Maximus Evan Griffin

I promise we are still alive!!

2010-04-28T20:46:00.003-07:00

I have no excuse! I am a sorry, sorry blogger. EEK. I keep thinkin, "okay, tomorrow I will have time to sit down and blog." Then, life happens! And, I cannot lie, if it's a choice between blogging and watching LOST or Grey's Anatomy (...or americas next top model shhhh) I am going to pick my shows! Can somebody tell me when motherhood starts smoothing out?? I know, all my clients say to hang on because nothing's changing anytime soon.

It's kind of bedtime for me, so here's the stats quickly! Max didn't end up needing the Cranial Band, because our insurance ran us around so long, that by the time they re-evaluated him for a fitting, they said he was improving enough to skip it. Hooray!

Max weighs 16 pounds, and is 29 inches long. That puts him around the 3rd % for weight and 70% for height. He's tall and skinny, but our GI doc says that his weight gain is "okay". He "should" weigh 20 pounds for his height, but Max is his own boy!

He is delayed ZERO developmentally and socially at this point!! Another HOORAY! He is crawling like a maniac, saying DA DA DA for every occasion, grew two teeth, sleeping like a champ...and he grew 3 inches last month alone. Our last physical therapy evaluation gave us a shining A+.

His feeding issues are large and in charge, however! We do therapy every week with an AMAZING therapist, and Max and I work together every day. He has such a severe oral aversion that the bottle is a nonexistent tool...we are 100% feeding tube. He gags if you even put the bottle near is face! We are trying to move into a sippy cup, and working towards baby food also. He doesn't mind playing in his food ( which some kids hate to even touch it with these troubles), but dont try to make him eat it. SO we work and wait! :) The best advice I've gotten is that we are on Max's timeline, not ours; and that the feeding tube is our FRIEND (not an enemy to be in a rush to discontinue).

All together, he's just perfect. Max pulled himself to standing today actually for the first time! :)

My only complaint is that he isn't scared of strangers, and if Jordan is in the room I am CHOPPED LIVER. Daddy is so dang cool...darn him.

Okay, I'll be more creative and exciting next time, but all my friends and clients are shaming me for my slackery ways. I had to throw something up. Here's a picture of this morning, when he was suddenly up on his own! ( like always I apoligize for my loser blackberry camera moments.)
I thought you might like to see what a g-tube looks like if you've never seen one. I describe it like the plastic "nipple" on a beach ball; a little part sticks up with a flap to close it. The feeding tube attached to that!

My super sweet little boy. Max! Getting a little chubby, and looking more like a little BOY than a baby, if you ask me...that's what Jordan said tonight and I agree.

TTYL!
Claire

Family Pics

2010-02-12T20:53:00.002-07:00

Well, I don't have the full "show" yet, but Misty just posted a preview of our pictures on her blog. Check them out...I'm loving them!! I can't wait to see the full gallery- Misty is a magician.

www.mistymichellephotography.com

Thanks Misty, you're so gifted.

-Claire

I'm six months OLD!

2010-02-11T20:16:00.005-07:00

Wow! How fast this part of life has gone. Jordan and I feel OLD, haha! I just thought I'd acknowledge the milestone. This funny picture is from this morning. I was just paying some bills online while Max played next to me on the floor. He is so very aware of everything right now, especially if the focus is not on him! He never actually has "fits", but he was grunting and yelling until I picked him to check out the laptop. He starting feeling all of the keys and staring at the screen. I don't know if he was copying what he saw, but he definitely wanted in on the action.

Max and I went to the pediatrician yesterday, and did some SHOTS to celebrate his six months!! Hehe, well we did do shots...six to be exact...but not the kind that make you feel good and do regrettable things. (kidddiinnggg...). Unfortunately Max celebrated by getting his vaccinations updated. Then he proceeded to sleep the day away in recovery.

Max weighs 13 pounds, 5 ounces, and is 27" long! That puts him in the FIRST percentile for weight, and the 65th for height. Yay Max! Good job getting on the growth chart!

We are starting an overnight pump for Max's food, to see if cutting down on his daytime eating will increase his desire to eat. I'm not sure how the pump will work, with the way that he rolls all over his crib at night. But, I am willing to try anything to help him out!

Misty, photographer extraordinaire, took our first family pics today, so I will put those up soon. You should peruse her site....www.mistymichellephotography.com....its an addictive blog watching her newest photographic adventures.

Happy 6 mos Maxi pants...you are a true miracle, a gift from God, my greatest joy.

Love,
Claire

*Here's Max after a bath in his "King of the Wild Things" Towel...cute huh. :)

Mug Shots for Max

2010-02-04T22:01:00.009-07:00

We knew that Max would probably give us a run for our money as a teen, being that Mom and Dad got into every kind of trouble there is (MOSTLY on Dad's side, ehem...) in the past, but now we have official mug shots...at six months old!!
Yeah yeah, just kidding! I went to the Cranial Technologies office today, to have a consultation about Max's plagiocephaly, also known as lumpy head! :) Is he the cutest or what?! Look at those lips. Anyways, the doc said that he's not severe (yet), and a great candidate for the Cranial Restructuring Band. Here's a pic I found on google of what they look like:
See? This little one looks so happy, why not join in? I don't want Max to miss out on any rare life experiences, so this is just one more off our bucket list. Just teasin... Max will get his helmet/hat/band/whatever in about 3 weeks, and he'll wear it for about 4 months. I'm not thrilled, only because I don't want it to be a hindrance to him at all. However, it will only benefit him, and I want my baby to have every last opportunity available to him. So, who cares, bring it on! I think we are going to decorate Max's to look like a football helmet!

On a different note! Since we have been super stretch-happy on Max's neck (after some education from the physical therapist), he has become the rolling over NINJA! I finally have seen him do it many times, but for about a week, every time I would look away and come back Max was on his tummy! So, clearly it is working! I'm really happy about it, because getting to that 6 months mark had me beginning to wonder about his delay in development.
Max is also a crazy laughing machine!! I just LOVE doing anything foolish, over and over, to hear that goofy deep laugh. I still need Jordan to teach me how to shrink video so I can upload it...then ya'll will REALLY see this silly boy.

We are doing great! Not too much else to tell for now, just the helmet fitting, and tons of physical growth, yay! I got to talk to my pal Lauren today, who's baby was in FL with me recovering from CDH as well. Jude is doing fantastic, and so is she! I miss my friend...going through everything with her was something that I can't compare to any other experience I've had with a friend, and we were just strangers! wow. I can't wait for September to roll around for our one year check up with Dr. Kays so that we can see Lauren, Jude, (and Aiden and Dereck!) and all the Shands staff again.

Goooood night!!
Claire

Well it's only been 10 weeks since I blogged last...

2010-01-22T22:05:00.005-07:00

Sorry sorry sorry! I know. I'm a loser since coming home...my blogging is depraved. I am going to attempt to buy your love with a ridiculous amount of pictures of Max!! Lemme know how it works for you!
So, Max is one happy child. He is just a few days shy of 25 weeks! I am really going to try to commit to blogging more often again, more like every week or every other...because now that I AM, I realize there is just TOO MUCH to type. I'm pretty sure it'd be fairly mundane news, but the daily increases in Max's drool production are something you all should really be up to speed on. Here's his tiny head next to my big one!
So...since we blogged last, maybe you noticed...no OXYGEN! yippee!! He was set free from his O2 the week before Christmas, and what a relief. I had a good cry over it (happy cry), because it was just such a physical reminder of what he went through. It also allowed me to get him busy with the tummy time, which is SO important for a baby's muscle development. He kept stroking his face the day that I took the tape off, like "where's that other part of my face??". I wonder what he felt like, never having his face all clear before. It was also a major relief for the sake of his skin!
Max. LOVES. Jordan. I can't punctuate that enough. I am chopped liver if Jordan is in the room. Jordan doesn't even have to entertain him...they just nap together (like above) and cuddle! Haha! I have to take a moment to give Jordan his due credit...whadda man whadda man whadda mighty good man!! He has Max all on his own two nights a week and Saturdays when I'm working in my salon, and he's a pro! There something really sweet about watching a dad and his son...love my boys!
Other than getting his oxygen off, Max's other hurdles have been allergies and weight gain. He was on a special formula for his liver and fat malabsorption issues called Pregestimil, and now he's on Elecare, which is the most broken down form of proteins that is on the market. It's also hypoallergenic, and what a difference that made. Max finally started gaining and holding weight after Elecare, and his skin has improved by miles. He WAS cracking and bleeding in his elbow and knee "pits", and they're perfect now. He skill has some sever eczema on his arms, so we have a dermatologist appt next week to see what else I can do (and i've done it ALL...I am going to start a black market ring of baby products with the inventory i have.)

So, the weight gain and allergies are under control...at 5 1/2 months Max weighs 12.5 pounds, and is 25 inches long! He is in the 2nd percentile for weight...and around the 50th for height.

Our next hurdle came today. Jordan and I(and our pediatrician of course) have been trying to stretch Max's neck, because it is obviously tight. I took him to a physical therapy evaluation today....uh oh...
So Max has "scattered delay" in his development due to his hospital stay. Let me just clarify up front that it is all stuff he will grow and work his way out of...with work. He has a torticollis, which causes his head to pull to the side and he favors looking to one side. Because of this, his head is becoming lopsided. SO, he's going to have to wear a cranial remodeling band. Maybe you've seen little kids with those open helmet looking hats? It's like that. BUMMER.

I was sort of horrified when the therapist told me, NOT for Max, because he's stinkin cute even in a poopy diaper. And it will only be for about three months. I felt badly because I REALLY work HARD to rotate and move him all the time. The therapist reassured me that the torticollis can cause it, and when Max sleeps he favors that one side of his head. So by doing the therapy and wearing the band, he should be all better.

But, really...can I catch a BREAK??? Ugh oh well...I am quickly reminded that I have my little bug with me at ALL when I feel stupid and whiny like this. Thanks, God.

Actually if you look at this picture above, you can see how he's looking to his right with his head cocked over a bit...that's how he likes to stay. But not for long, kid!
Here's a few more adorable pictures to make up for lost time, friends!
Max really thinks sitting in his BUMBO chair is too cool. He just grins when you step away from his and he realizes that he's sitting "on his own". :D

Well, I've covered where Max is at health-wise...off O2, gaining weight...goofy head but we're working on it. He is truly a blessing, ya'll. Max has THE HAPPIEST disposition of any baby I've ever met...mommy-ness aside. My mother in law and mom both keep commenting on how sweet he is. He has LITERALLY never had a crying fit, and he can lay down wide awake at bedtime and put himself to sleep (thanks 7 weeks in a hospital I guess?)

Jordan and I had a really tough time when we can home from Florida, and I got hit really really hard with much delayed post partum depression. "Our end" of coming home from Florida is a whole other story, but that's just too much of a downer to blog about! :) The good news is that we are ALL doing much better and thriving now...adjusting was just really hard. I had quite the series of anxiety attacks about Max in any and every public situation! haha. Well, haha now, not at the time!! ;) All's well that ends well.

I will truly try to be better about updating...thank you for caring and asking for updates. You are such loving people. Max is wonderful, and I thank you for your prayers for that reason!!
Talk to you soon....
Claire

14 Weeks Old Today!

2009-11-23T07:26:00.002-07:00

Happy 14 weeks to my son! It really blows my mind how far we have come through all of this, and we still feel so amazingly blessed to be here with Max. I have decided this weekend that Max absolutely LOVES Aunt Jaime. Every single time he would look at her, he would give this HUGE grin. See example below:

I kind of wish that we had more to report to you, but things have been pretty uneventful! We really consider this to be a good thing because we have had enough baby drama for a lifetime!

As far as development, Max is doing REALLY well. He is looking for voices, reaching for things, coloring, simple math, and basically being the coolest kid on the block. Being a dad is really the most awesome thing in the entire world. Life has totally changed from what I once knew, but it is all for the best. I couldn't be happier and more blessed. I look forward to my "Daddy Time" everyday when I come home and love our Saturdays together while Claire is at work.

Here is Max at bath time:

And getting ready to go to Grandmas:

As you can see, he is just a smiley ball of love. His is about 10lbs 6oz right now so he is still a little small, but he is catching up quickly to where he needs to be. That is all for now!

Jordan Griffin

PS: If you are a nurse at Shands and are reading this, can you comment and leave an address or way for us to send you all something and also a way to contact Dr. Kays if possible! Thanks so much! We miss you guys, but are glad we are not hanging out everyday anymore! ;) Go Gators!

Still just chillin'!

2009-11-04T21:00:00.004-07:00

Hey all! I'm sorry, again, that we are SO bad about keeping up. We've been home for a month now, and I am JUUUST starting to feel normal. I think I sort of expected to "squeeze" Max into my world, but as all you parents know...yeah right! I realized that I am squeezing MY life into his. :) But I love it. Man mornings don't really get going until around 10-11am, because Max is such a cuddly and sweet kid. I thought I would post a couple happy pics that I just love.
This is Max in the morning...I will prop him up in the corner of the couch, and he just thinks it is SO cool to be sitting up on his own. We have a smiling party every morning. He gives a good strong, "ha", but no real giggles yet. I can't WAIT for that!
Here he is in his little sling chair thingy while I clean up our room. Just an easy kid.
This is kinda funny to me, because Max really isn't sure he likes baths yet. He screamed his way through them in the hospital, and now he doesn't yell, but just sort of stares at me. You can see his G-tube button there, and his scar right above that from his repair and later the Nissen surgery (went through the same spot). He still has a sort of bulging tummy and NO waist at the hips...a side effect of reorganizing all of his organs! It has already smoothed out some, and when he bears down he no longer has huge lumps that look like hernias pushing out! I think that's because his side muscles are buffing up from lots of play time.

Max is twelve weeks old as of this past Monday, and he'll be three months on the 10th! :) He is almost to ten pounds, which is still only in the 5th percentile, but we feel like he's looking "chubby"! I guess it's all relative. Max is also quickly catching up motor skills-wise. I felt like he was pretty stiff, favored his right side mostly, and was a little "out of it" with his surroundings. He is now SO into faces, reaches up to things, is having funny spazzy muscle control issues as he tries to get things, etc. The home environment has of course been good medicine for him, and he seems to be thriving. I'd say he's probably still a few weeks behind normal, but heck, he was immobile for about a month, and then development is a grey area anyways from kid to kid. Either way he is daily better.

Our pulmonologist said he is okay without the oxygen now, but wants him to stay on it through he holiday/winter/sick season just to keep stress off of his body. Of course I want whatever is conservative and best, but I will NOT shed a tear the day I don't have to fight Max over his canulas, move tank regulators around, reorder O2, blah blah blah!! He doesn't know any better luckily, and only yanks at it when he's sleepy- kinda like kids rub their faces when theyre tired.

We are so blessed to have gotten to this place. I still look at him with relief, and it's all still so fresh in our minds. We don't take Max out much except to family's homes; no sense in pushing our luck, right??

So, that's the scoop! :)
Claire

Psh, he's fine!

2009-10-19T22:05:00.002-07:00

I'm so glad, the ultrasound on Max's spine was nice and BORING. woopeee!!!! So far in his life, all my "routine" tests have ended in the bad news nobody wants or thinks they'll get. SO, I'm happy to report nothing. No Spina Bifida or "tethering" (where one leg or the other wont work) to worry about. Just thought I'd get back on the blog to report that quickly.

Max has been feeling kinda sicky the last couple days, and I was so bummed because he was kind of faltering on his eating and acting really out of sorts. But tonight he "chomped" down his whole bottle and was smiling up a storm, so I hope he's feeling better! It's so weird when Max isn't quite himself, because I start worrying about the worst! I suppose any new mom does this, except I have some legitimate reason to freak out, haha! I'm just learning...

Random side note...hehe...I had gained 35 lbs during the pregnancy. The first 15 literally just fell off in the first 2 weeks, and then, nothing! I truly didn't lose even a half of a pound in the last 2 months, so I started to really worry! I know I've been stressed...BLAH BLAH BLAH!!! :) All I know is, I joined Weight Watchers, and I LOOOVE it. I already lost 4 lbs, and I'm eating really well. I like having a focused plan. It's kinda a game for my mind, and I'm so motivated now. I can't wait to be at least close to my previous weight. :) Gotta be a hot mom! Just kidding!!! (Mostly.)

Alrighty...
Claire :)

Don't hold it against us...

2009-10-18T15:09:00.003-07:00

We've been so busy!!

We got home two weeks ago from this last Friday, and it's been a blur since then. In fact, every day I've said, "I'll blog tonight!"...ok yeah right. I have had a crash course in mommyhood. Whew, what a life! I've always admired mothers, but NOW i GET IT!! :)

Max is still just doing great. When we got home, we met all our new doctors; a pediatrician, a pulmonologist, and a Gastroentinologist. We still have Max on oxygen, and maybe at our pulmonologist appointment on the 22nd, we can be free of it! No rush if he needs it, but I am excited to be free of the 7 foot tether called Max's oxygen tank! :)

Some kinda neat stuff: when we can home, Max was eating about 30 of his 70 mL's of milk by himself...and it was tough! When we went to the GI doc appointment right after coming home, he switched Max to a higher calorie formula. The next morning I started him on it, and he literally gulped the WHOLE bottle down. And then I proceeded to cry for a while! :) (Out of excitement) Since then, Max eats his whole 70mL's by mouth about 80% of the time! HOORAY! I am so happy...I wonder if it's because the formula is a bit thicker, or if it tastes better, or both. Either way, it's a victory for Mr. Max!

We've only taken him out a few times...I run errands with him if I have to, but not really any "group" things like church (just once but I was having an anxiety attack the whole time...maybe a bit later we can try again!). It's funny how ready I felt, but the second we were in a group of people paying attention to Max, my stomach was in total knots. For now, we'll stick to family visits!

I have an ultrasound appointment with Max tomorrow (for him), to check a dimple he has at the top of his behind-crack. The pediatrician said it's overly cautious, but could be a sign of spinabifida. We don't need to take any chances! I'll post how that goes.

Mr. Skinny got weighed at the pediatrician...5th percentile for height and weight! But, he's rapidly gained weight since we switched formulas, and earlier last week he was 8lbs, 15 oz. So, we are making progress! It's hard to remember he's already 2 months old...it feels like I've always had him!

Max is the nicest baby ever...he has such a happy disposition, never really fusses, just smiles and toots. ;)

I'm going back to work Saturday the 24th, part time; I'm excited and not! Pretty normal response I think. I feel a little crazy sometimes just in my house with Max all day, but I don't actually think I want to leave him either.

Here's a couple cute pics!
Max and Dad...chillin' on Sunday morning! (today!)...check out his "wild things" tattoo peeking at Max!

And, here's Max all hyped up for the Gators Game with Dad! He is a Floridian, ya know, so he has to represent!
And...Max discussing the serious things in life with his friend the blue elephant...he loves looking at him!
And...another cute one of Father and Son! I LOOOOVE this picture..do you all see the resemblance now? It's too bad Max doesn''t look more like his dad. ;)

Well, I think that's really it?? Max is great, we are good, Thank You God For You are Good!
Thanks for all the support folks!
Love ya,
Claire

Ps, never got to thank everyone for the "circ-support"...Max is looking great. We've had more highly opinionated but poorly educated (on this topic) people commenting...but oh well I have the delete button right?? :)

Home Sweet Home

2009-10-03T20:46:00.003-07:00

Can you believe it!? 2 months (more for Claire), 5 surgeries, 5,000+ miles, and over 65 hours of travel time later, we are finally HOME. I really cannot express the joy that Claire and I feel about being here right now. We got home at about 1:30am yesterday morning and when I went upstairs to Maxs room, I just broke down. All of the stress that we have been carrying with us for the past 7 months was now gone. My perfect, beautiful baby boy was where he belonged.

Yesterday was a little crazy with getting unpacked and all of our families that wanted to come see him. I think at one point there were 9 people here. It was totally overwhelming, but great to see. Our parents and brothers and sisters all got the chance to see him or hold him. Claire has one sister that lives in Oregon that will be able to meet him in a few months. She and her husband were not able to make it down, so we miss them. :)

One of the friends that came over yesterday to see him was our friend Misty Dunn. Misty is am AMAZING photographer and we wanted the first pictures of him home to be taken by her. She has a website (www.mistymichellephotography.com) that you can check out if you would like. She is super talented and we just wanted to share a few pictures of Max in his NEW place!

Thank you all again SO much for the prayers and thoughts. We really could not have done this without it. You have all been such a blessing for our little family as we went through this.

