Noah's labs from early this morning show an increase in his pancreatic enzymes so they will be doing an ultra sound sometime today. Please pray for answers.

BUT.......

Chest tubes, heart lines and pacer wires ALL got pulled this morning! YAY!! They are even saying that they are going to turn off his Fentanyl!!!!


When Aaron and I got to the hospital this morning, Noah looked really comfortable despite having a distended belly again. He was sleeping peacefully. I kissed him on his face and he opened his eyes and sleepily looked at me. Even though he did not smile, I knew he was happy to see me.

All of his other numbers are looking really good. Praise God! So please pray for continued healing. Pray for his liver and pancreas to heal. Please pray for his lungs to be healthy and strong enough for extubation and for him to PASS extubation!


*** Mommy and Daddy know of a special visitor that will be coming to visit Noah tomorrow morning!!!*** I will post video and pictures tomorrow :)

Noah is doing good as far as numbers go. He is still one of the sickest kids on the unit but he is making slow progress. Today they have weaned his Fentanyl and Versed a little. I don't know if he is liking the change though, he has been thrashing around and grinding his teeth a lot today. I hurts to watch him like this. I feel helpless. I can not wait until this is all in the past and I can look back at it with distant memories. Right now, in the moment, this seams surreal to think about. Some days I feel like it is never going to end... like the pain is always going to be there. It is hard to picture him being a normal toddler getting into things and being naughty. I can't wait for that!
Lately I have been feeling like this hospital stay is going to be our longest one yet. Only 20 more days and this WILL be the longest stay. ::sigh:: :/ WE WILL GET THROUGH THIS!
I think I need to end the update for now... otherwise it will end up as a rambling.

Noah had a rough start to the night last night. His temperature peaked at 42 degrees Celsius which is about 107.6 degrees Fahrenheit. VERY scary! They put him on a cooling mat and cooled him down as quickly as they could. He was awake and looking at the doctors and nurses around him, so they were not too concerned about him having seizures but it is not certain. Since then, he has blood work done every 4 hours and they are keeping a close eye on his numbers. Some other things that they are concerned with his temp being that high, is muscle break down. This is also measure in his blood. It is elevated to 3,000's (which is really high) but it is not as high as kids who have severe muscle break down... theirs would be in the 20,000's. They are checking this number every 4 hours or so. Something that showed in the blood work, that they were not looking for, was a HUGE escalation in his liver enzymes. This is bad! It could be from his temp being so high, but once again, this is also a number they are watching VERY closely.
Some positive outcomes of the night include his Fentanyl being weaned from 15 to 8! This is a HUGE answer to prayers! This is a drug we ALWAYS have trouble coming off and he is doing so well! PRAISE GOD!!!!!!!!!!!!!!!!!!!

I feel like there is some information I have forgotten to mention... but please continue to pray for strength for Aaron and I as well as Noah. My brain is to scrambled to even try to come up with a prayer request, but God knows His plan so just continue to pray for His will!

Noah is doing very well. His urine output is not doing as good as they would want but they are keeping an eye on that. They have turned off his paralytic about an hour ago and so far he is started to move his tongue and a little eye movement. His sedation meds are even higher than the last operation. He has not gotten swollen yet but we should see some swelling in the next few days. His heart rate is still high but given the lengthy procedure yesterday, his heart is just a little mad. His blood pressure is stable. However, post-op his pressures were on the low side. During surgery, he had a moment of hypertension but that was the only time that his numbers were not good.
The second VSD was left open. Dr Mitchel was unable to close it safely enough. The position of the VSD was in such a spot that he was unable to see. But he is hopeful and optimistic that Noah should not have any trouble having a more "normal" active life... it will just be a short term struggle with recovery.

Things to focus on in your prayers:
Noah's overall recovery to be quicker this time around.
Urine output to improve.
Noah's pain control and sedation to be balanced well and no struggles.
His airways and lungs to heal and be strong enough for when it comes time to extubate him.
That the second VSD to close on it's own/not cause any problems and not require any additional operations or procedures.
For his strength to return.
Easier time getting him back off the sedation drugs.
When it comes time to try feeding him, that his gut will work and will not cause him any discomfort.

Thank you everyone!

******** Today's updates during surgery will be added to this post!!! So please keep scrolling down for the additional updates. I will be updating this post EVERY HOUR! ***********

First update 8:30am CT:
They came and got Noah at 7:30 this morning. It is now 8:40, Dr Mitchell just came in and explained everything that will be done during surgery and that he is very optimistic that closing these residual VSD's will help him improve with his recovery. They had just completed an ECHO done through his esophagus and it showed just 2 holes... on at the top of the patch and one at the bottom. Before they open him up, they will be doing a bronchial scope to look at his airways. Stay tuned!

