Lil Stinker!

It is almost midnight and somebody is happy as a lark! He is talking, trying to roll over, making himself laugh. I left him alone and took a shower thinking he would play himself to sleep. Nope! And we have been playing for hours and we have rocked for hours. He obviously feels better and he's ready to try out his new heart! How do I explain to him that we can try it out tomorrow?

He got the final drain tube removed today. They were going to try a modified swallow study but then they found out he won't take anything by mouth so that flew out the window. He had a x-ray done this morning and it looked clean they said. They also did an echo but we haven't gotten the results of that. They are going to do another chest x-ray tomorrow in the early morning (in 5 hours) and if that is clear then we are busting out of here!

There is the sweetest little girl down the hall from us. She is two years old and recovering from her 3rd open heart surgery. She has been here a month and half because one of her tubes won't quit draining. Please pray it quits so they can go home. Her Momma walks her up and down the hall, pulling her and her equipment in a wagon. The little girl dances and waves, she desperately wants to get out of here too!

1 week in hospital

It is 1 am and Caius won't sleep. He is fussy and uncomfortable.

The halls are lined with people. A little boy down the hall died. Please pray for his family.

Surgery day 6

Caius is doing amazing! He is a little stinker. He doesn't like his bounce anymore and he wanted me to hold him until he fell asleep. I loved it! His second drain is barely draining and they are looking to take it out tomorrow. Hopefully we can come home when it comes out but they may want to watch him one more day. As I'm typing this he woke up. Back to cuddling my baby! Talk to ya'll tomorrow.

Surgery day 5

Josh was with Caius today at the hospital. When I walked into the room there they were. Two boys hanging out on the bed watching sports. Caius looks great! He wants to be held. He only has one drain tube and they have quit monitoring him. He has no lead wires, no pulse ox, no IVs. The only annoyance is the drain.

Unfortunately it is still draining quite a bit. The cardiologist said that if it is still draining alot tomorrow that they will put him on the special formula. It is crazy to me. Our nurse came in 2 times today. TWO! If we could rid of that drain we could come home. Please pray that it quits draining!

My amazing cousin Kat took the night shift at the hospital. She said that he is passed out on her bed and has been since around 9pm. He needs sleep. I misunderstood and Caius actually didn't sleep last night and only took cat naps all day today. His sleep is always screwy when he gets back from the hospital.

Thanks for all your prayers and support!

Surgery day 4

Sorry I didn't post yesterday. We had a really rough 24 hours.

Rant on { they can fix his heart but they can't prevent constipation? They know that the meds cause constipation and no one thought to give him a laxative? Really? They just wait until he is in so much pain he can't sleep and then mention it!!! AHH!} Rant off

My poor little guy has been miserable. His tummy has been hurting really bad. It is hard and he has been throwing up his feeds. He didn't hardly sleep Thursday night. He is cold to the touch but he is sweating profusely. I got to hold him a lot yesterday, it was the only way to calm him down and even then it didn't always work. Julie took the night shift, which is good because I was barely functional. She said he had a good night and slept. Thank goodness!

So other than the constipation Caius is doing fabulous! All of his IVs are out, they took out one of the drains this morning and they other drain isn't draining that much so they didn't have to put him on that special formula. His 02 saturation is in the high 90s which is great and he has a good heart beat.

Josh is taking the day shift. I will get an update from him and let you know. Please pray that his bowels move and that he stops sweating.

Surgery day 3

I had the night off thanks to my sweet mother in law. Caius is doing great!! They have moved us to the Intermediate Care Unit. They gave him some milk and he did good so they have started him on his normal feeding schedule. They took out his pace maker wires and the central line in his neck. They also took the dressing off of his incision and it looks great. They took out his catheter and art line yesterday but now he isn't peeing. He really needs to pee!! We have been massaging his bladder but nothing is coming out. Please pray that he starts urinating.

The other small hiccup is that his thoracic duct is leaking fat into his chest cavity. It needs to heal but can't if it is draining. They are going to give him one more day on expressed breast milk and if his drainage is still milky they are going to put him on a special formula that doesn't have any long chain fatty acids in it. That way the duct won't have anything to leak and it can heal up. Please pray that it resolves itself today so we won't have to go to that yucky formula.

