Another surgery tomorrow..

Clay has been doing so incredibly well! He just smiles and smiles and smiles all day long. He acts like he feels so good..and I can imagine with all he's been through lately, he does!

His morphine is weaned all the way down to 95 (it was at 410, less than 2 weeks ago)! And we can't even tell he's being weaned! Last go-round with the morphine, he would get the shakes and throw the awfulest fits. But he has handled this like a champ! So so thankful for more answered prayers.

And he's tolerating feeds again..we've slowly worked our way back up to 20mL/hour of continuous feeds. He's still not at the full feed amount, so he's still getting TPN fluids and lipids through his subclavian central IV line...

...well, the subclavian central line is not very permanent and our surgeons are afraid that the line will go out soon, because it's been in for two weeks already. And we really need that IV line because he's getting all his many meds, fluids, lipids through it.

So this morning during rounds, our surgeons decided it's a good time to put in a Broviak (a more permanent IV) and to go ahead and put in the G-tube (a feeding tube that inserts directly into the stomach).. TOMORROW!

So here we go with another surgery...not nearly as invasive or risky as the repair surgery done two weeks ago, but it's another surgery all the same. They all have risks..with infections, bleeding, anesthetics, etc. So please say a prayer for another successful day tomorrow.

I knew we would be facing another surgery day, but I'm kind of bummed it's happening now that Clay is back to his happy smiling self. But I know it really is a good time to do it...

This way, we can wean him off all the drugs and start feeding him through his G-tube, then we can get him on a home vent and go HOME!!! I'm optimistic that day is not too far down the road :)

Clay looks pleased with that plan, see:

6 months!

My big guy had a big 6 month birthday!!

His nitric oxide is turned OFF!! His chest tube is gone!!! And he's back in his big boy crib!!

We're having issues with him keeping food down, though. He's been gagging and throwing up all day. The docs turned off his feeds for the night and plan to just give his tummy a rest. They think it's just gonna take some time to wake up his digestive system after not eating for a month. Please say a prayer that all the kinks get worked out and he can tolerate his feedings again.

Aside from that issue, everything else is going really well! Dr. Draus, our surgeon, came by tonight and said he's very very pleased with his progress. He said he's relieved the feeding issue is all we're dealing with one week post-op. What a difference a week makes!

We're making progress weaning the morphine..but we still have a ways to go. Send Mr. Clay your positive thoughts and vibes while he's coming off the drugs. He's not been resting very well the past couple of days...I guess the lil guy just don't want to miss a thing after being out for an entire month!

I'm feeling so thankful for my sweet baby's 6 month birthday. Love that little turkey so stinkin' much..

Recovery update..

After a couple of rough days post-op, things are really starting to get better for us! Thank God!

Our major issue the first few days were getting his pain under control..he'd kick right through all the drugs, obviously uncomfortable. It turns out, he was having an allergic reaction to the blood transfusions he was getting. Poor baby! I feel sick thinking about how uncomfortable he was, probably itching from the inside out. It's very very rare for babies to have this type of reaction to blood. Of course, Clay has to keep everyone on their toes! If Clay ever needs blood again, we'll have to make sure he gets Benadryl before the transfusion. It seems to be nothing too concerning, but it definitely explains why he has been so hard to knock down with the sedation and pain meds. I'm sure he was absolutely miserable! Thankfully, that's behind us.

Since Friday, we've made great progress!
...His nitric oxide is currently down to 3..his milrinone dosage has been cut in half. Both of those should be gone in the next few days if he keeps it up!
...His catheter was taken out..and so was his replogle (the big huge tube going down his nose).
...He has a feeding tube and we've worked our way up to 20mL of continuous feeds, and that's increasing daily..hopefully he'll be at full feeds soon and we can get rid of the TPN fluids and lipids!
...We should be able to get his chest tube out in the next couple days (which is draining gunk out of his chest from surgery).
...And his morphine dosage is slowly coming down, too. He's not requiring nearly as many extra doses of sedatives either! It will take a long time to get him off of the morphine...and Clay will not be happy going through withdraws. Please pray he can be weaned easily.
...He had a 'sedation holiday' today, where his morphine was turned off for a couple of hours and he did well with that! I think it helped that momma was holding him through that time, too ;)
...YES! I got to hold my baby today!!! We got some really good time together.. I'm sure it felt so good for Clay to get out of that ol' bed for a while..the poor little guy is so stiff. Once he's more mobile (and it doesn't take 3 people to get him and all of his accessories out of bed), he'll never be in his crib!

