STRONG (adj): Healthy, Powerful!

>> Monday, August 31, 2009

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

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

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

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

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

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

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

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

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

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Ireland Rose

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

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

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

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In case you were wondering...

>> Saturday, August 29, 2009

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

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

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

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

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

So that's really everything for Max!

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

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

Love!
Claire

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

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A Short One

>> Friday, August 28, 2009

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

Mr Max:

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

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

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

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How about a happy post??

>> Thursday, August 27, 2009

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

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

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

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

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

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

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

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

NOW...

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

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

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

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Chaper 5: Max Throws Us A Curveball

>> Tuesday, August 25, 2009

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

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

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

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

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

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

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Changes...

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

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


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

Jordan

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Time to call in that favor

What a slap in the face.

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

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

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

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

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

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

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

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

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

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

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

Thanks,
Claire

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Mischievous Max!

>> Sunday, August 23, 2009

I am so excited!

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

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

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

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

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

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

Miss everybody!
Claire

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Cutie Pie Update!

>> Saturday, August 22, 2009

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


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

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

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

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

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

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

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

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

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

Love,
Claire

ahhh YAY Jordan just got back!!!!

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Getting Closer...

>> Friday, August 21, 2009

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

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

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

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

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

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

~claire

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FYI

Hey there!

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

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

Later!
Claire

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All KINDS of things

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

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

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


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

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Just a quickie!

>> Wednesday, August 19, 2009

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

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

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

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

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

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

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

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

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

>> Tuesday, August 18, 2009

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

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

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

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

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

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

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





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Max wakes up and Claire takes a NAP.

>> Sunday, August 16, 2009

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

>> Friday, August 14, 2009

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.)

>> Thursday, August 13, 2009

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

>> Wednesday, August 12, 2009

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!

>> Tuesday, August 11, 2009

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)

>> Monday, August 10, 2009

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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