Sorry for the delay in updates...
Noah has been doing quite well lately! He has been getting good amounts of sleep at night and VERY active and HAPPY these past few days! He is drooling like nobodys business and what does he have to show for it??? TWO teeth! He is getting so big! :)
Noah has not had a temperature in almost 4 days now. He is comfortable on the CPAP and tolerating his feeds... which he is now on FULL feeds as of today! Now we just need to see a weight gain! They are going up on his calorie intake so he should be gaining weight quickly. They are going to be turning off his milrinone drip today and taking him off the lipids later this week. He is already off the TPN which is good! And hopefully by the end of the week they can take out his central line!
The plan right now is to leave him on the CPAP for another week or two. They don't want him working too hard and lose valuable calories. They are giving him breaks from the CPAP still and every time gets a little easier for him.
Aaron is going back to work tomorrow and this is going to be very hard for me to get used to again. Aaron has been with us since Noah's surgery back in January. I am going to be alone most days again. Please pray that I don't become insanely bored! lol!

This morning, after rounds, we feel as if there is FINALLY a plan(s) underway. The current plan is to start his feeds again and work him up to full feeds. Every four hours they will give him a break from the CPAP and put him on high flow for an hour. The MRI did not show significant heart failure so they will try weening him off the CPAP for now. If he still needs the positive pressure support after 2 to 4 weeks, then they will discuss the next solution... repairing his heart or putting in a trach. I pray that Noah will decide to take the easy route, but I also am praying for God's will and that I will find comfort in God's plan.
Today he is comfortable and HAPPY! He will not stop smiling!! And he warms my heart! I was having a bad day yesterday but all I had to do to feel better was look at the huge smile on my sons face! He is such a ham!
Oh... and he has been extra drooly today so guess what I discovered?? His second tooth is coming in! His first two teeth have shown up in under a week! I will get more pictures when they both come in a little more! :)

Noah is having a good day today. They are giving him hour breaks from the CPAP to try to get him back on to highflow. So far, he has done well. He still works a little more but it is getting better.
Cardiology has not made a final decision about Noah's heart yet, so, before the end of the week they will be sending him down for a MRI. After the MRI, they will all have a conference and make the decision. If they do decided to fix his heart before we are sent home, they will most likely repair the hole in his heart only. They would save the rest of the repair until he is bigger and stronger.
We have started continuous feedings today at 5 cc's an hour. He is having a little trouble with gagging and an occasional spit up, so please continue to pray for his tolerance.
Noah received his RSV shot yesterday... one in each thigh. :( Today, he has a slight fever and an elevated heart rate, so it is hard to tell if he is still "sick" from last week or if he is just crabby from the shots or if it is his heart or liver.
His liver is more distended today, so hopefully we can get him to tolerate his feedings and get him off the TPN and lipids.
During his first break from the CPAP, I got a glimpse of his precious face without anything on it and was able to snap a quick picture before the therapist put his nasal cannula on. His gave me the sweetest smile..... :)

Yesterday, Noah was put on CPAP and the differance was like night and day! His fever came down, heart rate came down, respiratory rate came down. He was overall more comfortable! Praise God! The cultures they sent to the lab have come back negative, so we are just waiting for them to officially take Noah out of isolation.
We have not received the results from his ultrasound yesterday morning... they were looking at his liver, galbladder, and pancrease. His BNP, which is what they measure for heart failure, was a little elevated but lower than the previous draw. His liver enzymes are elevated as well which could be caused by the TPN he has been on for a month.. they will be looking in to reformulating it.
The cardiology team and surgeons discussed, yesterday, whether or not to repair his heart. From what Aaron and I got from the discussion, they are still undecided but if they DO do something, they would just repair the hole first and let him get bigger for the full repair. So we are just waiting for a deffinate decission.
All three of us are getting more rest than we have been! We are still pretty exhausted but it is getting better... please continue to pray about that.
Thank you!!

As some of you know, Noah has had a really rough day today. His fever is still high and has been vomiting and dry heaving all day. He is getting IV fluids and nutrition to keep him hydrated but he is just miserable. His color is not looking so good either... he looks dusky and "veiny" and his nail beds are blue. His liver is down about 3 cm. They will be checking his liver enzymes in the morning and also doing viral swabs, which means he will be in isolation for at least 24 hours. His ICU doctor is going to be having a discussion with Noah's cardiologist about repairing his heart soon. He is starting to show signs of heart failure so they will be doing a heart failure test in the morning as well. Our poor baby is just SO tuckered out, he has absolutely no reserve left. I wish I could just take it all away! His chest x-rays show his lungs look almost whited out with junk. When they suction him, most of the time they suction for a good half hour and get a LOT of thick mucus and he STILL has a lot more. They just can not get it all out.
Please pray for wisdom for the doctors and surgeonns and cardiologists tomorrow. Pray that God comforts Noah tonight so he will get the rest he needs to start feeling better. Pray for Aaron and I as this week will be a lot of descission making, I am sure! Thank you.

Oh... BTW.... Noah got his FIRST TOOTH yesterday!!! And tomorrow (2-22-10) is his 8 month birthday!!!!

Noah was extubated on Wednesday. Today is day 3 of no breathing tube! He is still struggling at times to breathe, but so far they have been able to keep the breathing tube out. His lungs are very sick right now and he has a LOT of secretions that he is having difficulty coughing up. He is getting PEP (positive expiratory pressure) treatments every four hours to help him cough. So far they are working. They also deep suction him to trigger the coughing.
We are going to try feeding him today as he tolerates it.
Over night, he had a fever as high as 103.6. They have sent cultures to rule out infection. Right now his temperature is 102.7 and just received Motrin. We are also trying to cool down his body with wet wash cloths. Noah has also been very restless and will only sleep for 30 mins at a time... last night they gave him adavan and he slept for almost 3 hours! That is the most sleep he has gotten in over 3 weeks!
Noah will be receiving another blood transfusion today. His blood count is a little low and he is a little dry. His heart rate is a little on the higher side so the transfusion will help lower it.
Aaron and I are also very exhausted. We take shifts to comfort Noah so one of us can get some sleep. I am VERY appreciative of my husband taking the first shift every night! I don't know how I am going to stay awake when he goes back to work on Monday!
Please continue to pray for Noah and Aaron and I. Thank you!

I am almost speechless today, as I look at my peaceful, sleeping baby! :) Noah was extubated around noon today. He did GREAT! He only coughed as they pulled out the tube and immediately put his binky in his mouth. He did not even cry! God is so good, all the time! Around 7pm, I held him for the first time in almost 4 WEEKS! As SOON as I got him in my arms and sat in the rocker, he fell asleep and we had some MUCH needed snuggle time! :) Tomorrow they will try starting his feeds again and work him up to full feeds. Then the next step will be weening him off the high flow and O2. Then we should be close to being on our way out the door! Praise God for all he is doing with our family! I have not felt this peaceful in a while and it feels good! Thank you everyone for your love prayers and support while we are on this bumpy ride! Please continue to lift Noah up as he gets stronger! Thank you!!!