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

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

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My Kid's the Smelly Kid in Class??

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...

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Let's not do ECMO again, okay?

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.)

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Ain't Nobody Got Swagga Like Max!

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!!!

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