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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There Is An End In Sight!!

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,

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No WONDER!

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

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The night Max wore his wolf suit...

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

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I think Max is bulemic!!

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

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A Day of Firsts

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

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Throw Up Your Rock Fist...

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:

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No words...

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! :)

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