing this post....what shall I do....hmmmm...decisions, decisions!

somebody stop me...

a new link and inspiration on the right...verse of the day! Very cool! Know of other cool things I can add to my already super cool blog? I'd love your how do I have words highlighted so if you click em they give you more info? Thanks for any ideas!

3 posts in one day....kinda:-) making up for lost time;-P

Pregnancy and Childbirth Q & A

I'm on a posting streak...

I have never posted anything like this, but I though this was pretty funny and quite blog worthy.

Q: Should I have a baby after 35?
A: No, 35 children is enough.

Q: I'm two months pregnant now. When will my baby move?
A: With any luck, right after he finishes college.

Q: What is the most reliable method to determine a baby's sex?
A: Childbirth.

Q: My wife is five months pregnant and so moody that sometimes she's borderline irrational.
A: So what's your question?

Q: My childbirth instructor says it's not pain I'll feel during labor,but pressure. Is she right?
A: Yes, in the same way that a tornado might be called an air current.

Q: When is the best time to get an epidural?
A! : Right after you find out you're pregnant.

Q: Is there any reason I have to be in the delivery room while my wife is in labor?
A: Not unless the word "alimony" means anything to you.

Q: Is there anything I should avoid while recovering from childbirth?
A: Yes, pregnancy.

Q: Do I have to have a baby shower?
A: Not if you change the baby's diaper very quickly.

Q: Our baby was born last week. When will my wife begin to feel and act normal again?
A: When the kids are in college

So, my question is, will this normalcy thing start when TJ is in college, or when all of them are in college? Oh well.

Monday, August 20, 2007

Feeling neglected?

Psalm 119:11

Your word I have hidden in my heart, that I might not sin against You.

TJ is back in school...blah, blah, blah. That's what I've felt like blogging for the past week- I've been BLAH, BLAH, BLAH!

So, I didn't blog. Then my blog buddy Tonya (see Owey's blog buddy's link on right) blogged that she's been feeling that way so she didn't blog either. So, enough was enough and here I am again-aren't you glad. On this note, HELLO, HELLO (eerie static sound) Cat, are you out there? Blog again already!

I recently watched the new series game show The Power of 10. Here's the thing...I think I may not be "normal". It's a show about guessing about what percent of Americans would say for example "they've ever kissed a dog" or "they way themselves every day", etc. I am always soooo wrong. So, should I gauge my "normalcy" on a game show, probably not, but it's hard to not feel normal.

Why does it help me so, to feel others experience what I do? See, here I am contemplating deleting this entry. I'm insane. I thought it would help me to blog about dieting-not so much. I feel like a failure (maybe because I have, hmmmm.)

But anyway, TJ is back in school and Jacob starts preschool in the morning. This time last year I was on bedrest, my mom had Jacob, Owen was in my womb and I spent my days alone.

I'm having a hard time pushing past "what happened a year ago". Don't get me wrong...I feel INSANELY blessed to have Owen crawling around under foot, climbing on the fireplace, and pulling on the curtains (a Valiant boy 1st). I am glad to have Jacob home with us and now to the next step in life....preschool-what a big boy! I am really happy TJ is in school (for him, not so much for me, cause he is a huge help to have around-even to get to the bathroom without having to lock Owen up). What I'm most happy about is that we are so blessed to have TJ at Faith Christian school, and Jacob starting at Faith Christian Preschool.

Just tonight we were going over TJ's memory verse with him and asking him what it meant (I was asking b/c I wasn't so sure I understood the verse). How humbling it is to have your 7 year old giving you your Bible teaching. Anyway, we were using the verse above asking him why we learn Bible verses. He did an incredible job of answering much like the verse Psalm 119:11. What a testament for me...what a model.

What a tangenty (sp?) post? Sorry. See, need to delete, need to wait to post on a more stable day-did I just type STABLE? Ugh.

As if my 3 yr old's first day of preschool might be more stable than today? I think not. Speaking of today, we were supposed to go to Chicago for Owey's band check-we are in the FINAL stretch, I think.

But, the weather was too crazy with torrential down pours and storming so we delayed it to later in the week. Double ugh. Already forgot about Jacob at preschool and double scheduled.
Oh well, I'll figure it out.

On the Owey's home front...prayer request-Owen's having lots of choking/gagging spells. Mostly on his own saliva/spit. He also chokes on certain textures and of course, on clear liquids. I've been "wishing" this problem away. Hoping with growth and development he would "outgrow" it. But, it's actually worsened. So, we have a feeding evaluation coming up. In the meantime, frankly, I'm worried about the little booger. I try not to worry, but when he chokes, IT'S SCARY! And, it scares him. I need to journal the episodes so I know how often it really occurs. So, I'd appreciate your prayers. Also for me, since I'm having the mommy blues with the kids off to school, etc. Is that normal? Do other moms get "blue" when their kids go to school?

