Max wakes up and Claire takes a NAP.

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

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

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

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

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

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

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

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

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

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

Love,
Claire

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Chapter 4: Max Starts Recovery

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

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


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


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

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

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

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

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

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

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















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

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

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

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















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

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

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

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















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















These are the faces of two tired, relieved parents!




























We are just beyond words about everything.

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

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

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

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

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
















Love,
Claire

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Day 3 - Short Update

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

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

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

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

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Day Two!

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

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

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


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

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

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


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

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

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

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

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HAPPY MAXDAY!! (Slideshow at the bottom)

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

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

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

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

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

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

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

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

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

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

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Jackson's Family and Tomorrow Update

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

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

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

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

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The Big Day!!

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

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

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

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Beach Trips and Rush Week

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

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

St. Augustine Beach

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

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

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

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

Go GATORS!!

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

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

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

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

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

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

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

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

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

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

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

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