I am just feeling SO relieved that things are progressing so well. All of the doctors & surgeons are really surprised that he's bouncing back so quickly. They were expecting a much much sicker baby after surgery. Clinically, it may be surprising...but I know it's because our prayers are being heard and Clay's fighting spirit ain't backin' down! All of your unwavering prayers and support is getting us through..and words cannot explain our thankfulness to each and every one of you.

I am so stinkin' proud of my sweet baby boy. He is just amazing! Y'all keep praying for his total healing.

Lots of love and peace to you all!

Repair surgery VICTORY!

Repair surgery #2 is in the books..and we are all still kickin'! Thank the Lord!

Yesterday morning before surgery, Clay was so awake and alert and he just seemed so calm. He was looking right at us as we rubbed his little head and kissed him all over. I told him about allllll you fine people, praying so hard for him. I told him to not worry, God's got him in his hands. I know he was listening to our pep-talk! He is so so brave.
Here's a couple of pics, but I wish you all could have seen him in person, being so strong before surgery:

 

They wheeled him down to the OR around 11:30 in the morning..we got a few phone calls in the waiting room to update us along the way, but Clay didn't get back up from the OR until 6 in the evening. I am so thankful we had a room full of family waiting with us..it made the time much more bearable.

The game plan changed a bit once they actually got down to the OR. First, he had to have a new subclavian central IV line put in, plus another IV in his foot--all ports for fluids, meds & anesthetics. He also had an arterial line put in his wrist to monitor his blood pressures and to have good access to draw blood gas labs.
The surgeons must've debated about what to do next, but they ultimately decided to do the diaphragm repair first. I think the big man upstairs had a hand in that decision ;)
...After the patch was placed, one of the surgeons came to the waiting room and updated me & Eric. He brought a picture they took with a scope & showed us what the hole in his diaphragm looked like. He explained how the patch was placed, wrapping it around his esophagus, so that the esophagus acts as an anchor to the patch...they feel confident that it will hold up well.
...They covered the hole with an alloderm patch, the same type of patch used in the first repair. Alloderm is a material made of natural components that is supposed to allow the body to accept it better & form better tissue to it. In the picture, our surgeon pointed out an area of tissue that visibly had blood vessels running through it--he said that area was where patch was originally placed in the first repair & Clay's body tissue had grown to it--so that's really awesome! Hopefully Clay's body will also grow tissue to this patch & it will hold forever! So he will not ever have to go through this again! Please pray it does!
...Also pray that NO INFECTION develops! This is huge for Clay's recovery.
...So, after that update, we waited for another couple of hours. Then we got word he was about to come back up from the operating room and they didn't get to put in the g-tube. They think his stomach was in odd placement & they were afraid there was bowel in between his stomach & abdominal wall. Obviously, they don't want to tack his intestines in between, so they decided to just hold off on the g-tube. The surgery for that is really 'no big deal', especially after all we've already been through. So we'll cross the g-tube bridge in a few weeks.
...Eric & I finally got to go back to see him around 7. Poor little guy looked like he'd been to battle--which is exactly the case. The surgeons and everyone were really pleased with how he handled surgery. His vitals were very good and stable.
...His nitric oxide had to be turned up to 15 during surgery, and his oxygen was on 60%, all of his vent settings have stayed the same...and he had to go back on the milrinone last night (helps with blood circulation/heart function)...but given how intense the surgery was, I'd say he's kickin' major butt!!
...Our nurses said the anesthesiologists had to bring out the hardest type of narcotics they have to knock him down--he was fighting everything, drugs & all! He was still kicking his little legs & opening his eyes last night when we were there, despite being put back on the paralytic & two different types of sedation/pain meds. One of our nurses said he'd had enough drugs to put down an elephant--poor little guy. It's pitiful that my 6 month old baby has such a high tolerance for all of these drugs--and I dread the weaning process, whenever that starts. But for now, he really needs to be kept comfortable & calm, so please pray for him! And pray for no adverse effects of all the drugs.