Second update 10:00am CT:
Dr Mitchell has made made the incision into Noah's chest and has started dissecting through the scar tissue. Prepping for the transition onto bypass is starting. Vitals are stable. Dissection is going to take a while.

Third update 11:00am CT
Noah has been on partial bypass for about 50 minutes and complete bypass for 25 minutes and Dr Mitchell is now working on finding/closing the first VSD. Noah is doing well and surprisingly, the dissection has gone a lot quicker than expected. PRAISE GOD! **** My mom is helping me keep busy... she is cutting out fabric so I can make some crayon rolls. I have my own little sweatshop going on here ;) LOL! ****

Forth update 12:00pm CT:
BOTH VSD's are now CLOSED! They are now warming him back up. His heart is beating on it's own!!!!! PRAISE GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!! They will now do an ECHO to make sure there are no more residual holes and then start to take him off the bypass machine. Things are going really smoothly!

Fifth update 1:00pm CT:
Prayers please!!! Noah is going back on bypass. They had taken him off bypass and had done the ECHO... the hole on the bottom did not close properly. They did blood work and determined that they needed to go in and try to close that hole again. So once again they are cooling him back down and will once again put his heart to sleep and try again. Noah is still stable and doing well but with every bypass run there is always risks.

Sixth update 2:00pm CT:
Still working on the VSD... still stable. It is just a little more difficult working on this hole.

Seventh update 3:00pm CT:
Patching is done and now they are doing another ECHO to see if it is now closed... Please pray that this time was successful! When it is done and everything looks good they will do the broncoscopy to check his airway stability... Please pray for an airway miracle that he will not need any further airway reconstruction!

Eighth update 4:00pm CT
They are unable to close the second VSD. It is too risky and dangerous for them to continue to try. Noah is no longer on bypass and is doing well. The cardiologist that came to update us this time said that it will be a short term struggle but in the long hall he will be able to live a "normal" life with this hole. I asked him what he means about short term struggle and he said that we will struggle with getting him off the ventilator for a little while. Please pray that his lungs will be strong enough and not too much fluid over loaded. They are now doing the broncoscopy. Noah is doing well.

Ninth Update 5:00pm CT:
They are now closing Noah's chest. Everything is going well. Coming off bypass was a good transition again and his heart is beating on it's own very nicely. For some reason, unknown to us still, they have decided against doing the bronc. We are now waiting for Dr Mitchel to come out and talk to us.

LAST update!!!!! 6:00pm CT:
Noah is done with surgery and is already being wheeled back to his room. we got to see him in the hall and he looks great! During surgery he did have one episode of hypertension but besides that and the unsuccessful closure of the second VSD, everything went great. Now we are just waiting to go back to his room, which should be in about an hour. Thank you all for praying for us today. Please continue to pray for a quicker recovery and a successful extubation when the time comes.

Noah's re-operation on his heart has been moved from today to Friday morning. Dr. Nancy did not want him to be second case of the day, she wants him to be first or only case. It is going to be another lengthy surgery. Most likely all day. So with these extra few days, we are holding Noah at least once a day. Yesterday was the second time I have gotten to hold him. I had Aaron take pictures and some video. During one of the times Aaron was recording us, he got close up to Noah's face. Noah was just looking at the camera and all of the sudden the corners of his mouth turned up..... NOAH SMILED FOR ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My Christmas prayer was answered!!!! AND God made it so that we could capture it on VIDEO!!!!!!!!!!!!! Thank you Jesus for this Christmas miracle!!




Please pray for Noah's surgery this Friday. Praise Jesus for my Christmas miracle smile!!

Morning rounds, we discussed Noah's surgery. It is in the schedule for Wednesday still, we just don't know exactly what time yet. But it will be an all day event again. They are deciding whether or not to do a heart cath at the same time as the surgery... again, something that will be decided that morning. Noah is in pretty significant heart failure. It is causing his organs to work extra hard. They are pretty much just going to work on keeping him comfortable until Wednesday... no real big changes.
Today, we are struggling with keeping him comfortable, though. He looks like he is in pain or something... cries almost every hour. Poor buddy. His temperature goes up as he gets agitated too but nothing has grown from the cultures, so no sign of infection.
They have been having to suction him a lot as well.. and he has been throwing up a lot of mucus. His liver is extremely large and almost rock hard. This could be because his heart is sick.
Pray that the surgery on Wednesday will go without bumps and that this recovery time will go a lot quicker and more smoothly. Pray for Aaron and I... it is putting a strain on us as individuals. We just need a break from life for a little bit, but that is difficult when we worry about our baby boy.