Speaking of that, let's talk more about feeling neglected...oh wait, I'm the one who felt neglect. I'm apparently insecure (stop typing, stop typing!!!) (and insane as I type to myself what I think) as while I neglected my blog, it seemed no one missed me. I like comments. Yep, definitely insecure. Better get some sleep so my eyes are only dark in the morning from being weepy for Jake off to school and not for being tired too-oh, who am I kidding, do I think it really matters? :-)

FYI Much of this post was for your entertainment. Please don't take me too seriously, nor schedule me an appt with a Psych MD;-)

Saturday, August 11, 2007

Almost there and a penny for your thoughts...

Oh my big boy! I can't believe the progress he's made in less than 2 weeks. He has gone from a complete aversion to this knees tucked position to trying to pull to it himself. If I put him in this position, he will hold it now for a few seconds as he did for this photo, instead of what he did do, which was cry and resist his legs being "tucked" by flailing (sp). He's just doing so well!

Now for a quick "his life flashed before my eyes" story- A penny for your thoughts. For months, I have been telling the boys to keep all things small picked up and even been as dramatic to tell them Owen will DIE if he gets any little toys, etc in his mouth. So, today, just before Jake went outside, he gave ME 2 pennies and said to keep them for him. As things turn out, I'm not a very good keeper apparently. I set them on the arm of the couch where I was sitting. I had been up and down and in out out numerous times. I think Owen was even in bed (safe) when Jake first turned the pennies over to me. So anyway, I was sitting back at this spot (on the couch) and Owen was "crawling around". In a flash, I heard him choke, literally 2 feet away from me and I moved like lightening to his aid and saw a penny on the floor in front of him and looked to they SPOT where I had put those stinkin' pennies...they were both gone and I gasped oh my gosh! And Tim and Jacob rounded the corner from the kitchen in another flash and dashed to my aid, knowing it was serious. I had visions of performing the Heimlich on my poor lifeless baby and of obstruction surgery if it got caught (and that would be a good case scenario, as it meant he wasn't dead from choking). Tim immediately began searching for the 2nd penny and I watched Owen closely as I did it...yep, I blindly performed the finger sweep of his mouth, praying I didn't push the penny back further if he did have it in his mouth. There was nothing there so I took a deep breath and Tim asked what we should do, I said "watch his poop for that penny if we don't find it"...but to the PRAISES of The Lord ....hallelujah-we found penny #2 in between the couch cushion. If you hadn't followed, he (Owen) had stopped gagging before the finger sweep and I assumed he either had it in his mouth or had swallowed it. (I know it was a little confusing in all the drama.)

Oh the drama. I actually scolded Owen afterwards at how scared he had me and how I nearly had a heart attack. I think he felt a bit of remorse and I doubt he does such a thing again-or maybe 'not so much'.

Can you imagine? UGH!

Oh and to really finish off the story with a bang, when Tim told Jake what happened, but before finding the 2nd penny, he said "ohhhhh, I was going to save those but too also."

Wednesday, August 08, 2007

A year in the making...

August 6th, 2006...

This was the day that our "Owen" journey really began. What a difference a year makes. I wouldn't have (and couldn't have) dreamed a year ago when I was hospitalized with severe pain due to a bum gallbladder and then the subsequent extreme high blood pressure (I was only 19 and 1/2 weeks pregnant with no history of high blood pressure ever) that I'd be where I am today.

Today was a day where my biggest worry was waiting in a crowded MD's office at Riley Children's Hospital for an ear recheck (for 2 hours). Today was a day that I had to deal with an incredibly fussy, tired, and hungry 3 year old.

Today was a day I had to take frozen pee with us to Riley so Owen could have more testing (his pee, use your imagination as to how I collected it). Today was a day where I had to try and explain to a lab tech that the not-so-very frozen pee was as good as it gets and he need just run the test and stop bustin' my chops that it wasn't perfectly frozen-get a grip man.

Today was a very patient day for me. Even with all the adversity I experienced, none of it mattered because I am not on bedrest praying and pleading with God to keep me well and more importantly give me a healthy baby. I was not lying in a hospital room wondering why my B/P was looming dangerously high. I was not worried about how to take care of Jacob or get TJ off to school. I am not fearful that I may have a seizure or my organs shut down due to HELLP syndrome. I did not worry about my spouse staying up past midnight paying bills, cleaning house and planning my care. I did not have to lay around wondering if the kicks I feel would result in a baby to hold-today I got to experience the precious joy of Owen standing in my lap. I got to kiss his face and head, stare into his eyes, watch him smile and sleep-and even hear him giggle and say "ma,ma". I sat and smelled him. I bathed him. All things last year at this time I wondered if I'd ever get to live these privileges. This time last year, I couldn't have imagined a better today.

Today I praise God (again) that He has blessed us so abundantly and even performed a miracle in giving us Owen---a baby once not expected to make it to viability (24 weeks gestation), a baby once not expected to take his first breaths, a baby once not expected to live a healthy life...

What a day today has been. Today was a good day. A very good day.