So, this ends that volume of our lives, and so we begin on a new journey with having our baby home. We will continue to post things as they happen, but it may not be as often as before. We will still be keeping you all updated though. :)

Make sure (if you have not already) that you fill in your information on the “subscribe” box on the left side of the page, and the blog will e-mail you whenever we update, so you don’t have to be checking all the time.

Again, we appreciate and love you all. Except for “Anonymous.” You know who you are.

From Arizona. From Home.

The Griffin Family

BOIL, watched pot, BOIL!!!!

2009-09-26T20:36:00.011-07:00

Well, we are ALMOST done here in Gainesville...or Gator Nation, as the college football worshipping folks call it (which is everyone). Woopee!

Max...let's see:
He is doing good! Max has fully recovered from his Nissen fundo/Gtube/circ surgery marathon, and has been working on getting to "full feeds". This would be about 60-70mL's, or 3 ounces of milk. He has not been very into eating, so that was a surprise. Oral aversion is fairly typical for these kids, but for some reason I didn't think he'd go there. Loving your pacifier is one thing, having to drink from one is another. Max gets an average of 20mL/1oz down before a few things happen. He pushes his tongue out so you can't get the nipple back into his mouth, or he purses his lips and bears down. Both are very funny because he has the grrrumpiest baby face I think I've ever seen. It's a glare, in fact. If those ploys don't work, and Mom and Dad or the Nurse are still forcing that bottle on him he "plays possum", as one of our nurses said. The boy just goes limp and pretends to be asleep. BUT. He will peek at you, just to check. Also, if you put him in his crib, he's wide awake again. It's kinda adorable, but we can't let that win over. It's a balance between not forcing so much that he gets exhausted, or starts gagging (which is easy to do because of his surgery). That could cause more oral aversion. So, as of now, Max eats his one ounce or so, and the rest goes through his G-tube. I tell you what...without that tube we would be here several more months. Whew... Here's a few cute pics from tonight. However, I apologize because it's dark in the NI sometimes, and he was out cold! Didn't make for much of a GQ Baby photo op.

Even though Max is not eating all on his own, he has been gaining a little bit of weight every night, so he is meeting requirements for discharge. :) We will do some occupational therapy at home, and just work with him! The sides of his canulas are sort of "super taped", because he yanks those puppies off any chance he gets. I would too!

Otherwise...we are all set! Max has to get his Synagis shots, which protect from RSV. They're usually only prescribed for kids with congenital heart disease, but Max is "weak" enough to warrant them. Also, Max will go home on oxygen, just so he doesn't have to work hard for air while he transitions. So the shots, and that's all folks! We should be getting discharged Tuesday or Wednesday...which is SOON. I'm so glad it's finally here.

Today, we got to do the coolest thing! One of our nurses, who's on the flight crew, stopped by to chat with us for a minute. She took care of Max a bunch when he was in NI3. Anyways, she offered to take us to the ROOF of Shands, to see the heli-pad!! Suhhh-weet!!
(Jordan's going to HATE me for accidentally left justifying these pics...haha)

Jordan is definitely standing on the edge of the roof...with a ledge under him that goes MAYBE another five feet. Sandy the nurse doesn't seem to mind, either! But I very humbly sacrificed going close to the edge of a 12 story building to be the photography. I'm a giver, what can I say.

Here's me! Again, safely in the center of the heli-pad! :) You can see all the way to The Swamp (Griffin Stadium-really!) behind that red brick building. It was a WAY cool experience for us, we really appreciated the treat! I don't think I'll be joining flight crew soon...but I think Jordan is going to be sneaking back up there soon.

Tonight we went to a friend's house to watch the game, and the Gators kicked booty! :)
Here's the guys, deep in football world...

And here's me...apparently encroaching upon Jesse the dog's couch...

Actually she is such a sweet dog; she just had her eight birthday! Really, I was sitting in "her" spot though, so she just leaped right up and snuggled onto me right away. It was pretty cute.
I don't have much more interesting to say...other than two glasses of wine after NO alcohol since December makes a certain girl headachy! I wont name any names...

Here's Max's crib in the NI, with a sheet over it to block lighting changes, etc. (the lights are always fading up and down when the nurses are working/writing or not.) It's his fort!

Love you all! We are quickly approaching normalcy!! :)
Claire

Countdown

2009-09-25T21:24:00.000-07:00

Hey all! Sorry for not blogging for a few days...things have been pretty crazy out here on the east coast. I know that isn't an excuse for not keeping you all in the loop, so please just forgive us. :)

Well, Max has been doing well the past few days. I think the main reason that we have not blogged in a bit is because there really wasn't anything crazy or new to talk about. We have been feeding Max every 3 hours by a mix of bottle and feeding tube. We try to see how much he is able to take through a bottle and then get the rest into the tube. He needs to be gaining weight for the drs. and nurses to let us go home. Speaking of going home...

Max HAS been gaining enough weight that we were told today that we should be discharged NEXT WEEK!!! They are thinking either Tuesday or Wednesday for us to be discharged, and they we will leave the following day. Here is the twist though...Dr. Kays doesn't think that it is really safe for Mr. Max to be getting on a plane right now. With his condition and the widespread pandemic of that Mexican Pig Fever or whatever it is, they don't want to risk it. SO...Claire and Max will be driving with ME home!

Please be praying for us as we get things settled here and start that 2000+ mile drive back home. We were hoping that Claire and Max would be able to fly and I would pick them up at the airport, but that isn't going to work. Now we have to stop every 2-3 hours for 30-45 minutes to feed, change diapers, stretch, ect. I am not complaining, but it is DEFINITELY going to make the trip a LOT longer than it was coming out here. Oh well...God knows best and if this is best for Max...I will take it.

That is really all for now. I will try and not let too many days go by without a new posting again. :) Thanks for being awesome! You all rock my face clean off!

This is AWESOME!!

2009-09-21T19:18:00.003-07:00

Hey guys!! Woah...there is SO much cool stuff on the internet!! My mom and dad told me that if I was going to be playing online all day, I at least needed to update the blog or whatever and tell you guys how things are going.

Here is the low down:

I am eating a lot more since that bald doctor cut me open again. I am not really sure what he did in there, but I feel sort of like Humpty Dumpty, but with a better ending. My mom told me that story. How horrible IS that??!?! Poor guy is just dead at the end?! He apparently needs to see that doctor too.

Basically, the nice nurses have been giving me 6ml an hour of milk through my stomach tube, and then either Mom, Dad, or one of my servants gives me 20 ml of milk through a bottle every three hours or so. I feel like I am ready for more, but apparently they are going to wait until tomorrow. Oh well, I will just pee or something. That will show them! I am feeling really good, I don't know why they don't just trust me! Oh well...

Other than that, I heard Mom and Dad saying something about possibly being able to go home next week if I am able to handle a whole bottle. Like I said...I am ready for it, but they apparently just don't trust me! Mom and Dad keep telling me all about Arizona and how cool it will be when we go there. They are saying how excited they are for me to meet all of my grandparents, aunts, uncles, and all the other family and friends that have been praying for me and love me. I wish I could tell them how much I appreciate you all, but I guess my speaking isn't that great yet...something ELSE to work on.

Well, my cell is going off...probably my girlfriend from the other nursery. She calls ALL the time! Anyways, I will have a Facebook or a Twitter account set up soon, so all you nice people can continue to follow me if you want. Thanks again for praying. I appreciate it, and I look forward to seeing you all soon!

PS: Will SOMEONE come change my diaper?? I feel I am sitting in a sponge over here!!

Hungy Hungry Hipp-- er, MAX!!

2009-09-19T19:44:00.009-07:00

Hola Amigos...

Tonight was Jordan's turn to post, but a moment ago he mysteriously disappeared from our room. All his X-Box things are gone too...I better do it myself.

We didn't think that Max would get to start his eating up again until tomorrow morning, but this afternoon when I came back after lunch, Max had milk! Hooray! I should've taken a picture...sorry I have failed you. They are doing continuous feeding right now through the G-tube, 3mL/hour. This is to take it nice and slow, "prime" his stomach again in a way. The practitioner said that once Max shows he can tolerate any little bit, they pretty quickly ramp up the amounts of milk every day. So now we are on a roll...
Max seemed SO much more alert and happy today, whether it was because of the food or that he's just a few days out of his operation. Either way, it makes it easier for me to sleep!

In his other areas, Max is still doing just great! We (the nurse and I) weighed him tonight, and he is still right about 7 1/2 lbs. He should start gaining now that he will be eating consistently! He had only been eating for a week before he got cut off again last week.

A really funny thing happened tonight that I really hope Jordan expands on next time he posts-I don't do it justice. Tonight when I had Max in my lap playing, I noticed that one oh his "breasts" was very swollen and rock hard. Probably the size of half of a golf ball. His chest has always looked a little weird because of the very deep pectus (a congenital deformity in which the sternum is depressed/ pigeon chest), but this was totally different. We were waiting a moment to ask the nurse because she had her hands full with a fussy baby (not OUR Max!), so Jordan starts googling "breast tissue, baby boys, etc". I told him that boys can get female hormones from breastmilk and form little boobies for a period of time. Especially since Max didn't get breastmilk for a month, it's a little delayed. Ya'll shoulda seen Jordan when the practitioner confirmed that it was breast tissue that would go away....but she squeezed him and MILK came out....HAHAHAH!!! Okay I'm immature, but Jordan was SOOO freaked about this. It was hysterical. Anyways, he can tell his version another time. And, FYI, Max's little engorged boobie will be just fine after a warm compress and a few weeks...hehe.

Okay! That's the events of the day. Now, I owe my friend Ryann some pictures of Max. She is spoiled and expects new pictures ALL the time. So, I decided to walk you through a day in the life of Max Evan, super baby...in Max's words of course.

First, I have a morning visit with Dad. Today was game day, so we went over the current stats, and who would be starting in the big rivalry game between Florida and Tennessee...Go Gators! Dad always helps me stretch my buff arms and legs, to make sure I am developing okay in this crazy time. What a cool Dad, I hope I'm just like him. Then, just before he goes, he always holds my hands and prays with me that I will heal up fast and be nice to the nurses.
It's hard work being as awesome as me, so I try not to stay awake for too long at once, usually 30 minutes to an hour at a time. Otherwise, I find that I draw a crowd with my cuteness and amiable disposition.
Next, Mom comes back in the afternoon to snuggle some more. She is a little photo obsessed, so here he are snuggling like buddies should.
I slept through that picture too, but hey! I wasn't asleep ALL day...
Dad got me my first cell phone...it was easy to convince him that I totally needed it to call for rides, etc. All the cool babies have phones! So, here is Dad and I, just chillin, updating my Facebook status and texting my family back in AZ! Don't worry, the screen is supposed to be as big as my head. It's the cool new thing to have.
Then, yep, you guessed it, more sleeping. Although, I've gotten really tricky. When I'm sleeping in Mom or Dad's lap/arms, I am so happy! It's better than the crib. So, just when they think I'm sleeping, I peek one little eye out to double check that they've not relocated me. If not, we are good...if they move me, they'll hear from me! :) They snapped a photo of me sneakin' and peekin' this afternoon.
Lastly, something that drives Mommy crazy. Dad likes to "play" with me, and he reassures Mom that I LOVE it. Mommy thinks it's kinda like being the first kid to fall asleep at a Jr. High sleepover...but who's arguing right?? So, here I am, totally unaware, zonked out, grinning like an idio--crazy kid. SO cute, but my tough reputation is being challenged.
So that's it Maximus Nation...a day in my life. Very busy, very high profile, very happy.

* Sorry, Max is long-winded like mom. Jordan messes with lil Max's face ALL the time, ahh! But I just keep remembering that a Dad and his son is a relationship I may NEVER "get". :)

Thanks for the prayers, please send up another one tonight for continued quick recovery! :)

Good Night Vietnam!

No news is good news!

2009-09-18T19:28:00.002-07:00

Hey all!

Just thought I'd jump on really quickly and give you an update...
Max is doing just great! He has mostly just slept, slept, slept this last two days, recovering from his surgery. I was wondering today...what must it have felt like to have the CDH repair! I mean, all the organs in your body relocated? And then, a patch of fabric stitched into your chest wall to close up the hole, whew! Not drumming up old drama, it just kinda blows my mind. I cannot believe what Max has made it through so far. The repair, then tapping in to his heart with ECMO, trying for a week every three hours to eat, only to vomit, and then the fundo, g-tube, and circ. Seriously, what adult could handle that!? Babies are TOUGH as NAILS. :)

I'm anxious for the next 24 hrs to fly by, so that Max can start feeding again, he seems agitated...and I think he's hungry! That'll be three days just on the IV, but this time he knows what he's missing! Once he starts feedings, we should be here maybe 10 more days (ish). Getting to full feedings (60mL) is the final frontier, hoorahhh!

So, Stinky pants super-Max is doing well, thanks for caring!

On a FUUUNNNY note, I'm trying to lose 20 pounds, which would put me back at pre-baby. Why did weight loss come to a screeching halt after 3.5 weeks?? I don't even eat badly!! Everyone warned me this would happen, I just thought people weren't trying hard enough. I was lucky to get a two week trial gym membership from Teresa the house manager...but haha guess where? Curves. NOTHING wrong with Curves, but the branch here in Gainesville is...um, a more "mature" crowd. No exaggeration, everyone there but me definitely gets special rates at the movies, and restaurants...and gets the front spots in any parking lot. Gettin my drift? Curves is sort of a circut training workout, so it's all in a friendly circle so we can all watch each other suffer, yay! Also, for the CHATTY exercisers (my personal fave...), we can even make uncomfortable eye contact the entire time we are workin' it! Haha, it's a experience I've not had before, but "mature" folks love me, so heck let's burn some calories, Granny! OOHH! I almost forgot the BEST, BEST, part...you probably wont believe me. If this doesn't solidify it...there's a knitting club, complete with a corner with a table and chairs just for KNITTING after a work out. Seriously, while I do squats, there's someone whipping up hats and scarves 10ft. behind me... Okay I'll give you a moment to soak up the awesomeness... Okay!

Good night all, I am praying for YOU!
Claire

There Is An End In Sight!!

2009-09-17T18:52:00.003-07:00

There is a HUGE mix of emotions that I have been dealing with the past couple of days. As we talked about in the last posting, Max had to have surgery to fix his reflux issue, and things went really well. The surgery was a success and they were about to get things fixed so he should not have any issues in the future. Currently, Max is not eating milk right now and is hooked to an IV for the next couple of days. They said that he will be able to start trying to eat again on Sunday.

This is really where we will need your thoughts and prayers for the next little bit because this is what is going to determine how quickly we will be able to come home. If Max is able to tolerate his feedings this time around (using both the bottle and his G-Tube) we will be able to take off back to Arizona. Don't get me wrong...we really have appreciated Florida and everyone here, but we are MORE than ready to get back to the dry air.

Other than that, the only issue that we ran into after surgery was an issue with his circumcision. YIKES! I guess that there was some skin that was being pulled by the sutures and he was having some bad bleeding from his "tinkie". They had to put in three extra stitches to get him all fixed up. Poor guy!!! We felt bad enough for him that he had to go through three separate procedures, but that is NOT fun. We did have a little laugh afterwards as we were thinking that we have one of the best surgical teams in the country and the issue that Max had was with his circumcision!! They have repaired a hole in his diaphragm, put him on ECMO, wrapped his stomach around his esophagus, put in a feeding tube, and we had NO issues. They cut his little penis, and THAT is what he decided to make difficult. No worries though...they said that everything is fine, and that everything will be good in the future for him. :) (Daddy is happy.)

That is really it for the Max update. Things are looking good. We hope to be heading home in about 2 weeks if things go well.

We never get tired of how amazing you all are that read our blog. There are so many of you that follow our sons story and have never even met us. The fact that you care enough to read and to pray with us truly floors us. I just want to say a HUGE thank you to YOU. We are very grateful for the prayers and everything you all have done for us. We wish that there was something we could do to show you all how much we care. That being said...no plans are set in stone just now, but I know that we are planning to have a "Welcome Home" party for Max when we get back to Arizona. As we get details, we will share them, but we would like to invite anybody that has followed to story of our son or prayed for us to come and celebrate with us his Arizona homecoming!! Thank you all again, and we love you all sooooooo much!!!

Live, Laugh, Love,

No WONDER!

2009-09-15T12:54:00.003-07:00

No WONDER he couldn't keep anything down, he didn't have the proper equipment!

Max had an Upper GI yesterday. The had him drink Barium, and did X-rays to watch the contrast and see where the fluid went. They easily realized that Max has gastroesophageal reflux disease (GERD). Not your run of the mill reflux...Max doesn't do anything halfheartedly. Show off.

Gastroesophageal reflux (GER) occurs when stomach contents reflux, or back up, into the esophagus during or after a meal. The esophagus is the tube that connects the mouth to the stomach. A ring of muscle at the bottom of the esophagus opens and closes to allow food to enter the stomach. This ring of muscle is called the lower esophageal sphincter (LES). The LES normally opens to release gas after meals. With infants, when the LES opens, stomach contents often reflux into the esophagus and out the mouth, resulting in regurgitation, or spitting up, and vomiting. GER can also occur when babies cough, cry, or strain. (http://digestive.niddk.nih.gov/ddiseases/pubs/gerdinfant/)

In Max's case, his LES is totally loose, so anytime he lays or reclines back the stomach contents run back into his esophagus. This explains everything! The big lumps of mucous in the back of his throat every time we'd pick him up, and the panting when he'd try to burp. Also, the huge amounts of air he gathered in the stomach.

This actually came as such a relief knowing there's a solution. We sort of felt like we were just flapping in the wind, not knowing how long it would take Max to "figure it out" with eating, and I could just TELL there was something more than your average reflux happening. This isn't an out of the ordinary thing, many CDH babies have this issue, because the intestines and other organs didn't have the placement and space to develop properly above the diaphragm.

To repair Max, Dr. Kays will do a Nissen fundoplication.

In a fundoplication, the gastric fundus (upper part) of the stomach is wrapped, or plicated, around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter: Whenever the stomach contracts, it also closes off the esophagus instead of squeezing stomach acids into it. This prevents the reflux of gastric acid (in GERD). The esophageal hiatus is also narrowed down by sutures to prevent or treat concurrent hiatal hernia, in which the fundus slides up through the enlarged esophageal hiatus of the diaphragm.

In a Nissen fundoplication, also called a complete fundoplication, the fundus is wrapped all the way 360 degrees around the esophagus.
So, whenever his stomach contracts, it will act as the LES or sphincter and tighten around the esophagus.

ANSWERS. whew.
Jordan and I honest to goodness were weirdly excited about the news. I guess it just felt like poor Max will be so much better off! It's been emotional watching him struggle so badly to swallow a few mL's of milk! He can't eat more than a few capfuls before he vomits!

Because of all this, Max will also get a feeding tube during the surgery, because he will still have some major training to do with his eating. It sounds okay to me, not too hard to live with or manage. He could have that feeding tube for a month or a year, but I wont let him get lazy with the bottle feeding! :)

One of the cool parts of all this- and TOTALLY not the important part- is that we can come home once he recovers from that surgery. So, we now are fairly solid on the fact that we will be coming home within two weeks. THANK. YOU. GOD. (really, thanks God.) Max just needs to recover from surgery, and show Dr. Kays and Dr. Dickie that he can take his full 60mL feeding through the tube at least (if not with a bottle combo). We were just over the moon on that part. I know we have a ways to go, but Jor and I would sure love to go that extra mile at HOME.

The surgery is tomorrow, and they are not doing it laparoscopic because they want to explore his stomach a bit to just check for anything else as a precaution. They will use his scar from his hernia repair. Surgery number three, here we gooooo!

What a tough little boy, huh? :) We will let ya'll know how it all goes.
Claire

The night Max wore his wolf suit...

2009-09-14T20:38:00.005-07:00

And made mischief of one kind...and another...
Doesn't he just look like he's dreaming of trouble? Okay maybe not but I'm pretty sure that is in our near future! Like always, sorry my pictures are not always the best quality, I use my blackberry's camera.

Update!! Update!! Nothing has changed!! :)
Well, that's mostly true. Max is, and will be, just working on the eating. The nurses and us have decided cautiously that Max really doesn't seem to have terrible reflux as we were warned to expect. What seems to be happening is, he doesn't swallow/process his "spit" and mucous. It collects in the back of his throat, where you and I would normally clear our throats. So he starts sucking some milk in, and gags on all that. Then we get a golf ball sized present along with whatever milk he had gotten in, which is usually not much. After that, we tend to have a fairly successful feeding. We are working on things like continuing to burp him before and during his meal, and we've added little "binky breaks" inbetween as well. This seems to clear his throat a little before he eats and during. Whatever helps, huh? So, the eating process takes about 20 minutes for 1oz, but if he keeps it down we won! (He doesn't always keep it down though!)