Thank you all for your prayers and support. Our God is so Great! His blessings and miracles have been abundant! I will post pics later when I get them.

pics after surgery

Day 2 @ 2pm

The night went well except for the fact that somebody (I'm not going to mention any names) needed A LOT of attention. He kicked, flailed, squirmed, arched, turned all night long! The poor night nurse had to watch him like a hawk. He wasn't responding to any of the sedation meds and they had given him a bunch. We actually had to raise the sides of his crib because he kept trying to roll over. He kicked out the IV in his foot and was trying to snag the ventilator tube with his toes.

They figured they better take him off of the ventilator before he did it himself. The ventilator tube came out around 11:30am and he is doing great. He is much more comfortable now and is resting much better. He is breathing really well and taking deep breathes. They are looking to take out his Arterial line and urine catheter later today. They are working on clearing his lungs and he is handling it like a champ.

It has been so funny because he has everyone in stitches. His right leg is always up and kicking. He looks like a River Dancer. The nursing supervisor came in the room laughing this morning saying she can see his leg kicking up over the top of the crib from her desk. Even people just walking by his room have to stop and see the dancing baby. They are calling him a 'wild man.'

I did talk to the surgeon today. He said he is super happy! He said it is going to be a long recovery but it is to be expected with such a major surgery.

Surgery day final post

Sorry about the delay. I accidentally posted the 11am post on our adoption blog. Then after the surgery, we went to grab a bite to eat and I haven't figured out how to update the blog from my phone so I just updated Facebook. Sorry.

Anyway, It is weird to think that we have been waiting for this day for 10 long and hard months and it is finally here and there is only 2 more hours left. We are very much looking forward to Caius recovering quickly and feeling better. He deserves to feel better. He has gone through more in his short little life than most of us go through in a life time.

The surgeon did say there were a few surprises. He said that his AV Canal wasn't balanced so he had to guess where to put the valves but that it was no big deal. He said the VSD was huge! Much larger than they had anticipated but they were still able to patch it. They did end up having to repair the Pulmonary Artery but said that it wasn't a big deal.

Right now his AV valve is leaking a little bit and once he wakes up it will get worse. Hopefully it won't be too bad and cause any trouble. If it does, we will have to have another surgery to repair it but chances are good that it won't be a problem. Two of his patches are leaking but that is to be expected considering the stitches are fresh. With time they should close up. He is doing great in recovery and is already trying to take extra breaths against his ventilator. He is also moving around and lifting his arms and legs in the air which is amazing because he is on fentynol. A pain killer 10 times as strong as morphine.

I must say we are super impressed with the staff here. The anesthesiologist and her interns joined our family in prayer before the surgery. The surgeon hugged Josh and I. I told him that he was probably the most prayed for surgeon this side of the Mississippi, a fact which he liked very much.

They took out Caius' G-tube since it was so close to the incision sight. They are going to put it back in tomorrow. They loosely stitched up the hole and said that it won't close. I think that is all strange.

We are hoping to get him off the ventilator tomorrow but right now it is just wait and see. Josh and I are so relieved to have this day behind us. It feels like a weight has been lifted and we can move forward. Thank you for all your prayers! I know God heard Caius' name a bunch today. He answered our prayers and everything went great. Thank you Jesus!

Pictures on on Facebook.

Surgery day 1:20pm

The repair is done, he is off the bypass machine but his chest is still open. The cardiologist said that everything looks great. There are two leaks on the AV valve but they are not very big. Both VSD patches are leaking but the leaks are minimal and will either close by themselves or not be much to worry about.

They did have to reconstruct the pulmonary artery but they she said it looks really good. She said she was happy with the repair.

He is still in the OR and his chest is still open however his heart is doing most of the work and his temperature is coming back up. They are having a little trouble getting his temperature back to normal but they said it is coming up slowly.

We are still waiting to talk to the surgeons. Will update when we talk to them.