I am so so so proud of my Clayton Cash. He is the bravest, strongest little guy.

Post-Op Pic...He is a warrior!!!!!

All I can say is Thank God. He has brought us over another huge obstacle...and He will be with us through recovery. Mark down another VICTORY!!!

And all of you are absolutely amazing...all of the prayers & love sent to our family makes this so much easier for us. Bless you all!

BIG day tomorrow!

Alright, friends..we need BIG TIME prayers, good thoughts and vibes for all of Team Clay tomorrow!!

The pediatric surgeons rounded this morning and their plan is to take Clay down to the O.R. tomorrow morning, given that everything stays stable today & tonight.
...They plan to start out doing the g-tube, then if it seems like he's tolerating that procedure well, they will put in a broviak (a more permanent IV line).
...If he does well with those procedures, they will try to go ahead and do his diaphragm repair surgery.
..This will consist of opening his chest and suturing a patch over the hole in his diaphragm. They will try to suture the patch onto good strong muscle tissue, so that a future reherniation isn't as likely to happen. During his first repair surgery, there was hardly any tissue to sew to...thus, this reherniation. So please pray more tissue has grown during the past 6 months and that Dr. Draus can get a good patch on his diaphragm.
...They will have to decompress his left lung in order to have room to work. So he will be relying solely on his right lung to oxygenate his blood. He has done this before, so we know he can, but please pray he can handle it tomorrow!
...If at any point Clay drops his oxygen saturation levels and can't recover, they will forfeit their efforts and we will try again at a later date. The pediatric surgeons will only do what Clay can handle. Please pray that Clay will very clearly let them know what he can tolerate.
...If they get to do everything they hope to do, it will be a 4-5 hour surgery. Pray for our family's strength & nerves during the wait!

I can't imagine being a pediatric surgeon and making these decisions, that are ultimately life-threatening. They do not want to wait too long to do the repair, for fear that he will get sicker. It's a window of opportunity that one of the surgeons said only Clay & God knows when the right time is...

I do feel like Clay is very stable now, despite the alleged pneumonia that came up last week. The tracheal cultures are growing some bacteria, which the antibiotics are working to rid. But Clay hasn't really been acting 'sick'. No fever, he's not requiring much more oxygen (set on 45%), he's tolerated being OFF the paralytic since Friday, he even had a sedation holiday--where the sedation meds were turned off for a couple of hours yesterday. AND I got to hold him yesterday!!!! For the first time in over 3 weeks. Felt so good! And Eric got to hold him this morning.. And he tolerated a little bath today very well. Smells 100x better too! ha!

So, I'm feeling good about the decision to try the repair tomorrow. I'm hoping and praying that Clay can tolerate it all, that we can get it all over & done with. Recovery is not gonna be pretty. I know our nurses are dreading it...our sweet, wonderful nurses! Again, they are making sure he is covered every day, even picking up extra if he's not. I honestly don't know what we'd do without them. Yay, Team Clay!!

I can't ask it enough: PRAY! It is all we can do from the sidelines, but I know it is more than enough to get us through.

My Clay-man is a tough cookie, he's gonna be just fine. See, he's showing off his muscles:

Go, Clay, GO!!

Another bump in our road...

It seems like Clay has developed pneumonia and was started on antibiotics again...so, no diaphragm repair surgery on Tuesday.