I would say Max is about 50/50 so far. That is still considered good progress, because a lot of CDH kids even need occupational therapy just to learn to overcome an oral aversion. So, we take a deep breath, and work patiently with little Max as he learns. I try to remember that he is a tiny new human being, and everyone is asking a lot of him...and he is doing his best! I'm sure NObody would enjoy barfing halfway through every meal. Lovely visual, I know.

The docs ordered an upper GI today, where they make him drink Barium so they can see where things go on a screen when he swallows. We'll get those results tomorrow, and see if it gave them any useful information. Otherwise, he is growing and adorable! He's at 7lbs, 60z now. That's still small, but since I watch him change it seems big to me. Here's a couple cute pics!

Max looks grumpy here(yesterday), but that's just his normal look when he's watching us make stupid faces at him...he's thinking "you guys are so weird...none of the other parents here do that!"
And here he is being fed by super dad of the year, Jordan! I like this pic because you can see how little he still is in comparison to Dad's hand.
And here's Max's favorite pastime, inbetween eating and making mischief:
Jordan says it's his favorite feeling just having Max lay on his chest like this and rock in the chair. I have to agree! Oh! This last one is today right before transport picked him up for his GI test. They can get chilly so I put his hat on and his puppy slippers...hehe!! (He normally has toys in there too but they hafta be out for transport.)
The shoes have a big soft puppy face with big floppy ears on the sides. I guess that's more for Mom that for Max.

Thank you ladies for all of your support and advice about the breastfeeding. I get emails and Facebook messages in addition to the blog comments, and reading everyone's experiences really did make me feel better. It's nice to know other women struggle in this way and got through it. So, when/if I don't respond, please know that I'm reading and appreciating. It's just so much to respond to over and over. I love your advice and encouragement on all these different topics though, so don't give up on me! :)

I decided Sunday night to stop pumping. I had a big meltdown, a really great cry (hehe), and I'm fairly okay with things now. Not totally, but I'll get there maybe. I have done EVERY. THING. A couple different LC's, a doctor appt at the Lactation clinic to consult about possible issues, every health precaution possible, EVERY nasty herb and tea possible (oh yes friends I've been smelling of Fenugreek and maple syrup for weeks now), and pumped faithfully every 2.5-3hrs for five weeks now. Short of taking medication, which the doctor advised me against for a few different reasons. I make MAX( no pun intended) 10ml, which is half what he eats at one sitting. So, he out-eats me already. Also, latching on hasn't worked because the nurses don't want to upset him and make the bottle feed unsuccessful afterward. I don't want that either, so the breastfeeding itself really isn't functional like I'd hoped.

Altogether it's working against me, and God just has other plans for Max's nutrition. So, I have done awesome research and asked advice of trusted friends about formula, and when we get home I feel okay with what we'll do. The hospital said I can't provide my choice now because of sanitation laws, and I'm cool with that for now.

(As a side note...this may sound weird. I love and appreciate all of you, but since I've come to this decision, I would respectfully request no advice or encouragement to continue. I really struggled badly with keeping out of a bit of a depression about it, and I'm feeling okay with my choice. I feel like continued advice in that direction would make me feel crummy. Thanks so much for understanding!!)

Jordan and I are going nutso, but we have some great friends here that get us out of the house, and we still have a blast together. Thank Goodness! I think our marriage is really set up for success if we come out of this happy and healthy. I'm exercising now, which feels just amazing. Life lately is such a "sit on you butt" activity...hanging out with your baby in the hospital.
If you consider rocking in a chair an Olympic sport, call me Micheal Phelps!!

Please pray for Max's tummy to learn how to eat/process his food (and fast, hehe!), and for all his staff watching over him, to help us and the docs make good decisions for Max based on their observations. Also for Jordan and I to just handle all of it, and for me to have PEACE about the BF stuff. :) Thank you everyone. I don't grow tired of being grateful to all of you, even if I've never met or talked to you.

Love,
Claire

I think Max is bulemic!!

2009-09-12T15:57:00.004-07:00

He keeps throwing up after he eats!! Is there baby eating disorders? Did the other babies tease him, call him fat? Just because he was a term baby at 39 weeks and full size? Geez, those one-pound babies can be harsh!! (Sorry that's terrible...)

So let's talk about feeding shall we?

We are up and down. Well, Max I mean. Yesterday the docs upped him to 15 mL because he was very successful with 10mL the day before. He spit up (and by that I mean threw all of it up) nearly every time yesterday, but today we are making a little progress. 9am, not good; noon, not good; 3pm Good! just a little bit of mucous stuff, and his 6pm was perfect so far (it's 7pm now). So, it's kind of the expected trend that it takes a bit of time for him to cope with the increased amount of milk. I really would love him to have a successful night. I don't want them to up his amount if he can't handle it, but for the sake of progress it's always in the back of our minds of course.

So we continue on with his training! The miracle working occupational therapist and lactation Consultant Elaine with be working with us soon, so we can't wait to see how she may help Max. Several other CDH moms have raved to us about her. The trick so far with Max is totally taking it slowly. We have to start about 30 minutes ahead of his feeding time, and start burping him. He gets lots of air stuck down there somehow, and when you start patting him he gets very fidgety and uncomfortable until "BLARP!" and he's ready to eat! Then we stop once or twice in the 15mL (SOO small amt) to let him process it and maybe burp again. After that, another burping, and he's usually okay! So if we rush him, we pay!

I gave Maximus a bath today with our nurse Marla (awesome lady) because all that spit up catches up to a stinker. The funniest thing happened...I let my GUARD DOWN. Max was laying there, and I'm wiping out his armpits with the soapy rag when I realized I was spilling something on the floor! I quickly look down, and NO!!! HE IS PEEING ON MY LEG. Haha! OOPS! Mama's fault! Gotta cover that little cannon up! :) Hey, it's sterile, right? Oh well. It was too funny though, he almost got the mother nursing next to us. I should have known, he got very relaxed before I realized the sprinkles on my flip flops weren't soapy water. Stinker.

I'm trying to come to terms with formula feeding. Don't get me wrong, I have NO crazy stance against it, I just personally would REALLY prefer to stay with breastmilk...for many reasons. However, he is already eating 15mL, and I produce about 6-10mL every 3 hrs. And, we can't have him trying to latch on much now because it puts so much more air in his stomach that he can't do the bottle afterwards. So my supply doesn't have that opportunity to increase...if it would have anyways? I'm pretty sad about it, I really wish that part was different. I'm genuinely jealous (I admit it...not even the cute funny jealous) of all the moms breastfeeding their preemies, and the huge bottles of milk the moms turn in to the nurses for storage. UGH. I'm trying to come to peace with it. I was for a while, but now I'm sad because it's actually happening now...he's not on the tube anymore. So, once he literally eats through my supply frozen from this last 4 weeks, (should last him another 2 maybe) we have to go to formula. I just hope his tummy can handle it, since his stomach has so many troubles already. Like I said, bummer...

I don't mean to end on a grumpy note!! Max is doing amazing, and we are NOT missing that part. My little whiny gripes are NOTHING in comparison to his successes. :)

Jordan got to go to another Gator's game this afternoon, and had a blast. He really thrives from "getting out"...and I'm glad for that!

Sorry I don't have a picture! We will work on that. LOVE YOU!!

Claire

A Day of Firsts

2009-09-09T19:16:00.007-07:00

If Claire and I had to sum today up in one word, I think that it would be "HALLELUJAH!!!!"

Today was probably one of the most overwhelming (in a good way) and positive days that we have had here. Today was a just a day of firsts for Mr. Max! Today he got his first bottle, bath, boobie, burp, and big boy bed!!

Let's start with the bed...Max graduated this evening down to the NICU 2. He was changed from the tall platform-ish bed to a crib! We have spent every day since he was born in the NICU 3, which is reserved for the babies that are the most critical cases. As they get better they get moved to NICU 2 and finally, discharged. This has put a light at the end of the tunnel for Claire and I, and has made us even more anxious to get out of here and get HOME. The NICU 2 is a lot smaller than his previous room, as well as a LOT louder. Ha Ha...This is probably a good thing because it means that the babies in there are getting better and getting ready to leave. We were just moved this evening and have not had any real experiences with people in there yet, so stay tuned.

First Bath: Our morning nurse, Tony, let Claire and I give Max a bath this afternoon, and it could NOT have come at a better time. He was getting a little "ripe" and was more than ready. Claire and I have been given permission to take a more hands on approach with him from here forward, and so we decided to change his diaper and get the water ready. It was more like a sponge bath, and he didn't enjoy it at all. He pretty much cried through the majority of it, but that's probably because he was a little cold! It was like opening a new present...because new healthy clean Max was hiding under a few layers of old sick stinky Max! After we cleaned the many layers of grime off of him and wrapped him back up with a clean diaper, he was pretty much ready to pass out for the rest of the day. That was hard work for the little man! SO cute.

First Bottle: ( Hi it's Claire now!!) So, here's where some medical update stuff comes in. Since Max is in NI2, that means Dr. Kays feels very confident that Max is over the hump. His new hurdle is feeding. That's where his first bottle comes in! We missed the first feed, and the nurse said he spit it up. The second feed I got to do, and he only spit a little bit up! Third feed, no spit up!! Fourth feed at 9pm, no spit up!! Yay Max! He was only taking 4cc, which is just about 3 sucks for a normal kid. But Max took his time getting used to the sensation of something being "behind" that nipple and swallowing rather than just a binky. He did just grrreat, and if he keeps that up, they will increase his amounts as he tolerates it. This led to the next first..the BOOBIE. Haha how embarrassing...thanks for that heading Jordan. At Max's 3pm feeding, we tried to have him latch on first. We knew I wouldn't drown him...since I DONT MAKE ANYTHING!! :) haha...it has a positive spin for ONCE. I had such a laugh over it...Max just sorta...explored and looked at me like "why are you doing this?" and "whats going on? why am I sideways down here!?" so I only tortured him for about 15 minutes before moving on to the bottle. We will continue to practice latching until he does or it's time to move forward...hopefully this may cause my hormones to kick in.

We kinda discovered (Tony the nurse discovered which I am taking undeserving credit for) that Max's problem is probably heavily some air in his tummy. So, we burp him before he eats, and that seems to help him not urp it up. Reflux is such an ugly issue with DH babies because his intestines and stomach were all tied up and misplaced, not all smooth and ready for action.

It's crazy to think that Max had to wait an entire 4 weeks to eat. Can you imagine?? I think he will be very excited about food once he figures it out! Also, I cannot DESCRIBE what I feel being able to cuddle with him now. Putting him up on my shoulder and listening to him grunt and breath just melts my heart...even just watching Jordan hold him is amazing! I am so blessed to have Jordan, and Max pulled through such a hairy situation. It's easy to get used to all this and forget where he was just two weeks ago, on life support! Well, that's my two cents! Breastfeeding is weird!

(Back to Jordan!) So yes, today was incredible and we are very happy with things. Max has been kicking butt and doing so much better every single day. We are thrilled with the progress that he has been making and look forward to every new day here until we are home. Thank you all for taking the time to read our blog and pray for our baby! We are blessed by each and every one of you!!!

(Daddy and Max...snuggle buddies...)

Jordan and Claire Griffin

Throw Up Your Rock Fist...

2009-09-08T19:28:00.004-07:00

Rock fist: Noun - Hand gesture signifying supreme awesomness. Ex. "Max is doing SO well! (Throws up rock fist)"

Alright...this post isn't going to be a really big one. Things have been pretty steady with Max since he got extubated. Probably the biggest thing that has happened is that he is already off of his C-Pap! They only left it on him for about 24 hours and now he just has his nasal canula (just giving him a little O2).

I am seriously blown away at the feelings that I have developed for this little guy. Being a dad is seriously the greatest feeling in the world. Every time I get to hold my son, my heart seriously feels like it is about to explode. How God was able to give up His Son for us, just blows my mind. It really has given me perspective on how much He loves us.

So, here is the plan...Max needs to start eating soon, and they are going to start his feeds from a bottle. They will start him at just 1 ML every 3 hours and work up until they reach 60 ML every 3 hours. Once we reach that point...we are en route back to the desert!! I really cannot believe that I am about to say this, but I really am missing the 110+ degree heat.

Well...honestly, there isn't that much to update you all on...so here are some (a LOT of) cute pictures of Max:

No words...

2009-09-07T19:51:00.004-07:00

Ahhhhhh sweeeet relief...we are over the hump people.
This. Feeling. Is. HEAVEN. I think I waffled between smiles and tears over this! Max only spent 24 hours on C-PAP! This morning we came in to Max on the regular cannulas in his nose. He now has no breathing assistance at all, just a little oxygen supplement. When we got in, I obnoxiously asked all the wrong people if we could hold him until our nurse was freed up and I jumped on her for it. She graciously took the time to get us all set up, because there were so many things attached to him still, you have to be careful! Jordan got first dibs (hehe) because the poor guy didn't really get more than five difficult minutes before Max crashed almost three weeks ago. We both held him for a couple hours almost! Why in the world would we OFFER to put him down anyways?!? Max loved cuddling with us, he just watched Jordan, and slept on my for most of it. He seemed really happy! Here's Dad below with his new best friend. Jordan kept saying today, "I'm so in love...ah I've so in love with him". I guess it's true what they say about dads truly bonding once they hold the baby?
Max also had his UAC taken out of his belly button today also, which was where they drew blood for gasses, and any other needs as far as getting things in and out of him! They have a PIC line still in his foot, and that will stay for a while. That way they can administer any medications necessary. (Not gonna need it! ;)

Lil Man moved over to some new digs today, and they were going to put him in a crib- but there were none available, so maybe tomorrow. They had to make room for another more serious patient...we are assuming it's the new CDH mom in the RMHouse because she's delivering tomorrow. Jordan put up that sheet to block a draft...they built their first fort together! :)
Don't worry Max, your planes are still flying! He watches those planes like a hawk. So cute!
One last thing...for all my loving friends. Although it is so kind and flattering, I have to throw in the towel and admit...THIS KID LOOKS NOTHING LIKE ME. haha! He is allllll Griffin. I bragged for a bit that he had big lips like me. However, Jordan also has a big mouth (hehe), and this baby's lips look much more like his did than mine at infancy. This picture above settles it! For the Griffin family that will "get it", look at that skull! That is Dave and Jordan all the way...the sloped forehead, the ridge above the brow, geez! And, I'm fairly certain Max will be a giant, and outgrow dad. Look at those hands. Buddy here is NOT going to be small...he has huge feet too. All the nurses comment on his honkin' feet every shift, haha! (But he's so pretty so who cares.)

Next hurdle is feeding. Nurses say it can take two weeks or two months...PRAY FOR THE FIRST ONE! No reflux, no nothing, amen! :)

Love ya!
Claire

ps Jordan will post more pics tomorrow of all of todays fun...but I'm tired! :)

Breathing Tube? We Don't Need No Stinkin' Breathing Tube!!

2009-09-06T19:44:00.004-07:00

Ladies and gentlemen...Let me introduce to you...Max and his upper lip!!

That's right! Max was extubated today and he looks SO good! As you can see in the above slideshow, he did really well and is now on what is known as C-Pap. This is similar to the ventilator, but Max is now doing all of the work on his own. The C-Pap just keeps his airway open so when he takes his breaths in, it isn't as hard for him. It is also giving him a little extra oxygen!

We are seriously just praising God SO HARD for today. We have been waiting so long for this day to come, and it really could not feel better. :)

The plan is now to get Max some milk and see how his stomach will handle that. We will probably be able to start him with his feeds in the next day or so. He still has a tube going into his stomach pulling all the junk out of there. They need to get that out before they can start putting milk into it.

The nurses have told us that this is essentially the longest part of the CDH journey, but we are praying and hoping that Max can take the milk without any problems. The main issue is that most CDH babies develop acid reflux from having his organs all out of place. Some of these babies gave to have a feeding tube installed (a G-Tube) if the reflux is severe. We are really believing that Max won't have to much of an issue, but there is still a chance.

Other than Max stuff, Claire and I are SO ready to be home. We really miss our family and friends. We were very blessed last night to be given 2 tickets to the Florida Gators opening game. It wasn't really a "game" per say as the Gators CRUSHED Charlston Southern with a 62-3 win.

Ok, let me just tell Arizona something...we do NOT do football the right way!! Seriously, yesterday was SO much more than a football game. We experienced the "Gator Nation" first hand and I think that it is safe to say that we are lifelong Gators fans. Before the game, Claire and I decided that we didn't have the proper attire for the game so we went into the school store to get dressed properly. We ended up with stuff for mom, dad, AND Max!! No joke...I saw this 3 pack of Florida onesies that I just HAD to get for Max....and some UF pacifiers. Oh man...we are hooked. Here are a few pictures from yesterday:

Anyway...that was pretty much the update from yesterday and today. We couldn't be happier and more thankful. We truly are blessed and do NOT take it for granted. Thank you all for your prayers and thoughts.

Happy Labor Day weekend! Be safe and we will talk to you soon!!!

Jordan and Claire

My Kid's the Smelly Kid in Class??

2009-09-04T15:45:00.005-07:00

Hee hee! Okay first of all, another CDH blog had posted about their baby being "smelly" before his first bath, and if you've seen "Big Daddy", it's a good laugh and a fairly accurate mental picture!

Max had a bath after two weeks of life, and just in time because he was put on ECMO that night! Then, since ECMO is a pretty big procedure, and they can't move him much, the next two weeks produced a greasy, goopy haired little guy. Poor kid! His little legs still smell like new baby though...they haven't been through much. So, not that it really matters, but I can't wait for extubation day because a side benefit of that is A BATH! :) Stinky pants is aptly named, but who cares when you're this cute?
We seemed to miss all of Max's awake time so far today! We came by this morning for a few hours, sleeping! Then again around 4 for a few hours, sleeping! So we are going to go again for goodnight kisses, and he's usually fairly alert at night! The nurse said that he was awake all afternoon, darn. This is the side he is comfy on, because his little neck is so tight. She (the nurse) had him stretching for a bit on the opposite side, and said that he was not at all happy during that time. So, he's pretty content in this picture from soon after that. We got a little peek when we talked to him, but lately, if he's content we don't rock the boat! He's looking so much better too, huh! No more Michelin baby!

Dr. Dickie came by this afternoon (as always), and said that Dr. Kays was again very happy this morning with Max's progress. They lowered his Oxygen to 34%, and breaths/minute to 30. Extubation is a go at 30% and 10breaths/min, so we are about two days away, if Max's blood gasses continue to improve every time. He is doing SO well now...I'm almost scared to say it. He is also off ALL of his medications, so it's just Max and the vent now.

Anywho, that's really it for Mr. Max the Miracle Man Mighty Pants. He's taking it very easy, just resting and sleeping. No more speed bumps and two week detours, Lord, puhhlleeaassee??!

I have been texting with my family, so they know, but Jordan and I are officially SICKKK of being away. We are so grateful to be here, but I just want to crawl into my own huge bed without Jordan's booty in my back, or me driving him nuts with who-knows-what (I'm sure there's plenty!). We miss everyone at home, thank you for thinking of us! We have gotten so many fun treats! A baby shower in a box from church pals, several boxes of evil treats from Aunt Terri and Uncle Tony, snacks from Great Grandma/pa, cookies from clients and Patti (yuuum!!) , Edible Arrangements from the Brinton faculty of my mom's school, and more! If I didn't write it I'm sorry, I'm just going quickly! Thank you so much everyone for loving on us, it truly brightens our time here and encourages us.

OH OH!! And, it's always sad to see a good laugh laid to rest, but I'm afraid I can't mourn this change...
Eek! Isn't he handsome! There's my Jordan, sleepy and clean cut. What a relief, to be able to walk side by side again, not having to duck out of elevators ahead or losing him behind those doors so we aren't "together"...and having people's stares linger just a little to long on his face! Haha who knows what they were thinking, although I think a hefty group of locals from Waldo, FL thought it was perdy nice. And, hey, we DID get a lot more personal space in halls and elevators when Jordan had that..."style"(?)...I can't imagine why. He loves me...and I bribed him. Okay.

Max doing amazing, the stache, and thank you's...got it!
Love ya!
Claire

PS, please say a prayer for some friends of ours from NI3, they had a Max in the bed right next to ours for weeks and we got to know them a bit...they had "little Max" and we had "big Max" because he was so early. They lost little Max this week, and my heart just breaks for them. This is a really hard part of being here; not all the kids get to go home. (Our homes at least) Thanks...

Let's not do ECMO again, okay?