Surgery day 9:30am

They have him back in the OR. The anesthesiologist had a hard time getting another IV. She did get an Arterial Line pretty easy though. They started the surgery at 9:40am.

Specific prayer requests: medical team, getting through the scar tissue without damaging the heart, Pulmonary artery doesn't need reconstruction, that the valves can be built with no leakage.

A Good Day

Here we are in a much too familiar place. It almost feels comfortable. The staff here is amazing!! Plus I can't tell you how many employees just stopped by our room to see our 'fluffy' Caius and say Hi!

Today went well. We ran by our Chiropractor's Office so Caius and I could get adjusted. Dr. Ron is FABULOUS! He prayed with us and got us all straightened out. Then we went onto the hospital where they got us right in and up to our room. They did an EKG, and a chest Xray, which was uneventful. But then they needed to draw blood and get an IV. This has been the part I have dreaded the most. I mean I'm not looking forward to the surgery but trying to get an IV is SUPER hard on Caius.

They called in the PICU transport team and they stuck him once. It was only one hole but they kept moving the needle around :-(. They did finally get a vein and got 2cc of blood but it blew. Poor little guy is all bruised up on that arm now. We decided to wait for the Nursing supervisor of the PICU and boy I'm glad we did. We had always heard she was the best and they weren't kidding. First stick, minimal moving around and she got all the blood plus the IV. One test was a little short but they sent it anyway. I hope it is enough so they don't have to stick him again.

Funny story of the day was when his night nurse came in and did his vitals. As usual, his O2 saturation was low. She wanted to keep his pulse oximeter on him so she could monitor his saturation. I didn't want to b/c we are used to it being low but ok. We put him in the crib to go to sleep. He made a little noise and then nothing. We thought he was asleep when all of a sudden the alarm starts going off. Josh jumps up and it says 'probe is off patient'. He checks Caius. Sure enough that little booger had gotten it off and was holding it close to his face and looking at the shiny red light! The nurse came in and said never mind on the pulse ox. He is a stinker!

He has gotten he baths and they are about to stop his feeds. He didn't sleep all day long but he is konked out now, thank goodness. They are going to take him down around 7:30am and the surgeon told us it will be about 9am when he actually gets started.

Thank you for all your prayers!! We serve a great God!

Caius James

A mom of boys

So we are outside in the back yard swimming in our massive pool. Ash is running around naked. I'm working with Caius trying to get him over his sensory issues by putting his feet in the water. Asher starts playing in the yard and goes around the side of the house and starts calling for me.

When I go over there I see what has caught his amazement. The irrigation box that has three valves in it. You know what I'm talking about? It has a lid, it is flush with the ground, full of bugs and other interesting things. Yeah that's the one.

Asher he has taken the lid off and is peering over the edge and pointing. I look in and see a bunch of ants running for their lives and 4 cockroaches. Not little cockroaches mind you, I'm talking Texas sized gross cockroaches! Asher is completely wowed. He puts his hand in the box very slowly maybe an inch and then yanks it out real fast laughing hysterically. He continued to do this over and over each time getting lower and lower and laughing harder and harder. The roaches were trapped in the box and couldn't climb the walls so they would just speed around the bottom of the box running in circles. I figured we would be there a while so I sat down and used this opportunity to put Caius' feet in the grass and continue the sensory training. What I really did, in hind sight, was put my self in a dangerous position that I couldn't easily or quickly retreat from.

So the scene... a naked two year old squatted down and laughing his head off. Me sitting not a foot from him, crossed legged on the ground holding a naked baby in my lap. All of a sudden it hits me and no I'm talking about an idea. I'm talking about a cockroach!! Asher had gotten so close that one had actually latched onto his hand and when he yanked his hand out that launched that sucker onto me.

Now I am not as thrilled with cockroaches as my 2 year old son. Surprising, I know! It was everything I could do to keep my composure enough to knock the roach away while keeping everyone alive. I did however scream and jump. Asher was shocked! What had I done? He ran over to check on the roach but alas it had taken cover in the grass. Asher looked and looked and when he couldn't find it, he went back to the box. Having learned my lesson I stood and watched him try to pick up the remaining roaches. Luckily none were as advantageous as the first.