Now, the plan is to wait & see...
...If he's doing well come Tuesday, the surgeons and neonatologists feel like doing the surgery to insert the g-tube (a feeding tube that insets directly into his stomach) would still be a good idea. That way his stomach will be 'tacked down' into place, and out of his chest cavity.
...They also hope to put a post-pyloric feeding tube in, which will feed directly into his small intestines and bypass the stomach. This will decrease his risk of aspiration--which is probably what caused this pneumonia in the first place.
...If all of this happens, they can start feeding him again, rather than giving his TPN and lipids through his IV...which is bad for his liver if done over a long period of time. We sure don't need any liver issues on top of everything else we got going on! So I'm really hoping to at least get the g-tube surgery out of the way on Tuesday.
...The docs also stopped his paralytic yesterday, to see if he can tolerate being awake a little more.. so far he's done okay. He's required a lot more morphine and extra sedation doses, so now it's just finding his 'happy spot' with all of these pain/sedation meds . His poor little body twitches and jerks and his little eyes look crazy wild, but it is so good to see some sign of life coming from him! After three weeks of being down, I can't imagine what he's feeling.

I feel like I've been allowing myself too many pity parties again and I don't like it.
Yes, this sucks. No, it's not fair.. But there are a lot of sucky, unfair things in the world..

We are not guaranteed anything in this life!

This CDH battle has only begun..it's something that will never just 'go away', no matter how bad I wish it. We gotta suck it up & get used to it and be brave like my Clay! It's all in God's hands and my God is good.
There is a purpose and a plan for all of us and I know God is doing big things with my Clayton Cash. There are so many people who have been touched by my little mans life..and he's only just begun!

Please, don't feel sorry for us. Pray for us and celebrate with us! This is the life we were dealt and we will not be victimized by it. We will be creators, not victims (shout out to all my HCOP peeps ;))!! We will fight and we will get through this stronger, braver, more faithful people in the end.
We all have our trials and tribulations but with the right mindset, it makes things a helluva lot easier.


Okay, I'm off that soapbox.. now onto another one.. :)

This Thursday, April 19th, is the International Congenital Diaphragmatic Awareness Day (and ironically, also my birthday). It is a day for all of us affected by this devastating birth defect to push for awareness and advocate for more research to be done. More research must be done...to find the cause of CDH...to find better medical interventions, so our babies have a better chance at a normal & healthy start to life..
Here's how Clay's anatomy probably looked when he was born (and maybe looks now, since he reherniated): 

One day, when things have settled down with Clay, I hope to be more involved in raising awareness for CDH & possibly start a fundraiser of our own.

For now, here's what you can do:
...Please, sign this petition & share it with your friends.
...Check out this CHERUBS research website & learn more about CDH. Donate money to help, if you want. 
..."Like" the CHERUBS page on Facebook to keep up-to-date on the ways you can help.
...PRAY!!!!!! For Clay & all of the other cherubs born with CDH.

Thank you all, so so so much!

Keep praying & believing! Much love!

Surgery is 'scheduled'..

We have a date set for surgery. If everything goes well this week (fingers & toes crossed it will!!), the pediatric surgeons plan to fix Clay's diaphragm next Tuesday, the 17th. Pray for a smooth, uneventful week for us!

So far, Clay is continuing to hang steady. He had a couple of not-so-great blood gases over the weekend, so the docs had to go back up on his ventilator rate to 50. But his blood gases were good yesterday & today, so his vent rate went back down to 45. And we've been able to wean his inhaled nitric oxide to 10ppm. So we're making slow, steady progress! The main goals are to get him off the nitric this week, and to keep all infections AWAY. The docs want him to be off his antibiotics for a week before surgery (this Thursday will be a week since his last dose)...so please pray we can keep him infection-free!

I will be so so so so so so so glad when we get this surgery behind us and we can finally start to recover. I miss my baby so bad.