2009-09-02T18:12:00.005-07:00

Hooray!! Maximus is OFF ECMO!! HE PULLED THROUGH!!
This is the face of one very sleepy, very cute (very drugged), overwhelmed baby boy!
However, it is also the face of a tough little kid! Max's blood gas numbers and other stats have been doing just great this last week, and his lungs continued to clear out day by day. Yesterday, we had no idea how far or near we were to being off, but then last night the evening nurse tipped us off. When we walked in late this morning, we caught the ECMO team cleaning up the last of the machine and getting Maxi-pants comfortable. Dr. Kays was there, and was in a great mood! He stayed and chatted for a bit, and said everything looked "great" (HUGE statement from him). He feels so confident about Max's stability that he didn't leave the canulas (big huge tube that was in his jugular going down into his heart) in for 24 hrs, the usual test run. That's a precaution in case they have to be re attached to ECMO; the docs don't have to disturb the heart more than once. In our case Dr. Kays was feeling confident about Max's progress.

I asked "What are our steps now, and what are our worries now?". Kays said that Max just has to clear a little more junk out of his lungs; not necessarily all blood, just mucous, etc. That's not a worry though. In three to five days Max should be extubated, so that would be Mon-Wed next week. Cool huh? A "little" two week ECMO detour and we are back on track! After extubation, he'll take a day or two to adjust, then on to feeding. This can take some time, since babies who've had many procedures and tubes can struggle learning to nurse/take a bottle. Also, they can have a real struggle with reflux and other tummy issues. However, that part is very non-threatening, just frustrating for Mommy and baby usually. :) I'll take it! :)

So, HOORAY! Prayers answered. Max just slept all zonked out today...can't blame him. You can see in the picture above how he still likes his head to that side since it was stuck that way for some time! He'll loosen up.

SOOOO...Jordan has been "playing" with his facial hair, just goofing around with different looks, since we are away and boredom can be an issue. He got a little silly because we see so many, um, different walks of life, here. He decided a proper father has a nice hearty mustache. Trust me. I tried fervently to deter this nasty thought, but there was no stopping him. He was even polling the NICU staff AND Dr. Kays (Pediatric Surgeon and Professor at UF, come ON!!? lol) to see if they'd support his idea to shave the beard and just have a (gross) mustache. I tried to explain that he will (and does) look like a sex offender...to no avail. So... here you go.

This is the before...look at him trying to keep a straight face.
Now, I REFUSED to waste money on this project, so I told Jordan he had to buy whatever color was on clearance, halfway hoping that would discourage him also. NOPE.
I think the excited Latin man on the cover only got Jordan more excited. ew.
Here is the color processing...I tried to take a picture but we were both laughing so hard it kept coming out blurry!
I think this picture is so funny actually. If you could only see that his upper lip is all dark and slimy...blehhh! (I hope I'm successfully painting a picture of a mortified wife???)
Finished product, Heaven help us:
You can see the pride in his eyes...while I tried not to look like I was with him at the hospital tonight. I don't know what to do! Shave it off in his sleep? I guarantee our friends and family are not terribly surprised. But, to all my clients reading this...welcome to my weird world, and sorry. ;)

I love Jordan dearly. Laughing together is our glue. :)

Anyways, Max is kicking BOOTY, he's resting well. Let's just keep praying for no hiccups along the way, no infections, quick healing and recover from here forward!!

Thanks, love,
Claire (Now a white-trash-wife by association.)

Ain't Nobody Got Swagga Like Max!

2009-09-01T20:01:00.002-07:00

Swagga like Max...swagga, swagga like Max!!

We are cautiously celebrating little victories tonight and one big one right now. We have had a really good day with our King of the Wild Things. This is how it went:

Claire and I have been sleeping in too long lately, and we tried to get up on time to get over to our little man as soon as we could...Being that today is 5 years that Claire and I have been together, I decided to get my bride the PERFECT breakfast...Dunkin Donuts and coffee.

We got to the hospital and went upstairs to see one of our favorite nurses (Tony) working with Max today. We were a little bit nervous to find out what had happened because last night Max suffered from an SVT. This is basically when his heart sped up really quickly and it was giving the nurses trouble. His pulse was over 200 for 40+ minutes and even got into the 300s for a bit. His nurse, Gloria, was able to get him the drugs he needed to get the pulse back down to where it should be. We weren't really sure what had happened until Tony explained everything to us, so we were nervous that we would find out somthing happened that we were not ready for.

Well, we were in for some news, but it was not the bad kind! :) The nurses had been pulling his blood gasses all night and his CO2 and O2 were both doing EXTREMELY well. Tony decided that he wanted to try and have Max rest on the other side again, and you could tell that his little neck was sore from looking in the same direction for so long. Claire stood at his side for over 45 minutes holding him still so he would calm down. If she didn't there was a chance that he would pull his breathing tube out. Nooooo good. Once Max fell asleep, we decided to leave for a bit and let him get some rest.

We have made some good friends here, but we really have bonded with a couple that Claire had met before I got here. We went over to Lauren and Tyler Brodericks house for dinner and a game night. We had a great time, but it was soon time to go back and see how Max was doing and see if there was any new news. Well, we were sure surprised when we got in and our nurse for the night (Jen) told us that "Word on the street is...Max should come off of ECMO tomorrow."

WHAT!?!? I really cannot put into words how thrilled and blessed this makes Claire and I feel!!! We don't want to get our hopes up ("the event" proved this to us), but we really feel like we can get rid of this big machine tapped into our baby! So yes...God is SO good. You all have been SO wonderful. We cannot thank you enough for all of your prayers and comments. I hopefully will have the greatest news yet to share with you tomorrow so until then, I will continue to sing:

Ain't nobody got swagga like Max!!!

STRONG (adj): Healthy, Powerful!

2009-08-31T19:38:00.004-07:00

Synonym: able, able-bodied, active, athletic, big, capable, MAXIMUS EVAN, durable, enduring, energetic, firm, fixed, hard-as-nails, hardy, heavy duty, in fine feather, mighty, muscular, secure!!! JUST to name a few!!

Max is keeping it up. Today, he graduated "down" to the traditional ventilator, getting him off of the oscillating ventilator. Now his lungs are doing an open/close motion, rather than staying expanded and just exchanging the air. This is super great, because it's been shown that too much time on the oscillating vent can do some damage to the lungs, and we SURE don't need more of that.

Max has been on a drip of Lasix for a day and a half now, and he looks SOO much better again! I know that when he's swollen up it's not a sign of inward unrest, but when he looks bad, I feel terrible! He just looks more unhappy or uncomfortable. So when he deflates, I'm happy! Jordan took some really cute pictures of the new and improved Max from his Blackberry today...enjoy!
I just LOVE this one above...he's been sleepin' a lot the past few days. He's working hard you know! Still has socks on those hands...and a towel by his face in between him and the breathing tube...two blocking methods and he still tries to get to it. Stinker. I love when he "deflates" because I think Max has the cutest nose ever, it's a little button. (I think it looks just like his Aunt Jill...) This next picture below is from today also; you can tell he's still a bit puffy, it's obvious when you look at his eyes!
Today the nurse moved Max's head to the other side, and he really fought that. You can see above he's sort of cocked to the right still, because he spent an entire week in the exact same position! UGH I felt for him, but the ECMO can be too touchy to move the babies on it. He's doing better, so they're starting to rotate him around again. Poor guy has a sore neck I think.

Dr. Kays and Dr. Dickie (the surgeon doing her fellowship for ped's under Dr. Kays- we looove her, she's kinda his eyes and ears, and is knowledgeable and fantastic) came by today, and Dr. Kays said he's really happy with the way everything is going with Maximus so far. He has not had any setbacks ever since his "event"! No specific news really, but Max is holding strong, making steps forward, and getting stronger every day.

Max has been really alert lately (well, he's either zonked out or wide awake!) so I felt badly that he didn't have anything to look at! The nurse and I had an arts and crafts moment, and used the IV bag tags to make a little "mobile" or banner for him to look at! i think he liked it. Also! This picture is a great comparison. This is two days ago; look how HUGE his noggin is. Round like a basketball! :)

After a day with Max's ghetto mobile, we mentioned to the nurse we were going to go get him a proper one. She disappeared and came back with this!
The nurse Jen said that people donated toys all the time, and this was back there! You should have SEEN Max. His eyes bugged out! He was so into watching the planes float around. How cute! It made me regret not doing it sooner, but he's just become more interactive in his 3rd week.

Our little Max man is doing well, thank you for praying for him!!! We will keep ya'll updated!
Love,
Claire

PS, I'm pretty much 100% better as far as that lovely infection side show goes. I saw an MDLC, "Lacatation doctor" if you will, and we don't have much to do about this situation! I'm taking some really strong herbal supplements that help a bit...but this is pretty much "it". I'm not quitting until Max can try to feed, but please don't hold me to that in case I have a total meltdown over it! :)

Also, we got FREE tickets to a Gators game for Saturday night!! woo-hoo!
(BYE!)

Ireland Rose

2009-08-31T12:47:00.002-07:00

Before Max was born, Claire and I had found ourselves wrapped into the blogging community surrounded by stories of CDH survivors and babies that didn't make it. Parents from all over the world seem to find our blog and share their story with us. We read these stories and were overjoyed at the successes and found ourselves crying at the failures. What completely blows my mind is that all of these people that we were reading about and feeling connected to, were complete strangers to us. We quickly found ourselves following story after story about CDH babies.

One of these babies that we started following was a little baby named Ireland Rose. She was born about a week after Max and things didn't look good at first, but then started to be a little more positive as she was about to come off of ECMO. Well, there were some complications and things got out of control for the doctors. Irelands parents were forced to make the decision that I don't think I could make...They choose to save their daughter from suffering and let her pass away.

When we read stories of babies passing away before I had Max, it was sad and we definitely cried, but something is different now. My heart is genuinely BROKEN for this family. I cannot imagine what they are going through right now and just would like if you all would pray for their family if you get a moment. The link to their blog can be found on the right side of our page. Thank you all.

In case you were wondering...

2009-08-29T20:40:00.002-07:00

He's still going steady!
:)
I quickly learned that 48 hours of radio silence from the blog is totally unacceptable! I was heavily berated by friends and family, so we will try to do better. Hehe!

Max's ECMO flow was weaned back a bit today, making him start to take over a bit more of the work. Also, his sedative and pain killer were cut in half. He was wide awake tonight for good night kisses, and I just LOVE that. His poor little body is still really big and swollen. He's not that big of a baby otherwise, but the nurses were called him Michelin baby...poor guy. Oh! Right, Max is also on a steady drip of Lasix, which helps him lose some of those fluids. I haven't seen the effects yet, but we will over the next couple days.

He didn't really make leaps or bounds in the last two days, but because he held steady while they weaned everything, that's considered good progress! We will take any steps in the right direction, even little Max sized ones.

If Max keeps it up, Dr. Kays projected getting him off ECMO "early next week". I learned last week not to get too excited or "push it", so I am not hanging on that. However, if Max can get off by Mon-Wed, that'd be just wonderful. I feel realllly bad for him because the ECMO tubes stick out one side of his neck, and the vent is off of the other side, so he's sort of pinned looking in one direction. It's been a week, so he's GOT to be sick of looking at the baby next to him. ;) I just want to have him moved, ya know?

One of Max's nurses (he has two because he's so super sweet) helped me make a "mobile" for Max with a bunch of IV bag tags that are bright colors. He checked it out for a bit, so hopefully it helps give his little brain something to look at until we hit up Target for a real mobile!

So that's really everything for Max!

Our friends Lauren and Derek's baby, Jude, is kicking BOO-TAY. He was extubated early this week, and a couple days ago moved down to NI2! He was learning to breastfeed a bit today, but has been taking the bottle okay for a day now! WOW! He was a worst case scenario to start, and he is a MIRACLE. So, thanks to everyone who prayed for him too! I can't help but feel almost happy-jealous for them...we would be where they are right now too if things hadn't gone nuts. BUT, life happens, and I have Max with me still so I can't complain about a few more weeks of "vacation" (please sense that word dripping with sarcasm...).

I'm trying to get to sleep at a reasonable hour again these days, Jordan turned me into a night owl for a while there. Good night Max fans, thanks as always!!

Love!
Claire

PS, many gas stations here close around 10pm, so if needed, we discovered Sai's Kwik Stop near RMH. There you can find wall to wall kegs ready for the taking, an overpowering scent of incense and pitchuly (however the heck that's spelled), as well as a vast array of crack pipes ERRR, "tobacco products" for sale. Ya know, if you're ever in the market. hehehe good night.

A Short One

2009-08-28T21:45:00.001-07:00

First of all, let me clear one thing up...I am not that big of a Lady GaGa fan...I more just like to make fun of how ridiculous her music is. Now that we have that out of the way...

Mr Max:

Max is doing SO much better than he was after "the event". We have been talking with the nurses and Dr. Dickies (one of Max's surgeons) and they have told us that he is looking good. We are looking at little steps as huge victories right now, but Dr. Dickies told us that Max had a BIG step last night and cleared a lot of the blood out of his lungs.

They do an x-ray every day and this morning his lungs were looking much better. You can see a lot more of his lung tissue and some of the other details in his chest so that is a big one for us! This is 100% due to how amazing God is and how many of you have been praying and pulling for our little boy. There was one other thing that got me really excited today when talking to the doctors...are you ready for this one? Max might be able to come off of ECMO as early as next week!! This would mean that we are basically back to the starting point, but we are MORE than ok to take our time with things and make sure that he is totally better.

That is really all the updates that we have for you all today. We appreciate all of you so much, and could not be more excited for each new day. God is just SO incredible to us and is showing us new things every day through our son. We are so so SO thankful. Talk to you all later!!!

How about a happy post??

2009-08-27T19:29:00.008-07:00

I'm kind of tired of writing depressing things. SO!! Here's the latest with Miracle Max (my dad's name for him), Mr. Max, Maxi-pants (NOT to be confused with Maxi-PAD, thank you very much.), Maxi-bear(mine...I know so cheesy), lil bear, Stinky butt, cutie pants, Maximus the great, tough guy (Jordan's), Wild Thing...I think that covers his daily nicknames, all used within a very short amount of time usually!
Ok, don't even try to tell me this isn't the cutest little face EVER... EVER. :) Well, I do understand if you have kids of your own, but come on, he is pretty stinkin' sweet. This is Max Tuesday, right after that bath that made me so angry, haha. He was pretty cold, like I said, so he's all bundled up. He just looked so cute with his hat on. This was a unknowing sign that he wasn't doing well, because he should have handled that bath better, and it really knocked him out for the rest of the day. His body was totally overworked. But I love the pic.

After "the event" (that's what Dr. Kays refers to his big crash as...) Max just looked really bad, so I like all the previous pictures even more. Two days into ecmo, the lung bybass machine, Max is pretty swollen and red. The body naturally holds onto its fluids while on ecmo, so that's a normal reaction. Today they gave him Lasiks, a diuretic that helps his pass some fluids. He looked SO much better after that. When we walked in this evening for goodnight prayers and kisses, my heart was SO put at ease seeing him a bit deflated. If you can imagine, these pictures are of him looking a lot less swollen than he was! (This first pictures are actually before he "deflated", but we wanted you to see how BIG he got! So, before:
Also "before":
This one is after his Lasiks, and a day to adjust to the machine:
I suppose he's still pretty darn swollen in this one above, but I swear it's a lot better. And, I'm so happy his color is getting back to normal. He was way pale before ecmo (matching his sheets pale) and now he's a nice pinky color. Yes, he still has socks on his hands, because the actual mittens they make for babies are a JOKE to Max, he had those suckers off in two seconds. Something about socks are a bit tougher to pull off. ;)

SO the medical stuff!
Dr. Kays came by this morning and had a conversation with us to clear up details and discuss everything. Basically, he is pretty certain (he never promises 100% on things...makes sense) that Max suffered a pulmonary hemmorage. This means his lungs were just doing so much that some blood vessels got overworked and burst, filling his lungs with blood. I asked why nobody "saw it coming". (I mean, lungs full of blood, wouldn't you see signs??) He said that it happens quickly, and even though they do an x -ray most mornings, it could have been happening that afternoon, and came to a head in the evening. He reassured us that our holding Max didn't cause this, it was a ticking time bomb waiting for a reason to blow. Since there was a pulmonary hemmorage, his lungs are now "injured" or damaged, and need time to heal up. That's what ECMO does, by skipping the lungs so they don't have to work. One other detail- it's possible that Max could have suffered some level of brain damage during the "event", because he was struggling so badly, and the blood saturation levels (how much O2 is flowing evenly in the body) were very low for a period of time. Dr. Kays said he doesn't think Max does have any damage, but said it's possible, so please pray against that just in case!!

We have been guaranteed a minimum of a 10-day stint on ECMO. They were able to ween him off of the Nitrous Oxide (NO2). This is a really good thing because it is just another thing that was helping him, but can do more damage than good sometimes. It's good because it keeps the lungs expanded, but can be bad because it can do damage to the interior of the lungs after a long time on, and we definitely don't need that! His "numbers" are looking ok so far...his oxygen is staying either steady or making little creeps upwards, so he's doing okay there, but would love to see it keep going up! He wasn't letting go of a massive amount of CO2 for a while, but has passed that now, so that's great.

We looked at his new x-rays, and Dr. Kays showed us that Max's lungs have little streaks of airways starting amongst all the blood. So, his lungs are very slowly starting to get rid of that blood; his body just sort of soaks it back up...essentially. This is a teeny step, but a step in the RIGHT direction!

The other new thing was the bronchioscope today. Dr. Kays removed one of Max's tubes (his stomach suction) and inserted a camera to see if there was any large clots of blood stuck in the lungs, and he didn't find anything. That is another small victory; now Max's body just has to keep moving that blood.

Ok, so...explained what happened (pulmonary hemmorage), how he is now (stable but kinda slow going), and what Kays did today...(Lasiks to get rid of fluids and the bronchioscope). Got it all!

We feel a little more encouraged today, especially once he looked a bit more like Max again. We are basically starting over, but who cares. Max is still here, and Dr. Kays was pretty clear that we could have lost him. I asked Dr. Kays if he thought Max would make it, and he said "I'm not gonna let him DIE!?" like I was crazy...haha. So he's feeling good about Max's odds. :) That's pretty much it more the medical stuff...thanks for being patient for two days while we recovered from the blow and got some answers.

NOW...

I know this post is getting long, but I NEED to post a few more random thoughts, most formed upon my time existing between a group home and a hospital...hehehe...

1. Elevators are very truth-telling cubes about people's...scent.
2. Sleep number beds are glorified air mattresses. (ok but im grateful I have a bed. yes.)
3. I am baffled by the efforts people go through to push their open back gown wearing, IV running, sick selves, into an elevator and outside to have a smoke.
4.Said smokers, as well as many others, smoking with their kids AND admitted (sick) kids in the presence!
5. ok, smoking in general. ew.
6. Why do so many people drive in parking garages at LITERALLY 3 miles per hour? I'm not kidding, we checked.
7. Sometimes my stomach gets nervous with Jordan in the parking garage, due to said slow drivers...road rage...
8. WHY rude people park crooked in parking spaces, even when the line are those square lines that give extra buffer between spaces, throwing the entire row of parking spaces into a tizzy...also sending us to the roof to park because so many huge trucks felt they deserved two spaces.
9. Wendy's and Subway are LESS expensive at the hospital than outside...little victories baby!
10. WHY DO WOMEN WANT TO TALK TO ME IN THE MOTHER'S PUMPING ROOM BEHIND A CURTAIN!!!??? can't we just pretend we don't know there's someone THERE???
11. I have not done my hair in a month straight...that's NEVER happened since I was allowed to do my own hair. It feels really frumpy, and kinda great. haha.
12. I am tired of pumping...especially when you're pumping dust. On that note, I have a doctor's appt about that tomorrow.
13. Jordan likes to yell OPEN and CLOSE in a very "open sesame" loud voice at the elevators and automatic doors just to see people's reactions.
14. If you find yourself constipated for 9 days after having a baby, get a huge coffee from Dunkin Donuts. Their slogan is 100% accurate...look it up.
15. We are SOOO homesick!
16. Jordan is lost in a dark pit called Mafia Wars on Facebook. I haven't seen him in a week.
17. There is a 3-year old named Germaine at the house who told me Michael Jackson is dead today....hmmm.
18. Little Germaine also asks me "where your baby at" EVERY day. I say, "at the doctor", and he says, where? I don't argue.
19. Jordan loves Lady Gaga, the singer, and I love to tease him mercilessly about that.
20. Max is so feisty, that they gave him the normal dose of paralytic for his procedure, and he still kicks and fights, so now they have to double up every time. GO MAX!

