14 Weeks Old Today!

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!

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Still just chillin'!

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

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Psh, he's fine!

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 :)

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Don't hold it against us...

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?? :)

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Home Sweet Home

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

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BOIL, watched pot, BOIL!!!!

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

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Countdown

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!

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This is AWESOME!!

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!!

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Hungy Hungry Hipp-- er, MAX!!

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!

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No news is good news!

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

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