Me and Eric went home for an Easter dinner yesterday afternoon and on the way home we passed all kinds of yards with little kiddos running around, hunting eggs. I looked at them and smiled & said, "one day". One day, Clay will be well enough to go home with us. But I couldn't help but be a little sad. Going to all the holiday dinners without my baby makes me feel so empty. Half of the family has never even met Clay & he is nearly 6 months old.  But one day, it will happen...

First, we got to get through this big surgery. We need lots & lots of prayers for a strong, infection-free Clay.


Keep praying & believing!

Much love to you all.

A good little update...

Clay looks so good today! He is not nearly as swollen and puffy, thanks to the diuretic..he's been peeing like a racehorse :) It's SO good to see him look so much better.
...The docs weaned his nitric oxide to 18ppm yesterday and he didn't seem notice, so they weaned to 16 today. So far so good! :) Pray he can keep it up and they can wean even more!
...His blood gas analyses have been good! His CO2 levels have been low enough to wean on his vent settings. His rate is down from 50 to 40! AND he's on 38% oxygen :)
...X-rays are looking much better. It looks like that left lung is opening back up, and it appears that his stomach is in good placement (although that is debatable by some docs)..either way, Clay is kickin' butt!

If he keeps this up, hopefully surgery will happen soon. Continue to pray that Clay will let everyone know when he is good 'n ready.

There is no doubt in my mind all our thoughts & prayers are being heard..and they are working! Please keep them coming..

Much love and thanks to you all!

THIS is my champion:

Our baby boy is still fighting

Over a week has gone by since Clay reherniated..and it has not been easy for any of us. Clay is still being kept paralyzed & sedated, so we have hardly seen him move a muscle. It's so hard to see my baby so sick again--and so so so scary. It's been a struggle at times to stay positive...seeing all the doctors so worried about him, hearing all their concerns & what-ifs...

But we are all still rooting for him. We are not giving up!

We met with Dr. Draus, our pediatric surgeon, and he feels like Clay is slowly getting to where he needs to be to have the second repair surgery.
...The plan is to get him off the milrinone (blood pressure/heart medicine)--which was stopped yesterday, and he is doing very well with so far! The docs tried to wean this medicine last week, but Clay let them know that he did not appreciate it. So we are so glad he's not noticing the milrinone's absence this time around!
...They have started him back on the sildenafil (to combat pulmonary hypertension), but he is getting the medicine through his IV, rather than orally. This causes concern because the sildenafil can make his blood pressure drop really low when given intravenously. So his dosage was started low, then slowly turned up over the past week. Today, he has been turned up to his full dose. His blood pressure has been lower than usual, but it's not been too low. Pray he continues to handle it well!
...The docs are hoping that Clay can be weaned on the nitric oxide (also combats PH), now that he is on his max sildenafil dose. Please pray we can get the NO weaned lower. It is currently set at 20 ppm, and the docs plan to wean it to 18ppm tomorrow if everything continues to go well overnight.

The docs & surgeons really want to wean on these meds so that they have more 'bullets in their gun' for after-surgery recovery...If he's maxed out on everything now, we won't have much to go up on afterwards. ECMO is still an option, a very very risky last resort option, but it's still an option. That scary machine has been in my mind more times than I would like this past week... I am praying so hard we don't have to go that route again..please please pray too!

The doctors & surgeons & nurses are all in agreement that we need to go slow any steady with any changes made, and not rush his repair surgery. As Dr. Draus said: if we do the surgery too early, when he's not ready, it could kill him.

Pray for our Clayton Cash--that he continues to stay strong & fight!...that he will let the doctors and surgeons know when he is ready for surgery...and that all of us: me & Eric, the doctors, surgeons & nurses--that we will all make the best decisions for Clay.

I miss my lil guy, that's for sure..his big bright eyes and that sweet, sweet smile. I can't wait to get him back. We got a long ways to go, but it will be that much sweeter when we get there. I am so proud of my baby--he is showing us (again) what a true champion he is.

Keep praying & believing!