This last pic, I am quite proud of. I think it's very "professional" looking...and my sweet bear is so cute. I think Misty will appreciate it! :P
GOOD NIGHT ALL! KEEP PRAYING FOR THE KING OF ALL WILD THINGS!!! :)
love,
claire

Chaper 5: Max Throws Us A Curveball

2009-08-25T18:27:00.004-07:00

First of all, thank you to EVERYONE that prayed or sent up positive thoughts today for Max and our family. Last night was probably the longest and worst night of our lives. Everything was going fine until Max just CRASHED...and when he decided to crash, he committed to it. We went from talking about extubation to being on ECMO in a matter of 12 hours. That is one side of the card to the other.

As far as how he is doing now? Well, we just left the hospital and Mr. Max is stable. Stable doesn't mean that he is getting better or doing well. It just means that they have been able to get a handle on things. Right now, Max is doing ok, and his numbers are going in the right direction. The doctors are happy with what is going on right now, and are looking forward to a good night. Please continue to pray and pass this blog around to those you know would care if you want. We will take as many prayers as you want to give us.

Max's situation is still very, very serious, but things are looking a little clearer for us than they did 12 hours ago. Please just pray for healing. Pray against pain. Pray that he just gets better. Pray for peace and rest for Claire. This is hitting us really hard, and she has enough on her plate as it is...God has a good and perfect plan through all of this though.

These are really trying situations and Claire and I are determined to use them to refine our character and faith in our God and believe that He will still use this situation to benefit Him and those that know Him. We are praying that you all see God's love in this crappy chapter of Max's story, and understand that as much as we love Max...God loves each and everyone of you even more. We love you guys, and thank you again for reading and being awesome. Have a great night, and Claire or myself will update things as soon as we know anything. These our our verses that you can pray with us if you want:

2 Corinthians 12:9 - My Grace is sufficient for you, for my power is made perfect in weakness.

Romans 8:26 - In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. (emphasis added)

Changes...

2009-08-25T06:34:00.002-07:00

They just called us to let us know Max is going on ECMO.

By definition : In intensive care medicine, extracorporeal membrane oxygenation (ECMO) is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function.^[1]^[2]
An ECMO machine is similar to a heart-lung machine. To initiate ECMO, cannulae are placed in large blood vessels to provide access to the patient's blood. Anticoagulant drugs, usually heparin, are given to prevent blood clotting. The ECMO machine continuously pumps blood from the patient through a "membrane oxygenator" that imitates the gas exchange process of the lungs, i.e. it removes carbon dioxide and adds oxygen. Oxygenated blood is then returned to the patient. Management of the ECMO circuit is done by a team of ECMO specialists that includes intensive care unit (ICU) physicians, perfusionists, respiratory therapists and registered nurses that have received training in this specialty.

I really am not sure what to think right now...I am seriously at a loss at how we can go from getting ready to be extubated to getting ready for ECMO in 24 hours. This makes no sense...Please be praying for Max and Claire (and me). This is NOT the place we want to be right now...I feel totally helpless and I can't do anything to help him. This sucks.

Jordan

Time to call in that favor

2009-08-25T05:44:00.002-07:00

What a slap in the face.

Yesterday we were disappointed that Max didn't get extubated, his Co2 numbers had gone up a fair bit, so the plan was to hold off until today. We went in last night to say goodnight, and were met with the very happy surprise of getting to hold Max. The nurse said since he was getting extubated tomorrow (today), that it would be alright if we were comfortable. I hate that this post isn't just a silly sappy happy post all about that. Jordan will post those happy pictures later, but there's lots of news to share for now...

I held Max for a bit (best feeling of my entire life, long awaited), and then the nurse took him and Jordan traded places with me. Once settled in, Max just couldn't calm down and get settled, which was weird because he was totally peaceful with me. The nurse and respiratory therapist could see he was struggling a bit, so they raised his oxygen up a bit, and tried to make him comfortable. He was sweating bullets and gagging and getting a bit pale, so they had to take him back for his safety. (I felt badly that Jordan didn't get a better run with it) They figured he got a mucus blockage in his tube which isn't a biggie.

Once back on his bed, it became quickly apparent that he had major build-up in his lungs, so they tried many times to suction him out. (Inside his breathing tube, there is an inner tube that can be slid down into his lungs to suck out fluids) This is a normal process, they do it a lot, and Max has been hacking up a lot of mucus the past few days, so they thought he just had a big large "hunk" in there that got knocked loose from being passed around. That DID happen, but turned out not to be the main issue, sort of a symptom, signal, or side effect of what's next. The doctors guaranteed us that it wasn't our fault from holding him, not technically at least. Whenever he was moved it would have happened, but you can't help but feel at fault when you ARE the "literal" cause at that moment, whether or not it would've come to pass regardless.

They couldn't get him stable on the vent, and his blood saturation (sat, from here on), was terribly low in the 40's for a while. The sat is just how much oxygen is flowing properly throughout his whole body, from toes to head. He is normally at a perfect 100, and below 70 is poor. They detached the vent and "bagged him" with a hand pump, so that they could flush saline in and suck it out, while controlling his breaths better. They paged Dr. Kays at this point, seeing that he was worsening.

They called for an X-ray, and saw that his left lung (the "bad" one) is completely "whited out" as they say. After not being sure for a bit, they learned that it was full of blood completely, and his left lung is 80% full of blood also, so he was not getting oxygen through his lungs really, mostly through the machine assistance. The cause is not clear, they just know that it had probably been happening all day, coming to a head when he was moved around.

His cerebral sat monitor (the little forehead monitor you've seen) was not on his head yesterday because he was going to be extubated. His nurse jumped the gun by removing that, it was against Dr. Kays directions. Because of that, we don't have stats from a monitor on what happened to his brain activity during this episode, and Dr. Kays said we can't know if he suffered any brain damage during the trauma of stabilizing. Also his lungs are damaged from this; they can heal, but it's a tougher road.

Dr. Kays put him on an oscillating ventilator rather than his regular one, because it is specifically "good at" keeping the lungs open and maximizing oxygen intake. It sounds like an engine running, and it makes his chest and body kind of vibrate. :( This is a step to try to avoid ECMO, the heart and lung bypass machine, which is a very serious step. They are also keeping his body temperature cool, to help protect his brain. Dr. Kays said that studies have proven it can help lessen and/or prevent brain damage when cooler.

Jordan and I stayed through the night in the NICU3, and did sleep in a waiting room for about 2 1/2 hours. When we woke up a bit ago to check on Max, but he is no better. They said that he is stabilized, but not improving yet. His Co2 is at 125 (normally around 55, above 70 is bad), and his oxygen is fine because they are feeding it to him. His lungs are still full of blood, and they sedated and lightly paralyzed him so that he would rest. He was really squirming, fighting and crying for a while last night.

So, he basically crashed hard last night. Thank God he wasn't extubated yesterday, because if he hadn't had the tube already, he may have died last night.

We are at the Ronald McDonald House now. We are both kind of delirious, so we're going to sleep (try) for a bit before going back, and we can't touch him, so it's best just to let him be for now.

Obviously, please be praying for Max. Not just saying "we're praying for you", please really stop and pray. Call in that favor with God you've been saving, Max needs it more than us right now.
I'm just totally devastated, and just now kinda feeling all this. I guess we wont take progress for granted anymore. We will keep this updated when anything changes, and thank you for the true support and concern. Thanks for understanding if you don't hear back from voice mails or emails for a time.

Thanks,
Claire

Mischievous Max!

2009-08-23T05:21:00.006-07:00

I am so excited!

Yesterday Max's numbers were doing better, inch by inch, in spite of his being irritable! (Usually if they are worked up, it shows in the Co2) A few minutes ago I called to check up on him while I got ready to go down to see him, and his Co2 is all the way down to 48!! wow!! That's really, really great in laymen's terms. Also his oxygen is at 108 and that's awesome as well! This is a really positive thing because it should hopefully keep him on track for extubation tomorrow. HOORAY!!

Now, yesterday I wrote about how little stinker has been fairly irritable since all of his sedatives and pain killers have been gone, pulling on tubes and crying, etc. Well, when I left in the afternoon yesterday he was sock-handed like you saw in the picture. When Jordan and I went back to say goodnight after he got back from dinner, this is what we walked in to see:
So, I KNOW we should not have thought this was funny, but COME ON....he's TIED UP. Our sweet loving nurse Jen insisted that he is NOT tied up and it was a partial swaddling (couldn't cover the line in his foot), but we know better. Jordan called him the mental patient baby!! HAHA we were just dying. It was for his own good, trying to make him cozy and keep him away from his tubes. I put my hand on top of him, and I could feel his little arms going crazy trying to get free...and he did! It only took about ten minutes before his little fingers were poking out under his chin. This little boy is ready to be cut loose, so I pray Monday happens for him. Jen said she even tried some tummy time since that calmed him down the other day, but she said that he just started scooting himself away. Jail breaker!!

Since all this was happening, Jen (the nurse) suggested we give him a little "bird bath" to relax/tire him out. I was really excited to help with his first bath! He deserved it anyways, it's been 13 days since he was born, and was never bathed in the first place because of intubation and stabilization, etc. Max really liked it, hehe!! He especially loved having his little back rubbed and washed. Afterward, he was really relaxed and slept well. Good thinking, Jen! Here he is all clean, cozy and sleepy afterward. I put his little blue Max beanie on his head!
Sorry the picture is a bit dark, but the NICU is very low-lit and quiet at night. Isn't he sweet?

So, little Maximus is doing just AWESOME, and I am so grateful. Jordan and I pray over that baby so much I'm surprised he's not physically glowing by now! ;) God has been so faithful to us.

I hope that he has a calm day today; gives himself a break. Marlene (day nurse) told me he's on his tummy this morning as is happy thus far. I'm gonna sleep for an hour here, pump, and go see him!

Oh darn, one more thing! Dr. Stevens checked me out this morning, and said it will be another day or two of antibiotics...so I'm not going anywhere soon. But I'm fine! :)

Miss everybody!
Claire

Cutie Pie Update!

2009-08-22T16:18:00.006-07:00

EEK! My son is so stinking cute!! I get such a kick out of understanding what moms are always talking about now. How much you love them, and how they are "so much cuter" than any other living being!! Well, now I get it, and he IS the cutest thing on earth! :) Ok ok I digress...here's Max tired and happy...

Tonight Jordan went to dinner with some staff we made friends with in the NICU3, so I went and spent some extra time with Max before dinner! I was getting really upset inside (I don't like to show it and feel like I'm the cooky emotional mom they have to deal with) because Max was just so upset! For those of you who haven't see it before, an intubated baby trying to cry is just about the most pathetic sad thing to watch. His little face gets all twisted and he turns all shades of red, then his mouth just gapes open silently. UUUHhhh can't I take it for him?? I changed his diaper, and wiped his lips, but he wouldn't cheer up! His nurse came over to help him out because I finally said, "Oh it's killing me that he looks so uncomfortable!". (Don't get me wrong, she's taking wonderful care of him...they're just more used to crying babies than me!) So she turned him onto his other side towards the window, sucked out his nose and mouth, and turned his head. He calmed way down! :)

He is totally off of any sedatives now, it's all worked out of his system. The only thing about this is that now he's a little too excited, and tries to pull tubes out of his mouth. It's partly because he just likes sucking on his hand (mom was a thumb sucker!), so he wraps his fingers around it in the process...then gets sneaky about tugging. Little booger. ;) Our nurse put little baby socks on his hands to keep him at bay, and he really doesn't seem to mind it. We have some of those mittens for scratching at the RonMcDon house, but there not doing much good there! Socks will do til we get them over here.

Max's Co2 gas went down from 68 to 55 today, and his oxygen went up! Good improvement, he got used to all that weaning they did over the last few days. I was really glad they just let him have a day off, I want him to be ready for extubation on Monday if possible. Now he's at 20 breaths per min, and I believe they extubate at 13 or 14 (Jordan would know!). So that's very very doable tomorrow, keep your fingers crossed! If he gets extubated Monday, it would only be a day or two before I get to HOLD HIM. EEEKKKK!! I'm going to DIE. :)

He has a feeding tube down his nose now that goes past his tummy into the top of his intestine. Skipping the tummy for now helps him keep the milk in. He get 1mL of breast milk/hour and the rest is the same solution he's been getting that's just a lipids and nutrients mix. No spit up or vomit from it yet, and that's a good thing!

After he's off breathing tubes, feeding is the last step. He shouldn't have too much drug rehab since he's been off everything for a few days already, so it's just all about eating. Feeding tube through the nose for a bit, then a bottle, all so that they can measure what he's taking in. Then we can give breastfeeding a spin...puh-leez let that be the key to my body kicking into high gear. (Milk production-wise, I mean.)

Ok! I think that's the Maximus Evan update for now...hm...gave you his numbers, projected plan...cute thing for the day, picture...yep got it all down!

I'm still here in the hospital, tomorrow will be day four! (but day 1 started at 10pm, so more like three) I love being down the hall from Max, but I'm getting a little tired of being here. I've had five bags of antibiotics, and I think it's working. The redness has receded, but I'm still pretty swollen. Anyways I have a 6th bag at midnight, and then a doctor is checking me in the morning I think. I guess then I'll know when I can leave. I just want to make sure this is going AWAY. ugh. Something about hospitals makes a girl instantly feel FRUMPY! :) (AND that I need to lose 15 pounds!!) I lose all motivation to dress, or "do myself up". It's all about a shower and sweats.

I'd lastly just love to say how much I adore Jordan. He is absolutely the best (adult) thing that has ever happened to me. (Max is the best baby thing!) He is such an adorably loving, and strong Daddy. He is so sweet to Max, and so ready to help me in any way I need. I couldn't be more grateful for him. Do you know, the other night we went to dinner with Jordan's parents and Grandma. I was super stressed because the timing was going to push my pumping back like two hours. That's bad because since I'm having trouble pumping, being regular about it is important. An awesome friend of mine gave me a Medela pump that's small and travels well, so I brought it to just pump in the ladies room (I know, I know...but ya gotta do what ya gotta do). There was no plug, so I came back. Jordan saw that it upset me (I try to cover it!), so he left the table and ran across the big street to buy me batteries for the pump. What a romantic hero! :) He relieved all my stress. How lucky am I?!

Yowza this entry turned into a major ramble...I must be bored tonight! Well now you know all the things going on with Max, Jordan, and I! :) LOVE YOU MISS YOU!!!

Love,
Claire

ahhh YAY Jordan just got back!!!!

Getting Closer...

2009-08-21T16:05:00.002-07:00

Another quick word! I am just so excited by these steps that I haven't wanted to wait to formulate a big interesting post about it.

As I said earlier today, Max was starting to overcome that little bit high of a Co2 level, and we were happy for that! We figured Dr. Kays would stay in that "holding pattern" for the day, since Max was bouncing back slowly (not that he ever was very bad). When we went down the hall to spend more time with him this afternoon, Dr. Kays had called to have Max's vent turned down even more.

They took him from 24 to 20 breaths per minute...which just means more of Max doing the work on his own. I was so surprised by that further action, but ya know, Dr. Kays has successfully rehabilitated many many babies, many more than anyone in the country. I think I'll trust his opinion on the weaning plan!

I am anxious to see what Max's blood gas is at 8pm tonight, after another vent change, and him not totally catching up yet on the Co2 stuff. But, Jordan made a really good point. We have been really fixated on anything above 50 being bad for his Co2, but that's not really the case, it's just a ballpark. If Max is at 62, and if that were bad, Dr. Kays wouldn't be making changes. So we are going to try to not hang on the numbers on the monitor so much. Other families told us we'd become stats obsessed because it's just one way of understanding, and they're right. We are going to try to step back from that, or at least not expect such specific results.

At this rate, if Max continues to take it, I hooooope HOPE the ventilator is off by Monday!! eek!

Also, looks like I'm spending another night here, my swelling is down, but still pretty big. Yuck.

~claire

FYI

2009-08-21T10:52:00.002-07:00

Hey there!

We just got another gas report, and Maxy-pants's Co2 went from 67 to 62, and his oxygen is staying up. So, he's getting used to the changes! :) Hooray...

I am sure this sounds totally weird, but I'm sort of enjoying being in the hospital. I feel fine, so really I just have a TV, bed, and internet access right down the hall from my baby. Not that I want to have an infection...haha. Just thought I'd share. I have another IV at 4pm and 8pm, and another overnight I'm assuming, then probably checkout tomorrow. I am actually resting though! So, God maybe found a way to force me down? ;)

Later!
Claire

All KINDS of things

2009-08-21T08:40:00.005-07:00

Um...ok. Well, I see why this CDH thing is a roller-coaster for parents. I know that there are ups and downs with this things. I know that Max is going to have days that are not as fun as the one before, but it still doesn't make it easy. Here is the deal...

Dr. Kays put Max on a weening plan from his ventilator the other day and was projecting that Max would be extubated today. Well, after getting him down to 26 breaths per minute (our goal is 10), Max seems to have hit a little wall. They want his CO2 numbers to be 50 or below and he is sitting at about 66.5 or 67. That is a pretty significant difference, and he is just holding there. I am not sure what the doctors plan to do, but as a dad, it is just frustrating that nothing is happening. I tend to be a bit of an impatient person to begin with so this is hard for me. I know that I need to just wait though.

The doctors did take him off of all his sedation and pain medication so he will be more alert and things in the days to come. He has been looking around more and more and that has been a LOT of fun for Claire and I. We are hoping that Max kicks some booty this weekend, and we can do the extubation on Monday or so. I just want him to get better. On a HAPPY note...this is what I walked into this morning:

Yep! Mr. Max is on his tummy! This was the first time that they have flipped him, and they said that it could help with his co2 numbers. It also is just good for him to be in a different position. Isn't he cute?!? We cannot wait to be home. Well, Max has another blood gas this afternoon. I will update you all then.

Just a quickie!

2009-08-19T20:14:00.002-07:00

Hello there! I wasn't going to blog tonight, but I thought I'd just quickly send out the update.

We filled you in on the great, amazing news that Dr. Kays has started Max on a weaning plan to get him off of his ventilator and oxygen. He had cut his vent and O2 down quite a bit, and we were waiting to get a blood gas report to see how his little body took the change. (Blood gas reports the amount of O2 Max is taking in, and how much Co2 he is retaining...which we dont want much) So the next day, which was this morning, we called the nurse for the stats. She had an average to poor report, that his Co2 had jumped a little high, but his oxygen was okay. A bit low, but okay. However, they didn't raise anything back up so that they could give him a chance to ride it out and improve. Eight hours later, Max was due for another "gas", and he had drastically improved! ;) YAY MAX!!!

Basically, the original vent changes were sort of aggressive, so his body kind of panicked a little, and had a hard time processing the Co2 coming in since he was recieving less assistance from the machines. He pushed through it on his own though, and throughout that 8 hours got adjusted to that level on his own. That is exactly the process, and he got an A+++. Gooo Max!

So, a funny thing. After Max demonstrated this good behavior, we were sitting in the NICU admiring him as usual when Dr. Kays came by again. He's pretty quiet and dry, so I asked "How are you?" and he said "Max is good, so I'm good" and turned his vent and O2 down MORE. Then he just started walking away like it was no big deal and I said, "this is a good thing then?" and he just looked back and said "yep." and kept walking. Funny surgeons. Anyways the point is, he had been "turned down" a second time in two days, and this time he took it easily in stride. A tinnny raise in Co2, and an increase in oxygen. That just shows he can handle this weaning process. Amen Jesus!!! WOOO!

The end point is, is Mr. Max keeps this up, he will be VENT FREE by Friday or Saturday. I will get to see my baby boy's mouth for the first time. So far it's been just a part of a lower lip. You have no idea how little things like that make my heart explode...such as opening his eyes and looking at me. Speaking of that. He was really alert this afternoon, and I was laying my head on the bed next to his looking at him, and he locked eyes with me for a good minute. My heart just soared...it was one of those moments where I knew he knew it was Mommy. Ahh I die. Those moments in NICU are so very important for me. (and him i think)

So, medical stuff is AWESOME still.....just wanted to update you since things will be pretty active and quick moving over the next few days.

Gigi (Grandma Griffin), Max's Great Grandma came to meet Max today. She sang to him and prayed a blessing over him with me. It was really special to have her there. :) And of course G-ma and Papa had another day today with Max, but they said their goodbyes today to fly home tomorrow morning. We were so lucky to have them for a time!

We will be in touch! :) Sorry no pics, I just wanted to be quick.
Love,
Claire

Um...WOW. What a day!!!