Friday, August 03, 2007

Our rolling, growing Owen! 9 month update

Again, another month gone. A nine month old! WoW! A nine month old. It was nearly one year ago when my World (and my families) was turned upside down for the Owen roller-coaster ride. I'd relive it all (including the tears, dread, worry and weekly trips to Chicago) for this Miracle baby-our Owen. But, more on that in a later post.
Owen is doing so wonderfully! He weighs 14 pounds 3 ounces. He is 14 5/8 inches long. His head circumference is in the 50% for 9 mos and 25% for age adjusted 7 months. His height and weight continue to hang under the 3rd percentile on the growth charts even age adjusted, but I am so at peace with our lil' guy! I mean-can you imagine a bigger, cuter Owen-not possible.
In case you wonder what this means practically, if he were 7 months old, he should weigh almost 19 pounds and be over 27 inches long if he were in the ave range of normal (50%).
I was in the church nursery with him today and it was really eye opening to compare him with the other 6-8 month olds. He was so "petite" while the other babies were-well 'hosses' (said with love as they were all adorable, just ginormous!). He was the smallest, oldest baby. He has a great disposition and loved the different exersaucers and such. The other crying babies didn't even bother him. He was so easy going. I wasn't though-as I couldn't leave him in the end and stayed to "help" out. Pathetic, I know-but I'm admitting it.
Here's one excuse. So, the super cute pics above show a slight red mark on his forehead...ugh. Band troubles. We have been "graduated" to 2 week checks but at just 9 days, his head has just grown too much and it needs another adjustment-so we have to wait for the redness to go away and get an adjustment and so on. Point here is, my "on-the-move" genius baby is VERY used to having "head protection" and he knocks his head around like nuts with the band on. But now, with it off, he doesn't quite know how to finesse his movements to protect his precious noggin and a hard floor in the church nursery isn't the place for him to discover "finesse". Ok, so it's an excuse.
Anyway, he is SOOOO on the move! He rolls, scoots, 'swims' on the carpet to inch along, spins, and does the spectacular Olympic champion baby "super roll"-yes, it's the one where he's been playing and catches me watching him. He smiles and starts rolling one after another as many as space permits with an obvious look of "Hey, my mom was watchin' me, I'll give her something to 'watch'." He also is a crazy play baby in his exersaucer, spinning, jumping, etc. He can sit pretty well. He's almost figured out how to escape his bumbo seat.
As for eating: He's still pretty much a newborn (I say this with much displeasure and grumbling). He could easily eat 4 ounces of rice cereal thickened formula every 3 hours around the clock. The pediatrician said we can start withholding nighttime feedings if we can endure the crying. We'll see. He isn't really 'into' baby food and chokes, sputs and sputters-so he is going to need a feeding evaluation. That's TBD.
He coos, giggles, LOVES peek a boo! I believe he is a Nascar fan too. He's a master binkie boy-as he can manipulate his binkie and chew it, 'talk' and smile around it, etc.
He's pretty much outgrown his swing and is exclusive to floor time. He also sleeps (when he sleeps) on his belly or side. It's so cute how he nestles in with a blankie and his binkie or bottle.
Anyway, enough going on about his 9 month accomplishments. Keep watching for upcoming posts on our story a "year in the making" and the dieting woes.

Thursday, August 02, 2007

Blog Neglect

So, yeah-it has been a mere 2 weeks since I last posted. I am a slacker, I know. You'll be relieved to know, all the missing posts are listed and follow. I intended to post more but, it just didn't happen. Things are way harder as a single parent. It gives me a whole new respect for parents who go it alone. Plus, as I warned him I new brother in law, Jason was talking to me about Owen and I said "I thought you read my blogs" and he said "well, I do-but there are just so many words...." He's been marked off my Christmas list-well, unless the knives are ordered-then I may reconsider :-> evil cackle...

Anyway, everything is good and we are very excited to get "daddy" back tomorrow. I'm catching up since being out of town and working like 5 days straight between PC and the hospital before leaving town (planned in order to make up for the time off and out of town).

Owen will be 9 months old tomorrow and have his check up. I can't wait to update on his growth and progress. As a sneak peek, I will share our biggest new news...

Owen is CRAWLING!!!! Ok, kinda. The PT says it a modified army crawl. Which makes me laugh because the "army crawl" is a modified regular crawl babies do before they can "officially" crawl hands and knees. None the less-I think it's awesome that my "would-be" 7 month old is getting where he wants to go with rolling, creeping forward and even sliding backwards on his back-that's a hoot. I wish I could figure out how to upload "movies" as you would all get to see his hilarious antics. His crawl looks like he's an Olympic swimmer-but on carpet. The PT credits our time in WI where Owen spent more time than usual on his belly on a smooth surface as my mom has wood floors and Owen was a real mover an shaker on them. He could spin 180 degrees on his belly in a blink. It was so cute! He was so overstimulated by that floor, but go propelled him to come home with new-found abilities that traveled back home with him! I'm so proud of him! He's been such a trooper!

Wednesday, August 01, 2007

Tigger and me

The newest band theme. It is so cute with sayings like "no bothers or cares" and bouncy, pouncy, trouncy. It's one of my favs so far! I liked it so much I made it the theme of Owen's 9 month photos. They were so good! I can't wait to share when they come to me email!