When I noticed the ants crawling on him, Ash was completely unaware of this fact, I talked him into going back to the swimming pool where the only thing I could get thrown on me was water.

10 months ago!

Wow! I can't believe it has already been 10 months since Caius was born. It was 10 months ago when I got to see and hold my little sweetie for a minute only to have him whisked away to the NICU. That was an extremely hard 10 days. But his heart defect seemed manageable after we got out of the hospital. He was eating on his own, if things got bad we would start meds and then do the surgery in 4-6 months. The thought of surgery was and is scary but it all just seemed so surreal.

Well here we are 10 months later having gone through, 2 bouts of congestive heart failure, pulmonary hypertension, NG tube, jaundice, Pulmonary arterial band surgery, G-Tube surgery, 2 ambulance rides, plus 5 stays in the PICU and still no heart repair surgery. I think if they would have told me that this was going to be our path that I would have passed out!

God is good though! He has blessed us with amazing friends and family who have helped us through this tough year and are gearing up to come help again!

Caius' AV Canal surgery will be one week from today. He will be admitted on Monday and then go to surgery early Tuesday morning. This will be a very long surgery. His chest will be completely opened and he will be put on a bypass machine so they can stop his heart and rebuild it. Please pray for him and for his surgeons and nurses. His surgeons names are Dr. Calhoon and Dr. Husein.

I will be doing short updates on Facebook but for main updates check back here. Thanks for your prayers!

Just pics

Soaking up the vitamin D!

My Boys watching their show in their bounces!

Story time.

Bouncing in the pantry!

Konked out!

Trying to take over the world!!

So I've decided that Asher is going to take over the world some day. That little booger is too smart and VERY persistent. I love him so much and we have SO much fun. We went swimming on Sunday and this pool was awesome. It had a kiddie pool that started at zero and sloped to 1 foot. It was great, Asher hasn't been much for pools but he liked this. Little Cai hung out in his daddy's lap and got nice and pruney feet.

Tuesday we went to Josh's softball game. Caius can't take the heat so I backed the Armada up and left it running. I brought Cai's bounce and he sat in the bed of the Armada under the A/C and I sat outside playing with Ash. Do you have the picture? So Ash gets in trouble for not obeying and running into the parking lot. Well his world ended and he goes into a full on fit (As most of you know an Asher fit is very slow, exaggerated, and dramatic and generally very quiet). I see what is coming and put a blanket out for him. He drops to his knees and looks over his shoulder at me with his bottom lip protruding. Then, on the blanket, he puts his head down with his arms back at his side. He yells once, which was enough to get everyones attention. Then he rolls over onto his back and lays there in the grass. He yells again. I tell him not to yell, to this he kicks his feet. I thought my friends watching the game were going to lose it. I smiled and waived and Ash laid there. He finally decided it was a bad idea and came over so I could brush the burrs off of him. Whatta kid!

My little Cai isn't doing so hot. As a lot of you know I cut Dairy out of my diet when Caius was 1 month old. If you would have told me that I wouldn't eat anything dairy for a better part of a year I would have laughed you out of the room! But here I am, 9 months and no cheese, no ice cream, no pizza! Well we have also found out that he doesn't tolerate soy so well either, so I cut that out. I also cut out wheat and eggs for good measure. Well he hasn't seemed to get any better. He still wretches and coughs and has upset tummy all the time. He is miserable and it breaks my heart. So in a moment of weakness I added wheat back into my diet. It didn't seem like a problem but now the little man is super snotty, so no more wheat for Momma!

Our Occupational Therapist moved and we are waiting to get a new one so he hasn't had any OT. His Physical Therapist only comes twice a month. His speech therapist said that we are getting close to using up our allotted therapies from our insurance and Caius hasn't been doing well his speech therapy so we decided to postpone until after his surgery. It is weird not having a doctor's visit or a therapy every day. I can't wait until after his surgery. I'm hoping that the extra blood flow to his tummy will help him to feel better.