2009-08-18T19:36:00.003-07:00

Ok. Well, where do we start? My parents flew into Florida last night, and got into Gainesville around midnight. They got to their hotel ok, and went to bed.

At about 8:30 this morning, Claire and I went over to say good morning and have breakfast with them. We had called to check on Max but the nurse was busy and couldn't give us an update on what had happened overnight, so we didn't have anything new to share with them. It was SO good to see my mom and dad. I have not seen them in over 2 weeks and it is a welcome treat to have them here! We finished breakfast and headed over to the hospital.

Before I go into what happened from there, let me just say that this is my parents first grandbaby and we were actually nervous/REALLY excited for them to meet him. As we rode the elevator up to the NICU my mom was literally shaking, she was so excited.

The NICU usually only allows for 2 people to be at bedside at a time, but Claire went into smooth talker mode (usually my job), and they let al 4 of us go back. Claire got in first and as my parents and I were scrubbing in, she came running back and told me...are you ready for this? "Jordan! They said that they are going to extubate Max in 4 days!!!" Are you kidding me?!?! Our little man has seriously been kicking some CDH booty, but this was way more than we were expecting!!!

He was doing so well that Dr. Kays had moved his ventilator settings from 75 breaths per minute down to 40 and lowered the oxygen level as much as he would ever go. They lowered the pressed on the vent too to allow Max to start pushing and breathing more on his own! As he was telling us what he was going to do, Claire just hugged him mid sentence and said "I just love you SO much!" So here is the plan...

Over the next few days, they are going to be pulling blood every 8 hours to make sure that he is getting enough oxygen and getting rid of enough CO2. If the numbers are good, they will lower his vent every day until they remove it completely! This could mean that Claire and I could hold Max for the first time this weekend, possibly! His numbers tonight were really good, so keep praying! If all goes well, we may be able to start heading home in a few weeks!!!!

This has been such a HUGE blessing for us as we were prepared to stay here through October! We are just SO thankful for all of your prayers and support. We are 100% convinced that Max is doing so well because all of you (and mostly God). I will update more on the shenanigans that my family and I caused today at Lake Alice and around Gainsville tomorrow or so. I am just to thrilled by all of this news that I don't want to spoil it. Max is a rockstar. We love you all and as promised, here are some pictures from today:

Max wakes up and Claire takes a NAP.

2009-08-16T18:50:00.002-07:00

Hey all you Max-fans! I thought I'd give you an update...

Last night was our version of a "dip" for Max. What I mean is, his dip was not too bad, so don't sound the alarm. However, his Co2 levels got a bit high, and his O2 got a little low. When we arrived at the hospital after breakfast to say good morning, the Nurse Practitioner was raising his oxygen from 40% to 50%, and raising his respirator assistance just a bit to 75 bpm (breaths per min). Something that they saw in an x-ray was fluid building in the chest cavity, just as we were warned would be a possible negative side effect. Because of this, they started Max on Lasiks, a diuretic, to help him pass some of the fluids he was holding. HOLY COW did Max let go of fluid!!! Normal peeing for Max is about 7-11cc's per hour, and he's been doing great maintaining that. Today from noon-8pm he peed just under 500cc's. For all you basic math fans, that's 62.5 cc's/hour!! I kid you not, the baby looked like a water balloon that had a hole popped in it...his face, arms, legs, ALL got skinnier haha! Jordan and I both agreed he looked more like Max again; we hadn't realized how swollen he had gotten. So, we will wait for another x-ray to see if that fixed the fluid build up, but the respiratory therapist said it's extremely likely if that much fluid was passing.

Here he is this morning, before Lasiks. I don't think he looks too puffy here actually. There's a window right behind him in his new spot, so he gets real sunshine in the morning! :) I realllly love this picture. The nurses rotate him all day so he's not sore just on his back.

Another VERY COOL story for you! The respiratory therapist came by tonight around 9m (we are there...a lot.) to do another blood gas check (for Co2 levels, etc), and said that the day of Lasiks had vastly improved all his numbers. So, everything from last night being dippy is improved to better than before. Now, if that holds stable and the underlying cause of the "dip" is resolved, they can resume weaning the O2 and respirator assistance. BUT the cool part: he said that Max's blood test showed he is producing a high number of antibodies, which pretty much wont or can't happen without treatment such as giving antibiotics, etc. SO, thank you God! Little Miracles! :) I think God just gave Max some free antibiotics to make sure he got through his slump okay!

That's the summary on the medical side. On the mommy side, he is starting to stir and wake up a bit now because they've been cutting back his fentynol and versad, which are the pain killer and sedatives. Being more alert helps him to breath and heal on his own better. The perks to that for ME are that he opens his eyes and looks at us now. It just KILLS me! He looks so sweet and sleepy I just melt. Having his eyes open up felt like I was meeting him again for the first time, because it connected me to him even more. He has super dark blue eyes (like all babies, I know), so we will see what he gets since Jordan has blue eyes, and so does my dad. Maybe there's enough blue-eyed power in the genes for it to stick! I hope so.

The nurse gave us a preemie pacifier tonight to let him chew on a bit, because he chomps on his respirator tubes. He can't get suction because the roof of his mouth has tubes on it, but he seems to like "gumming" it and licking it. It's pretty stinkin' cute.

We brought an Ipod dock in to play music for him! Jordan found these cd's called Rock-a bye baby, which takes regular music and turns it into lullaby sounding music! We have everything from the Beatles and Beach Boys to Metallica and Coldplay. It's so cool because there's no lyrics, and it's super soft and sweet sounding, they just use the melodies from the songs. That way, the nurses and us can listen to music with him that wont overwhelm him, but it's not cheesy or obnoxious music. Pretty neat discover on Jordan's part.

Lastly, I actually took a nap today! Whoa!! I have been hanging by a thread for a week now, being that I pump every two and a half/three hours, on top of a C-section, being away from home, and watching my BABY in the nicu. Little daily meltdowns have been taken in stride by my ammmmazing husband, but something's gotta give! I crashed hard today, and it felt great. I think I may take one of these nap things every day! :)

Oh, this is the REALLY last thing...I am not "producing"!!? (BOYS now is your chance to stop reading...sorry) Seriously. No breast milk from this cow. Just a couple Ml's every three hours. I am going to call the lactation consultant tomorrow and see what I can do. I've heard it all, but it's been 7 days now, and even for a c-section, things should be progressing by now. I am drinking literally about 3-4 liters of water a day, trying to focus on a pic of Max during, I have his little hat that smells like him (I know that sounds creepy...), I do a little massage first to try to help let down, my pump fits properly, blah blah... but I think the mini-depression and sleep deprivation take their toll. So we shall see what this LC has to say. Feel free to say a booby prayer though! :)

Thanks again SO much for praying for our little wild thing, he is doing REALLY really well, better than most CDH kids do. God is GOOD!

Love,
Claire

Chapter 4: Max Starts Recovery

2009-08-14T19:10:00.003-07:00

First of all, I want to say that my son is a freaking stud. No joke. Our little guy had surgery yesterday and it is like it didn't even affect him! Claire and I called twice during the night last night to see how things were going, and how he was doing. The nurses just said "He is doing excellent!" His CO2 was down, his O2 was up, his PH was in a good place, his saturation numbers we as high as they could go, and he was peeing 11 CCs an hour.

This is just a bit of the stuff that we have been watching to monitor how things are going. Dr. Kays said that they probably wouldn't touch any of his ventilator settings for 48 hours after the surgery because it would probably mess him up. Well, Max wasn't having any of that. His numbers were doing so well that Dr. Kays actually was able to ween him off some of the support over the night, and he was stable enough to move rooms today. Here he is with Mom in his new diggs:

We are still in NICU 3 but we got moved over a bay so we are not isolated any more. We seriously have the greatest nurses ever. Sandy has been helping us the past few days and even let Claire and I bring in a new sheet for his bed. Our friend made it for him and we decided that we want to win the love and affection of the NICU staff through bribery. Since we are on the University of Florida campus, we are officially Gators fans, and Max is too. Our friend also made the blanket that is sitting next to him as well.

We really are so blessed to be here. We have made some great friends and been treated with such kindness through this whole ordeal. So a big "Thank You" is in order to all of our Westside Baptist family that we have met these past few weeks! You all rock!

Frankly, there isn't much to update about except that Max is a superstar mutant super healing baby! His numbers are incredible and we are looking great! At this point we are just taking it day by day and doing what we can.

Claire and I are finally taking a little more time to ourselves and getting some well needed rest. In the past five days we have had a baby, Claire had major surgery, our newborn son has had major surgery, Claire's mom has come and gone, and we are 2,016 miles from home. It has been pretty stressful, but we are doing it!

We are very much looking forward to coming back to Arizona (where it doesn't rain every 5 minutes), and seeing all of our family again very soon! We miss you all and think about you guys all the time! Much love!

Here is one last picture of Max before we go. He is PASSED OUT from the sedation medication that he is on. They are weening him off of that too! Goooo Max!

Chapter 3: Max Has Surgery! (And shows it who's boss.)

2009-08-13T17:43:00.015-07:00

Is this the face of a TIRED little boy or WHAT!? Here is our beautiful Max after a long day of surgery.

Well the short version is that everything turned out okay! Now, for the details!
We arrived at Shands at 7:30am to say "good luck" before Max went into surgery at 9am, but it was then pushed back to 11am...so we waited! And, waited...and waited! About 3pm, Maximus was back in the NICU3, and Dr. Kays met Jordan and I in the conference room to "de-brief" the surgery.

Max got through the surgery really well physically, as far as no scary blood pressure dips or anything life threatening, which is great! The issues in focus for the procedure were his left lung and the organs being moved. SO...his left lung was much smaller than expected. It is about 20-30% of what a normal lung should be in size. (He is missing 70-80% of that left lung) This is not good, but the lung will continue to stretch and grow, and an underdeveloped lung is not detrimental to his quality of life. It's unfortunate, but not the end of the world.

Next, is the hernia in his diaphragm. The hole was also much larger than Dr. Kays expected. His exact words were, "It was a pretty damn big hole"...haha. So, instead of being able to do a muscle-to-muscle repair, he went ahead with a Gortex patch to fill the space. The only negative to the patch vs. muscle to muscle is that there's a small chance (about 5%) that it could re-herniate because it doesn't grow with his body.

Here's some awesome gross pictures for your viewing pleasure!!

What you're looking at on the left is the gortex patch over the hernia (hole) in the diaphragm. I was blown away by the intensity of those stiches-they look like rope! Dr. Kays said that's obviously because they want it staying put! On the right is Max's small left lung. You can see how much open space there is around it in his chest cavity, now that it's not packed with other organs. It has some room to grow!

A few more details (Sorry I have to be thorough!) for you! One thing they will be watching with this open chest cavity is fluid filling it. Fluid is okay, but if too much fills that open space, then it will continue to deter growth of the left lung, as well as keep the heart from migrating to where it belongs. So, they will be draining fluid as necessary, but this is an area of caution.

Lastly, are his intestines and the surprise they gave us. Dr Kays said that the small bowel was very tied up, twisted, and stuck together; all which he hasn't seen before. This posed a problem because he had to battle with it to straighten it all out, so that everything could pass through it healthily and not get blocked up. Cutting into it was not a wise option because in the midst of so much other serious change within Max's body, it would only raise the chances for serious complications or infections. He said it appeared successful, but these next few days will show whether or not any further bowel repair may be necessary. We just have to wait on that.

Here's Mr. Max all fixed up! (His face is covered because they had the bright light on him while re-situating his tubes, etc.) You can see his tough-guy scar, and his big TUMMY now that there's organs where they SHOULD BE!! :)

He had quite an amount of tubes with him/attached to him when he came out, poor guy!

These are the faces of two tired, relieved parents!

We are just beyond words about everything.

This whole pregnancy has been waiting for today, to repair our son's defect! There has been so very much pain and worry leading up to this, and we are so grateful to God that everything went according to plan. Jordan and I feel grateful to Dr. Kays, and ALL of his staff that made this possible...we aren't sure we would have had a similar result anywhere else.

From here forward, Max will be very sedated for a few days to help him be still and recover. Then, it's anybody's guess about how long it'll take him to fully recover. The ballpark is 4-8 weeks, but Jordan says we are coming home on September 22. :) Just a feeling he says! I don't care, as long as he is well!!

Thank you EVERYONE for the overwhelming support and love. God is so good, and faithful. We absolutely have nothing in this world without His love, and He has carried Max and us through this! Please, for you prayin' types, keep it up! Maxy still has a serious road ahead of him; this isn't close to over yet.

The next few days should be quiet, but I'm sure Jordan will update ya'll anyways!
(BY the way, I'm recovering just fine...I need to slow down a bit actually. I seem to think I can do whatever I want, and am paying for it at the end of every day. Now that I got past this tough bit, I am for sure going to take it slower...focus on getting used to pumping and get some rest.)

I LOVE YOU ALL! :) Here's one more pic of my sweet, tired, puffy little man! :)
I am so in LOVE.

Love,
Claire

Day 3 - Short Update

2009-08-12T19:03:00.002-07:00

Hey guys...not much new today. Max is still rocking and rolling. Stable and doing his thing. They were able to insert his PICC line today and so that was a good thing. It was the second attempt to get it in and they were successful. :)

Claire was discharged from the hospital and is back at the Ronald McDonald House with me tonight. She is doing GREAT. She is up and about and doing things on her own. The nurses were really impressed with how quickly she recovered. They said that Max seems to have the same spirit.

Speaking of Max...he will have his repair surgery tomorrow at 9am Florida time...so that is 6am to you in Arizona. Dr. Kays told us today that he could do the endoscopic surgery, but felt like the traditional repair would give him a better chance to fully fix things and do it correctly. We said that would be fine, and are looking forward to "Chapter 3: Max Has Surgery"

Well, that is all until tomorrow! Have a good night/morning!

Day Two!

2009-08-11T19:27:00.005-07:00

Well, we had another good day today with Mr. Max. He is showing all signs that everything is going in the right direction. The thing that we need to remind ourselves is that a lot of these CDH babies have what the nurses and doctors call a "honeymoon" phase. They start off doing really well, but then can crash later on.

We are just praying that this will not be the case for our little man as the days continue to roll on by. I am back in the Ronald McDonald House tonight and miss my wife and son.

Today started off with Claire telling me that she got a good nights sleep (finally)!!! It seems like every time she starts to get really ready to sleep, another knock on her door, another doctor, another check up, or SOMETHING is waking her up. She is a rockstar though and I couldn't be more proud of her. The nurses told her that she was the easiest patient on the floor and was recovering very quickly. She already has all her IVs and everything out and was up and walking around today. She walked down to the NICU this morning with me to say good morning to max and I was able to get a good shot of the two of them:

Max was fast asleep at the time, and was just hanging out and doing well. I really like to look at all the monitors and numbers and try to figure things out and see how he is doing. I think that is just how my brain works, and I have seen some cool trends. His CO2 levels and oxygen levels are still really low and Dr. Kays lowered his breaths per minute from 34 to 30 and oxygen from 60% to 50%. Obviously we don't want to have a ventilator at all but that is getting down there. Room oxygen is about 21% so we are getting down to that area as well. Max is seriously doing GREAT.

This afternoon I went back into the NICU to visit and it looked like Max had decided to see who had come to visit him!

He had opened one of his little eyes and was looking around the room at everything! This was the first time that I had seen him awake and was blown away! As cool as everything has already been and all the love I have for him already went up like 3804823408563954982923%. Being able to see my little guy moving around and looking at things was HUGE. But then....

I didn't pose this picture. I was sitting there and just talking to him and he looked at me, reached up and grabbed my finger. I really almost lost it. I don't know if it was just reaction or what, but I really felt like he was just letting me know that he was going to be ok and wanted to just pray with me for a bit...so we did.

As far as surgery is looking...Dr. Kays and his team are looking at doing Max's repair surgery on Thursday sometime. He may be able to do a type of surgery that doesn't require him to do the full on incision and just make a few small cuts. This would speed up recovery time (hopefully) and allow us to bring our little dude home!! We couldn't be more excited.

JUDE UPDATE: In some of our last postings you may have read about the friend we have made here that has the CDH baby as well. He was delivered yesterday as well and is in the NICU bay right next to Max. They were able to do the repair surgery on him today, and our friends said that it went better than the doctors could have hoped! They thought that he would only have about 10% of a diaphragm when they went in there but found out that there was about 50% of one! This is dramatically increased his chances of beating this with Max and getting to go home. It also lowered his chances of having to go on ECMO (heart and lung bypass).

That is really all for now. It is about 11pm here and I am going to bed so I can get back to the hospital tomorrow and hang out with Claire and Max. Thanks again for all of your support and notes. It means more than we can say! Night!

HAPPY MAXDAY!! (Slideshow at the bottom)

2009-08-10T13:12:00.004-07:00

Wow! At 9:58 this morning Claire and I were given the best present we have ever gotten. Maximus Evan Griffin was born at 6 lbs and 10 oz. We didn't get a length measurement because they rushed him off to get intubated right away. Let's run through how the day went...

Claire and I woke up at about 5 am this morning and just hang out for a bit because we knew that we didn't need to check in to the hospital until 7:30. We talked, prayed, and just sat around feeling excited for what was about to happen. At 7:20, we left to go check in and get this ball rolling.

Claire, her mom, and myself got to the hospital and sat around FOREVER. Seriously. It felt like an eternity just waiting for the next person to come in. Finally, Dr. Kays came in and said it was time. Claire was wheeled out into the O.R. to be prepped for her C-Section. After about 20 minutes, I was called in and we got things going.

I sat next to Claire's head and about 25 different doctors, residents, attendings, surgeons, students, interns, dancers, florists, and every other type of person pranced around the room. Claire looked over at one of the doctors and asked "You are going to tell me when you are going to start cutting, right?" and he looked at us and said "Um...we are almost done." Whoops!

This is where it gets fun for us...everyone in the room got quiet and turned to watch the doctors work on Claire. We heard "Baby is out!" and then the sweetest little whimpers and cries you have ever heard. I lost it and started crying right there with Claire. Max wasn't supposed to cry!!! We were told that we wouldn't be able to hear anything, but God had a different plan for him!

They immediately rushed him over to a table to my left and began to intubate him. Dr. Kays was standing there with the interns and students as he took care of our newborn son and showing them how it was done. They intubated him, and then invited me over to cut the umbilical cord. I cut the cord, and Dr. Kays and Max were on the way OUT the door!

He was rushed into NICU 3 here at Shands and Dr. Kays and his team spent about 2 hours getting all of his tubes and things ran so he would be stable. I was able to go down with my mother in law and see him while Claire recovered from the surgery.

OH MY GOSH. I seriously wanted to die. He is SOOOOO little. He is SOOOOO precious. He is SOOOOO my SON. Holy cow. I now feel like a dad, and I really could not be more blessed. God is SO wonderful.

We asked the nurse that was checking him over right then what was going on, and she explained that Max was doing about as perfect as they could ask! His CO2 levels were low. His pressure on the ventilator wasn't high and pushing too hard. He was a little frisky and didn't like all the tubes down his throat, but he was seriously kicking some serious CDH butt!! Claire is about to be able to head down to see him for the first time, so I am going to be with her for a bit. I will update more as things progress. He may be able to have surgery as early as TOMORROW.

Thank you all SOOOO much for your prayers, thoughts, emails, comments, Facebook messages, everything. You are all so wonderful and we appreciate you so much! Here are some pictures of what happened today!

Jackson's Family and Tomorrow Update

2009-08-09T15:17:00.002-07:00

First of all, our prayers and thoughts go out to Jackson's family in Texas today. Baby Jackson passed away yesterday at about 1:00pm as his mother held him. Candace and Rob...Claire and I don't even know you, but our hearts are BROKEN for you today. You will be in our prayers tonight and in the weeks ahead. We cannot even imagine how you both must be feeling right now. Please let us know if you need anything.

Secondly (and lastly), Claire is getting ready to pack up a bag to stay at the hospital right now. I am watching her go about the room and I feel like we are ready. I cannot say that we are totally, 100%, without a doubt ready, but we are as ready as we can be.

As I said in the last posting, Claire and I will check into Shands Hospital tomorrow at about 7:30am (4:30am Arizona time). If everything goes as planned she will be in surgery tomorrow at about 8:30am. I am not sure if I have the ability to update the blog from my phone, but I will be sure to update as SOON as anything happens. I will be able to update Facebook from my phone, so if you are my friend on there, you might get the first pictures and update there.

Please be praying for us this evening and tomorrow morning (if you are up) as we get this ball rolling. Game on...

The Big Day!!

2009-08-08T06:43:00.003-07:00

Ok. Claire and I just got back from her first of two steroid shots. Everything is looking good. We had a small ultrasound and Max was practicing his breathing and giving us all kinds of trouble by not moving his hands away from his face.

We got confirmation that it will definitely be a C-Section since Claire has not progressed at all. We are set to go in on Monday at 7:30am so the surgery should happen around 8 or 8:30 pending that no emergency C-Sections come in. That's about it for now...now we wait!

We are going to take a nap and go float down some river today on a tube. No sunscreen for me!

Beach Trips and Rush Week

2009-08-07T11:40:00.007-07:00

Ok. We have a couple things that I want to talk about. First of all, it is Friday. Which means that we have one last weekend as a single couple before Mr. Max makes his grand entrance on Monday. Claire and I have been trying to fit as much fun stuff into our week as possible and that included a 2 hour drive to St. Augustine Beach. It was only 70 miles away from where we are staying in Gainesville, but it was a FUN drive.

Claire had never been to the Atlantic before and was really surprised at how warm the water was! We played in the waves and hung out in the sun for about 2.5 hours. Being the true man that I am, I declined sunscreen. I hear that stuff raises estrogen levels and makes you whiny. Also, like a true man, I am now about as crispy as a bucket of the Colonels finest. That is ok though. Sunburns prove you are a real man. I had to do SOMETHING after that pedicure I got this week to prove I am still a dude. (Shawn, my sunburn is for you, buddy.)

St. Augustine Beach

Second thing I wanted to mention...This weekend is move in weekend for the University of Florida, and I have been having some thoughts. I was home schooled for high school and then I have basically been taking college online at the University of Phoenix for the majority of my collegiate career. As I watch all of these young people moving into their dorms, I am filled with some empty type of emotion in the pit of my soul. Something is missing.

I told Claire about my feeling and she said that she totally understood and would support whatever I wanted to do to fix it. So...I have decided to join a frat. I am not sure how this is going to work, but I think I just have to get a red plastic cup, pop the collar on my shirt, and walk inside.

This leaves me with the problem of CHOOSING what frat I want to be a part of. There are so many options here...Am I more of an Alpha Phi Gamma? or an Delta Beta Omega? All I know is Claire and I are prepping for Rush Week and am sure that things are going to be great.

Luckily, we are a block from the hospital so if my liver decides that college life is not for me, we can get that corrected asap.

Go GATORS!!

Blog Catchup- Part the Last! (A tale of toes gone wrong and war lines drawn...)

2009-08-04T14:14:00.006-07:00

This is it, after this we are UP to speed! Nothing deep or thoughtful here, just some fun.

Lauren, my pal across the hall (the other CDH mama), and I decided that we needed a pedicure before the delivery of our boys! So, off to the mall we went. Jordan came too, of course, because he always gets pedicures with me! I think the little ladies at the shop get a kick out of big tough looking Jordan sitting down for a pedicure! ;)

I just wanted blue toes with white polka dots, nothing too crazy since I didn't know how complicated of designs they're used to doing. (In AZ, we've got some serious toenail art going on!) The lady looked at me like I was nuts, and then a flurry of conversation in Korean started...about me...and my dots...until my "girl" and another traded places for the dot request. It seems that the dots were a bit of an inconvenience...

SO! This new gal did my dots, and I felt that it would go okay since they'd gone to such great lengths to decide who would draw the short straw, bearing the burden of placing them. Yet, when finished, I feel that I've ended up with a serious mess of dots on my feet. And in nice little rows...hmmm. Okay, ladies, does anybody understand the disappointment of a pedi design gone wrong?? Well, I'm feeling it...so here's a picture and you be the judge!

Please disregard the Fred Flinstone-ness of my feet! Focus on the dots, people. Come on, is this NOT a total un-cute gang of toes? (THE DESIGN I MEAN.) Maybe I'm obsessing...but it's the little things here in FL that make the difference!

Just thought I'd share...I'll let your thoughts on this topic be what they may. :)

LASTLY, You all know my amazing husband Jordan has arrived here in Florida to stay with me through Max's birth/surgery/recovery. He got here safe and sound Sunday morning about 1am, after two crazy days of travel. His first order of business the next day....

SHOW THAT CREEPY CLOWN WHO'S BOSS. Jordan went out front, and gave that clown a good talking to about his place in the house. Cheer up kids, provide some branding quality upon the house, and stay AWAY from CLAIRE. :) Ah, the relief of having my champion at my side once again. Thank you Jordan Bryce, I need you, I love you!!!

HEEHEE so, here we are, up to date! I'm so happy Jordan is here with me, after two weeks of waiting. I've been so taken care of by new friends, and until this point things have been very pleasantly slow-paced. Now, we have five days until Max is born. I don't have to go into detail about how that feels, basically every feeling there is...that's me. :O) This blog is about to get pretty busy, pretty shortly...

We will be blogging, Jordan's probably up next!, so keep your eyes open. Love ya!

Adventures in Gainesville! (Blog catch up Part Deux)

2009-08-04T12:30:00.005-07:00

Ok! Part Deux!
First up is Blue Springs, FL! Martha and Annie took me along on their family outing to this fresh water natural spring; it's at a constant temperature of 72 degrees and GORGEOUS! There's a little beachy outlet off of the web of streams, and right under the diving dock you can see the boil from which the water comes. (the dark blue bit with a bright blue ring around) We set up chairs in the water, played with Martha's grandkids, had lunch, and just relaxed. It was really one of my best days here yet.
Below is Martha's daughter Annie and I, working hard monitoring the activities...keeping our feet in that cool water under the sunshine was pretty tough!

Here's a few of the kiddos next...I think there was about 8 grandkids there total! Really nice kids! Please pay no attention to the sea monster approaching from the left! :) I am a friendly leviathan, haha!
A couple of University of Florida research students had been out collecting tagged turtles for some kind of study, and took the time to show the kids and teach them a bit about them. They were pretty darn large, and he let the kids "pet" them for a bit. It was pretty cool for me to see them too! I am sort of amazed by the wildlife that is natural to see here, not phasing anybody but me! Again...sea creature in the background...pay no mind.
Pictured below, is an up close, real life shot of the sea monster! Although, the title monster doesn't seem fair..."it" looks to be quite content in the cool waters of the spring, enjoying some candy it likely procured from one of the unsuspecting children nearby. ;)
Juuuust kidding. Blue Springs was amazing, I loved every minute of it! I'd like to take Jordan there before Max arrives.

Another evening last week, my mom's high school friend Jenice met up with me for dinner with her daughters! They reconnected via Facebook, and Mom will be staying with her when she comes for Max's birthday. So, Jenice wanted to hook up and meet; we went to Carraba's for some awesome Italian food! Afterwards, she took me over to Lake Alice on the college campus, to see some breathtaking views and spot some GATORS!!!
This gorgeous chapel is right on the water of Lake Alice. It probably only seats 100, but through these front doors, the whole opposite wall is windows looking over the lake. It is SO beautiful! If I lived here, I'd have my wedding at this chapel, and just do it in two or three repeat ceremonies so everyone could attend!
We walked around the way, and if you look across the water, you can see the back of the chapel again. So, this is what the back windows look over. Amazing, huh?!

Next, we got to see alligators that are WILD here in the lake.
Perhaps I'm just a total Arizona desert girl, but is it weird to ANYone else that this approximately five foot long gator is no big deal to the Floridians standing by? I'm talking, no college kid in a gator suit just swimming around in the lake for fun!!! I mean, people were just crowded around, with kids, clicking pics etc. I am NOT as close as I look, my zoom is pretty good! I was probably 20 feet away for the moment I took this, and them was quickly away! :) However, it was pretty cool and creepy at the same time to see one in it's natural habitat.
Another little one, swimming across the water! Eek! Run Captain Hook!!
A beautiful place! Lake Alice is amazing! Thank you Jenice for taking me here! It was another reason for me to get out of the house before Jordan arrived.

Well, that's it for Part Deux! Two AWESOME excursions, courtesy of some AWESOME, loving people.

~Claire

Thoughtful Gifts and Bad Behavior (Blog catch up part I)

2009-08-04T11:04:00.010-07:00

Sorry for all the delay, friends! Ever since that paparazzi mishap and all the attention over Percy Harvin and I, it's been hard to get caught up with the blog! So, here's a multiple part series to catch you up with all the action. It includes a couple sweet things from kind people, some really great excursions to the wild parts of FL, and the arrival of my really ridiculously good looking best friend and hubby, Jordan!! ENJOY...

I just wanted the first part of my catch up to be acknowledging more sweet people!! One of my clients from the salon sent me beautiful flowers! Lovely Katrina, reading my blog, decided my room needed some life, so a few days later these flowers arrived! Little things such as this really DO brighten a person's day. It's just another reminder to me how I want to come home thinking more about how I can help others a little every day. Thank you Katrina!

The next thing is only aiding Jordan and my master plan to convince the NICU staff that Max is the coolest kid in the hospital and provide him with their undivided attention!! (Except for loving all the babies just as much...ehem.) My friend Sarah, who is a daughter of one of the "church ladies" Doreen, took me to dinner with some other girls my age. When she picked me up, she had bought these for Maximus:

So cute, huh? Max's feet will be warm AND spirited. Thank you Sarah! :)

Lastly, I couldn't help but share a point of contention for me. Coming from a family where you "just don't" get into trouble in public, I am thoroughly embarrassed when caught in such a moment! I went to Boston Market after church on Sunday, and brought home my lemonade. Thinking that it was not a big deal, I made the CHOICE to break the rules and take my drink into my room...forgetting that celebrities are always being watched. (I'm still adjusting, you know. I bet that's how Britney Spears felt at the start of her star rising...) Shortly after settling into my room, a knock came to the door! It was management, letting me know that I was breaking the rules by bringing in my drink, and then supervised my throwing it away!! (please, you've GOT to be laughing with me...) Anyways, yes. I broke a rule. Yes, I got caught, story of my life. And NO, I am not famous enough yet for me to get off without shame or punishment! SO, here's proof of my crime.

Here ya go. Contraband. Well, anywho, that's Part I! Just a few funny little things! Love you and miss you all!

~Claire

Leaving Today

2009-07-30T09:43:00.003-07:00

Ok...well, the day is finally here for me to make the trip out to Florida to be with Claire and get ready for Mr. Max to get here!

Honestly, I am not really sure what I am feeling right now. There is a weird mix of excitement, nervousness, joy, and sheer terror inside me right now. I feel like a football player just waiting inside the tunnel right before the game. We are about to embark on this entirely new chapter in our lives and I couldn't be more ready. I just want to get this going so I can hold my son, change his diaper, give him a bottle, or just hear him cry. I know that these things are still a ways off, and we have a few hurdles to go through before we get there, but I just KNOW that it is going to be ok.

The doctors have told Claire that they will be performing a c-section on the 10th of August, most likely in the morning. I should be arriving in Gainesville on or about the 2nd of August so Claire and I will have a week or so to spend together before "go time." Please be praying for safe travels as I drive 2,016 miles from Chandler Arizona to the Ronald McDonald House.

Lastly, I just want to thank a few people before I go. First of all, I want to thank YOU, Claire. You have been a ROCK in all of this. You are passionate, dedicated, loving, and will be the PERFECT mother for our little troublemaker. God really went above and beyond with you. You are beautiful inside and out. I could not be luckier.

Thank you to our families. Griz, Sue, Rob, Pat, and all of our siblings. You have all been such a source of encouragement, prayer, and love for Claire and I though all of this. We would not be who we are without your guidance and love. Thank you all again for being there the night before Claire left last week. That meant a lot to us, and you will probably never understand how much we both needed that. You are all amazing!

Thank you to Devin Holmes. You have been my friend for years now, and I truly consider you to be my brother. Thank you for opening your home to me as I travel through Houston. Thank you for random phone calls to yell at me and talk with me about Claire. It is nice to have a guy friend my age that is already a dad, and can just be there to talk, listen, cry with, or even play video games with. You really are amazing bro, and I love you.

To all of our friends, THANK YOU. Your prayers, phone calls, e-mails, facebook messages, and gifts have been OVERWHELMING. Claire and I could not ask for a more solid support system and network of people that care so much. We appreciate every prayer and thought that you have given and will give our family through this!

Thank you to the Ronald McDonald house staff and everyone that is there right now. You have made Claire feel like she has a home even while she has no car, and no family there (outside of lunch with Gee Gee and Wilson today).

Lastly, I would like to thank the network of CDH families that have found us as they have followed our story so far. We have been so blessed by each and everyone of your stories and are TRULY praying for you. Shawn and Stephanie, we are SO excited for Kamryn and have cried MANY times with you as we read your story. We have been so encouraged as we watched your little girl fight and WIN. There are many more families with blogs that we follow it would take too long to name them all, and show our appreciation. It is amazing how technology has allowed us to care for, cry with, and pray for people we don't even KNOW. Your stories have touched us and we look forward to speaking with all of you more in the future.

On that last note, I would just like you all to be praying for Rob and Candice and their baby Jackson. There are some serious things going on right now, but if you would like to see a picture and read some of their story go to http://beal-jackson.blogspot.com/2009/07/jackson-has-arrived.html. They could really use your prayers and words of encouragement. Go on there and send them the same love that you have all shown us.

We love you all so much!

Until I get to Florida,

My address here

2009-07-26T14:54:00.002-07:00

Hey all, I've had a few mailing address requests:

Claire (and/or Jordan) Griffin
1600 SW 14th St. Room #12
Gainesville, FL
32608

Just thought I'd post it here so you can refer back it you lose the address 100 times.
:)

Happiness in little things!

2009-07-26T13:29:00.014-07:00

Hey there friends and family! I hope that these updates about "nothing" don't bore you, I'm blogging for my own memory's sake as well as for Max's future medical updates. His more purposeful postings will be here in a few weeks! So, don't give up on me if these seem silly! :) It just helps me keep my days somewhat purposeful. Anyways, the little things around here are much appreciated. Here's a couple of them... rain. real, live, rain. raining HARD, and lasting for more than twenty minutes. and reoccurring. unbelievable! The people at the front desk were making fun of me yesterday, because I literaly jogged from the back of the house to the front driveway to sit on a bench and watch the rain. Two shuttle drivers had to pop their head out of their bus to ask if I was coming...looking very confused when I said I was just watching the rain. Sorry Floridians, that is an EVENT. :) So I keep watching the skies to be ready to zip outside in the case of more water miraculously falling from the sky! My next little pleasure is... A bigger room! I had mentioned that the management said they would be moving me into a bigger room, and they did! I didn't request this or anything, they just said that since "CDH moms" are here for so long, it's nice to have more space. Agreed!! It's a really nice little room, theres a twin and a queen bed, and a big window facing a bit more sunshine. That's nice for me, so the clouds don't make me feel so lethargic! A bit larger of a bathroom and a closet are new too, so THANK you RMH! Now, when I switched over to the room, there was a miscommunication, and it hadn't been cleaned yet. I didn't care, but it was apparent, so I started cleaning myself! Stripped the beds down and ran the laundry, and started dusting and sweeping. Cleaning supplies are provided, but honestly I was confused! They are sort up industrial bottles with mystery liquid inside smelling awful. I am either spoiled, stupid, or both, but I just wanted some Comet, Windex, and Lysol Disinfecting Bathroom Cleaner! Haha, so in my confusion, I noticed the housekeeper's cleaning cart...STOCKED FULL OF THE GOOD STUFF... Duh...nuh. Duuuuhhh...NUH. DUUUHHNUUH DUUHHH NUHHH!!!! (ok people it's Jaws??) I shamelessly snagged cleaning products from her cart for about an hour when she was away to disinfect the toilet, bathroom floor, sccrruuub the shower, etc! Ya'll understand, right? You never know people's habits, and i want to be barefooted in my own bathroom. :) It was the undercover project for the day, and it resulted in the shiny room you saw above. I even mopped my floors...ahh. I did tell the housekeeper later out of guilt, and she just laughed. The next little happiness is...Westside Baptist Church! I don't have a picture, but they have been so kind to me. Martha and Annie took me to lunch the other day to the Ivy House, and then today Doreen's daughter Sarah picked me up to tag along to church. (Doreen was with Martha's small group that brought dinner) I hadn't met Sarah before, and she was just awesome. Why didn't I go to a church more like at home? It's a place to worship for Pete's Sake, and with people I can sit with, etc. Jordan was teasing (TOTALLY joking) saying, "Do they know you already love Jesus and know God"? Haha shush Mr., there's a thing called kindness for kindness' sake. I went to the college group with Sarah, then the main service, which was really nice! Afterward, I went to lunch with Martha, Annie, Doreen, and Sarah, along with their small group and some others. I can't say enough how much their kindness has lifted my spirits being here. I was telling Jordan that it really caused me to reflect on how little I truly reach out to actively help people who need a hand, or go out of my comfort zone to help someone. Thank you God for good people and a cause for reflection! Anyways, Martha did the SWEETEST thing. I showed up to church today, and look what she made for me/Max/Jordan: A little denim bag, burp cloths, and a little hat! Ahh! She embroidered them beautifully, and I LOVE that it's personalized, how cute!! Also, she did me quite a favor by starting Max off with some Gators Gear; the NICU staff will love that in his hospital crib! (All part of J and my master plan to win the NICU's love.) Just another little thing that made me smile, feel at home, and feel like I have local friends to call on if I need help. Thanks Martha, you made my day. Well, that's about it for today, it's almost six, so I'm gonna go eat some leftovers, watch a movie, and watch grass grow! ;) I really miss my...everything...back home. Jordan should be here this time next week, YAYYY! Until next time! Claire

A fun day! (...thank GOODNESS!)

2009-07-24T16:42:00.012-07:00

Hey all! This is a long one, pop your popcorn (pop-momo Misty!), and settle in!

I'm not going to lie, yesterday was borrring!!! I know it's only been four days, but I haven't been secluded with nothing to be busy with (errands, cleaning, whatever) ever! Today was fun though. A lady I met on Tuesday night that attends West Side Baptist, who was a part of the small group that brought dinner for the house called me. Martha asked if I'd like to get out of the house and go to dinner with her daughter, who is a NICU nurse at Shands where Max will be! She and her daughter Annie picked me up and we drove about 20 minutes to Williston, FL to a restaraunt called The Ivy House. It's kind of like The Farmhouse or The Landmark in Mesa/Gilbert AZ. It's in the historical district there; an old home refurbished into a restaraunt and decorated with lots of cool antiques, etc. I had some great southern comfort food (Martha and Annie called it), okra, crispy baked chicken, and homemade mac-and-cheese. YUMMM. Here's a couple pics of the Ivy House...
Thank you Martha and Annie for lunch, great conversation, and your willingness to be a friend! Annie and I were able to talk about NICU life, and what I might expect in the hospital with Max.

The word on the street is, there's a hidden-away resort just across the street from RMH with a pool to die for...that doesn't have a lock!! heehee...so I decided to do some recon! Lo and behold, this jungle oasis DOES EXIST. Just across the main road, hidden away, is the luxurious Rush Resort...

Don't be decieved, it is only disguised as a run-down motel to keep the celebrities hidden from the paparazzi and fans...I think. Not sure why the rooms are only $33/night...

Anyways, Sarah and Ashley (Mom and daughter) and Lauren and her son Aiden (CDH mom like me) came swimming at the pool here with me. Yes, I've made some friends! Really though, it's a nice little motel across the street with a great little pool... without a lock. :) So, that's probably where I'll be every afternoon until Jordan gets here. I WILL come home with a tan...yeah right.

After our swim at the resort, the paparazzi caught wind that I was in Gainesville, and they were waiting at the house for me...probably for one of those embarrassing "they're just like us" shots of celebrities looking disheveled...typical day for me. Here's a pic of one of them-
Sorry it's blurry, I was running to get away...you can see that satisfied smile on his face. Some really brazen ladies, from CNN i think, even brought their cameras!
And, can you believe, that in the midst of all my fans and fame, some first round draft NFL player for the Minnesota Vikings named Percy Harvin brought dinner in for the whole house and signed autographs for the families?! Talk about riding my coattails. Poor guy.
Here he is. He was very nice, and actually this picture is hilarious because I shamelessly asked for a picture with him and you could tell he felt very famous and important. Percy was really a great sport, he and his family brought great BBQ for everyone! You could tell he was happy to help out the Ronald McDonald families! Thanks Percy! Jordan, he told me not to post this one or you might get jealous...but we didn't exchange numbers don't worry!

A great dinner much appreciated! :)

Lastly, just thought I'd post a pic of my new pal, Lauren, and her son Aiden. She also in carrying a baby boy with CDH, and she's being induced on August 6th (I'm on the 10th). So keep her in your prayers too!

Aiden's a realllly sweet little boy! Tomorrow they are moving me into a bigger room here so that Jordan and I have more space for such a long stay, and it's right next door to Lauren. That's going to be nice to have a friend through this who knows what we are going through.

Love you all, and hee hee sorry I'm so sarcastic, I think it comes from the boredom!
~Claire

Doctor's Appointment Update

2009-07-22T12:37:00.011-07:00

Hi all! You must be thinkin, "wow! Claire is so great at posting!" Well, my hours are really full with sleeping, sitting, thinking, reading, and people watching, so it's the least I can do. Actually, there are a couple bloggable things today! :) First was my doctor's appointment...

I had an ultrasound done by Dr. Richards, who is the OB in charge of delivering Max, sort of the other half of the dream team working on Max (the first part being Dr. Kays, the surgeon). As he looked Max over, everything was the same. So, not good, but the same. I don't mean that in a negative way, but we are just holding steady I guess. He also confirmed that the heart being underdeveloped is pretty typical in this case, so it's not something to panic about. It comes with the territory he said, so Max should still recover fine in spite of it.

One interesting thing Dr. Richards discovered while looking was the shape of Max's diaphragm. It's not a "straight across" diaphragm like it should be, perhaps with just a gap/hole in it. From one side to the other, it slopes downwards before it attaches to the other side. He said that he has never seen this before, but doesn't really know why it may pose a threat, unless it was hiding a larger defect. So, just a "weird" thing I guess. Jordan said it's because God gave him extra room for his heart and lungs, I say why not! So, I drew some very detailed, quality pictures to help illustrate what I'm describing. Please hold back the accolades and flattery after you see my handiwork.

Here's a normal baby, with the heart and lungs above the diaphragm, with all the extras below. Now, here is my troublemaker...

As you can clearly see in this detailed drawing, complete with big muscles, there is a hernia/hole/gap in Max's diaphragm which allowed all his organs into his chest, pushing his heart far over to the right (and not much below the diaphragm). If you look, you can see how the diaphragm drops down on the one side. This is the anomaly that Dr. Richards described. Who knows, but I guess we shall see in a few weeks.

One last thing...I'm sure you remember my post last night including commentary about Ronald McDonald himself, and my discomfort for the clown? WELL, when I cam home from my doctor's appointment, guess who came to visit all the kids?

I know, I know! I tried to signal to people to run, but they seemed so enamored by him, he must have cast some fast food spell on them. Actually, there was a Christmas in July party for all the kids, and Ronald and Santa came to visit all the kids with presents, etc. The kids were ecstatic, so I'll let it slide this time.
...But don't try to convince me that he doesn't look a bit...suspect.

Love ya'll!
Claire

Arriving in Gainesville!

2009-07-21T17:25:00.024-07:00

So I made it to Florida without going into labor...wahoo! Not that I was supposed to, but it's Murphey's Law that since I needed to get safely to Florida before going into labor, something would try to go wrong! But, nope. So, it was great! My flights were safe and uneventful, although flying first class from Phoenix to Charlotte was ammazinggg, having leg (and booty) space was really awesome with my awkward stomach. Thank you Aunt Kate!!!! She took care of Jordan and my travel needs, and what a burden that lifted. Thank you thank you!! :)

The Ronald McDonald House

So here's my new home for the next long while. The welcome to the Ronald McDonald House(RMDH) was awesome and overwhelming. The people were so kind to me, showed me around, and let me get settled in. And, MIRACLES of miracles, there's wireless internet in the house, so I can blog in my room, and just be connected to the world! Hooray!

Gainesville, FL, is like a jungle! I know that I am a serious desert girl, but this is amazing. The weather is actually pretty nice I think. It's kind of humid, but in the mid 80's and very bearable! This is the view looking out from the front door I just showed you. There's just one thing about the front of the house that I really don't think I want to see everyday...a little creepy......

AHHHHH!! Does he not scare anyone else!? What's he thinking..."Hey kids! Come into my house!" ...No thanks Ronald...I digress.

Tonight when I arrived, there was a church small group volunteering at the house. They brought a huge dinner for everyone, potluck style! Yum! The house manager told me that most nights a group brings in dinner. That is so kind, because every single family staying here is hurting, scared, tired, hungry, or stressed, no exceptions. So, many thanks to West Side Baptist Church, you were a blessing to many tonight!

There was seriously so much: chicken salad sandwiches, honey baked ham, twice baked potatoes, meatloaf, strawberry & spinach salad, sloppy joes, all kinds of stuff!

You can kinda see in the bottom right, the table? There's five tables that seat five, and there's two kitchens like this. I sat with the lady and her daughter in the blue shorts there. The little girl has a brain tumor, that has been shrinking after chemo-wow. It blew me away that every person I meet here has a child in need...it's not all about me ya know. The dinner was a nice chance for me to make some friends and get a "feel" for the house's community. Some people definitely kept to themselves, but who knows what they faced today. The best part about dinner was....

Chocolate treats galore, baby!! :)

Yum, Yum! I can't complain about that at all! These people were so kind. Well, anyways, here's a picture of my room for now. The house manager said that she's moving me into a big room maybe at the end of the week, so that when Jordan comes we will have more room. But, for now, it's more than enough for me! Frankly if we stayed here I would still be happy as a clam at $10/day...I'm so grateful.

Sorry Jordan, I know all my pictures are a bit dismal, but they are all taken with my Blackberry camera! :) Either way, you get the feel for it. Directly to my left is the bathroom, to the right is the closet, and then a nice space straight ahead. If you just imagine me sitting in front of the computer there on the bed, that's exactly where I am right now writing to ya'll! :) One last thing I'll share tonight about my welcome wagon...the housekeeper who preps all the rooms for new people left two turtles on my beds, made by her, with little notes hiding inside. It was a small thing that really encouraged me. If you can see, the fabric says "God Cares", and the notes say "God is Powerful" and "Fear Not". Thanks, housekeeper, for the love! (Clearly a lot of names were thrown at me today...I'll actually absorb them over time I hope!) Here they are:

So anyways, it's been a great night. Got acquainted with the staff, settled into my room, had a great dinner, and lastly, one of the front desk volunteers, Pauley, took me to the grocery store! She is 83, and still rockin'. She didn't have to do that, but offered without me asking...again what kindness. So now I have food to eat probably for a week and a half, and then Jordan will be here with a car soon anyways. Thanks Pauley girl, you are wonderful.

So that's about it for tonight...I'll probably become the world's greatest blogger now, out of boredom, for the next three weeks at least until Max is here! I miss everyone already, especially my husband. Until next time, God Bless everyone!

Claire Griffin

Blogger Extrodinaire and Ronald McDonald-Phobe

Again We Say AMEN, but It's Still Raining...

2009-07-14T19:03:00.006-07:00

Here's Mr. Cutie-pants Max at 35 weeks...just a glimpse of that little face. He weighs about 4 pounds, 13 oz right now! He ALWAYS puts his arm and/or hand in his face, and it's getting "tighter" in there, so the shots are tougher for the ultrasound tech to get. Still, we sooo appreciate her giving us the 3D images every time, it's unnecessary and just a kind thing she does for us.

Now...

We had our last appointment before leaving for Florida yesterday afternoon. My non-stress test was great, Max was moving like crazy and his heart rate is steady and strong. Our ultrasound was a different matter. After the regular brain/head check, chest cavity check, etc, our tech moved onto checking the heart. Until now, his heart has been perfect, in spite of all those organs (specifically Max's stomach) pushing up against it. Today, however, there was a change. The left side of the heart is pretty squished, specifically the left ventricle (lower right of the four chambers). Also, the aorta looks about half the size that it should be...4mm instead of about 8mm at this point. This is potentially very bad because the aorta is responsible for taking the oxygen rich blood back to the rest of the body. Right now, when the blood is pumped from the right side into the left, some of that blood is shooting/leaking back over to the right side because of the small size and pressure on that smaller left side. There's no way to know how serious this is until he is born, and the other organs are out of the way. The heart would then have the opportunity to "open up"...hopefully!!! A positive detail amongst this news is that although the heart is under some distress, the strength of the blood flow through Max's body is good. That means that even though too small, his left ventricle and aorta are still working hard and getting the job done. Go Max Go!

Jordan and I were riding in the car listening to Casting Crowns "Praise you in this Storm" yesterday, and Jordan was saying how that should be our theme song. It talks about trusting God, saying Amen to his will, but wondering when the storm will be over. Man do we feel that! So, a day later, I am feeling at peace with God's will for us, but I am SCARED. I want to bring Max home. So, again we say AMEN, and we're still waiting.

Thanks for your thoughts and prayers, friends and family...

Claire Griffin

Impact!

2009-07-02T07:43:00.004-07:00

Ok...so the realization has hit me that we are having a baby. Don't get me wrong, it was in my head that we were having a baby, but this is different. I was sitting at my desk at work thinking about everything that Claire and I have been though the past few months, and it is seriously overwhelming. This has not been the "perfect" pregnancy, but I wouldn't change it for a thing. We have gone though so much that has brought us closer together as a couple and closer to God. It really is amazing what something like this can do. I had never dreamed that it would be as cool as it is. To see Gods hand in everything we are doing is pretty humbling too.

The other big thing that hit me about Max almost being here is the even deeper revelation that I am going to be a DAD. What?!? Am I ready for this? Am I going to be any good? What do I do when he cries? My mom and dad didn't prep me for THIS! They did a great job in all the other areas of my life, but this is something totally new that Claire and I will have to walk though totally together. I am pretty sure that is how we usually do things though...just jump in with both feet and figure out a way to float. Well, actually, I take that back. I do more of the jumping in without looking. Claire will jump in too, but usually she will have a list of how hot or cold the water is, the depth of the jump, the height of the jump, if she has the necessary tools to make the jump successful and an emergency life vest as a back up plan in case something in the jump goes wrong.

That is the greatest thing about Claire though in all of this. She is such a planner that I really KNOW that everything is going to be taken care of. If he cries, she has a plan. If he is hurt, she has a plan. We are as ready as we can be physically for this baby. It is the emotional and mental aspects of it all that I am still trying to grasp. The fact that our lives are FOREVER going to be different is scary and really cool at the same time. We are going to have a SON. I am going to be a FATHER. This scares me and makes me REALLY excited. Max will be here in 39 days. Yikes...I need to go put my board shorts on...time to jump in.

We Have A Due Date!

2009-06-24T10:28:00.006-07:00

Ok. We officially have a date that they are going to induce! Claire got an e-mail from the OB in Gainesville, Dr. Richards, and he told us that Max will be delivered August 10th. He set the appointment with labor and delivery at the hospital. I really cannot tell you how excited we are at this point. There is less than 7 weeks left before Max is here and we cannot wait! Claire is so excited that she can't even sleep a whole night anymore!

Actually, that is one of the bad things...Max is getting so big and moving around so much that Claire can't seem to get comfortable and has been tossing and turning all night lately. I know that this is supposed to be practice for getting up all the time when he is here, but it still isn't fun. Please be praying for her so she can actually get some rest.

As far as other updates, we have almost finished the nursery and Claire has definitely been bitten by the nesting bug. She decided to redo the downstairs living room at the same time as the nursery so we have spent quite a few hours in Lowe's and IKEA as of late. We will have some pictures to post in the next few days after I get around to hanging the curtains in Max room. If any of you know were we can find Where the Wild Things Are stuff for his room let me know. We could not find any where we registered for stuff, but I would REALLY like to find some stuff. Thanks! That is all for now...I need to go back to work.

30 Weeks and Counting

2009-06-15T20:32:00.007-07:00

Ok wow. Where do we even start? First of all, this is Jordan. I have not really had the chance to get on here and share what I have been thinking about all of this or have the opportunity to update you on where we are with Max.

Well, Claire is now 30 weeks and 4 days preggers. I have not been able to go to an ultrasound and see my little boy for 2 months. We had an appointment at 4:15 with the ultrasound tech and she was a REALLY nice lady. I guess that Claire had worked with her the last few times and really likes her as well. My mom and little sister, Jenna, were also there.

It always blows my mind to see the pictures of Max and the things that technology can do. She took her measurement of his chest and where the organs were. She started to point out the different areas and what we were looking at when she said, "Oh look! He is practicing breathing!" She pointed out the diaphragm and you could see it moving up and down and our little Maximus was letting us know that he knew what he was doing and that he would be ok. I started to cry (I know...I am a big baby.) and was just feeling so very thankful. She said that his right lung looked REALLY big and that there was plenty of tissue there. She was able to find the left lung and see that there was quite a bit of tissue for that one to grow as well! She said, "This one is really fighting to be here."

All of this was just overwhelming for Claire and I as we sat there feeling the tangible love and blessings of God. What did we do to deserve this? I am just feeling like I have screwed up so many times in my life, yet God is consistently faithful to deliver his promises. I love that my God never changes! That wasn't even the best part of the trip though. The ultrasound tech finished with Claire and I and sent the doctor in. He had done some calculations off of the measurements that the tech took and are you ready for this?? He said "Well, I can't explain it, but he is getting better. It doesn't make sense." Claire then shouted, "Yes it does! It is all Jesus! We have been praying!" The doctor told us that his LHR was 3.9. Remember that the LHR is based out of 4.0. This means that our doctor can't figure out how our broken little man is quickly moving into a very low percent of chances that he will have any major issues.

That is really just amazing and a testimony of God's goodness. Thank you all for your prayers and keep it up! We still need it! Thank you again, and God bless you. I am going to hit the sack now...I need to get up at 4am. I'm out!

Oh...and PS: Look at the size of that kids lips and mouth! He definately gets that from his momma. I am really thankful for this!

I just can't believe it...

2009-05-15T21:15:00.007-07:00

Max at 25 weeks. ( A bit chubbier!!)

I love you so much. I love you so much. How does that happen? You are this little...thing. There's a lump that makes me ribs hurt, and my ankles are kind of sore while I stand for 10 hours at work. You are everything. The miracle that God thought I could have you placed in my world has changed everything for me. You are my blessing. I love feeling you move, you little monster inside! When Daddy talks to you at night, I ruin the moment laughing because you roll and move so big at the sound of his voice. I think you have a big bottom, because there's always a lump on one side! I think you are probably so funny. I love you so much. I want to teach you to know how to be kind, when others dont give you kindness, and I want you to protect people who need protecting. I'm pretty sure you are very smart, and handsome. I don't care what you grow up to be, as long as you are humble and do it to God's glory. I feel just a tiny bit of what the Father feels for us when I think of you. I just can't believe it...and I haven't even held you yet.

23 Weeks and Counting

2009-05-09T16:30:00.004-07:00

Just a quick picture! :) This is at 23 weeks, and I'm 25 now. He's bigger now, but I just think this picture is so funny, look at that mouth! The "book" says that at 23 weeks they dont really have any fat under their skin, so they look a bit deflated, and I agree!

2009-05-09T16:14:00.003-07:00

Here's where Max will be born!

Shands Hospital in Gainesville, Florida, is where Dr. Kays is...so that's where we want to be!

To read and/or learn a little more about CDH and Dr. David Kays, check out this website built by parents that Dr. Kays has helped. http://www.realhopeforcdh.com/

We went to Florida at the end of April to have a consultation with Dr. Kays and Dr. Richards, who is the OB/GYN who'll deliver Max. We went first to an ultrasound and OB appointment with Dr. Richards, who immediately made up realize we were in the right place! We got more clarity and answers from that appointment than the many I've had here is Phoenix (every week and a half to be exact! ahh). Dr. Richards recommended that I return at 36 weeks, to begin steroids to strengthen Max until 38 weeks. Then I'll get induced, and if that goes longer than about 4-6 hours I'll have to have a C-Section done to avoid any trauma. After Max is stable, he'll get his surgery done, and have an average of a 5-7 week recovery in the NICU. What a relief meeting this doctor!

Next, we went to Dr. Kays office. He is the Chief of Surgery in the pediatric unit at Shands, and also a professor of medicine at the University of Florida. He spent two hours with us, explaining every part of the surgery and recovery process. It's really intimidating and intense what our little baby will have to go through, but I feel so confident we are in the right hands. Dr. Kays' kids have a survival rate of around 80%, compared to Phoenix's 50%. Also, he projected that Max's "odds" are about 90% of being just fine after surgery, so we are excited that he's confident that Max's situation is very treatable. Then Dr. Kays took us to the NICU for a little tour, to see what we would be coping with after surgery.

Thank GOD for this opportunity!! We are in the best hands in the country, as far as this disorder is concerned, and I'm so humbled and blessed that so many people have been keeping Max in their prayers! So, that's what's new, I am excited about our time in Florida. Other than regular appointments, ultrasounds every two weeks, nothing new should really be happening for the next 10 weeks. Then...BABY TIME! :) I'm 25 weeks now, so actually thats 13 weeks left, but 10 weeks until I'm on maternity leave for work. :)

More to come...

Meet Max!!

2009-03-22T20:39:00.004-07:00

Can you see him and his perfect little face?? :)

He is 19 weeks this coming Wed, and he is about 7 inches long and 7 oz big! I just started feeling him kick and move this week, bringing me the joy and "reality" I've been waiting for. I am so in love with him, I can't hardly describe this new level of love God has shown me!!

Well, Jordan and I were thinking we should get going on blogging this crazy experience. Where to begin?? Well, it only took two months to get pregnant, and that can be almost as surprising as taking a long time to get pregnant. My first trimester was just fine, I couldn't complain! I found that the secret is just to keeeep eating, otherwise I'd get super duper sick and nauseous. But, all that snacking only gained me about two pounds in that first 12 weeks.

Now I'm in exactly halfway through my second trimester...and the story gets interesting!! At my first ultrasound at 16ish weeks, they saw something interesting. That thing turned out to be a Congenital Diaphragmatic Hernia (CDH). What the heck is that? Right...I know. It's something like this...

What is a congenital diaphragmatic hernia?
"Congenital" means "born with." The diaphragm is the breathing muscle that separates the chest cavity and the abdominal cavity. The diaphragm develops when the fetus is about two months old.
Congenital diaphragmatic hernia (CDH) is the absence of the diaphragm, or a hole in the diaphragm. This can occur on either the left or right side, but is most common on the left.
The contents of the abdomen, including the stomach, intestines, liver and spleen, may go through the hole and into the chest. The contents prevent the normal development of the lung (pulmonary hypoplasia) on that side, and may affect the growth of the other lung. After birth the infant will have difficulty breathing if the lungs are not developed enough.

Are you KIDDING ME???? You are supposed to get pregnant and have a happy perfect time!?

But God has His own plans, and I believe in his perfect plans! So, things were scary. As we researched, we learned that the average survival rate of babies with this issue is 50-60%, but God has bigger plans! We found a doctor in Gainesville, Florida, who specializes in this particular issue. For example, "my" perinatologist (high risk pregnancy doc) is the best in AZ, Dr. Mills of Phoenix Perinatal Associates, and he's seen about 10 cases in his whole career. Dr. Kays, in Florida, has seen 120 cases in the last 10 years! This doctor's success rate is 92%! So, we have now realized that this is NOT a matter of life and death, but a matter of getting through a very tough time after delivery.

SO, I'll be induced two weeks early, and I need to be in Florida about two weeks before that. Then, surgery, and an averge of a 6-10 week recovery period. I'll be IN Florida for almost three months!!! Wow, huh? Well, God is GOOOD, ALLLL the time, not sometimes. I feel confident, just a little shocked...it hasn't sunk in. So, I'll be updating this blog as we plan and get new information. Then, in Florida, as boredom sets in, I'm SURE you'll hear from Jordan and I a lot. :)

One more

2008-12-15T10:19:00.001-07:00

here's one more, it was my favorite of the whole day!

Our first family photo

2008-12-15T09:55:00.003-07:00

Jordan and I never had engagement pictures, and the wedding pics are getting old! :) So, in addition to our funky pics by Misty (Mistymichellephotography.com), we had some low-key pics taken in downtown Scottsdale too. I'm happy that our dogs are in them...I love them! Well anyways here ya go.

Picture day!!

2008-10-12T08:34:00.002-07:00

I am SOOO excited! We were asked by a pal to model for her portfolio so that she could build up some wedding pics. She wanted a cool editorial style...so we went to downtown Phoenix! Jordan was his usual rocker self, with the addition of a ripped up shirt from Goodwill, and I threw on my wedding dress! (I'm so glad I got to wear it again!!!) I can't wait to see
more and show ya'll. We are two and a half years married, and I couldn't be MORE BLESSED! :)

I love my hubby.

2008-10-03T22:07:00.002-07:00

i do. i love him more than my life itself! That's all I really have to say! He bought me a new lap top today, and then spent two hours setting it all up for me! What a man...